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Children and Young Adults With Fibromyalgia and Overlapping Conditions

 

Fibromyalgia in Children

2007 Jane Kohler-Lutz

While Fibromyalgia affects over 5 million Americans, it is a little known fact, that one sufferer out of every six, is a child. Fibromyalgia affects children the same as adult sufferers, with chronic pain, fatigue, lack of restorative sleep and stiffness. The criteria for tender points in children is different from that of adults. A diagnosis for a child can be based on as few as 5 tender points,   most commonly located in the neck, chest, hips, thighs, and buttocks.

Currently, Fibromyalgia can not be detected by any known lab tests. The doctor will most likely have you take your child for x-rays, scans and blood work, for the purpose of ruling out other conditions that mimic Fibro, such as MS or Lupus. Once other disorders have been ruled out, a diagnosis will be made, based on the child's symptom history and the location of tender points. Doctors and parents have learned that growing does not hurt, complaints of chronic pain, soreness, fatigue, lack of sleep, and depression should be taken seriously by the parent, and the childs health care provider.

Fibro symptoms in children usually start during adolescence, between the ages of thirteen to fifteen, with girls more likely to develop the condition than boys. Fibro is known to be passed on by genetics, if you as a parent, or other family members suffer from Fibro, your child is more likely to develop the disease. Research shows that children with other, pre-existing condions may be at risk of developing Fibro, conditions such as Irritable Bowel Syndrome, Premenstral Syndrome, or Sleep disorders.

Your child may not have the words, or experience needed to explain their symptoms, and pain, in terms the adults in their world can understand. It may fall on you, the parent, to understand and advocate for them with health care professionals, family members and educators. Don't assume that your doctor will know what to look for, tell them everything that is affecting your childs life.   Including, but not limted to:

  • Lack of sleep, or consistent fatigue despite a full nights sleep.

  • Constant aches, chronic pain.

  • Problems with the digestive system.

  • Inability to function after physical exertion.

  • Brain fog, the inability to concentrate on school work or remember details.

  • Heightened skin sensitivity.

  • Headaches

Treatments for fibromyalgia in children may include physical therapy, exercise and medication. The most common medications used are for restoring the sleep pattern, prescription pain medication is VERY rarely used.

It will be important to remember that your child may suffer from depression. It is equally important to realize that the depression is a result of the constant pain and fatigue, not the cause of it. Anyone living with pain, fatigue and memory problems everyday is susceptible to depression. Antidepressants and counceling can be useful tools. It is important to reinforce the fact that your child is not to blame for the changes in their life. They will not understand what is happening to them and uneducated friends and family members may say things that could raise feelings of guilt or shame in a child. If anyone insists that your child is faking it, or is just lazy or unmotivated because they can not walk the whole zoo, or play a game of baseball or do their homework in one sitting, it will fall on you to support them and advocate on their behalf. It is important that you educate their teachers, friends and families on their condition and limitations. Be your child's best ally, always strive to keep them guilt free as they deal with people outside of your immediate family.

It will fall on you to adjust your childs life and day to day activities. Depending on the severity of your childs illness, you may have to cut out certain activities and change their schedule.

All children with Fibro will need:

  • Love and support

  • Therapy

  • Exercise

  • Cognitive-behavioral therapy

  • Medication

  • A healthy diet.

  • Avoidance of over exertion

Online Support

The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance. This is an email based support group.

Pain, Pain Go Away: Helping Children with Pain is a booklet to help parents understand pain.

Pediatric Pain Letter ( PPL) provides free, open-access, peer-reviewed commentaries on pain in infants, children and adolescents. Book reviews and announcements of events related to pediatric pain are also accepted. Links are provided to PubMed abstracts for citations in PPL. Sign up for the newsletter.

SleepyTeenzzz discussion group A web-based forum for young people with CFIDS. View their website.  SleepyTeenzzz website.

CFS-20s  An online support forum for those in their 20's with CFS/ME/FMS. This list is unique in that it allows your spouse or significant other to join as well for support and a better understanding of what you are dealing with. To subscribe, send the following command by e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-20s Yourfirstname Yourlastname

Teen Fibro Support Discussion Forum for adolescents and their parents

CFSCFS-20s  An online support forum for those in their 20's with CFS/ME/FMS. This list is unique in that it allows your spouse or significant other to join as well for support and a better understanding of what you are dealing with. To subscribe, send the following command by e-mail:
Address: listserv@maelstrom.stjohns.edu
Subject: [Leave this blank]
Message: subscribe CFS-20s Yourfirstname Yourlastname

Fibromyalgia affects over 5 million Americans. About one in six of those are under 18. That's almost 1 million kids and teens in the United States alone. More.

WHY CHILDREN WITH CFS ARE OFTEN OVERLOOKED Authors Rebecca C. Moore and Frank Albrecht, Ph.D., discuss some of the reasons that these children are so difficult to diagnose. “Suppose you’re a mother who enjoys normal good health and your female adolescent says to you: ‘Mom, I’m awfully tired all the time. And my bones hurt, or something. And I feel like I can’t think straight anymore. I feel weird.’ What might you think?
Read Article.

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Online Support For Parents/Caregivers

Parenting Kids with FM

Parents/Caregivers of Young Persons with CFS Discussion Group (CFS-P) An e-mail list for parents of children and young adults with CFS/CFIDS/ME. Subscribe HERE Or send an email to Address: cfs-p-request@tertius.net.au Subject: [Leave this blank]
Message: subscribe your_e-mail_address

The Young Person with CFIDS Parent/Teacher Bridge Builder - Good website.Use the message board to get support and information from other parents and educators.

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Regional Support Groups

The CFIDS Association of America Find listings by state of CFIDS/CFS support groups and contacts. If you would like a list of support groups in your area, mail your name and postal address to CFIDS@cfids.org. You can also request a list via the post office by mailing the following address;   The CFIDS Association of America, Attn: Support Group Info, PO Box 220398, Charlotte NC 28222-0398.

Wisconsin Teens.

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Medical Information:


   * Pain in Children
   * The tendency to develop FMS may be inherited. Devin Starlanyl.
   * Pediatric Arthritis & Other Rheumatic Diseases. Fibromyalgia   Lucile Packard's Hospital at Standford.
   * Comer Children's Hospital at the University of Chicago has a Childrens Fibromyalgia Program.
   * Juvenile Primary Fibromyalgia Syndrome (JPFS) Cincinnati Children's Hospital Center.
   * Social context of pain in children with Juvenile Primary Fibromyalgia Syndrome
   * Guideline for the management of fibromyalgia syndrome pain in adults and children.
   * Children's Hospital of Central California addresses Fibromyalgia.
   * Abstracts for References 1 and 6-10 of 'Fibromyalgia in children and adolescents
   * A Cognitive-Behavioral Approach in the Treatment of Children and Adolescents Diagnosed with Fibromyalgia
   * Family Factors. Studies report a higher incidence of fibromyalgia among family members.
   * Children's Hospital in Boston has a Fibro program for children.
   * BNF For Children. Chronic musculoskeletal and other idiopathic pain syndromes
   * Fibromyalgia Syndrome in Children and Adolescents.
   * The Children's Hospital of Philadelphia.
   * Guideline for the management of fibromyalgia syndrome pain in adults and children

Information for Educators.

Accommodations and Modifications for the Student with CFIDS. An informative, must read article for anyone responsible for a child's education.

Tips for Classroom Teachers of Young People with CFIDS  By Kate Anderson, M.Ed.

Many people with CFIDS feel like they have the flu everyday. People with mild, insidious-onset CFIDS may feel like this only when they have used energy by studying or exercising, and even then, not always after these activities. A person with CFIDS (PWC) may experience headaches, sore throats and sore glands and feel slightly feverish or chilly from time to time.

Teachers need to understand that when the flu-like symptoms come on, the person with CFIDS can feel extraordinarily miserable and lacking in energy. They can have real trouble thinking clearly. When youngsters with CFIDS leave or miss school because of these symptoms, they deserve support and reassurance.

Fatigue attacks come and go with no apparent rhyme or reason and get in the way of good intentions and well-made plans. Over time they can cause people with CFIDS to become very anxious, sad, cranky and resentful. The most important role for school personnel is to reassure the child that they will not be penalized for time away or poor work during such periods and that there will be help provided so that they can catch up. The last thing they need is to panic or worry about such matters.

Far from welcoming the time off school, most youngsters with CFIDS are dedicated students and socially well adjusted youngsters who feel the loss of their education and contact with friends deeply. In most cases, educators need not fear that they are “enabling illness behavior” by being sympathetic and supportive when such children miss school.

Teachers can help by modifying school assignments

If a young person with CFIDS is not totally exhausted, he or she should keep the mind occupied with reading (if the student can focus), writing in a journal, watching a video or chatting on the computer with pals. Teachers can help by providing less challenging schoolwork to be done at such times, such as pre-reading a novel for English class or watching a video related to their schoolwork.

At times when a young person with CFIDS is recovering from a period of illness but still feeling a lack of energy, he or she can try to accomplish tasks such as schoolwork at home while in a resting position. If able to concentrate, the student can read and take notes on the sofa and may even write out school essays longhand this way. Teachers can assist by planning ahead with students some schoolwork that can reasonably be completed in this way. It is important for these youngsters to have small, workable goals and to feel that they are achieving them. Prompt evaluation framed positively will help them feel successful.
 

Teachers can help by accepting attempts to cope with fatigue in the classroom

Some of the physical postures taken by these tired youngsters may be mistaken for behavior or attitude problems. Even if you have previously not permitted “slouching” in your classroom, please reconsider your viewpoint for these disabled children. Keep in mind that it is best if young people can manage to stay in school and continue their education.

Due to the fatiguing effects of stimulation such as classroom noise, bright lights and paying attention to the lesson, youngsters may also find it helpful to put their heads down on the desk or take a short break once in a while.

It is typical with CFIDS to be not feeling well sometimes and feeling just fine other times. The CFIDS student may be a good worker sometimes, a poor worker other times. Please don’t force young PWCs into an all-or-nothing way of thinking about CFIDS and make them prove they are sick by acting sick all the time. That is a terrible trap that can cause a lot of unnecessary disability and make their lives much harder.

On their best days, youngsters with CFIDS may produce work reflecting their true potential. They should be provided with every opportunity to demonstrate this potential. However, they should not be made to feel that because they can do this some of the time they should be able to do it all the time.
 

A balance of activity and rest is difficult to achieve

For many young people with mild, insidious-onset CFIDS, it is not behaving sick too much that is the problem. For these people, the problem is that they do not accept the fact that they have CFIDS. They may overdo things and make symptoms worse for a while. This is not such a terrible problem. When you are young, it is very important to be active and involved, learning and socializing. These activities are an important part of developing into a mature individual. Paying for overdoing it with half a day on the sofa is not such a bad price. Teachers should be aware that participation in the school play, for example, might be very important to a youngster’s self-esteem and educational development but may require a couple of days of rest afterward.

However, if the activities of student with CFIDS make their symptoms so severe that they lose days or weeks of school, they may need to take a second look at what they are trying to accomplish. Achieving a workable balance is difficult to do at this stage of life and adults should not underestimate the pain caused by having to give up the normal pleasures and tasks of youth.
 

Coping with cognitive problems or “brain fog”

As with all learning disabilities, it is important to look at the student’s actual performance rather than plan on the basis of generalizations. Not every young person with CFIDS will be affected in the same way.

 Some youngsters with insidious onset may be completely unaware that they are having cognitive problems, as their functioning has come to seem normal to them. Other youngsters who notice the changes may keep their worries about them to themselves. They may be too afraid or embarrassed to admit they have these difficulties. Patience and understanding are called for, along with active teaching approaches to compensate or remediate.

It is common for people with CFIDS to have problems remembering simple things, like their own phone numbers or what they came into a room to get. These memory problems come and go with the other symptoms and so may not show up on testing. The memory problems make learning in school harder, but a number of youngsters successfully find ways to work around them.

  • Allow a calculator. Since memory problems can really interfere with math, youngsters with CFIDS and memory problems should be allowed to use a calculator.

  • Teach memory skills. For other subjects, a learning specialist in the school can help by teaching memory-enhancing techniques.

  • Modify the curriculum. Nearly all youngsters with CFIDS need to study harder and longer than their friends do. This may be unachievable, due to fatigue, unless the workload is cut down considerably. This is probably the most important part of an individualized educational plan for the young person with CFIDS.

  • Avoid embarrassment. A number of people with CFIDS have trouble, from time to time, thinking of the right word to use. They may pause a long time before answering a question, use the wrong word without realizing it, or use a similar word while feeling that they haven’t expressed themselves well. This can be an embarrassing problem in social situations but it should never become a source of humiliation in the classroom.

  • Check comprehension. PWCs may have difficulty grasping what people mean. Teachers can help by privately checking the student’s understanding or providing instructions in writing.

  • Permit short breaks. If a person’s ability to concentrate is related to how tired they are, taking breaks from thinking may help. It will probably work best if they can leave the learning area for a while and go somewhere that is very restful and relaxing.  
     

Some Words of Encouragement

This article has been about problems and symptoms and may seem to emphasize the negatives in CFIDS. However, you should be reassured that many young people with CFIDS have found that their experience with CFIDS has taught them some important lessons about life. These young people say that they are proud of the way they have learned to cope with CFIDS, they have acquired a greater appreciation of true friends, they have developed new friendships and hobbies, and they believe they enjoy the little things in life more than the average person. These courageous young men and women blossom into wise, mature and balanced individuals. As a teacher of a young person with CFIDS, you play a critical role in providing the continuing educational experiences that can help greatly to produce such a positive outcome.

Kate Andersen, M.Ed., who has CFIDS herself, is a parent counselor and a part-time distance education instructor for the School of Child and Youth Care at the University of Victoria, British Columbia, Canada. She specializes in parent support and education and is conducting her doctoral research on parents seeking help with the behavior of a young child.

TEACH-ME: A Sourcebook for Teachers of Children with M.E./CFS/FM - This is a recently published book available from the National ME/FM Action Network in Canada

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Medical Information

Treating pain in children

The health care profession has made strides in the areas of neonatal (newborn) and pediatric (relating to children) pain management. When treating children for pain, health care professionals should tailor care to the child’s level of development. Some additional factors to consider include a child’s:

  • Understanding of medical procedures

  • Verbal skills

  • Ability to separate from parents

Pain measurement in children
The most difficult task involved with treating pain in children is obtaining an objective and accurate measurement of pain. Most of the methods available do not apply to all age groups. No single method has been accepted universally.

Methods for measuring pain in children can be divided into three categories:

  • Self-reported measures of pain—These measures include routine questions, verbal scales, numeric scales, and pictorial scales.

  • Behavioral measures of pain—Such measures include motor responses, facial expressions, crying, and behavioral responses (such  as sleep-wake patterns).

  • Physiologic measures of pain—These include blood pressure and pulse changes, in addition to measurement of palm-sweating.

Considerations when using drugs to treat pain in children
It is important to remember that children are not just small adults. For example, they metabolize drugs differently and have a higher percentage of body weight as water and less as fat than do adults. This affects the way drugs work and also how the drugs are broken down and removed from the body.

Examples of pain relievers for children include NSAIDs, acetaminophen, and opioids. The use of NSAIDs (non-steroidal anti-inflammatory drugs) in children—except for newborns —is not much different than its use in adults. NSAIDs (such as Motrin) generally are not recommended for babies who are younger than 6 months old. Acetaminophen (Tylenol), another medicine available over-the-counter, is commonly used to treat pain in children. Most opioids (such as codeine) used to treat pain in children also produce good pain relief. These are prescription-only medicines.

While these medicines are the same as those given to adults for pain, it is important to know that the dosing is not the same for children. The dose of medicine will likely be smaller for children than for the average adult because it is based on the patient’s weight. In addition, pain medicines for children can be given via different routes (such as nasally or as lollipops).

Other drugs used to treat pain in children include antidepressants and patient-controlled analgesia (PCA). Children who are 4 to 6 years old might be able to use PCA with the help of a parent or nurse. Children who are as young as 7 can independently use the PCA pump.

Other methods of pain relief in children include epidural analgesia.

Copyright 1995-2006 The Cleveland Clinic Foundation. All rights reserved

Chronic Pain Management in Children and Adolescents Santhanam Suresh, MD

Younger Adults Do Not Appear To Cope as Well With Pain as Their Elders.A study by University of Michigan     Health System . Jan. 2005 Click Here to View entire study.

A Cognitive-Behavioral Approach in the Treatment of Children and Adolescents Diagnosed with Fibromyalgia

Overview of the November 13, 2001 session sponsored by the Association of Rheumatology Health Professionals. The team was made up of professionals who are looking for any information that might help them treat their young patients despite the abscence of research pertaining to FM and children and young adults.
Participants were affiliated with  Schneider Children's Hospital in New Hyde Park, NY. They  included: Gail R. McIlvain-Simpson, MSN, RN, CS; Beth S. Gottlieb, MD; and Pamela J. Degotardi, PhD.

Dr. Gottlieb discussed medication options and the role of the physician in treating FM.   She talks about young people wanting to remain active and how to get them to "pace" themselves as well as how to recognize symptoms. She urges care givers to search for secondary conditions that could account for some of the symptoms.

Dr. Gottleib reported that the diagnostic criteria for children and adolescents may differ from that of adults. She reports that the tender points were most often in the neck and shoulders, the medial fat pad of the knee, and the joint line of the wrist. She described   Whereas adults must have pain in all four quadrants of the body for more than three months, children must have pain in only three sites for a period greater than three months, in addition to five or more activated tender points and three of ten minor criteria. (headache, IBS, Fatigue and more).

This program features an explanation of the diagnosis discusses  treatment options.   They encourage going  to school, maintaining normal daily routines while making do  with fewer extracurricular activities.

They rely on  relaxation techniques, adjusting sleep patterns,  psychology  to instill  lifestyle changes.

At the Schneider program, the staff functions as a team made up of a rheumatologist, a psychologist, a physical therapist, and a primary care physician.

They discuss medications, trigger point injections and more. Also discussed are alternative therapies such as biofeedback, acupuncture and supplements.

They encourage the parents to play an active role in their childrens health and tell them how to stay calm.

Their initial session is two hours, and follow-up includes psychological booster sessions and monthly meetings for six months.

Click here for more information.

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Recognition of childhood depression.

Personal reminiscences.J Affect Disord. 2003 Oct;77(1):1-9.
Cytryn L. GeorgeWashington University School of Medicine 9513 Midwood Road, 20910,
Silver Spring, MD, USA

Prior to 1970, childhood depression was not considered a valid clinical entity by American psychiatrists. One of the early clues was provided in the 1950s by the author's observation of depressive symptoms in children
and young adolescents with undescended testicles. This finding was extended to children with several chronic diseases, many of whom exhibited depressive symptoms as well. Eventually, depressive symptomatology was found in children without any physical disorders.


