FMS COMMUNITY NEWSLETTER # 53


June 21, 2004


2,168  subscribers


Editors: Mary McKennell and Anne-Marie Vidal


 

Editor’s Corner

How do we as disabled people become empowered?  Self respect as well as our unwillingness to be demeaned is important.  Besides having FMS, CFIDS and a few other chronic conditions, I have lost 65% of my hearing.  (“Lost” being a silly term, since I am not likely to find it.) When I speak it is with a slight speech impediment since my hearing failure occurred during a childhood illness.  For years I put up with stupid remarks about my speech and others’ displeasure when I asked someone to repeat themselves.  In my late middle age, I am not so nice.  I brook no stupid comments about my condition nor do I tolerate remarks that humiliate disabled people.  Many people still believe that we are emotionally and intellectually impaired not just hearing or physically challenged.  Recently, my close friend and fellow advocate Sabrina J’s daughter, who has a hearing and a speech disability, experienced cruelty and the hands of a truly ignorant person.  My heart went out to Vanessa, I could feel my throat begin to close and I was sad that I could not protect her from this type of meanness.  My god daughter suffers the same degree of hearing impairment that I do, but she was born that way, and speech is a challenge for her.  Someone asked me recently what was wrong with her and while I chafed at the question, I answered it, because to educate is to advocate.

Voting and playing as active a part in your community as your health permits are also empowering.  For years disabled people did not vote in any significant numbers; this changed in the year 2000 and it must continue to change.  If we do not want to see the programs and entitlements we need disappear, if we want special education and if we want the fully enabled to understand us, we had better be registered voters who cast their ballots.  Some states have permanent absentee ballots for those who cannot stand in line at the polls.  If your state does not, now is the time to find out what assistance and accommodation is available to the disabled voter.   Find out what your community offers in the way of transportation to the polls. Until we are a recognized voting block, we will not be acknowledged.  Register and vote. 


Hugs,
 

Anne-Marie

 


 

CFSAC Meeting
 

We are pleased to announce that the next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will be June 21, 2004.  Please  visit the CFSAC Web site at www.hhs.gov/advcomcfs/announcements.html to  access the Federal Register Notice which provides details of the meeting.
 
         Sincerely,
 
         Dr. Larry E. Fields
         Executive Secretary
         and The CFSAC Support Team

 


 

http://bmj.bmjjournals.com/cgi/content/full/328/7452/1354
 

General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome


Abstract


Objectives

 

To compare general practitioners' perceptions of chronic fatigue syndrome and irritable bowel syndrome and to consider the implications of their perceptions for treatment.

 

Design

Qualitative analysis of transcripts of group discussions.
 

Participants and setting

Randomly selected sample of 46 general practitioners in England.

Results

 

The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. This stereotyping was due to the lack of a precise bodily location; the reclassification of the syndrome over time; transgression of social roles, with patients seen as failing to conform to the work ethic and "sick role" and conflict between doctor and patient over causes and management. These factors led to difficulties for many general practitioners in managing patients with chronic fatigue syndrome. For both conditions many participants would not consider referral for mental health interventions, even though the doctors recognised social and psychological factors, because they were not familiar with the interventions or thought them unavailable or unnecessary.

 

For the  complete article,  see the link posted above

 


 

Back Care tips from Bottom Line's Daily Health

 

New June 7, 2004

 

“SELF-INFLICTED WOUNDS”..BACK-FRIENDLY POCKETBOOKS AND BACKPACKS

 

Swinging a heavy purse from one shoulder -- or carrying an overloaded backpack on one shoulder -- are the most common mistakes we make. As our body leans to one side to handle the extra weight, our spine is forced to curve toward that shoulder, warns Dr. McAndrews. This contracts the shoulder muscle, which can go into spasm (remain in a contracted state). Because shoulder muscles extend upward into the neck and downward into the back, neck and back pain as well as shoulder pain and headaches can develop.

To prevent these problems, Dr. McAndrews recommends that you carry a pocketbook with a strap long enough to put over your head onto the opposite shoulder. This centers the gravity of the bag's contents and projects its weight to a point between your feet. Of course, it also helps to reduce the size of the purse and the amount in it.

The same goes for backpacks. They should never be carried on one shoulder. To distribute the weight evenly, straps should go over both shoulders and the bulk of the pack should rest against the lumbar region (the lower part of the back that arches forward), says Dr. McAndrews. If you can convince your child that it's cool, you also might consider a backpack with wheels.

A back-friendly backpack has...

BACK PROTECTION AT THE COMPUTER …

THE SECRETS OF HEALTHY LIFTING…

 

The correct way to lift an object is...

WHEN TO SEE THE CHIROPRACTOR

 

Dr. McAndrews believes that everyone should be examined by a chiropractor at least once a year. We frequently traumatize our bodies in many ways, throwing our musculoskeletal systems into misalignment. In order to avoid serious health problems down the road it is best for a chiropractor to correct these misalignments and restore functionality sooner rather than later.

 


 

http://www.sciencedaily.com/releases/2004/06/040603064249.htm

 

Neurosurgeons Assessing Spinal Cord Stimulator In Treatment Of Chronic Pain
 

A neurosurgeon at the University of Illinois at Chicago is assessing how well an implanted electronic device that stimulates nerve fibers in the spinal cord relieves chronic pain.

The device, made by Advanced Neuromodulation Systems, is already approved by the Food and Drug Administration, but is undergoing further evaluation at several sites throughout the United States for potential marketing overseas.