This was followed by the introduction of a diagnostic instrument, called the Children's Affective Rating Scale (CARS), later converted into a more formal system called the Child Assessment Schedule (CAS). A provisonary classification of childhood depression was published in 1972. Our examination of children with depressive disorders has revealed
several modes of family interaction, of which the most important were: separation from important love objects; depreciation and rejection; and affective disorders in parents. Several children with bipolar disorder
stimulated our interest in this disorder and led to a pilot study of children of bipolar, lithium-responding parents. Some of these children with bipolar illness had a clear-cut response to lithium and were strong augmenters of the average evoked potentials (EPs).

Next, our group investigated the urinary excretion of norepinephrine and its metabolites
in chronically depressed children who differed from a normal control group. The foregoing studies, along with major contributions by other child psychiatrists, eventually led to the acceptance of childhood depression as a clinical entity in US psychiatry. The acceptance of juvenile bipolar disorder had to await further research by a new
generation of child and adult psychiatrists.

PMID: 14550930

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Gastrointestinal distress to serotonergic challenge: a risk marker for emotional disorder?

Campo JV, Dahl RE, Williamson DE, Birmaher B, Perel JM, Ryan ND. Western Psychiatric Institute and Clinic, University of Pittsburgh Medical Center, 3811 O'Hara Street, Pittsburgh, PA 15213, USA. campojv@msx.upmc.edu

OBJECTIVE: Serotonin is an important mediator of gut sensation and motility. The authors' aim was to determine whether inadvertent gastrointestinal (GI) distress to serotonergic challenge predicted future major depressive and/or anxiety disorders in exposed children. METHOD: l-5-hydroxytryptophan was administered to 119 prepubertal
children free of psychiatric disorder as part of a psychobiological cohort study initially designed to examine familial loading for mood disorder as the exposure of interest. Subjects were followed longitudinally with standardized psychiatric interviews to identify new-onset mood and anxiety disorders over 90.3 +/- 29.2 months, with the average assessment interval being 16.6 +/- 6.2 months. Reports of GI distress in a subgroup during serotonergic challenge led the authors to
examine GI distress to infusion as an exposure post hoc and to perform survival analysis using major depressive and/or anxiety disorders as the outcomes of interest.

RESULTS: GI distress to serotonergic challenge was experienced by 23 subjects, with 7 (30.4%) developing an emotional disorder during follow-up in comparison to 12 (10.4%) of 96
nondistressed subjects. The distressed group was at significantly greater risk of subsequent major depression and/or anxiety (p =.026), even after controlling for family history of psychiatric disorder.


CONCLUSIONS: GI distress to serotonergic challenge in childhood is associated with heightened risk for subsequent major depressive and/or anxiety disorders. Studies of serotonergic neurotransmission may aid our understanding of nonrandom associations between functional GI symptoms and emotional symptoms and disorders.

PMID: 14560172

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Education of Children with Disabilities According to administrative data from the U.S. Department of Education

5.3 million children and adolescents participate in federally supported programs for students with disabilities. This figure comprises 582,000 young children (under age 6) in preschool programs and 4.7 million students aged 6 and above attending primary and secondary schools. In all, 12.2 percent of students enrolled in American schools in the 1993-94 school year were officially designated as having disabilities.

Of the 4.7 million primary and secondary students with disabilities, just over half (51.2 percent, or 2.4 million persons; see Figure 1) are identified as having learning disabilities, while most of the remaining students have speech or language impairments (21.2 percent, or 1.0 million), mental retardation (11.3 percent, or 536,000), or serious emotional disturbances (8.7 percent, or 413,000). Smaller numbers have hearing (63,000), orthopedic (56,000), or visual impairments (24,000). The remaining 215,000 students include those identified as having multiple disabilities (108,000), "other health conditions" (82,000), and deaf-blindness (1,000).

Taken together, emotional problems and mental impairments, including learning disabilities, affect more than two-thirds (at least 71 percent) of American students identified as having disabilities. Speech and language impairments affect an additional one-fifth of students with disabilities. By contrast, only a tiny fraction (2 percent) of primary and secondary students with disabilities have sensory impairments alone.

Mainstream versus segregated education

A large majority of students with disabilities (70.4 percent during the 1992-93 school year) spend a substantial fraction of their school day attending classes with non-disabled students. Some 40.5 percent spend at least four-fifths of the day in mainstream classes; these students are identified in Figures 2 and 3 as attending regular classes. An additional 29.9 percent spend at least two-fifths of their class time with non-disabled students, with the rest of their day allotted to special education in so-called resource rooms.

Most of the remaining students, who spend between zero and two-fifths of their class time with non-disabled peers, attend separate classes in regular schools (24.1 percent of all students with disabilities). An additional 5.5 percent attend separate schools or other facilities, where they have even less exposure to children without disabilities.

Because of a strong belief in the benefits of mainstream education for most children with disabilities, as well as for their non-disabled peers, recent national policy has promoted increased placement of students with disabilities in integrated classrooms. As shown in Figure 2, the proportion of students attending integrated classes at least two-fifths of the day (regular class or resource room) has increased from 69 percent in 1988-89 to 72 percent in 1992-93. A much larger gain has been made in the proportion of students attending mainstream classes for the bulk (at least four-fifths) of the school day, which rose from about 30 percent to 40 percent during that period.

Access to mainstream education varies greatly by the nature of the disability, as shown in Figure 3. Nearly all students with speech or language impairments (92.4 percent during 1992-93) spend significant time in integrated classes, as do three-quarters (78.7 percent) of those with learning disabilities and two-thirds (66.4 percent) of those with visual impairments. Roughly half of those with orthopedic, hearing, or emotional impairments spend at least 40 percent of class time with non-disabled students (55.1, 49.2, and 46.3 percent, respectively).

Those least likely to spend much time in integrated classes are students with mental retardation (33.9 percent, with only 7.1 percent in regular classes for four-fifths of the day or more), multiple disabilities (26.5 percent), or deaf-blindness (22.4 percent).

Educational outcomes

According to data for the 1991-92 school year, a majority (57.3 percent) of students with disabilities leave secondary school as high school graduates. Most of these (43.9 percent of the total) graduate along with their non-disabled peers, receiving an ordinary diploma. The remaining 13.4 percent graduate via a certificate of completion or a modified diploma.

The likelihood of graduating depends on the nature of the disability, as does the means of graduation --- diploma versus certificate (see Figure 4). Students with sensory impairments are the most likely to graduate, with nearly three-quarters of such students (73.0 percent of those with hearing impairments and 72.6 percent of those with visual impairments) doing so, mostly with standard diplomas. Almost two-thirds of students with orthopedic impairments, mental retardation, multiple disabilities, and learning disabilities graduate (66.2, 63.8, 63.0 and 60.5 percent, respectively), but only 36.1 percent of students with mental retardation and 38.7 percent of those with multiple disabilities receive ordinary diplomas. Half (51.3 percent) of students with speech or language impairments graduate, while only one-third (34.6 percent) of those with serious emotional disturbances do so, the lowest graduation rate for any identified category of disability.

Post secondary education

Department of Education statistics from 1992-93 indicate that 6.3 percent of college undergraduates and 4.0 percent of graduate and professional school students identify themselves as having a disability. Only specific causes of disability were asked about: learning disabilities, visual and hearing impairments, orthopedic impairments, speech impairments, and health-related disabilities. Because approximately 8.4 percent of primary and secondary school students have conditions from the above list, according to administrative data, it is probable that students with disabilities are less likely to go on to college than their non-disabled peers, and still less likely to continue their education through graduate or professional school.

A 1990 survey of former special education students indicated that 16.5 percent had gone on to college and 14.7 percent had entered vocational programs. Students with visual impairments were more likely than any other disability group to go on to college (53.9 percent), while those with mental retardation and multiple disabilities were least likely (2.5 and 8.0 percent, respectively).

NOTES: Data in this abstract come from:
U.S. Department of Education. National Center for Education Statistics. 1996. Digest of Education Statistics 1996. NCES 96133. By Thomas D. Snyder. Washington, DC.
U.S. Department of Education. 1995. Seventeenth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act. Washington, DC. PUBLISHER: Published by U.S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR). CREDITS: AVAILABILITY: The full text of this public domain publication is available at the Department's home page at www.ed.gov
Individuals with disabilities may obtain this document in an alternative format (e.g., Braille, large-print, audio tape, or computer diskette) on request.
For more information, please contact:
U.S. Department of Education
OSERS/NIDRR
Room 3431, FB6
Washington, DC 20202
WWW.ed.gov"
E-mail: david_keer
Telephone: (202) 205-5633
Individuals who use a telecommunications device for the deaf (TDD) may call the Federal Information Relay Service (FIRS) at 1-800-877-8339 between 8 a.m. and 8 p.m. Eastern Time, Monday through Friday.

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Personalized Oral, Jaw-Positioning Appliance Improves Childhood Sleep Apnea
January 10, 2002

(American Thoracic Society) -- The respiratory symptoms of a group of children with obstructive sleep apnea (OSA) either completely regressed or improved considerably following their use for 6 months of a personalized oral, jaw-positioning appliance, Italian researchers reported.

After a 6-month trial, the respiratory symptoms of all 14 treated patients improved considerably, with half undergoing complete regression of their symptoms. The results of the sleep study test after the 6-month trial showed that apnea-hypopnea index scores were significantly lower for the treated children but unchanged for the control group of 9 children. (All appliances of the type studied work their therapeutic action by enlarging the upper airway.)

All young people in the treated group were fitted with an acrylic resin oral bite plate for lower jaw (mandible) positioning. All appliances were designed by an orthodontist to correct each patient's mandibular malpositioning in three spatial planes. They were checked monthly by the orthodontist to monitor functioning of the oral appliances.

The research appears in the first issue for January of the American Thoracic Society peer-reviewed American Journal of Respiratory and Critical Care Medicine.

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Teen Chronic Fatigue Symptoms Studied

NEW YORK, Jan 05 (Reuters Health) -- Adolescents with chronic fatigue syndrome have characteristic changes in heart rate and blood pressure in response to changes in posture, according to results of a study published in the January issue of Pediatrics.

These findings suggest that the symptoms of chronic fatigue syndrome (CFS), such as debilitating fatigue, muscle and joint pain, headache, sleep disturbances, cognitive difficulties, and post-exercise malaise -- may be due to a disorder in the autonomic nervous system.

The findings come from a study of 26 adolescent CFS patients, ages 11 to 19 years, conducted by Dr. Julian M. Stewart and associates at the New York Medical College in Valhalla, New York.

Study participants were tested on a tilt table, a bed that can be raised from horizontal to a near-vertical position while heart rate and blood pressure are monitored. Researchers compared the CFS patients to 13 healthy "control" teenagers and 26 teens being evaluated for fainting episodes who were otherwise healthy.

The tilt test was deemed positive if the participant had a significant drop in blood pressure, with or without a decline in heart rate, or severe symptoms of dizziness, weakness and fatigue, headache, nausea, and retching.

For 25 of the 26 CFS patients, the tilt test elicited dramatic changes in heart rate and blood pressure. Of the 25 patients, 15 had tachycardia -- increased heart rate -- with significant drops in blood pressure, and 3 patients had tachycardia alone.

The other 7 patients fainted during the test as their blood pressure dropped and heart rate declined to less than 75% of the resting heart rate.

Only 18 of 26 patients with fainting episodes had a positive test, as did 4 of 13 healthy controls.

Orthostatic hypotension, or low blood pressure due to change in body position, "may contribute importantly to fatigue" in patients with CFS, Stewart and his colleagues write. SOURCE: Pediatrics 1999;103:116-121

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A Guidebook By and For Young People with CFIDS.

Pediatric researchers publish about CFS and FM By Rebecca Moore Originally published in The CFIDS Chronicle, November/December 1999, pages 19-20. A number of recent papers in the medical literature have focused on issues involving children and young adults with chronic fatigue syndrome (CFS) and fibromyalgia (FM).

Research on Children with CFIDS

Published By David M. Hoh Originally published in Youth Allied By CFIDS, Summer 1997 Volume 3, No. 2 of the Journal of Chronic Fatigue Syndrome reports on research involving children and adolescents with CFIDS

Heart Rate, Blood Pressure Problems Triggered by Standing Upright In Teens With CFS Research findings may help explain debilitating symptoms, excessive school absences

VALHALLA, NY — Researchers have found that when teenagers with chronic fatigue syndrome (CFS) stand upright, in as little as six minutes they experience orthostatic tachycardia syndrome (OTS), symptoms of which include a dramatic increase in heart rate and decrease in blood pressure, and their legs and feet can swell and turn blue.

In a new study in the August 1999 Journal of Pediatrics, Dr. Julian Stewart and colleagues at New York Medical College found that on a head-up tilt test, 92 percent of CFS patients (23 of 25) experienced OTS and the remaining eight percent (two of 25) fainted. None of the controls had OTS, although 70 percent of adolescents with a prior history of fainting and 31 percent of healthy controls fainted. In contrast to the OTS response of the CFS patients, in which standing caused the heart to race, the controls who fainted had a vasovagal response, in which both heart rate and blood pressure fell.

In addition, standing upright caused the legs and feet of CFS patients to swell and turn blue, meaning that blood was pooling in their legs, depleting the remainder of their body (most significantly the heart and brain) of oxygen. This response was seen in 80 percent of the CFS patient group, but only five percent of the fainting controls and none of the healthy controls.

The researchers also compared the CFS patients to adolescents with OTS who did not meet the U.S. Centers for Disease Control (CDC) criteria for CFS. Although they had similar heart rate and blood pressure responses to the test, the adolescents with CFS tended to respond sooner and more often have blood pooling in their legs. These may be clues to why the CFS patients were sicker than any of the other groups, missing an average of 40 percent of school days, while the OTS patients and controls only missed an average of 12 percent and five percent, respectively.

"This study helps us understand why young people with CFS have trouble standing and sitting upright, and why that makes it so difficult for them to attend school on a consistent basis," said Kimberly Kenney, Executive Director of The CFIDS Association of America. "It also provides an important clue to the pathophysiology of CFS. Additional research will determine the prevalence of this abnormality in CFS patients of all ages."

Reference: Patterns of orthostatic intolerance: The orthostatic tachycardia syndrome and adolescent chronic fatigue. Julian M. Stewart, MD, PhD, Michael H. Gewitz, MD, Amy Weldon, Jose Munoz, MD. Journal of Pediatrics, August 1999, pages 218-225

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The Desperate Moments: Suidical Thoughts By Sharon Walk Originally published in Youth Allied By CFIDS, Spring 1996

"It's like you're standing on the edge of a cliff and just one inch in front of you is this sheer drop - straight down, and you're just teetering there one deep breath away from going over." - Sisters: "A Path Through the Snow," NBC-TV

Almost everyone I know with CFS has thought about suicide at some point. In the book Hope and Help for Chronic Fatigue Syndrome, a woman was quoted as saying, "It's hard bucking illness and disbelief every day. You begin to feel very little desire to continue. I know that I have gone to bed thinking seriously, 'please God, let me go to sleep and just not wake up in the morning.'"

All thoughts of suicide, no matter how they are expressed, need to be taken seriously. Thoughts of suicide are both a wish for freedom and a cry for help. It is common for people with any chronic illness to get depressed. Sometimes people with CFS try to ignore these feelings, but there is nothing wrong with getting depressed. It doesn't mean CFS is not a physical illness, and it doesn't mean that you're crazy. Depression is a totally normal reaction to a stressful situation, and having CFS is very stressful. Although depression makes a person more likely to have suicidal thoughts, it is possible to have them without being depressed. For this article, I've decided to talk about four different situations that I feel represent the four categories that suicidal thoughts fall into. You can probably relate to one or more of these categories.

Fleeting Thoughts
First, there are suicidal thoughts without depression. These thoughts are more common than you may think. Nearly everyone, healthy or sick, has them. They often appear as a passing thought that just pops into your head out of nowhere. These thoughts can be most dangerous in people who tend to act on impulse. Although the thoughts are not really serious and you really don't want to die, if you are the kind of person who acts first and thinks later, you could do something you don't want to do. Talk to an adult who cares and to your pen pals; they will understand and may be able to help you deal with it. If these thoughts continue or become more specific (like if you have a plan), call and get some help immediately.

A Mild Depression
Second, there is a mild depression that most of us go in and out of. It worsens at stressful times, when you're extra sick or sometimes with no apparent reason. It comes and goes, usually lasting less than a couple of weeks. You can distract yourself from it and little things can cheer you up. During these down times you may have an increase in suicidal thoughts. Again, talk to your pen pals and an adult that you trust. Consider going to a support group. Going to a counselor may help you find a way to keep your mood more stable, but make sure to find someone experienced in treating young people with chronic illnesses. Your doctor or a CFS support group can probably help you find a counselor.

A Deeper Despair
Third, is a deeper, longer lasting, more serious depression. This kind of depression can be expressed in a variety of ways: changes in eating or sleeping habits, fatigue, feeling sad. All of those can also be symptoms of CFS, though. Because of that, I use the following criterion to determine if someone with CFS is deeply depressed: his or her interest in life. If you find that you are losing interest in things you usually like to do or wish you could do, that is a strong sign that you have a problem with depression. Also, you may have more intense thoughts of suicide, including thinking of specific methods and having stronger urges.

If you find yourself in this category you probably have a medical problem with depression. You should seek professional help immediately. There are medications that can help you get through it. Seeking help or needing medication is not a sign of weakness, it is a sign of strength. You are saying, "I will survive this illness, I just need some help to do it."

The Crisis Moments
Last, there are what I call crisis moments: times when your depression is so deep and thoughts of suicide are so strong that you are in real danger of hurting yourself. One CYA member told me about her desperate moment, trying to fight the urge to overdose. She had the pills in her hand. The feelings were so intense she was scaring herself.

In moments like these, you need help. And you need help right then! Almost every area has a 24-hour suicide prevention hotline. CALL!! Its staff can help you through the crisis and put you in touch with a counselor who can help you. I've been there and I promise you it will get better. You just have to get through the crisis.

Find Something to Want
This dialogue from the TV show Sisters was spoken by a character about her crisis moment. "I was crazy that night trying to find a way to do it. and I had this crummy old TV on in the background and I heard that Five Easy Pieces was starting. And I stopped to look at it, just for a second, and then I started watching, and then two hours had passed. Then the announcer said that The Last Picture Show was going to be up next, and I wanted to see that too.

"But, the point is that I wanted something. Even something as dumb as an old movie on TV. And the next day it was something else, and the day after that, and the day after that. Until I found myself actually looking for something to want because I knew that was what was going to keep me alive."

You see, there is always something to want, a reason to keep going. Seeking help during a crisis moment is a sign of your inner strength, of still having - or wanting to have - a reason to keep living, despite battling CFS and emotions that are difficult to work through.

Trust in your friends who are also fighting CFS. Turning to counseling or other medical help is not saying that you don't want to confide in your friends, but that you need more help than they can give. They will understand when you tell them that your feelings have gotten persistent or frightening, and they will not let you down. They, too, have experienced feelings of sadness, frustration or helplessness during difficult times. Share your feelings and work through them together. By sticking together we will all be able to survive the bad times. And, finally, never give up!!!

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Resources for, Parents, Siblings and Friends.

ADVANCING CIVIL RIGHTS FOR PEOPLE WITH DISABILITIES CHILDREN WITH DISABILITIES AND FAMILY SUPPORT SERVICES

Gearing Up for School For Parents of YPWCs By Lynn Vanderzalm

Impact of CFS

CFS has wide-ranging effects on patients, their families, friends, employers, coworkers and society, the most common of which are described below. The overall treatment plan must address these life-altering changes and the patients emotional reactions to them.

  • Patients: By definition, CFS results in substantial reduction in previous levels of occupational, educational, social and personal activities. Patients may experience problems coping with the debilitating, variable and unpredictable symptoms; decreased stamina; difficulties with memory and information processing; uncertain prognosis; loss of independence, livelihood and economic security; alterations in relationships with family and friends; and feelings of isolation and abandonment. All of these issues can add to existing stress, which can exacerbate the symptoms of CFS (Lutgendorf et al., 1995).

    People with CFS may feel traumatized and stigmatized because family, friends, medical practitioners, employers, coworkers and others do not recognize the incapacitating nature of their illness (Shlaes, Jason and Ferrari, 1999). Some people with CFS report expending considerable time and energy proving or justifying their illness and impaired function. Patients may also worry about bearing and raising children and the potential impact of decreased sexual activity on intimate relationships. Additional information on this topic can be found in  Appendix B (PDF – 65 KB).

    Finally, depression is common in people with CFS. Feelings of worthlessness, inappropriate guilt, recurrent thoughts of death, recurrent suicidal thoughts, having a specific plan for committing suicide and prior suicide attempts define major depressive disorders. Behavioral health professionals in particular should be aware of and address signs of depression as necessary. All professionals who provide treatment and rehabilitation services for CFS patients should understand that inappropriately or inadequately counseled CFS patients could become suicidal.

  • Children and Adolescents: Adolescents and children may also develop CFS, although it is identified less commonly in people younger than 18 years than in adults (Jones et al., 2004; Mears et al., 2004). The 1994 definition was designed to identify adults with the syndrome, and these criteria may not be entirely adequate in assessing CFS in younger people. The unique aspects and challenges of chronic illness in youth, including CFS, warrant special mention.

    • Young people may not perceive or report medical information the same way adults do. They may use different words to describe their symptoms or may not have a complete understanding of their symptoms or emotions. Some ill youth lack a sense of normal and do not perceive their symptoms as indicative of an illness process.

    • Parents or guardians may be the main source for reporting health information. Adults observations may differ from the feelings and experiences of the child or adolescent (Jones et al., 2004). Consideration of information provided by both parents and children is recommended.

    • Damaged social relationships and isolation are common consequences of chronic illness in youth, and this is particularly problematic in adolescence. Efforts should be made to help the adolescent build and maintain relationships with peers and participate in enjoyable, age-appropriate activities.

    • School absenteeismparticularly in the early stages of illnessis common among children and adolescents with CFS. Absenteeism combined with problems in memory and concentration that accompanies CFS can result in delayed educational progress.

    • Students with CFS may qualify for educational accommodations under the Individuals with Disabilities Education Act or the Rehabilitation Act (U.S. Department of Education, 2004, section 2). Health professionals can help schools and families work together to develop appropriate educational plans for students with CFS. These may include reduced schedules, home tutoring, alternative test-taking conditions and counseling. The need for and effectiveness of alternate education strategies should be reviewed regularly because the goal of therapy is return to full participation academic, development, social, intellectual); as this is achieved, alternative education is not only no longer necessary, but may complicate full development.

  • Family Members and Friends: Chronic illnesses, such as CFS, affect not only the individual, but her/his family members, caretakers and friends as well. Health care professionals should be alert to such family problems. Behavioral health care professionals should identify and address any underlying family problems that contribute to symptoms or result from having a sick child in the family. Identification of these problems is key to instituting appropriate therapy. Family reactions can range from skepticism to overprotection. Family problems may be particularly important in CFS because healthy people find it hard to understand the variability of the symptoms and unpredictability of function, particularly since there are no overt, visible signs of illness. CFS may cause a person to cancel plans or fall behind on duties or obligations, leading to further frustration and anger among family members and friends. Family members should be encouraged to participate in the treatment program.

    Children of people with CFS can be deeply affected by a parents illness. Common issues include fear that the parent will die and abandon them, frustration or embarrassment that the parent is not like friends parents, and concerns about genetic risk or contagion. In families with an adult ill with CFS, professionals need to be aware of the impact on the childs health and the potential projection of the adults illness onto the child. Healthy siblings of youth with CFS can feel that the person with CFS receives a disproportionate amount of the familys attention or that they are expected to carry a greater share of the familys load (Jackson, 1999).

  • Employers and Coworkers: Frequent absences, uncompleted obligations, problems with memory and concentration, increased errors due to cognitive impairment, decreased physical and mental stamina and escalation of pain can cause problems in the workplace. The lack of obvious physical signs of illness can lead to accusations that the person with CFS is fabricating symptoms to avoid responsibilities. Finally, accommodations by the employer may cause resentment, misunderstandings and claims of special treatment by coworkers.

Although federal laws protect the rights and jobs of the disabled who are able to perform their essential job functions, the emotional and social aspects of having a person with an invisible disability in the workplace are not addressed by the legal system. The Job Accommodation Network has a fact sheet on accommodations for people with CFS (Loy, 2006, section 4, Accommodating Employees with CFS); see the Additional CFS Resources listed in  Appendix B (PDF – 65 KB) for information about this and other employment-related resources. A referral to an occupational therapist may be worthwhile for people experiencing difficulty in the job setting.

Please note: Some of these publications are available for download only as *.pdf files. These files require Adobe Acrobat Reader in order to be viewed. Please review the information on downloading and using Acrobat Reader software.

Benefits For Children With Disabilities.   New!  This booklet is written primarily for the parents and caregivers of children with disabilities and adults disabled since childhood. It illustrates the kinds of Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and explains how we evaluate disability claims for children.Millions of children already get benefits from Social Security. This will help you decide if your child, or a child you know, is eligible for Social Security or SSI.

Attending School with CFIDS/FMS. Hints, tips and a letter you can ask your doctor to sign to explain your condition and limitations to the educators.

The Three Ways A Child Can Get Benefits From Social Security Or SSI

CFS and School Success: What parents can do. An explanation of law 94-142. Special education needs and more.

The Young Person with CFIDS Parent/Teacher Bridge Builder - Good website.Use the message board to get support and information from other parents and educators.

Parents Share Ideas For Educational Planning   by Mary Robinson, MS Ed Published in Lyndonville News, September 2001 

I often find myself talking to other parents of children with CFS about plans they have put into place for their child's education. Usually it is the case that I am making suggestions of modifications and accommodations that we have tried or heard of to assist the parent in enhancing their child's educational plan. But sometimes I have parents share ideas with me that leave me feeling that this is an excellent idea and I need to pass this one on. So that is what this month's column will do. I am passing on a few good ideas of plans that are in place in some schools in the US that may help you to jumpstart a new approach for your child's education. Please understand that while a program may work very well for one student it may not be an option for another. Not only do the regulations vary from State to State on what is required for a High School Diploma, but also it varies within each state, District to District. It has been the case in some instances, however, that an understanding and supportive parent has presented an idea to their district and because it was well thought out and doable it was accepted as a consideration for the child in that district. Just because it has never been done before, does not mean it can not be done now.

The first idea was shared with me last January in Seattle at the AACFS Conference. I was given a very interesting brochure from a mom of a high school boy with CFS who is earning part of his credits from a "Contract Studies Program." This is an independent studies program of the Bainbridge Island School District near Seattle. As the brochure states, "The Contract Studies Program is a personalized, individualized academic program supporting students in achieving their high school diploma. Central to this mission is establishing strong academic standards that meet the Bainbridge Island School District's graduation requirements." The program is used in grades 6-12 and involves an individualized learning plan where parents accept a central role in coordinating the daily operations of the plan. The school staff facilitates and evaluates the learning components of the plan and the student meets on a weekly basis with the staff to share progress and the time spent in learning. An advisory committee reviews the work to assure that it complies with the District's curriculum framework. Grading is done on a pass or no credit basis. The student who introduced me to this program was using it for his Physical Education Requirement. His mother stated that he was able to count short walks out in front of their home as a PE activity under the Contract Studies Program and many normal every day activities were included. I have talked to other parents who have used programs similar to this to help their child to earn credit in classes such as art, music, and computer skills. With a supportive school system it seems that there are many ways a program like this could be used. The brochure states that for more information on this program you can email Catherine Camp, Administrator for Alternative Programs at ccamp@bainbridge.wednet.edu or Penny Tyrrell, Secretary for Alternative Programs at ptyrrell@bainbridge.wednet.edu. They can also be reached at Contract Studies, 9530 NE High School Road, Bainbridge Island, WA 98110 (206)780-1646.

The second parent I talked to impressed me greatly by the amount of involvement that she and her husband had in the development of their son's IEP. As I have said in the past it is critical to the education of our children that we, as parents, develop a positive working relationship with the personnel at school. We may grit our teeth and scream at home, but at school we need to do all we can to build bridges and to develop a rapport with the staff that encourages ongoing communication and cooperation. I have been on both sides of our love/hate relationship with schools in the past, and I can tell you that it is not always easy. There are many emotional issues for the parent and when someone appears to not care or to try to understand, our worst sides can come creeping to the surface. I have always tried to maintain a positive, respectful attitude, even when I did not feel I was being understood. But in the end we have always prevailed. We have stuck by our requests and have been very determined at times to have our needs addressed, but we have tried to do so without antagonizing anyone. I cannot say enough about how important this is. To be your child's advocate is the most important role you will take on in this illness; their advocate at school, with doctors, with family, in the world. And if we do our job well, we will prepare our child to go into the world better prepared to be a successful advocate on their own behalf when the need arises. In reading the Individualized Educational Plan that follows I could see two parents who excelled as their son's advocate. They had learned the laws and knew their son's rights. They presented his educational needs in a way that made the teachers truly understand how his condition impacted his education and what the school could do to accommodate for his limitations. Now on to this boy's IEP and the areas I felt well addressed and worth sharing.

First off I noted the length of the IEP. It is about 30 pages long using standard forms to check off things. If you look at IEPs from different districts, you may find one is a couple of pages and another is a book. Our district's run about 4-5 pages and keep things brief. They offer the same protections, but are just written up differently, so do not worry if your district is like ours. As long as the team has addressed all the parts of the IEP that is what matters.

In the aforementioned IEP 2 pages of background were included with teacher/tutor comments. In short paragraphs this boy's progress was outlined for the year, including his learning styles and how the illness impacted on his learning. I found this a remarkable and easy way to share with the teachers how this child's education is impacted by CFS. For Example one section notes, "John has a strong innate ability. The tutor reported that John does not like completing alternate projects because he finds it difficult to sit up for extended periods of time. The tutor found concentration to be his greatest weakness. During a week that John was not feeling well, she tutored him approximately 5-6 hours. During a good week when his energy level was better, she tutored him approximately 10-12 hours. Input from John's Grade 9 teachers describe John as alert and an active participate in class discussion when present on "good days." On "bad days" the teachers stated that he often put his head down on his desk. Subtle cues and teacher movement around the classroom were found to be helpful to allow him to stay on task. Attendance for the previous school year varied from term to term and from class to class."

On a separate page general information was shared beginning with a "good days" vs. "bad days" list. It states "The tutor reports that on a good day John is able to concentrate better, produce some written work, ask appropriate questions related to the material and work for approximately 2 hours with one to one instruction (while lying on his back 75% of the time). John's tutor reports that the following accommodations have been most effective on good days in the home tutoring environment: allow John to lie down, scribe, cues to keep him on task, condense material, open book tests, outlines, multiple sessions for tests. Following on this page were sections on Course Communication and how the work will be exchanged, and issues of Confidentiality as to John's health status, and The Role of the Tutor are outlined as to the type of contact and how often she will communicate with Special Education Teacher, classroom teachers and the Education Consultant. The final category deals with the testing and teaching modifications and accommodations and outlines why such things are needed.

At this point you may be saying that this IEP shares a great deal of personal information about the student, in terms of health, specific learning issues etc. Some schools may prefer to keep some of this information out of the IEP, and may even refuse to have it in there. I am just sharing with you the way this particular school has done it. However if your school is like mine, a much shorter IEP will be found. This too has it's benefits as it is easier for a teacher to review and see at a glance what is needed. A long detailed document may not receive the attention a shorter one may. But I still like John's IEP because I feel it makes this child's learning styles and habits a matter of the academic record. It makes it easier for a teacher or educator to pick up this IEP and to get a handle on why John needs these accommodations or modifications. In my opinion it would ease the task of the parent to continually need to be reeducating the teachers and staff on the impact of this illness on the child and the necessity for implementing the IEP. John's IEP continues to outline what modification is requested with a personal line on why it is needed. I personally LOVE this. As a parent I often find myself justifying areas of the IEP and explaining why parts are in there that may not be needed in Sept, but will be necessary come January. I plan to write up an addendum to my daughter's IEP that will include the information noted above on her personal learning characteristics and styles. I also plan to explain how the illness impacts her education and how and why we have accommodated for these areas.

John's IEP also does a fantastic job outlining the goals and objectives course by course. The IEP team copied the regular course requirements and made notations as to modifications for John such as omit requirement 5 & 6. The goals and objectives in our daughter's IEP are vague and I would like to use the format of John's IEP to amend our daughter's.

A third parent who I am in touch with via email offers a new perspective on tutoring. She suggests the concept of teaching by telephone. In her experience telephone teaching with brief sessions (making sure all systems are established like volume control and that the teacher understands the condition, etc) really WORKS! She states it is an option to consider in drastic cases. They have used this option with their daughter for the times they had previously had to cancel the tutor but later found their child feeling better. I also heard of an instance where a child had no tutor and a teacher/friend tutored her long distance over the phone until a real in home tutor could be found. The internet and email or instance messaging are other tools that our children may be quite comfortable with, and can adapt to use with teaching/homework. While these are alternatives to the normal one on one situation that tutoring provides I do not advocate that these be substitutes for this personal one on one contact. I guess the suggestion is to look outside the mold. If you have no tutor at all and the school is dragging their feet on providing you with one then an alternative approach is better than doing nothing. What works for one, may not work at all for another child. But if we are all willing to look at our individual child's strengths and weaknesses and to be creative, we may be able to come up with some new innovative ways to approach teaching, tutoring and homework.

This past year I also became aware of programs that are taught on line via computer that can help a child earn High School and College credits. As the online world spirals in our life there will be more and more options available to our children via computer if we are only willing to go searching for the programs that may assist them in their learning.

Sometimes as desperately as we want a public education to work out, it is just more headaches and heartaches than we can deal with. Sometimes there is so much animosity with the school, or the child is so ill, that tutoring or school attendance on a regular basis is just not possible. Or there may be an ill parent in the home and the role of advocating for the child with the school becomes an insurmountable task. In these instances some parents have opted for home-schooling curriculums. As one Mom of an 11 year old wrote to me, "I miss that exciting beginning of the new school year but I'm hoping that she won't have to start with high hopes and fail as she has every year since 2nd grade. She's sleeping nights and up days now but we don't know what she'll be able to manage. Being home is so much easier for her than going out, so maybe she'll be able to do a little more this way. We've got a Waldorf home-schooling curriculum, which I'm adapting for her to reduce the amount of reading and writing. I'm organizing it into short packets that she can do at her own pace and be able to finish. The school never got the idea of what to do with her. She said they were just waiting for her to snap out of it. She had a terrific home tutor for 3rd and 4th grade but she left. The one last year was not so good. We are not sure how the peer thing would work out at this stage either now that she is in Middle School. The kids seem to be less accepting when she does see them. She can see kids in a home-schooling group if she feels up to it."

This mom also noted in another note "I've noticed that I am getting a sense of when she can and cannot work. It is as though a window is open for a time and then abruptly closes and no more can go in. She can now let me know this is happening, and as long as I don't insist she go on, we are ok. I can feel the difference as I work with her. The emphasis in school is to get the kids to do more and more work, but she can't do this yet. It reminds me of PT for many PWCs it's not a matter of increasing activity level but just doing what they can do without exhausting themselves. The other thing I've noticed is that she needs to learn in the ways that come most naturally to her. If she was feeling better, she would need to accommodate to the way things are presented but she just can't be that mentally flexible right now. For her, this means I have to focus on concepts and let her verbalize her ideas and fit new information into what she is thinking about. Since I tend to be a detail person, this is quite a challenge."

I guess the bottom line of all these ideas is that, as parents, we need to really fine-tune our efforts as our child's advocates. We need to go the extra mile to really figure out what it is that our child needs to excel. Do they need an extra accommodation? Do they need a different approach to teaching available to them? And as parents do we know the answers? Do we know and understand our child's rights as they pertain to their education? Do we know their best learning styles or habits? Do they study better in a supine position or at a desk in the same place each day? Do they need moderate/natural lighting? Do they do better when they are read to as opposed to reading material alone? Are there things that can be done to their environment that helps them to be more productive? My guess is that most parents do not know the answers to all these questions. I encourage you to not only talk to the school and your child's teachers and tutors, but talk to your child. Ask him/her to tell you how they learn best. What helps, what hinders and what can you do to make things easier for them. I have found I learn much more from listening to my child, than by observing her. When asked she can be extremely articulate in explaining how she learns best and roadblocks that make things more difficult. I also find I need to write down what she says so that I can better present it to the teachers when the time arises. I do not have the illness, and as good days melt into bad and back to mediocre, I forget what she said. I for one am going to take the suggestion from this column's IEP of John's and put in writing many aspects of my daughter's learning strengths and learning styles. I hope you too have found some ideas to enhance your child's educational plan and have strengthened your resolve to assist your school in developing and implementing the best plan possible.

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Links to Other Great Sites

The Health Site.org. School health projects. Teen reporters, updated information.

Running a Support Group for Youth and their Families

Juvenile Fibromyalgia and CFIDS. Site has up to date studies and information about children, teens and young adults.

Teen & Young Adult Guide to FMS. This is an excellent site for information, support, suggested reading and more.

Starting a Support Group for Youth and Parents

Patchworx Online Community provides fun and support for young people with disabilities and chronic illness.

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Childhood ME A Report by an Independent Group of Advisers

Edited by Dr Anne MacIntyre

This document forms part of the material being used as "work in progress" by the
Chief Medical Officer's Working Group on CFS/ME

Jane Colby LAMSC; Cert Ed
Dr Alan Franklin FRCP; FRCPCH; DCH; DRCOG
Dr Anne MacIntyre MB; ChB
Dr Lyn Michell MSc; PhD
Jill Moss BA; MEd (Special Needs)
Jacqueline Siner BA; MA; MSc; CPsychol; AFBPsS
Dr Nigel Speight MA; MBBCh; FRCP; FRCPCH; DCH

February 1999

For further information on specific contents, please contact:

Dr Alan Franklin (Medical Section) at the ME Association
Jane Colby (Education Section) at Young Action Online
Jill Moss (Social Services Section) at AYME

1     Introduction

2     Medical Section
2.1     Clinical presentation and diagnosis
2.2     Neurocognitive and psychological problems
2.3     Management
2.4     Epidemiology
2.5     Prognosis

3     Education Section
3.1     Introduction
3.2     Purpose of education
3.3     Effects of ME on cognitive function
3.4     Effects of ME on physical performance
3.5     Implications for school based learning
3.6     Special educational needs
3.7     Wider implications for education
3.8     Joint health-education plans
3.9     Social education
3.10     The multidiscliplinary approach
3.11     Statementing
3.12     Assessment and examination
3.13     Post 16 education
      Appendix to education section

4     Social Services Section
4.1     Statutory social services
4.2     Non-statutory social support services

5     Service Facilities

6     Summary


Appendix A     Case Studies

Appendix B     Authors and Referees

Appendix C     Diagnostic Descriptions
1     Clinical features of myalgic encephalomyelitis (ME) (Ramsay 1986)
2     Diagnostic criteria for chronic fatigue syndrome (Fukuda et al 1994)
3     References
4     Resources

1 Introduction

Background to this document

The National Task Force on Chronic Fatigue Syndrome / PostViral Fatigue Syndrome / Myalgic Encephalomyelitis published a report in September 1994. This was followed by a report from the Royal Colleges of Medicine, Psychiatry and General Practice, published in October 1996. Although there were sections in each report about the illness in children and young people,
it has become evident that there is a need for more detailed information about diagnosis, management, and education of young people with ME. These guidelines have been written by members of the medical and educational
professions who understand the problems this illness causes for children and their families.

In recent years, ME/CFS has increasingly been accepted as a clinical entity. In July 1998 the Chief Medical Officer, Sir Kenneth Calman, announced before retiring that the Department of Health recognised the existence of this illness, and that a working party would be established to produce advice and information .

Our intention is to provide information about the existence and diagnosis of the illness in children, for all professionals and families who are involved with young people suffering from ME. Although in these guidelines published evidence is referred to where it exists, much of the information is distilled from the clinical experience and observations of practising
paediatricians who have cared for many young patients with ME/CFS.

Names of the illness

An illness with clinical features of muscle pain, neurocognitive problems and exercise induced fatigue has existed for centuries. In the 20th century, epidemic outbreaks were recorded from 1934 until the 1950s. Earlier names included 'English sweats', 'epidemic neuromyesthenia', and 'atypical polio'. The term myalgic encephalomyelitis (or ME) was coined in 1956, (Ramsay 1985)
following a series of world-wide outbreaks, and ME has been well documented in children. The name chronic fatigue syndrome (CFS) was preferred for the diagnostic criteria developed in the USA in 1988. CFS is the name used by
doctors internationally, especially for research, however, the illness is still called ME by patients and many doctors. We believe the name 'myalgic encephalomyelitis' (or encephalopathy) is more appropriate than 'chronic
fatigue syndrome', as it describes a specific condition with muscle and neurological symptoms, not only fatigue. In this document both names may be used.

Clinical observations and research evidence point to ME being a real, organically based illness which affects many organs in the body but particularly the brain. As with neurological disorders such as brain tumour or multiple sclerosis, ME may produce bodily and neuro-cognitive symptoms. The brain disturbance leads to cognitive problems, autonomic nervous system
dysfunction, and emotional symptoms. Secondary psychological problems due to the effects of the illness may complicate the picture, as with any chronic condition.

Most paediatricians with an interest in this illness comment on the remarkable resilience of children with ME. Many children and their families show no psychological disturbance, in spite of sometimes severe and prolonged illness in the child. However children with ME do become very frustrated that they cannot take part in normal activities at home and at school.

The most important first step is to establish the diagnosis. Medical management is based on recognition of the symptom picture and hence diagnosis, followed by an explanation about the illness, with symptomatic treatment and support by other professionals. The majority of children make some recovery, especially if they are emotionally supported and allowed to rest. However in a few children, ME may lead to chronic illness and severe disability.

Potential problems for any child with long term illness include loss of schooling and social contact with peers. There are conflicting needs of ensuring some level of ongoing education, while allowing the child to recover without being pressured into returning to school too quickly, or meeting unrealistic goals. Some pupils may be too severely affected to contemplate any form of education.

"No-one who has experienced this illness, or who has had the responsibility of caring for a family member who has the misfortune to suffer from it, can have any doubt not only about the extent of the pain and distress it can cause, but also as to the disastrous effect it can have on social relationships and life in the community. This is particularly the case among child sufferers, for whom the effect upon their educational development and social well-being may be catastrophic, particularly when child and family encounter unsympathetic professionals. The consequences may last for years". (Pheby, 1997)


2 Medical Section

2.1 Clinical Presentation and Diagnosis in Children and Adolescents

    "Without diagnosis there is no rational treatment" (Carl Gerhardt 1873)

2.1.1 Diagnosis is important

One of the greatest sources of anxiety to many parents is to observe a sick child whose illness is not recognised and named. Parents may fear their child has a serious or malignant disease which the doctor is missing, and to be told "all the tests are normal" without being given a diagnosis can be extremely frustrating. Furthermore, when children are unwell, but at the same time their illness is not validated or is undiagnosed, this discrepancy may affect how they are treated by both family members and professionals.

2.1.2 Diagnostic criteria

Special diagnostic criteria for children and adolescents have not yet been defined. The diagnostic criteria for CFS in adults (Fukuda 1994) were defined chiefly for research purposes. Young patients may not always fulfil CFS criteria, and yet still have a typical clinical picture of ME/CFS. (See Appendix C for description of ME - Ramsay 1986 - and the CDC 1994 criteria for CFS). There are some clinical features in children that are different from those in adults, especially in children under 10 years of age. The
onset is often more gradual in young children, and their daily behaviour is more variable, without a clear history of an initiating infection. Certain symptoms - intractable headache, abdominal pain, loss of appetite, and nausea - are more common in children. There is no clinical difference, once the illness is established, between children whose onset is rapid, usually following an acute febrile episode, and those with a gradual onset, as is seen more often in young children.

The diagnosis is more difficult in young children because they cannot articulate symptoms such as fatigue and cognitive difficulties. Parents and teachers need to observe and assess symptoms such as onset of pallor and exhaustion, both in and out of school. Their observations of children or pupils whom they know well should be respected.

It is better for the child and family to allow for a firm diagnosis after 2 to 3 months of symptoms, instead of the minimum of 6 months as required for adults (Royal Colleges 1996), because good management can be instituted early in the illness and might prevent further deterioration.

2.1.3 Common Symptoms and Signs

   1. The commonest feature for diagnosis of ME is persistent fatigue. This is better described as exhaustion, asthenia or weakness, which is usually post-exertional, developing up to 3 days following moderate effort, and is not relieved by rest/sleep. The fatigue may appear as orthostatic intolerance1 (dizziness or faintness when upright) rather than simple tiredness or sleepiness. The fatigue may be physical or mental, can be severe and often fluctuating, and leads to significant reduction in normal activities.
   2. Severe malaise (feeling 'poisoned'), particularly following physical or mental exertion
   3. Persistent headache, not responding to painkillers.
   4. Disturbance of normal sleep pattern. Hypersomnolence is commonest initially, often progressing to sleep reversal, or else insomnia.
   5. Neurocognitive disturbance is invariably present (e.g. loss of attention, concentration, and short-term memory, forgetting names, inability to understand a written paragraph).2
   6. Visual disturbance (eye pain, blurring, especially when reading).
   7. Sensitivity to sound and/or light.3
   8. Recurrent sore throat and/or swollen glands (misleading in children, who develop them with every infection. Prolonged adenopathy may need investigation to exclude TB or malignancy).
   9. Muscle or joint pain, especially of lower back and lower limbs.
  10. Nausea, abdominal pain, loss of appetite.
  11. Balance disturbance, or dizziness on sudden change of position.
  12. Altered subjective temperature regulation (inappropriate sensations of fevers or chills, night sweats), and maybe objective reversal of sleep/temperature rhythms.
  13. Facial pallor, especially with the onset of severe fatigue (Ramsay 1986).
  14. Altered skin sensitivity, paraesthesiae (numbness, tingling), transient rash..
  15. Mood changes (irritability, depression, anger and frustration) that are out of character.

1  Measured by recording blood pressure recumbant, then at 5 minute intervals standing still. In health, blood and pulse pressures can be maintained while standing for at least one hour.
2  This disturbance of neurocognitive function can cause acute distress to adolescents who are usually keen to return to school, but find they are unable to function normally. It is not appropriate to return a child to school immediately, without further educational assessment. That this disturbance is part of the illness and not due to psychiatric co-morbidity has been confirmed by Deluca and colleages (Deluca 1997).
3  These are part of the great difficulty children with ME have in coping with normal input - whether cognitive, visual, aural or visceral - because of rapid brain fatigue.

A marked feature of ME is the fluctuation of symptoms from day to day, and the tendency for relapses and remissions over months. There is a combination of key symptoms that is remarkably similar from patient to patient: Post-exertional fatigue, malaise and cognitive dysfunction are invariably present. It is important for medical professi onals to recognise the multiplicity of symptoms that commonly occur, as well as 'fatigue'.

Severe cases of ME. The more severe forms of the illness in children and adolescents include symptoms such as dizziness, unremitting headache, severe muscle spasms that may require splinting to prevent contractures in the hands or feet, shaking episodes or pseudo-seizures without loss of consciousness, difficulty swallowing and paresis or paralysis of limbs, bladder irritability and a disturbed mental state.

2.1.4 Differential Diagnoses

Conditions which may be confused with ME/CFS should be excluded:

   1. Anaemia (severe)
   2. Immunodeficiency conditions (AIDS may be congenital in young children)
   3. Chronic infection e.g. TB, toxoplasmosis.
   4. Migraine
   5. Hypothyroidism, hypopituitarism, and Addisons disease
   6. Juvenile rheumatoid arthritis (Still's disease)
   7. Chronic renal disease
   8. Chronic hepatitis
   9. Crohn's disease
  10. Gluten sensitivity
  11. Cerebral tumour
  12. Subdural haematoma
  13. Anorexia nervosa
  14. Chronic abuse (all kinds)
  15. Childhood depression
  16. Somatisation
  17. School phobia

Many of these conditions are rare, but may be worth excluding in individual patients.

ME/CFS compared with Depression, Anorexia Nervosa, School Phobia, and Somatization.

It is important to distinguish ME from primary depressive illness (which can occur in childhood), anorexia nervosa, and phobic anxiety state. Primary depression in childhood may be difficult to diagnose, and severe depression
in childhood can occur in its own right as a biological condition, for example at the beginning of a psychosis. If emotional symptoms are apparent, it is important to explore their origin. For example, were they present before ME started, or did they coincide with the onset of the illness? Or has depression developed after months or years, secondary to the persistence
of the illness?

There is uncertainty about the role depression might play in young patients with ME. Family dynamics form a good guide, and a well functioning family is less likely to produce a depressed child. It is important to look at the intra-familial communication and autonomy that existed before the onset of symptoms of ME, before assuming that depression could be the cause of the child's symptoms. The modern trend is to regard most depressive symptoms in young people as a mental reaction to an underlying chronic organic illness, or to severe adverse circumstances, and many children and young people
eventually develop depressive symptoms with any chronic illness. (Koplewicz and Klass 1993)

It is quite common for children and adolescents to develop anorexia secondary to ME. This is frequently due to nausea, and/or to muscle fatigue which affects chewing and swallowing. This loss of appetite and reduced intake might be confused with anorexia nervosa, especially in girls in early puberty. Anorexia nervosa is associated with a distorted body image, self
induced vomiting, progressive weight loss, and frequently abuse of laxatives.

It is important to make the distinction early if weight loss occurs. The most important distinguishing feature of anorexia nervosa is a distorted body image and a phobic refusal of food, coupled with a fear of getting fat. Although weight loss is commonly seen, some young people with ME gain weight, and obesity may be associated with comfort eating, lack of exercise, or possibly water retention .

Phobic anxiety state, particularly school phobia, is associated with panic attacks and use of the avoidance response about the most feared situation. Symptoms associated with school phobia usually resolve during weekends and school holidays. This does not occur with ME, whose symptoms may be worse at weekends and persist through school holidays, when children try even harder to tackle the activities they enjoy face on with the family. The main reason that the pupil is reluctant to go to school is because of rapid onset of fatigue, myalgia, and loss of concentration after a short time in class.

Somatization disorder may resemble ME in that the patient has multiple symptoms which cannot be explained by any known medical condition or by use of abusive substance or medications. In ME there is typically no secondary gain from having the symptoms, whereas this is a common feature with somatization. When evaluating the child's bodily symptoms, it is important to be aware that a child often cannot articulate about the condition, andmay be stressed by the attitudes of others to the illness. In a few cases, somatization could be difficult to differentiate from ME, and there may be
hidden stresses; a child can be unwilling or unable to communicate about sources of anxiety.

A study in the US evaluated the symptoms, severity, social support and ways of coping in 69 adolescents with ME/CFS. The results showed nothing to suggest that ME is primarily a psychiatric or psychosomatic illness, nor that adaptive coping styles reduced the severity of the illness. (Bell, 1996). However exposure to stress does increase the severity of the
symptoms. The existence or incidence of co-morbid psychiatric illness in ME patients under 20 years of age has not yet been formally established, but is probably present at the same incidence as in the general population.

2.1.5 Investigations

Medical investigations should exclude conditions such as those listed above, and might include as appropriate:-

   1. 24 hr temperature record, pulse and BP (lying and standing)
   2. Growth / weight record
   3. Urine microscopy and culture if positive
   4. Full blood count and ESR (ESR is low or normal)
   5. Quantitative immunoglobulins (raised IgM indicates active infection)
   6. C reactive protein
   7. Viral titres (within 3 months), ASOT and throat swabs
   8. Liver function tests, urea and electrolytes
   9. TSH, T3, T4 (thyroid function)
  10. Where indicated, CT and/or MRI head scan, SPECT, or PET4 scans.
  11. Ultrasound of abdominal viscera for severe abdominal symptoms.
  12. In some cases a psychiatric assessment is needed to identify depression, anorexia nervosa or other psychological conditions that might confuse the diagnosis. For this there needs to be liaison between paediatric and mental health services.

4  SPECT and PET scans are potentially helpful diagnostically; they can differentiate between ME/CFS, depressed patients, and healthy individuals, by the demonstration of different perfusion patterns over the cerebral cortex, the brain stem and basal ganglia, corresponding with the areas of disturbed brain function. (Schwartz 1994; Costa 1995) However, these tests
would be technically challenging in small children, and at present are only used for research.

Because the diagnosis of ME/CFS is based on clinical features, excessive investigation should be discouraged, and is unlikely to profit the child or investigator. Careful and long-term follow-up is essential, either to confirm the diagnosis, or to review each symptom in case a second disease process is operating.

2.1.6 Pathogenesis of the Illness

There is still uncertainty about the patho-aetiology of ME and CFS. Several studies have suggested that viruses may initiate the response (Komaroff 1996) but there is little laboratory evidence to suggest persistent infection (Gow 1997). Clinically there are similarities between post-polio syndrome and ME/CFS (Bruno 1996), suggesting a common response to specific
enterovirus infection. In some patients there is reduced circulating blood volume, which contributes to the postural hypotension (dizziness and confusion when upright) so frequently experienced (Streeten and Bell 1997).

Low dose chemical exposure is known to have a damaging effect on the central nervous system, and ME is clinically similar to illnesses resulting from known organophosphate exposure (Behan 1997), and to Gulf War illness (Jamal
1996). Publicity has been given to the possible role of OP poisoning in causing ME in some children who have been treated for head lice using a pesticidal anti-lice shampoo containing OPs.

Stress, in its broadest meaning, is a precipitant of ME/CFS, and in most cases is probably a co-factor with other triggers that include infection, immunisation or chemical exposure.

In trying to co-ordinate the many research findings, Professor John Dickenson (1997) has drawn attention to the effects of damage to the Reticular Activating System in the mid-brain and brain stem, producing many of the reported symptoms of ME. Some researchers have proposed that pre-existing psychiatric disorder, mainly depression, may be a predisposing
factor for ME/CFS (Cope 1994) but there have been no studies to date which implicate this causative factor in children. Kopelwitz and Klass (1993) state in their book on Childhood Depression that nearly all children with a chronic illness eventually develop depressive signs, even if they are secondary to an original organic illness.

The illness has consistencies that allow it to be diagnosed as an entity; however it is becoming increasingly obvious that it may be triggered by a number of different factors. There may also be a genetic predisposition, in view of the not uncommon occurrence of ME affecting more than one member of a family.

2.2 Neurocognitive and Psychological Problems

2.2.1 Effects of the illness on the child

ME is an illness that affects the central nervous system, and therefore has identifiable effects on brain functioning. Cognitive disturbances are part of the illness, and produce lack of concentration, short term memory loss,
confusion, and also nominal aphasia. In addition to this, many children with ME suffer episodes of mood disturbance, such as depression, irritability, frustration and anger, and these may be part of the brain disturbance as
well as being secondary to the effects of the illness on daily life. Because of the chronicity of the illness there is frequently loss of normal childhood and adolescent activities (school, friendships, sports, going out with peer groups). This can lead to isolation at home, being 'passed by', and sometimes to depression or despair.

One serious consequence is that adolescents with ME may remain at an immature level emotionally, and become too dependent on a parent, usually the mother. But more often, children who suffer from long and serious
illness develop an emotional maturity beyond their years. Such maturity may however be unhealthy, and can be associated with loss of normal childhood and adolescent stages of emotional development.

One outstanding mood in the child with ME is frustration, rather than depression. In a small number of cases, abnormal illness behaviour or total withdrawal may develop. These behavioural problems can also feature in other chronic illnesses and are not confined to ME, or to children.

2.2.2 Effects of the illness on family and friends

In most chronic illnesses, the patient and family's attitude to the illness follows a series of changes. Doubts regarding the nature of the diagnosis may arise in some family members, (but usually not mothers), leading to
denial, anger, depression and eventually acceptance. A family member's belief about the illness may influence the sick child's response. The illness causes total disruption to normal family life, leading to sorrow, depression, and loss of spontaneity. ME has a huge impact on the family.

Conflicting advice from health professionals can mean that the parents are confused: on the one hand they may be encouraged to treat the child as being ill, on the other hand they may be urged to treat the child as normally as
possible. Familial overprotection may need to be considered if an attitude of rigid obstruction develops to prevent medical intervention, but Munchausens syndrome by proxy is rare and should not normally be considered. It is the normal response of a parent to be concerned about a sick child, and to explore all possible means to secure recovery.

Parents of children with any chronic illness may be perceived as being overprotective by health and education professionals, and this inappropriate accusation is often levelled at the families of young ME patients by professionals who do not understand or accept the profound impact of this illness on the parents. The emotional issues arising from ME are often
compounded by ignorance, prejudice, or conflicting opinions of the professionals involved with child and family. Sometimes members of the extended family, such as grandparents (who may hold old fashioned views about illness) may be influential in determining the parents' responses to the child's illness.

Most parents find managing their child's illness extremely difficult. For example enforcing the best balance between rest and activity, and of finding a balance between giving some independence and privacy and giving enough
support without encroaching into the child's needs to have some personal control. If a child does not improve, or deteriorates, the parents may feel they are somehow to blame, or else may blame outside professionals who have
been trying to help (either of which may be correct). Ongoing medical support and good communication from the medical profession are very important.

2.2.3 Effects on siblings

Research has shown that the brothers and sisters of children who are seriously ill can suffer adverse effects. In a study (Sloper,1996) of the siblings of child cancer sufferers, 6 months after diagnosis 24% of siblings were showing adjustment problems and behavioural difficulties. In interview the siblings said they felt resentment at the lack of attention they
received, and guilt that they felt resentful. Many mentioned their sadness at the loss of normal family life. Although there are differences between these conditions, siblings of children with ME are likely to experience similar effects.

2.3 Management

2.3.1 The first step in management should be a diagnosis, which should be based on the pattern of symptoms over an appropriate period of time (2-3 months or longer), and will also involve the exclusion of other conditions which could be causing fatigue and other symptoms. The doctor who confirms the diagnosis should take time to explain the nature of the illness to the patient and the family, how it will affect the child's future progress and prospects, and its impact on the family.

Recognition of the illness by the medical practitioner will help to establish a bond of trust between the doctor, patient and family, and it is important to recognise the value of this in the ongoing management. Where the diagnosis is uncertain, a further opinion should be sought from a colleague with more experience or specialist knowledge.

The patient and family may need financial and welfare support, such as DLA and carers' allowance, and community care of a chronically ill child may be difficult to achieve.

If possible, most children should be managed in their own homes, under the supervision of their local primary care teams, with appropriate out-patient support where possible from a paediatrician with experience of the illness.
Numerous GP surgery visits and hospital appointments can be energy and emotionally draining, especially if the outcome of such consultations is unhelpful. However most families find it helpful to see the family GP regularly to monitor progress and to assess any new symptoms (which could be due to other illnesses).

However, we recognise that at present many GPs lack experience in the recognition, diagnosis and management of ME/CFS, and hope that these guidelines may go some way to informing health care professionals about the illness in childhood. The GMC has issued appropriate guidelines (Duties of a Doctor, 1995) which could help to prevent the confrontational attitudes
which often seem to develop in the medical management of ME/CFS.

Reference to child psychiatrists may be perceived by the family as threatening, although in practice many psychiatrists fail to find any psychiatric illness in children with ME referred to them. A psychiatric opinion may form part of the initial assessment, to identify possible aggravating psychological factors. If stress has been a causative factor
then this needs to be addressed, as do any continuing emotional pressures on the child from family or school.

Professional mental health services, such as family therapists who understand the severity and impact of the illness, may be able to help children and families deal with the emotional problems that can develop in the child, parents or siblings, as with any prolonged childhood illness. (Koplewitz and Klass 1993)

If a child has to be admitted to hospital for investigations or intervention for an acute problem (e.g. instituting naso-gastric feeding) due to ME, this should ideally be on a short term basis, to a medical paediatric unit, with access to psychiatric input ifthis is needed. The experience of a typical hospital ward can be intolerable for anyone with ME because of the stress of the environment - constant noise, bright lights, disruption to the routine - in addition to any lack of understanding from nurses and doctors. Hospitals are not good places for restful sleep!

2.3.2 Management of energy

The most important measure for children and adolescents is to be able to recognise their energy limitations, and to learn to stop before they become too tired. This is difficult for adults and almost impossible for children. Ideally an individual daily timetable should be discussed with the child and family, one which enables the sick child to live within his or her limits
without increasing symptoms, and in which the activities can be repeated daily without distress. In practice this is very difficult, especially for ill teenagers, who may rebel against imposed rules or timetables. And in addition, ME is an illness characterised by fluctuating energy and symptoms, so it may not always be feasible to follow a strict daily timetable,
especially if there are unforeseen stresses (e.g. an infection or family crisis), which can lead to increased symptoms or a relapse.

Exercise and rehabilitation

When considering how much activity should be undertaken, it is important that young patients, parents and advising health professionals should recognise whether the child is in an acute stage of the illness when increasing activity is counterproductive, or in a stable phase with few symptoms other than fatigue, when cautious increase in activity should be
encouraged. (Franklin 1994)

However, many ME patients already operate at the limit of their energy levels, and for these any increase in activity may be inappropriate (Friedberg and Krupp 1994). Clinical experience suggests that exercising beyond the individual's energy limits could be as harmful as absolute rest, and this has been confirmed in recent studies by an exercise physiologist at
the University of Pacific, USA. (Stevens 1995), and by Dr Charles Lapp (Lapp 1997).

Evidence of defective muscle metabolism in some cases of ME, (Lane 1995, Behan WMH, 1998) could explain why overenthusiastic rehabilitation programmes using graded aerobic exercise may fail in some children, and
often leads to increased disability.

Total bed rest is harmful, except for a short time during the acute phase, and leads to postural hypotension (low blood pressure) and loss of muscle strength. However most young ME patients retain muscle tone, and get up for toilet purposes even when in a relapse. These complications can be minimised during an acute phase of illness by the application of gentle passive physiotherapy.

The best way for a child to maximise energy and improve daily functioning is by careful pacing of activity - i.e. alternating activity and rest, and also alternating physical with mental activity. (Westcare: Task Force Report, section 14, pp 66-69). The eventual aim is for gradual increase in overall activity, as the child's tolerance improves.

Cognitive behaviour therapy

C.B.T. has been advocated as a way to improve functional activity in some adults with ME/CFS (Sharpe 1996), but has not been formally evaluated in children. However, a team at St Bartholemew's Hospital in London recently reported a pilot study of a multidisciplinary inpatient rehabilitation programme, using CBT and graded activity, for severely incapacitated adults
with ME/CFS. (Essame 1998) None were cured, but most improved their fatigue scores (Karnofsky) using a biopsychosocial approach. It may be more difficult to apply these methods to children, although addressing the problems of sleep disturbance, general weakness, and weight loss would be relevant. A key feature in this study was the care planning with family members prior to discharge from hospital.

Physiotherapy

In severe bed-ridden cases, gentle physiotherapy can be given to maintain muscle tone and joint mobility. This can be taught to parents by a physiotherapist who understands the illness. Fixed contractures of fingers may sometimes develop in severely ill patients who have uncontrolled muscle spasms, and splinting may be necessary.

Gradual increase of an activity agreed with the individual child may be encouraged at weekly or fortnightly intervals. But rigid physiotherapy regimes that are beyond the ability of a sick child are potentially physically harmful and emotionally abusive.

School attendance (see also Education Section)

Clinical experience confirms that mental activity is also energy consuming
(Deluca,1995; Smith,1996) so that immediate return to school without
recognising this should not be encouraged (Colby 1996), even though most
children want to return to the company of their peer group as soon as
possible. When they are able to do so, they find this to be a positively
motivating experience, but if pressed to return to school too early, it can
have a negative impact. (See Appendix A, case history 2) Re-entry to school
should be gradual and planned with the school authorities.

The experience of US paediatricians (Bell 1996) suggests that a school child
should be capable of spending up to three hours in a public place - e.g.
shopping centre - with friends, without subsequent deterioration in the
following 12 to 48 hours, before they are ready to return to school.

Social activity

A key feature of ME/CFS is exhaustion from social interaction, whether
talking and listening face to face with more than one person, or using the
telephone. This has far reaching consequences especially for young people,
however much they want to be with their friends. Other peer group
friendships can however be developed using support groups for young ME
patients (see Resources)

2.3.4 Nutrition and Diet

A properly balanced diet of mainly fresh foods is appropriate for most young
patients. It is important that the child with ME has enough calories and
protein for growth, and that if there is loss of appetite the meals are
appetising and easy to swallow. The diet should include complex
carbohydrates to prevent symptoms of hunger and faintness, which are common
in ME due to autonomic dysfunction. Small frequent meals may be easier for a
sick child with poor appetite to cope with.

Special exclusion diets for food allergies or intolerance are not needed for
most children, although a proportion of them may have experienced diet
dependent migraine before the onset of the illness. If they have significant
symptoms suggesting food intolerance (for example migraine, joint pains or
gastro-intestinal symptoms), a dietetically supervised exclusion diet of a
few safe foods for 7-10 days may lead to significant improvement. In view of
the immune system involvement (Tirelli 1996) it is not surprising to find
indigestion and intolerance to foods developing.

The most common foods worth testing by elimination and challenge are: Milk
and milk products, wheat, sugars, citrus fruits, and chocolate.
(Hadisavassiliou 1996).

Severely affected cases with anorexia (not Anorexia Nervosa) and nausea may
become malnourished and fail to maintain weight. The nausea is centrally
mediated, and is a very common symptom of ME/CFS (Komaroff 1995). Poor food
intake can also result from weakness of the chewing and swallowing muscles.
Liquid oral feeds or even naso-gastric tube feeds may get such children
through a difficult patch, provided they are tolerated by the child. A
regime of liquid or tube feeding can be established in the patient's home
with appropriate supervision from a district nurse and children's dietician.

2.3.5 Medication

There is no curative drug treatment, however certain drugs can help some
symptoms. It is generally accepted that treating sleep disorder, depression,
or pain where these are prominent, improves the quality of life. ME/CFS
patients of all ages are usually highly sensitive to psychoactive drugs, and
extreme caution with dosage in children is needed.

Analgesics Simple painkillers including paracetamol and non-steroidal
anti-inflammatories can be tried. Severe migraine may be helped by specific
drugs - for example Migraleve or Imigran - but only in adolescents over 14
years.

Diamox (Acetazolamide) may be effective for severe intractable headaches,
which may be associated with low circulating blood volume (Streeten and Bell
1998).

Muscle relaxants Magnesium has been anecdotally reported by some adults to
help muscle spasms and insomnia, taken by mouth. Intramuscular magnesium,
though promoted in one earlier trial, is no longer considered appropriate,
and is very painful. Occasional diazepam (Valium) can be tried for severe
muscle spasms, but tends to be addictive.

Antidepressants These may be required if sleep disorder and /or depression
are present, but do not cure the underlying condition. SSRIs (fluoxetine,
sertraline etc) are not recommended for children, and a double-blind
controlled trial of fluoxetine (Prozac) found it had no benefit over placebo
for adults with ME/CFS. (Vercoulen 1995). However, anecdotal reports show
that tricyclic antidepressants used in small doses (e.g. amitriptyline,
dothiepin, doxepin, starting at 10mg nocte) may be useful to treat sleep
disturbance, and reduce anxiety and pain. An alternative remedy, Hypericum
(or St John's Wort) has been found to be as effective as amitriptyline for
moderate sleep disorder and depressive symptoms (Linde 1996).

Hypnotics Temazepam in a moderate dose can be used occasionally, but is not
recommended for children, and the benzodiazepine group of drugs are
addictive. For persistent sleep disturbance with frequent waking and
nightmares, low dose tricyclics seem to be the best option. Melatonin has
also been suggested as being vital to maintain the body's diurnal rhythms
and promote sleep at night, however there is no information about its
relevance in children (Soutzos 1998), and at present it is not available on
prescription in the UK.

2.3.6 Immunisations

Anecdotal experience has shown that immunisations may bring on a relapse in
ME/CFS. As with any illness, non-essential immunisations should be avoided
until the child is well.

2.3.7 Managing Psychological Issues

The psychological effects of being seriously ill must be taken into account
in the management of ME/CFS. One of the most damaging psychological effects
for the child will be the feeling of having no control over what is
happening. Another is the effect of having to cope with the attitudes of
others who misunderstand and trivialise the illness. This can cause further
withdrawal from society to avoid the pain of insensitive or hurtful
comments.

From a review of research on psychological issues for children who are ill
or disabled, Prosser (1992) concluded that the right to exercise a level of
control over one's life is essential for self esteem and optimal
psychological development. Good psychological management of the child with
ME would include restoring to him or her an element of control, as described
in Higgins and Siner (1996).

The GMC advises doctors to respect the rights of patients to be fully
involved in decisions about their care. Article 12 of the UN Convention on
Rights of the Child (1991) makes it clear that children and young people
have the right to participate in decisions about themselves. Ambiguity about
the diagnosis of ME adds to the difficulties the child may experience within
the family. In some cases, family therapy linked with ongoing GP contact has
been useful in helping the child, and enabling the parents to feel more
competent about their parenting. Good psychological management will not
underestimate the importance of maintaining a healthy self esteem, and any
attempts to involve adolescents in cognitive behavioural therapy should hold
this to be of primary importance

Young people with ME are often adolescents, at a time when personal
appearance and conforming with peers is very important. Being unable to take
part in the same activities as friends, and having little contact with them,
may cause feelings of isolation. Some severely affected youngsters have no
social contact with their peers for months or years. Social support groups
can help by enabling contact with others through post, phone or E-mail (see
Appendix C). A common source of distress is the inability to attend school
full time because of the limitations imposed by the illness, and the
resulting loss of education. Liaison with and informing school authorities
about ME/CFS would assist teachers to deal with the variability of the
illness in a particular child. (see Education, and Resources)

We are aware of the views of some child and adolescent psychiatrists, which
concentrate almost entirely on possible psychological causes of ME/CFS,
and/or the psychological responses of young patients. It is appropriate to
take into account the psychological responses of a young person to the
illness, however this should not be considered in isolation from the
physical features of the illness.

The use of cognitive behaviour therapy, for example, can be useful by
enabling the child to rethink feelings of helplessless and lack of control,
or feelings of lack of worth. But CBT is not helpful when attempts are made
to get children to rethink themselves out of a state of physical illness.
Intensive regimes of graded exercise and therapy within in-patient
psychiatric units are often counterproductive for this reason.

2.4 Epidemiology

2.4.1 Outbreaks of ME

Many accounts have been documented since 1934. Of these, thirteen make
specific mention of children, and one is concerned wholly with this age
group (Bell 1992, 'Children with ME/CFS - an overview of literature). Most
of the accounts of outbreaks of ME in children and adolescents find peak
prevalence at puberty, and seven note the relapsing nature of the illness,
and tendency to chronicity. Three documented outbreaks specify a
predominance of female gender, summer/autumn onset, and clustering of cases
in schools or families.

An outbreak in Iceland in 1947-8 was documented by Sigurdsson (1950) under
the description "a disease epidemic simulating poliomyelitis." There were
over 400 cases, and the outbreak centred on the high school in Akureyri,
where teachers were also affected. The peak age was between 15 and 19 years
with a 3:1 female to male ratio. Of those affected who are still alive, most
still have disabilities today (Hyde 1988). In a Lancashire epidemic (Lyle
1956) children bore the brunt of the illness, which clustered in schools and
families; Echo 9 enterovirus was isolated. In 1959 Acheson reviewed 15
outbreaks worldwide, noting, in particular, late childhood onset and
chronicity.

2.4.2 Schools

The largest epidemiological study of ME in children and adolescents to date
is by Dowsett and Colby (1997), and findings mirror those of earlier
studies. Schools' long-term sickness absence statistics were collected over
a five year period from 1991 to 1995. Since the 1991 School Attendance
Regulations made it obligatory to categorise absences from school as
Authorised or Unauthorised, head teachers have had a duty to establish the
genuineness of cases of long-term sickness absence. In this study, the
resulting (confidential) documentation such as doctors' letters and medical
certificates represented a widespread section of the medical profession, due
to the geographical locations of the six Local Authority Areas studied.

51% of all long-term sickness absence in the studied pupil population of
333,024 had been identified as ME (although the criteria for diagnosis were
not specified for each case). The next largest cause - cancer and
leukaemia - represented 23%.

The diagnosis was significantly associated with case clustering, variable
geographical prevalence, a marked increase in the female:male case ratio
after puberty, and prolonged disturbance of educational potential.
Prevalence was estimated at 70:100,000, (0.07%) with the peak age being at
15 years. (The prevalence among staff was 0.5%, considerably above
population average.)

An indication of the effectiveness of differing educational management
programmes was the fact that Education Authorities offering higher rates of
home tuition and modified timetables were less likely to see pupils being
withdrawn from the school roll entirely.

In a study in two London boroughs of one of the LEAs used for Dowsett and
Colby's study, Dr M.L. Arzomand (1997) found similar total prevalence
(0.07%) in Merton and Sutton together, but a significant difference of case
distribution in these two neighbouring boroughs with the same populations,
which indicated clustering of cases.

2.4.3 A study (a randomised telephone poll) in San Francisco (Steele 1996)
found 2 per 1000 of the population of nearly 17,000 who had self-reported
symptoms which corresponded with the cdc 1994 Fukuda criteria for CFS.
Unexplained chronic fatigue was extremely rare under 18 years, and no case
under the age of 11 years was found, but this could be explained by the
strict criteria used. The prevalence in adolescents was therefore less than
in the adult population. Further analysis of these data would suggest less
than 0.2% or 2 per 1000 in the adult population, and probably half that
number in the adolescent population.

2.5 Prognosis

At present there is not enough evidence to make a definitive statement.
Several authors have published follow-up studies of paediatric ME/CFS
patients. Dale and Strauss (1992) considered that young patients with CFS
have a high probability of recovery within the first 1 -2 years, but that
after longer periods of illness the recovery rate is less. There was an
outbreak in Lyndonville, N.Y. state, in 1985: "104 patients were identified
who retrospectively met criteria (for CFS). 44 patients were under 18. All
were followed up for at least two years, when only four children had made a
complete recovery." (Bell 1992). In 1998 David Bell presented findings (at a
conference) from 15 year follow up, which found that after 15 years 20% had
not recovered.

Feder (1994) in the USA claimed about 90% recovery over 5 years, most of
whom recovered in the first 2 years. This was a selected district population
of mild to moderately ill children and did not include the more severely
disabled.

    "All follow-up studies report improvement or recovery in over 50%
patients ..... however it is significant that some children in each group
continue to experience significant fatigue and disability. It is possible
that these children who do not improve represent a subset of paediatric
CFS(ME) patients, potentially having a more severe form of the illness or
differing in other important traits. Bell (1995) noted that this group with
persistent disability tends to have symptoms that are worse from onset,
resulting in severe activity limitation. In addition, they tend to have more
severe neurologic symptoms including myoclonus, paraesthesia, and
seizure-like episodes." (Jordan et al, 1998).

Clinical experience suggests that younger children recover more fully than
adults, but that younger children with a gradual onset may run a more
protracted course. Because ME is characterised by fluctuations in energy and
symptoms, often with remissions of weeks or months followed by relapses -
which usually result from stress or over-exertion, a child who appears to be
recovering needs to be careful about exercise for at least a year. The more
severely ill children may take a very long time to recover (>7 years), but
such assessments are seriously flawed by the absence of a reliable
comparison. 'Recovery' means the achievement of an acceptable life style in
comparison with a 'normal' adult population. There are different degrees of
recovery from a return to a tolerable energy level and lifestyle, to
complete recovery to the pre-illness activity potential. It is possible that
many people with ME/CFS who 'recover' have in fact adapted to a lower energy
level and modification of lifestyle. What is unknown is what quality of life
would have been achievable had the person not become ill in the first place.

We remain very guarded as to individual prognosis. David Bell's study,
presented in San Fransisco, concluded that there were no clear pointers to
the predicted course of the illness in any individual child. (Bell 1996)


3 Education Section

3.1 Introduction

Since 1994 (Section 298 of the Education Act), all Local Education
Authorities (LEAs) are obliged to arrange suitable education for children of
school age who are out of school because of illness or injury. They may do
this through home tuition, through hospital schools or tuition services, or
through an integrated hospital/home education service. In addition, under
the 1993 Education Act, maintained schools "must use their best endeavours
to make provision for pupils with special educational needs." (Code of
Practice)

ME/CFS often leads to chronic illness, resulting in long-term absence from
school at rates in excess of any other medical condition (Dowsett and Colby
1997). If return to school occurs too early, or is not managed very
gradually, together with disapplication of National Curriculum requirements
for Physical Education, severe relapse can result. Cognitive deficits are
also exacerbated by physical or mental over-exertion. (Bell 1995, DeLuca
1997) These factors place ME within the spectrum of medical conditions
producing special educational needs.

The Code of Practice on the Identification and Assessment of Special
Educational Needs, issued by the Department for Education and Employment, is
designed to help schools and LEAs make effective decisions for children
deemed to have such needs. A Statement of Special Educational Needs may or
may not be made, but in all cases "LEAs, schools, and all those who help
them work with children with special educational needs, including the health
services and the social services, must have regard to the Code." The Code
makes it clear that LEAs are empowered "to arrange for some or all of a
child's special educational provision to be made otherwise than at school."

N.B. The Northern Ireland Code of Practice for the Identification and
Assessment of Special Educational Needs makes specific reference to ME/CFS
as an example of medical conditions which should be taken into account when
assessing a child's Special Educational Needs.

3.2 Purpose of Education

Education may be simply defined as:

   1. Imparting knowledge and skills
   2. Training in becoming a self-learner
   3. The development of the person's individual identity and potential as a
member of society.

Education for children and young people with ME needs to be tailored to
their specific needs in order for the above to be achieved.

3.3 Effects of ME on Pupil's Cognitive Function

3.3.1 Language: listening, speaking, understanding:

Language use may be severely impaired. The pupil may lose access to a whole
range of vocabulary, being unable to recall simple words, and may find
difficulty with written words.

Problems with speaking may include slurred speech, the reversal of
word-order and the speaking of different words from those intended.

Pupils may listen to a teacher's explanations, recognising each word
separately, without being able to deduce any meaning from the combination of
the words into sentences, as if the teacher were speaking in a foreign
language.

Speaking can be difficult and exhausting for a pupil with ME. The pupil may
forget vocabulary or may speak quietly and slowly, because it is too
physically exhausting to project the voice more loudly. This can be wrongly
interpreted as depressive behaviour.

3.3.2 Mathematical calculation

Numerical calculation may be severely impaired, not only high-level
information processing. For example pupils may no longer be able to count a
handful of money correctly, although they may know the value of each coin
separately. Pupils may have trouble understanding a simple graph or table of
mathematical information, although they know what each isolated figure
represents.

3.3.3 Cognitive fatigue

Cognitive fatigue means inability to concentrate for normal periods of time.
The pupil's ability to focus on mental tasks wanes, with serious
implications both for working to the expected timetable, and for coping with
examination schedules. Continuing work when cognitive fatigue sets in
generally aggravates symptoms. The brain becomes unable to perform, and if
the pupil then makes a great effort to continue mental work, this often
results in physical deterioration a day or so later. If cognitive
difficulties are not fully appreciated, school staff can unintentionally add
to a pupil's distress by implying that they are lazy, or not paying
attention.

3.4 Effects of ME on Pupils' Physical Performance at School

Moving about is very exhausting for pupils with ME. It is known that
inappropriate exercise may lead to relapse. (Lapp 1997; Bell 1995) There is
also evidence that the enforced exercise needed for most physical education
can be damaging, causing deterioration. (Vereker 1992).

Sitting in an upright chair may cause exhaustion and pain, and affect
concentration. Carrying books and bags may be exhausting. Writing by hand
may not be possible for long. Speaking may be difficult, singing may be
impossible.

3.5 Implications of ME for School Based Learning

The nature of schools is such that school may not be the ideal place for a
child or teenager with ME to thrive educationally:

Pupils with ME are likely to tire if they have to walk long distance between
lessons, and also have to carry books and equipment around, as is usually
the case in secondary education, a peak age for the illness.

Pupils may be especially sensitive to light, sounds, temperature changes and
smells. Fluorescent strip lighting, often used in schools, or direct
sunlight, may be intolerable. Ordinary classroom noise, or the magnified
noise of assembly or dining halls, may cause great discomfort.

Normally harmless smells of chemicals used in science, cleaning or the art
room, may cause headache and nausea.

Feeling unusually hot or cold may mean the pupil has to add or remove layers
of clothing during the day.

The pupil may need food at unscheduled times if there is a tendency to
symptoms suggesting low blood sugar (very common in ME). Appetite
disturbance, nausea, or food intolerances may require the pupil to eat or
avoid certain foods.

The pupil may need to visit the toilet more frequently than normal, and
toilets may be far from work areas.

Reversal of normal day/night sleep rhythms may result in the pupil falling
asleep in class in the morning. Unpredictable mood swings, irritability or
fatigue may mean that the pupil appears sleepy, irritable or emotionally
'high', needing sensitive handling by staff.

Schools with pupils who may be at various stages of recovery with ME need to
consider how they can offer a flexible response to these difficulties. The
school will need to consider:

    * Timetable modifications, part-time attendance.
    * Facilities where a sick pupil can go to rest for a time during the
day.
    * Dietary needs.
    * Help with getting around the school and carrying equipment, maybe with
a wheelchair to conserve the pupil's energy.
    * Financial support, e.g. from the LEA, for transport to and from
school, to minimise the energy required in simply getting to school.
    * Exemption of the child from having to do physical education - PE,
swimming and all sports.

3.6 Special Educational Needs

A child diagnosed with ME should be at Stage 2 or beyond in the process of
Special Educational Needs assessment as detailed in the Code of Practice. An
Individual Education Plan (IEP), written and monitored by the Special
Educational Needs Co-Ordinator (SENCO) in each school, coupled with good
home tutor and parent liaison, should ensure that children with ME are not
overloaded on their return to school in order to 'catch up' with work, which
only produces further illness.

Careful planning, combined with special arrangements from examination
boards, can ensure that only the most necessary work is set. This enables a
better standard to be attained in these pieces of work.

The Educational Psychologist

In the case of a child whose education is disrupted due to serious illness,
it is advisable to seek the advice of an educational psychologist employed
by the LEA. An educational psychologist will have an understanding of the
psychological issues of the illness, and educational needs. As such he/she
will be able to advise the child parent and school in agreeing a flexible
response to the child's needs. Educational psychologists also need to
understand about ME.

3.7 Wider Implications for the Education of Pupils with ME

Severely ill pupils will be at home and possibly bedbound, with no
possibility of doing schoolwork. Such a pupil will normally remain on a
school roll during what may be a long recovery period. The ability to begin
academic work of some kind at home may return long before physical recovery
occurs sufficiently to allow school attendance.

Once a severely affected pupil has recovered the ability to concentrate
without bringing on physical symptoms, work on a part-time basis can resume
through the home tuition service. Home tuition is usually short-term, but in
practice there are a number of education authorities who accept that ME is
an illness requiring long-term arrangements, and respond accordingly.
(Education appendix )

The dilemma faced by schools, LEAs and doctors revolves around identifying
the best time to re-introduce the pupil into the school environment. It
should be remembered that the purpose of education is to educate, as defined
in Purpose of Education, and the environment where this takes place is a
separate issue.

The environment in which education takes place should be that which
maximises the pupil's educational achievements. Decisions about school
attendance should not follow conventional procedure just because it is the
norm, nor be made for social interaction (which can be provided for
separately), nor because education in school may be cheaper.

When deciding on the best learning environment for a child with ME, it is
important to take account of possible effects on the pupil of mental or
physical effort. In this illness there is typically a time-lag between the
effort and any resulting debility or symptoms. The onset of symptoms may
occur up to 72 hours after the effort has taken place, and may not always be
apparent to the teacher or home tutor.

School staff and other professionals may only have the parents' description
of any reaction occurring after effort. This can lead to a breakdown of
understanding. The parents may be considered over-protective as a result. It
is advisable for the Educational Welfare Officer to be involved in
home-school liaison, visiting the home regularly to see how any activities
may have affected the pupil. It is important to remember that someone with
ME can make a great effort for a short time, even during the visit itself.

Government publications emphasise that parents should be partners in
decisions affecting their children. Doctors and education authorities should
put this principle into practice.

3.8 Joint Health-Education Plans

Pupils with ME need a flexible system of education which is dictated by
their state of health. A Joint Health-Education Plan, as recommended by the
National Association for the Education of Sick Children is an appropriate
way of providing for this on an individual basis.

DFE Circular 12/94, 'The Education of Sick Children', made it clear that:
'Arrangements which local education authorities (LEAs) make must be tailored
to the circumstances and the facilities available.' Circular 14/96:
'Supporting Pupils with Medical Needs in School', suggests that 'health care
plans' are provided so that school staff 'have sufficient information to
understand and support a pupil with long term medical needs.' For the child
with ME it is important that any planning recognises that the child's health
status may require that they are taught at home rather than at school.

The National Association for the Education of Sick Children (NAESC)
published an important piece of research (Bolton 1997). 100 parents and 40
children and young people were involved in this study of the meaning and
role of education during and after childhood illness, and opinions as to the
effectiveness of what had been provided by LEAs. The report emphasised the
importance of making joint plans, covering both health and education. 16 of
the parents in the study and one young person gave evidence about the
effects of ME. This group of parents were likely to describe health needs as
paramount. The problem of providing suitable education for chronically sick
children who are intermittently absent, or whose health fluctuates, as in
ME, was noted.

3.8.2 The joint health-education plan for a pupil with ME is likely, except
in milder cases, to include at some point a period of tuition outside
school. In some areas of the country a selection of institutional and
distance learning options is already available for children and young people
who are well enough to study, but unable to cope with the demands of the
school day.

Tuition in the child's own home is often provided. Lessons need to be
appropriate in number and scheduled at the most effective time of day in
order to optimise education results. Most pupils with ME do not function at
their best until late morning or afternoon.

Where there are teachers at the child's own school willing to take on the
tuition as an additional contract, home tuition can be provided by them at
the end of a normal school day, rather than by a separate school tutor. This
may make the pupil feel in closer contact with the school and less isolated.
Facilities for a period of transition involving both the tutor and school
simultaneously should be offered. This builds confidence and provides for
the rehabilitation process in ME. Returning a pupil to school does not in
itself count as successful rehabilitation if it detracts from educational
achievement.

3.8.3 Other examples of half-way houses between school and home, already in
existence, are 'home and hospital schools', which provide a disability
friendly environment. Visiting Teacher Services are a development (Education
appendix) which offers exciting possibilities. Distance learning using
modern technology is a forward looking option for pupils with ME, with the
facilities of faxes, computers, e-mail and the Internet.

An important part of the Joint Plan should be to remove unnecessary sources
of stress to maximise the potentials for physical recovery and academic
learning. It is important for professionals to be honest with the pupil and
the family about realistic expectations for the future. They should also be
encouraged to know that education opportunities continue through life.

3.8.4 Financial resources for some of this alternative education provision
is sometimes provided by reclaiming from schools part of the Age Weighted
Pupil Unit funding, to fund the Hospital education service or home tuition
for that child.

Throughout the child's educational career it is important that the Joint
Health-Education Plan is regularly reviewed and updated to ensure that the
educational and health needs are met. Where an LEA provides a flexible
response to meeting the child's needs, it has been shown that the child is
more likely to remain in the education system. (Dowsett and Colby 1997)

3.9 Social Education

Social education is important, but due to limitations imposed by ME, is best
considered separately from academic learning. During what may be a long
recovery period, a combination of home-based academic learning with separate
arrangements for peer-group social contact can work well. A pupil can become
socially isolated from peers because of long-term absence from school, but
opportunities for social contact in and out of school should be made
available for social education alone. (Resources)

Visiting Teacher Groups also work well in providing both social contact and
tuition in a half-way house situation. Educating peers about ME is a very
important part of socialisation, so that potential good effects of such
contact are not undermined by adverse comments about the illness, or about
the pupil's absence and special educational needs. Information for friends
and teachers are available from Young ME support groups.(Resources) The
early onset of fatigue in ME often makes social contact extremely
exhausting. Arrangements for social activities, visits and telephone calls
need to be paced so as to avoid exhaustion. Distance friendships can also be
encouraged via the Internet and conventional networking.

3.10 The Importance of the Multidisciplinary Approach

3.10.1 In accordance with government recommendations, all those dealing with
sick children should work together for a co-ordinated approach. This should
include the education services. The educational psychologist may be a key
worker in such a co-ordinated approach, (Higgins 1996) and needs to be well
informed about the requirements of children with ME. People who have
knowledge of the illness, such as representatives from ME patient
organisations, can also offer valuable advice.

It is important for doctors, especially those in the School Medical Service,
to be aware of all available choices for a child's education, which can be
offered in a variety of ways.

LEAs should inform medical professionals of all the options available to
families, with the aim of always being as flexible as possible. This enables
the doctor to make recommendations which truly support the individual child'
s educational needs long-term.

In keeping with the principles of involving disabled persons in the planning
of services for their needs, ME patient support organisations (Resources )
should be seen as respected partners in planning, and as useful sources of
information The Office for Standards in Education has circulated a Children'
s Charter (Colby 1996) to Schools Inspectors who specialise in special
educational needs. This Charter was developed for a patient organisation, in
step with the principles of multi-disciplinary working.

The pupil should ideally be part of the team making decisions about his or
her future schooling. To be effective, such involvement needs to be real,
not merely an apparent consultation followed by decisions which ignore their
views, and is important in both educational and medical spheres, (Cooper
1997) to avoid alienation from professionals who are trying to help.

The professionals should not feel threatened by the genuine sharing of
decisions with patients and pupils, since a more satisfactory management
plan is likely to emerge as a result. The pupil may set more ambitious goals
than the professionals at times.

3.11 Providing Statements of Special Educational Needs

It is recognised that ME is one of the medical conditions giving rise to
Special Educational needs. Medical conditions likely to affect a child's
academic achievement are listed in the Code of Practice on the
Identification and Assessment of Special Educational Needs. Research
(Dowsett and Colby 1997) suggests that ME is a more common cause of
long-term sickness absence than any of those currently listed. (The Northern
Ireland Code lists it.) The National Association for the Education of Sick
Children also reports that in 1996, children with ME formed the largest
group about whom requests came in.

One factor identified by the Department of Health (Welfare of Children in
Hospital) as a potential trigger for statutory assessment procedures when
the child is in hospital is when he or she has a medical condition likely to
affect future learning ability.

Where extra provision of education is required, the government envisages
that many LEAs will fulfil their responsibilities through the use of small
units, or by individual and home tuition, with the aim of returning children
to mainstream education as soon as possible. Indeed, this is regarded as the
child's right.

However, DFE Circular 11/94 (The Education by LEAs of Children Otherwise
than at School) points out the importance of considering alternative
education arrangements, including assessment for Special Educational Needs.
Return to school should be considered only if it disadvantages neither the
child's health nor his/her educational achievement.

Formal assessment can be helpful if the resulting Statement is flexible.
This is not usual, but for ME it is appropriate in view of the
relapsing/remitting nature of the illness. A Statement covers provision for
children up to the age of 19, as long as they are on the roll of a school.
It also gives schools powers to make certain special examination
arrangements without seeking further permission.

3.12 Assessment and Examinations

Any pupil with genuine reasons for needing special arrangements and/or
consideration in examinations can obtain these through the school or
examinations centre, and its contact with the various examination bodies.
The principle is that, whilst it would be unfair for a pupil to gain
advantage over others, no pupil should be disadvantaged by examination
arrangements. Similarly, special arrangements must not mislead anyone about
candidates' attainment, and should not reduce the reliability of the
assessment. (Joint Forum GCSE/A level booklet)

Children with ME are severely disadvantaged in normal examination settings,
which demand:

    * A physical effort to reach an examination centre
    * Concentration over a considerable period of time.
    * Attendance at centres that may be unable to cater for disabilities,
    * Examinations at times of day when their concentration is often not at
its best.
    * Examination schedules concentrated into a short span of days, which
does not allow for recovery between exams.

For these reasons, special arrangements should always be considered for
pupils with ME. A higher mark may be attained if a pupil sits an exam at
home, at a suitable time of day, and with breaks in the examination for
mental recovery. Most candidates with neurological dysfunction will qualify
for an additional examination time allowance of 25%. The school or
examination centre can also request that special consideration be given to
the paper of a candidate who is unwell during the examination.

Booklets published by the Qualifications Curriculum Authority, and the Joint
Forum for GCSE and GCE, give full details of the various arrangements which
can be offered by schools and examination centres on their own initiative,
and of the additional arrangements requiring permission from these bodies.
These should be planned well in advance, and schools are advised: 'If
candidates have multiple disabilities, make sure that you have considered
all the possibilities for meeting their assessment needs'.

Pupils with ME and their families should be told about special assessment
and examination options in good time. Many will not know of the existence of
such provisions, without being given the information.

All teachers of pupils with ME must have sight of the booklets that detail
special assessment and examination arrangements, in accordance with the
duties of heads of examination centres. Doctors should also see these
booklets.

3.13 Post-16 Education

The young person with ME reaching 16 years of age often faces a plethora of
educational problems, not least the withdrawal in many cases of home tuition
and other help. This discriminates against them in terms of career prospects
so they become doubly disadvantaged; such discrimination urgently needs
addressing. A Statement of Special Educational Needs covers children's needs
post 16.

The issue of funding for post-16 education is a complex one. The Careers
Service provided by the Local Education Authority is usually the key agency
in making any necessary arrangements. It is important, therefore, that young
people not attending school because of ME receive their full entitlement of
careers guidance in order to make the best possible arrangements for
continuing education.

Colleges of further education are often very skilled at making flexible
arrangements for young people with ME who are able to attend college
premises as disabled students. This approach is advocated in the 1996 report
of the Further Education Funding Council 'Inclusive learning'. Creative
thinking is needed to meet the needs of a pupil with ME who wants to
continue education, but is not physically well enough to attend college
premises.

Education Appendix
Examples of flexible schooling producing good results

Norfolk County Council - Visiting Teacher Service (VTS)

Norfolk runs a tuition service under the banner of the Visiting Teacher
Service in which teaching is delivered in a variety of ways, from 1:1 to
small groups, in a variety of premises varying from the pupil's own home to
Youth Centres to schools and, in three cases, in specific VTS Centres.
Pupils helped include those who are ill, injured, hospitalised, those
permanently excluded from school, refusing school, school phobic or special
needs pupils awaiting appropriate provision.

A County Co-ordinator and three Area Co-ordinators provide a service over
five areas of the county. Area-based core teams of staff and standby
teachers fulfil specific tasks, teaching and running small groups. Referrals
to the service are made by Education Welfare Officers (EWOs) and also from
schools, parents, education agencies etc.

In order to staff the service with suitably motivated and trained personnel,
staff are offered peer group and Area Co-ordinator support, regular staff
meetings, annual day conference, and opportunities for training and resource
provision, within the Area and County framework. The VTS maintains close
links with health services, family support groups and associations, and has
gathered information and resources which can be made available to schools,
parents etc. from a wide variety of sources.

The County Co-ordinator notes: 'The increasing of schools' awareness of ME,
and enabling them to understand how to deal with pupils in a more
constructive way, has often led to more successful intervention and
progress.' This has been largely carried out by the VTS through offering
course access and information. Regular case reviews are seen as a vital part
of the educational process, enabling all parties to keep focused and to
plan.

Individual teaching from one or more teachers for specific pupils has led to
good results in enabling GCSEs to be taken and to the pupil going on to
access Post-16 provision. The most effective means of attaining progress has
been found to involve negotiation with the pupils over their own energy use,
so that they learn to live and work within the limitations imposed by their
medical condition.

ME has been found to affect pupils over a number of years. Thus, when the
disease is met at a lower age, about 40% of pupils improve in health
sufficient to enable at least partial return to school (which may involve
both VTS and school simultaneously) during the statutory school age period
(i.e. by 16 years) has been about 40%. However, due to the long-lasting
nature of ME, pupils who develop it later in their school careers are
generally still ill at the end of the statutory education period. Pupils
using the VTS service nevertheless manage to achieve good results.

Whilst exams are not the only yardstick by which to measure success, one
school which was initially dubious about its premises being used for a VTS
Centre noted that the pupils' exam results clearly demonstrated the
educational value of the scheme. In other areas ranging across England and
Northern Ireland, results of suitable tuition coupled with special
examination arrangements underpin those of Norfolk. Examples are: A boy aged
13, severely ill and housebound, one GCSE obtained (Grade A starred) two
further GCSEs now begun. A girl aged 19, became suddenly ill at 18 and
missed A-levels, one A-level (Grade B).

The VTS County Co-ordinator notes: 'In most cases, the co-operation of
schools and colleges with the education of these pupils has been vital to
their degree of success.'

The VTS scheme has served to educate both the teachers serving within it,
and those serving in schools, since the VTS staff are able to visit schools
and pass on their knowledge. The service has also developed information
packs and has become a source for the wider educational community. LEAs and
medical professionals dealing with ME in children and young people may
contact the Norfolk VTS County Co-ordinator at the following address:

Mike Downes, County Co-ordinator (VTS), Room 35, County Hall, Martineau
Lane, Norwich, NR1 2DL. Tel: 01603 222150.

Further Reading

The Children Act 1989 Guidance and Regulations, Volume 6, Children with
Disabilities, Chapter 9, 'Working with Education Services' (p21) HMSO,

Child Health in the Community: A guide to good practice, Part 16 - 'Children
with Special Educational Needs' (p79). NHS Executive

Losing the Thread : Pupils' and Parents' Voices about Education for Sick
Children. Angela Bolton, The National Association for the Education of Sick
Children, Case Study 3 - Children with ME/Chronic Fatigue Syndrome (p.30)


4 Social Support Services for Children and Young People

4.1 Statutory

Under the 1989 Children Act, all children with disabilities fall within the
classification 'Children in Need', and are therefore a responsibility of the
Local Authority which should offer advice, guidance and assistance, taking
the form of a direct service provision. In practice, Social Service
Departments may be likely to display a confused approach to children with ME

The condition is still not widely understood by the professionals likely to
become involved, and since the Community Care legislation, most social
service teams have re-specialised into children's and adult's. Hence the
original aim of the 1970 Social Services Act, to provide a 'one door'
service, is becoming eclipsed.

Both Local Authority Education and Social Services Departments should offer
assessment and, where necessary, direct service input for children and young
people with ME. Direct services are likely to be put together by social
workers and occupational therapists employed by the Local Authority.

Working with severe financial restraints, Local Authorities are targeting
services towards clients whom they regard as being at high risk. It may be
difficult to categorise children with ME within this approach, although
statutorily services are supposed to be led by needs rather than by finance.
However, mothers with children diagnosed with ME/CFS should certainly be
potentially eligible for Home Care via Social Services Departments.

A key concept in the 1989 Children Act is of 'partnership' with parents and
extended families. One valuable point of reference concerning the rights of
children in the UK is the Children's Legal Centre. (See Resources)

All voluntary agencies concerned with ME should encourage a Joint Agency
Approach from Social Services, Education and Health Professionals. This is
enshrined in the 'partnership' philosophy of the 1989 Children Act and well
documented in the profuse guidance literature which accompanies its
implementation.

Social Security Benefits (This information may be subject to change -
correct in April 1998)

Disability Living Allowance (DLA) is a non-taxable allowance payable to
people up to the age of 65, including children. Families of chronically ill
children or adolescents are often unaware that their child may qualify for
DLA. There are two components:

The Mobility Component is payable to children over 5, who are virtually
unable to walk or require extra supervision outside. It has two rates -
Higher and Lower.

The Care Component is payable at three rates, depending on whether the need
for extra Care is present part of the day, a full day, or for 24 hours. For
full information, obtain leaflets FB2 and HB6 from Social Security Offices
or Post Offices.

Severe Disability Allowance (SDA) Adolescents aged 16 or over may be
entitled to SDA, which is not always mentioned when enquiring about other
benefits. This allowance may be payable to young people who are too ill to
receive any form of education and who are unable to work. Any young person
who is housebound and severely affected by CFS/ME may qualify for SDA in
addition to DLA.

A parent or guardian who has to give up work to care for a sick or disabled
child or teenager may be entitled to Carers' Allowance.

If the family is on a Low Income, money may be available to pay for special
food, or extra heating, for a sick or disabled child.

4.2 Non-Statutory Social Support Services

To find out the needs of children and adolescents with ME/CFS it is best to
ask them directly:

4.2.1 Practical Needs

In 1991, Dr Elizabeth Dowsett chaired a working party to investigate the
special problems of children and young people with ME. 600 questionnaires
were sent out and 500 were returned. The written comments on these forms
were used as the basis for a self-help book for young people with ME. (Moss
1996) During the research for that book, a straw poll of 100 questionnaires
were reviewed to establish the most noted needs by the young people:-

These were:

48% required information to explain about ME to friends, family, medical and
educational professionals.

19% required information on how to manage ME.

15% wanted to make contact with others in a similar position to themselves.

18% had no clearly defined significant need.

Five years later, in 1996, over 2000 letters were sent to a daily newspaper
in response to an article about one child's experience of ME. The same
researcher took a random selection of 100 letters from the file which dealt
with children with ME. Again the most noted needs were:

51% required information to explain ME to friends and family, and
professionals.

17% required information on how to manage ME.

12% wanted contact with others in a similar position to themselves.

20% had no clearly defined significant need.
Needs  % in 1990  % in 1996
Information to explain ME  48  51
Information on how to manage ME  19  17
Contact with others  15  12
No clearly defined significant need  18  20

Some quotations from the free writing:

    "There should be more information. It's difficult explaining why you
can't socialise or why you can't stand or walk far. I get really unhelpful
advice from my friends who think they know the answer".

    "Doctors say 'go home and rest up a bit' but I don't know what that
means".

4.2.2 Emotional Needs

The young people's emotional state was noted from their free writing in both
studies:

From the 1990 study:- 62% had a low self-esteem, 9% had high self-esteem,
and 29% had no clearly defined emotional state.

From the 1996 study:- 75% had a low self-esteem, 5% had high self-esteem,
and 20% had no clearly defined emotional state.

Some quotations from the free writing:

    "It's so difficult to remain hopeful".

    "Life has just passed me by. And I'm only 16".

Many children and young people become isolated and alienated from their
peers, professionals who are involved with them and even members of their
families because they feel strongly that they are misunderstood, that their
illness is trivialised, and their voices not heard. The double burden of an
illness which disrupts practically every aspect of their lives, and their
correct perception that others do not try to understand what ME is really
like must be almost intolerable. Some young people may withdraw into
solitude rather than cope with comments and conversations which are hurtful
and insulting. ME is an illness which hangs in a medical limbo. Adults find
it difficult enough to deal with an illness for which there is no one
accepted name, no treatment and no reliable prognosis. For children, who
even when well are often not listened to or taken seriously, it must be
especially hard to feel that no-one listens or acknowledges what they are
going through. A number of issues relating to emotional needs deserve
attention:

Loss of friends and peers groups

During late childhood and adolescence relationships take on new significance
as they try out new identities and join and leave different social groups
outside school. In a recent study of teenage lifestyles, young people with
ME cited friends and friendships groups as the most important and
preoccupying aspects of their lives. Those who are seriously ill may lose
out on the intimacy and the fun of friends and on the process of developing
self-identity through friendships. They may be rejected because of missing
school and being unable to take part in status giving activities such as
sports and out-of-school late night events such as gigs or discos, or they
be stigmatised just for being ill. The seriously ill or housebound may
become totally isolated from their peers because they do not have the energy
to see friends or even maintain conversation on the telephone. Healthy young
people with busy social agendas quickly lose interest in sick ones. Young
people with ME watch their friends move on socially and academically while
they remain stuck and static.

Loss of self-esteem

For children the impact of ME is profoundly disruptive to their sense of
self-identity and self-worth as social networks are disrupted and
friendships lost. The loss of school, friends, any semblance of social life,
family activities, and possibly years of childhood and adolescence
inevitably take their toll on self-worth. Many such young people become 'old
heads on young shoulders' as a result of their negative experiences with the
medical profession and others, separating them still further from their
luckier peers. How to maintain and re-build self-confidence and self-worth
are a long and isolating illness is one of our greatest challenges.

Trust and acknowledgement

Children and young people, like adults, have to cope with scepticism and the
trivialising of their suffering. Yet unlike adults they have to cope without
the experience of age or the support of their peers. What young people need
more than anything else is to have the impact of ME on their lives
acknowledged. They need people to understand that they are losing a whole
chunk of their lives which can never be regained. They cannot be 12 or 15 or
18 again; that time is lost forever. Without having others acknowledge this
profound loss, they may become reluctant to talk about their feelings
because they sense that they will not be understood. Therefore it is not
surprising that they develop a total lack of trust in doctors and other
professionals who deal with them, and even with family members, and withdraw
into solitude and self-dependence.

Independence and dependence on others.

The teenage years are the natural time for separation from parents. When ME
strikes during this period, many young people of necessity fall back into a
state of dependence on adults. When they should be spreading their wings and
practising flights from the nest, they are stuck at home, usually being
cared for by their mothers. It is important to find ways of giving some
independence to these children even while caring for them. Allowing them
some control over even small things such as when they watch TV, when they
eat, when they go to bed, can make a difference to their negative feelings
of dependence.

It is equally important to involve young people in decisions about their
care by listening to them and letting them participate in discussions.
Mature children and adolescents have the right to make as many choices as
seem appropriate - for example whether to accept therapy or medication. We
should not underestimate how well young people understand their own needs,
nor how important it is to their self-esteem to be consulted about the
organisation of their day-to-day lives and the management of their illness.

Illness as a focus of everyday life

Young people with ME may cope best when parents and siblings treat them as
'normally' as possible. While in reality ME does dominate and disrupt life
within the family, often deeply affecting all family members, nevertheless
carers need to veto endless discussions of the illness and its symptoms, and
to establish a routine in which the young sick person feels less of a burden
and a focus of attention. Many young people may find enormous relief in
talking about anything other than their illness, while at the same time
needing acknowledgement of their plight. This is not an easy balance to
achieve.

4.2.3 Requirements

Everyone concerned with ill children should try to raise the self-esteem of
children and young people with ME, and generate easily accessible
information about the illness - for sources of information see Resources.

Raise the self-esteem of children and young people with ME.

Cotterall 1996 describes two key processes during adolescence: Attainment
and Identity. Adolescence is a time when young people develop their self
identity, through growing independence, matching their thoughts to those of
others. Peer grouping becomes an important part of social/emotional
development.

Young people with ME often do not have the opportunity to belong to a peer
group. Those with mild ME or CFS may be able to attend school, but their
social life is often non-existent. Those who are house and bed-bound quickly
lose their friends, and their self-confidence.

"Young people with little contact with their peers are low in
self-confidence and often develop feelings of inadequacy." (Wadell 1984)

Young people with ME require emotional support in a way that will boost
their self-confidence and empower their return to a social life and learning
as their health slowly improves. ME Youth Organisations (see Resources,
p.)can replace lost peer groups and be a step towards a more positive view
of the future.

The need for easily accessible and appropriate information.

We ideally need a nationwide publicity campaign to highlight the problems of
children with ME/CFS and to educate the public about the true nature of the
illness. Literature of an easily accessible nature is required for children
to understand their illness and learn to manage it effectively. Leaflets and
visual material aimed specifically for children and young teenagers are
needed. This should be seen as separate from the literature required by
their parents.

Information about ME and the management of symptoms should be designed and
written both as leaflets and videos for children, and for adolescents. These
should be available both as hard copies and on the Internet.

Literature and videos about ME, both for children, and for parents,
teachers, and doctors, are available from Action for ME, and from AYME (see
Resources).

Social contact with peers

We need to establish a network of children and young people with ME so that
they can collaborate and communicate with each other. Different young people
have different needs, so a range of options should be available. There are
already several newsletters written for young people and websites are
available.

Emotional needs of parents/carers

Whilst it is seen as vital to involve and empower the children and young
people in the management of their illness, the emotional impact of children
with ME on the family, especially the primary carer, must not be
underestimated. Health, Social Services and voluntary ME organisations
should be able to offer a listening ear, and provide informed advice for
parents and guardians.


5 Service Facilities
for Children and Adolescents with ME/ CFS

5.1 Primary Care

It is suggested that most children should be managed in their own homes by
the primary health team (Royal Colleges Report), but many GPs and school
doctors have scanty information and a poor understanding of the condition
generally, and frequently express feelings of inadequacy to manage ME/CFS in
children. We hope this report will go some way towards helping them. However
we believe that each patient and GP also deserves both diagnostic help and
support by a consultant paediatrician. In some cases a consultant's
expertise carries more weight in supporting and/or protecting a sick child.
The patient support organisations produce literature and advice on many
aspects of diagnosis, care and management, and would be pleased to provide
information to primary care professionals.

5.2 Secondary and Tertiary Care Units (Hospitals and Special Clinics)

We are unaware of any dedicated hospital in-patient units providing
specialist care for children or young people with ME/CFS. There are four
ME/CFS in-patient beds (for adolescents and adults) at Oldchurch Hospital,
Romford, under the care of Dr L Findley, consultant neurologist, but these
are situated in a busy general neurological ward. A few beds are available
in the Burlesdon House Rehabilitation adolescent unit in Southampton.

In general, hospitalisation should only be the option when specific tests or
emergency treatment require it. When this is necessary a bed may be made
available either in an acute paediatric ward, or in an adolescent mental
health unit. We regard both of these situations as totally inappropriate for
the needs of these young patients, and if numbers increase, would prefer
small regional units under the direction of a paediatrician with a special
interest in this illness, together with the development of dedicated
out-patients clinics sub-regionally, staffed by healthcare professionals
with appropriate experience, training or special interest. This would go a
long way to resolve the present very unsatisfactory service reported by many
families.


6 Summary

We have attempted to provide some recommendations for the diagnosis and
management of ME/CFS in children and young people, based not only on
published work, but also on the 'experience and reason' which relies on the
authors' observed facts. (Hippocrates, Aphorisms, 1822). As clinicians and
teachers, we feel that the two most important areas of a child's life are
health and education. But we also recognise that each family requires
multidiscliplinary support. Psychological and emotional services may
sometimes be provided by professional colleagues who have expertise in
dealing with the inevitable disturbances of mind and emotion which accompany
long-term childhood illnesses.

Currently there is much uncertainty regarding the number of children
affected, the true aetiology and pathogenesis, as well as specific treatment
for this illness. This report therefore cannot be the last word, but we hope
it will provide enough information to allow those with less experience to
help their patients to heal slowly and effectively, and to emerge with
honour when they recover. Further funding and research are required to
explore the causes and biological changes in the illness.

Despite the difficulties and lack of understanding about ME, the majority of
young people do eventually recover sufficiently to live satisfying lives.
Published studies about treatments such as cognitive behaviour therapy and
graded exercise give conflicting evidence about its usefulness in ME. Young
patients with who are offered these treatments as part of their management
need to be carefully selected, be willing participants, and be managed by
therapists who understand the illness.

We hope that the information and recommendations about education will give
teachers and education authorities confidence so they can help affected
young people to maximise opportunities to continue their education at home,
before they reach the stage of recovery that allows them to re-enter school,
college, or work.

Summary Points

    * Adolescents, and children as young as five years of age can develop
ME/CFS.
    * The incidence of ME/CFS below 20 years of age has not been
ascertained, but is likely to be less than the incidence in adults
    * The illness has a profound impact on emotional and social development
    * Education may be seriously disrupted, with implications for work and
careers as adults
    * The presentation, especially in children under ten years, may differ
from that seen in adults. Symptoms of severe headache, nausea, and abdominal
pain are common.
    * It is justifiable to make the clinical diagnosis after 2 - 3 months of
symptoms.
    * Younger children more commonly have a gradual onset
    * Investigations should be kept to a minimum
    * The initial investigations may sometimes include a psychological
assessment
    * Management should include pacing of energy, and a daily timetable
agreed with the child
    * The management should be based on good practice principles that
address physical, family, psychological and educational issues.
    * Many children make some degree of recovery within 2 years, however
some will become severely affected and require total care. The reasons why a
minority become disabled are at present not clear.



Appendix A - Case Histories

1) Andrew, with acute onset of ME aged 14.

Andrew, age 14, was an active extrovert teenager. One day at school he
became acutely ill with fever, dizziness, generalised limb pains, vomiting
and headache. Some other pupils at his school suffered a non-specific
febrile illness during the same week. Andrew's symptoms continued unabated
and over the next 4 weeks he remained bedridden. In addition he suffered
from anorexia, hypersomnolence, and he lost weight.

Over the next 3 months he failed to improve. His headaches and limb pains
remained severe, he was mentally confused, irritable and depressed. He was
so unsteady on his feet that he kept falling if he attempted to stand. On
examination he was quiet, immobile, obviously in pain, and had no abnormal
signs apart from a slow pulse of 60/minute. Routine blood test came back
normal.

At 6 months from onset, he was still as unwell as ever, in continuous pain,
and with very poor balance. He was regularly sleeping 18 hours a day, and on
two occasions slept for 36 hours non-stop. By this stage he had lost 2 stone
in weight and hospital admission was contemplated, but postponed. He
received regular gentle passive physiotherapy but was too unwell for home
tuition. At 9 months from onset he was experiencing 'good days' every 4 or 5
days, by which he meant he woke before lunch. On average days he was still
sleeping until mid-afternoon.

At 16 months from onset he reported he was feeling 'great'. By this he meant
he was only sleeping 14 hours per day. His brain was functioning normally
and he had returned to school 3 afternoons a week.

He continued steadily and spontaneously, and eventually returned to full
time schooling with the loss of two full academic years. He took his GCSEs 2
years late, with excellent results. When last heard of, he was head of
School and playing rugby.

2) G.S. - a young girl aged 10 years

A gradual or progressive onset is not uncommon in children.

G was an atopic child who developed colic, eczema and asthma in her first
year, and hay fever and food intolerances in her second and third years.
Aged 6 it was noticed she became exhausted more quickly than her younger
brother after swimming. Aged 9 her asthma subsided, but one month later she
developed a sudden onset of headaches and fatigue. She became increasingly
light and sound sensitive, but continued to go to school part time,
gradually improving over the subsequent summer.

In October her symptoms returned. She kept going as instructed by her
doctors, but she looked very grey and complained of increasing tiredness. It
became obvious over the Christmas holidays that she had exhaustion after
slight effort, but she returned to school in January, only to be sent home
after two days with a suspected viral illness. This marked the relapse of
her severe fatigue, headaches, sound and light hypersensitivity. Following
treatment for sinusitis she temporarily improved, but a month later the
whole family developed an influenzal illness which led to a rapid return of
all her previous symptoms in a more severe form. This time pain spread
throughout her body with aching limbs, and she became rapidly exhausted
after simple activities such as toiletting and eating. She was sleeping
excessively. Routine haematological and biochemical tests were normal.

Other symptoms followed: - Excessive thirst, twitching movements of the legs
and hands, poor balance, staggering gait. She described how her limbs would
not "obey" her mind. She found difficulty in swallowing, with regurgitation;
developed a low body temperature with cold sweats, poor co-ordination, and
she required feeding. She could not remember the names of friends and
classmates.

It is important to exclude other treatable conditions

Further tests to exclude malignant or auto-immune diseases were negative.
But - without any diagnosis being given, rehabilitation was recommended for
a "self-imposed illness". Her parents rejected this view of the illness as
they found it in complete contrast with previous experience of illness.

It is important to consult a doctor who is familiar with the symptoms of ME

A second opinion was sought from a paediatrician, who recognised ME. A
programme of pacing was started, with relief of stressful demands, and
plenty of rest with very gradually increasing activity. Unfortunately there
was further deterioration in early summer, with a rash on the upper torso,
tinnitus, increased muscle weakness, inability to walk or to swallow,
altered taste and nausea with some foods, breathing difficulty,
constipation, vivid dreams, dizziness, blurred vision, mental confusion, and
muscle spasms. She found it very painful to be touched.

By the end of the second summer she could hardly move, her voice
disappeared, her eyes remained closed and she began vomiting. Following a
brief hospital admission to exclude upper gut obstruction and myasthenia
gravis, feeding was established via a naso-gastric tube and pump, using high
calorie liquid feeds. She relaxed more at home but remained in a
semi-comatose state for several months.

Treatment and medication should start slowly using minimal doses initially

Passive physiotherapy to prevent muscle contractures was taught to her
mother, who carried out the movements when she was asleep. A nutritionist
gave advice about vitamin and mineral supplements. The naso-gastric tube had
to be replaced sometimes by the district nurse.

After three months movements began again, but she developed violent
uncontrollable muscle spasms and shaking episodes. Carbamazepine was used to
reduce these episodes, which came daily, increasing in forcefulness during
the course of the day.

Six weeks later the spasms lessened, and emotional responses reappeared with
giggling, crying, anger and fear coming in sequence.

Secondary emotional disturbances are common in long-term illness in
children.

At the time her emotional state appeared very fragile. Her intermittent
vocal sounds again disappeared, the muscle spasms returned, and she
experienced visual hallucinations whenever a person walked into her room.
She later described how voices sounded very confusing and unintelligible.

She slowly began to recover all her functions, starting with improved sleep
pattern, opening her eyes, return of speech and swallowing, voluntary
movements to readjust her position etc. Then came understanding of speech
and language. She appreciated being read to and started looking at books and
eventually began to read for herself. She began to accept visitors again. At
first her peer group friends, then family (but close relatives appeared to
distress her more because they probably communicated their anxiety more
readily to her).

G enjoyed hearing stories about animals. She gradually increased her
tolerance of people, light, sound and smells. As her naming ability
returned, she began to reach for things in a random way, like a baby
exploring her new world.

Three months on she began to try to swallow solid food again. It was
difficult at first, but gradually the swallowing returned.

When she got to the stage of three meals a day, it was suggested that her
naso-gastric tube be removed. A few days later she went down the stairs on
her bottom to have a meal with the rest of the family. Thereafter she walked
like a toddler, learning first to balance then moving between pieces of
furniture and eventually taking herself to the toilet. By this time she
could read again, watch television, or the rabbits playing on the lawn
outside.

Increase motivation by encouraging natural interests.

From then on her recovery was steady and progressive. She went out into the
garden, out in the car with her parents, and even took a friend's dog for a
few yards walk on a lead. Having a puppy of her own proved a helpful
stimulus, and in the summer holidays she was able to go to the seaside and
eventually to take her puppy to training classes, which helped her to
socialise again.

She was determined by now to return to school in September. Preparations
were made with the staff as she would be starting a new secondary school,
and she had not been to school for over a year and a half.

Re-introduction to school should be gradual and school staff adequately
prepared.

She began with mornings only with no games or PE. The first day was
exhausting. Each subsequent day was more exhausting until on the Friday
evening she collapsed with severe leg pains. It took nearly six weeks for
this to recover, but she was able to do academic work at home, and return to
school after half term just for 2 or 3 lessons at a time. Academically she
caught up rapidly, but in retrospect, everyone agreed that her
re-introduction to school should have been more gradual.

G's parents believe that the establishment of trust and confidence at the
beginning, and non-confrontational and co-operative working of the
professionals involved, treating her mostly in her own home environment and
not pressuring her to recover in a set time schedule, have all contributed
to the secure recovery of this child, without traumatic psychological scars
that can appear when more forceful and stressful methods are employed.


Appendix B - Authors

Jane Colby LAMSC; Cert Ed; Former Headteacher; Medical and Educational
Author; Child Services Development Officer, Action for ME

Dr Alan Franklin FRCP; FRCPCH; DCH; DRCOG; Consultant paediatrician,
Chelmsford, Essex; Paediatric adviser to the ME Association.

Dr Anne Macintyre MD; ChB; Medical Adviser to the ME Association

Dr Lynn Michel PhD (Educational psychology); Former Research Sociologist;
parent of sons with ME.

Jill Moss BA; MEd (Special Needs); Director of the Association of Youth with
ME

Jacqueline Siner BA; MA; MSc; CPsychol; AFBPsS; Chartered Educational
Psychologist

Dr Nigel Speight MA; MBBCh; FRCP; FRCPCH; DCH; Consultant Paediatrician,
Durham; Medical Adviser to Association of Youth with ME; Paediatric Adviser
to the ME Association

The authors gratefully acknowledge advice from:

Dr Elizabeth Dowsett, Honorary Consultant Microbiologist, South Essex Health
Trust

Dr David Bell, Paediatrican, Cambridge, Mass., USA

Dr Jenny Altschuler, Consultant Clinical Psychologist and Family
Psychotherapist, Tavistock Clinic, London

Christine Eiser, Director CRC child and family research group, Department of
Psychology, University of Exeter


Appendix C - Diagnostic Descriptions

C1 Clinical Features of Myalgic Encephalomyelitis (ME) (Ramsay 1986)

Myalgic Encephalomyelitis was first described by Dr Melvin Ramsay in 1986:

   1. Abnormal muscle fatigability and weakness, which occurs (up to 72
hours) after minimal effort compared to patient's previous exercise
capability. This post-exertional fatigue may last for days and is unlike any
fatigue the patient has experienced before.
   2. Impairment of peripheral circulation and subjective loss of
temperature control.
   3. A variety of neuropsychiatric ('encephalitic') symptoms, most
prominent being cognitive loss - of memory, concentration and comprehension,
and disturbances of sensation.
   4. Unpredictable variation in severity of symptoms from week to week, day
to day, even hour by hour.
   5. A tendency to become chronic over many months or years.

C2 Diagnostic Criteria for Chronic Fatigue Syndrome (Fukuda et al 1994)

A. Major Criteria

Unexplained, persistent, or relapsing chronic fatigue that is of new onset
(not lifelong), present for at least 6 months. The fatigue results in
substantial reduction in occupational, educational, social or personal
activities.

B. Minor Criteria - there should be at least 4 of these present-

   1. Self reported impairment in short-term memory or concentration severe
enough to cause substantial reduction in occupational, educational, social
or personal activities.
   2. Sore throat.
   3. Tender cervical or axillary lymph nodes
   4. Muscle pain
   5. Multi-joint pain without joint swelling or redness
   6. Headaches of a new type, pattern or severity
   7. Unrefreshing sleep
   8. Post-exertional malaise lasting more than 24 hours

C. Exclusion of other medical illnesses, including drug or substance abuse,
and major psychiatric illness. For a diagnosis of CFS, the case must fulfil
all the major criteria, plus 4 or more of the minor criteria, which should
be present for 6 months or more.

C3 References

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their Special Educational Needs'. Survey, in Press
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low-dose organophosphate exposure', Journal of Nutritional and Environmental
Medicine, 6, 314-350
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C4 Resources

Support Groups for Young People with ME

1) Tymes Trust

Tymes Trust is the longest established national UK service for children and
young people with ME and their families. A respected national charity, it
began in 1988 as the initiative of a group of young people with ME who saw a
need for a friendly, personalised service offering trustworthy information.
It became fully registered in June 2000. Its patron is Lord Tim
Clement-Jones, Liberal-Democrat House of Lords Spokesman on Health (left).

Tymes Trust Children's Officer Jane Colby is a former head teacher,
Consultant for the Education of Children with ME, member of the National
Association of Educational Inspectors, Advisers and Consultants and is on
the UK government Chief Medical Officer's Working Group into CFS/ME. You may
email or write to her for help. Jane is also a well known author and
researcher into ME who writes for children as well as for adults.

A full support service is available free of charge by phone, post and
internet for those under 26 years old, which includes the quarterly TYMES
Magazine. (If you are over 26 you are welcome to register but you will need
to send 5.50 per year to cover costs.) Registrants receive: free Intropack;
free quarterly mailings including a copy of the TYMES Magazine with sections
for all ages (TYMES is recommended by ME specialist and medical author Dr
Darrel Ho-Yen); free birthday and Christmas cards (don't forget to send your
birth date!); a roll of honour service for which young people may nominate
doctors, teachers, schools, carers etc. to receive an illuminated
certificate and have their details listed on the internet; ME experts to
contact for advice. Members outside the UK receive a slightly different
service due to costs. Details on request.

Tymes Trust Children and Families Advice Line: 01245 401080 11.00am-1.00pm
and 5.00pm-7.00pm Monday through Friday.
Young Action Online email: jane@youngactiononline.com

Tymes Trust, PO Box 4347, Stock, Ingatestone CM4 9TE
YAOnline, PO Box 4347, Stock, Ingatestone, CM4 9TE

2) Action for ME

Action for ME is the registered medical charity listed in "Supporting Pupils
with Medical Needs - a good practice guide" published jointly by the Dept of
Health and the Dept for Education and Employment. With 8000 members it
provides information and support to people with ME and their carers. The
Children's Department provides specialist children's services.

Action for ME
PO Box 1302
Wells
BA5 1YE

24 hour information hotline: 0891 122976

3) The Association of Youth with ME (AYME)

AYME is a registered charity for young people under 25 years. It publishes a
bi-monthly magazine called CHEERS, where young members write their own
articles. Other services include a matched pen-pal/tape/e.mail, a chat-line,
birthday cards, an active web-site, and a postal library. A two day
conference is organised annually for social contact, mutual support and
information for the young people and their families.

Young members' voices are heard through their committee. AYME empowers young
people and breaks through their isolation. Families are supported through a
newsletter, helpline for parents and a pen-pal club for siblings.

AYME distributes an information video, titled "What Do You Know About M.E?"
Leaflets about how ME feels, and about friends and relationships for someone
with ME (FRAME) have been written by members. The video and leaflets form
part of an educational pack for schools, sold for Personal and Social
Educational lessons. The Teacher's Book includes lesson plans, together with
Action for ME's "Guidelines for Schools".

AYME
Box 605
Milton Keynes
MK6 3EX

Tel/Fax 01908 691635
Email ayme@powernet.com

4) The ME Association Young Persons Group (MEAYPG)

c/o ME Association
4 Corringham Road
Stanford-le-Hope
Essex
SS17 0AH

Other ME Organisations

Westcare - a Bristol based charity, providing information, and counselling
for people with CFS/ME.

155 Whiteladies Road
Bristol
BS8 2RF

Tel 0117 923 9341
Fax 0117 923 9347

National ME Centre - offers support, diagnosis, and in-patient care (4 beds)

Disablement Services Centre
Harold Wood Hospital
Romford
Essex
RM3 9AR

Tel 01708 378050

CHROME - Case History Research on ME - a registered charity which documents
histories and progress of housebound, severely affected patients with ME.

3 Britannia Road
London
SW6 2HJ

Tel and Fax: 0171 736 3511

BRAME - Blue Ribbons for the Awareness of ME

The Blue Ribbon Awareness campaign was started by a young severely affected
person, Tanya Harrison, to raise awareness about the severity of ME. It is
now known internationally.

BRAME
30 Winmere Avenue
Winterton-on-sea
Great Yarmouth
Norfolk
NR29 4BA

Other Useful Resources

Children's Legal Centre
University of Essex
Wivenhoe Park
Colchester
ESSEX
CO4 3SQ

Tel: 01206 873820
Fax: 01206 874026

Education

NAESC (National Association for Education of Sick Children). Set up in 1993,
its purpose is to improve educational opportunities across the UK for
children whose education is disrupted by serious illness.

NAESC has these goals:

To improve the health, social, economic and cultural opportunities of sick
children. To protect sick children against under-achieving at school, and
being stranded without the educational qualifications needed for working
life. To secure equal opportunities for sick children in all settings.

NAESC will achieve these by: Securing appropriate provision of education for
children in hospital. Defining and improving standards for education of
children who are out of school for health reasons. Providing guidance and
information to help liaison between a sick child and teachers in their home
school. Developing strategies to help children and their parents to achieve
educational continuity and academic progress. Campaigning for compensatory
education for children with interrupted education. Raising professional and
public awareness about models of good educational provision and practice
within the health and education communities.

NAESC
St Margaret's House
17 Old Ford Road
Bethnal Green
London
E2 9PL

Tel 0181 980 8523
Fax 0181 980 3447

Email naesc@ednsick.demon.co.uk

The Advisory Centre for Education is a national independent education advice
service for parents of children in state schools. They can give advice about
legal rights, the roles and powers of Local Education Authorities, and where
necessary provide support for legal actions.

ACE Advisory Centre for Education
18 Victoria Park Square
London
E2 9PB

Tel 0171 354 8321

Further Reading

'ME The New Plague', by Jane Colby. 1996.
First and Best in Education,
Earlstrees Court
Earlstrees Road
Corby
Northants
NN17 4AX
Tel 01536 399011

'Somebody Help ME' by Jill Moss. 1996.
Sunbow Books
AYME
5 Medland
Milton Keynes
MK6 3BH

'ME, A Practical Guide' by Dr Anne Macintyre. 1998.
Thorsons Publishers

'Living with ME' by Dr Charles Shepherd. 1999
Cedar Publishers

Young Action Online    PO Box 4347    Stock     Ingatestone    CM4 9TE

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