"Coping with chronic pain is one of life's greatest challenges," said Dr. Konstantin Slavin, assistant professor of neurosurgery at the UIC College of Medicine.

More than 50 million Americans suffer from chronic pain, Slavin said, and many of them become partially or totally disabled. "That's why it is important to identify effective methods for treating intractable pain, and document the extent to which these treatments can improve patients' quality of life."

Functioning like a cardiac pacemaker, which uses electrical impulses to regulate the heartbeat, the Genesis(TM) Implantable Pulse Generator transmits low-level electrical impulses to the spinal cord to modify pain signals. The electrical impulses alter messages before they reach the brain, replacing the pain signals with what patients describe as a tingling sensation…

The complete article can be found at the link posted above.


 

htp://www.nod.org/content.cfm?id=1486
 

The Disability Vote Made History in 2000.
In 2004, It May Do So Again.


Date: 05/03/2004

by Brewster Thackeray, N.O.D. Vice President &Director of
Communications

No candidate for president would logically overlook one-fifth of the
nation's voting-aged population. That massive slice of the electoral
pie comprises the roughly 40 million Americans with disabilities who
are 18 and over. Though not as cohesively identified nor
traditionally courted as other minority groups, the disability vote
is one that politicians ignore at their peril.

The 2000 presidential election proved the significant role voters
with disabilities play. In the previous presidential election in
1996, only about a third of people with disabilities voted, but
turnout was 41 percent in 2000, according to an N.O.D./Harris poll
conducted at the time. Grassroots "Get out the disability vote"
efforts deserve much of the credit. So do organized campaigns to
ensure that people with disabilities were informed of their right to
register and vote; efforts to ensure that service providers met their
legal requirement to offer their clients the opportunity to do so;
community efforts to make polling places and voting machines more
accessible; and, one can assume, the issues and positions that the
candidates presented to voters.

 


 

http://www.nlm.nih.gov/medlineplus/news/fullstory_17738.html


U.S. Worried by High Arthritis Rates May 14, 2004

ATLANTA (Reuters) - Approximately one quarter of American adults have been diagnosed with arthritis and another 17 percent may be suffering from the crippling disease, the Centers for Disease Control and Prevention said on Thursday.

Arthritis, a musculoskeletal disease that causes painful inflammation in the joints, is the leading cause of disability in the United States and a major financial drain on the nation's health care system.

The percentage of those diagnosed with some form of arthritis, gout, lupus or fibromyalgia ranged from a low of 17.8 percent in Hawaii to a high of 35.8 percent in Alabama in 2002, according to a CDC survey of 30 states.

The median rate was 27.6 percent.

"That is a huge number compared to most other diseases," said Dr. Chad Helmick, a CDC arthritis expert, who noted that the number of Americans with arthritis is expected to increase sharply as the baby boomer generation heads into retirement.

The CDC also found that about 20 percent of respondents in a number of states in the survey had chronic joint pain, aching or stiffness indicating possible arthritis that had not been diagnosed.

Besides causing untold human suffering, the disease is also exacting a heavy financial toll. …

The complete article can be found at the link posted above.

SOURCE: Morbidity and Mortality Weekly Report, May 14, 2004.


 

http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5738&PROD=PH104

 

Sleep Assessment in a Population-Based Study of Chronic Fatigue Syndrome
 

06-09-2004 Elizabeth R Unger(1), Rosane Nisenbaum(1), Harvey Moldofsky(2), Angela Cesta(2), Christopher Sammut(2), Michele Reyes(1) and William C Reeves(1)

(1)Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia, USA

(2)Sleep Disorders Clinic of the Centre for Sleep and Chronobiology, Toronto, Ontario, Canada
 

BMC Neurology 2004, 4:6 doi:10.1186/1471-2377-4-6

 

Published 19 April 2004

© 2004 Unger et al; licensee BioMed Central Ltd. This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose, provided this notice is preserved along with the article's original URL.

 

Background
 

Chronic fatigue syndrome (CFS) is a disabling condition that affects approximately 800,000 adult Americans. The pathophysiology remains unknown and there are no diagnostic markers or characteristic physical signs or laboratory abnormalities. Most CFS patients complain of unrefreshing sleep and many of the postulated etiologies of CFS affect sleep. Conversely, many sleep disorders present similarly to CFS. Few studies characterizing sleep in unselected CFS subjects have been published and none have been performed in cases identified from population-based studies.

 

Methods
 

The study included 339 subjects (mean age 45.8 years, 77% female, 94.1% white) identified through telephone screen in a previously described population-based study of CFS in Wichita, Kansas. They completed questionnaires to assess fatigue and wellness and 2 self-administered sleep questionnaires. Scores for five of the six sleep factors (insomnia/hypersomnia, non-restorative sleep, excessive daytime somnolence, sleep apnea, and restlessness) in the Centre for Sleep and Chronobiology's Sleep Assessment Questionnaire© (SAQ©) were dichotomized based on threshold. The Epworth Sleepiness Scale score was used as a continuous variable.
 

Results
 

81.4% of subjects had an abnormality in at least one SAQ© sleep factor. Subjects with sleep factor abnormalities had significantly lower wellness scores but statistically unchanged fatigue severity scores compared to those without SAQ© abnormality. CFS subjects had significantly increased risk of abnormal scores in the non-restorative (adjusted odds ratio [OR] = 28.1; 95% confidence interval [CI]= 7.4–107.0) and restlessness (OR = 16.0; 95% CI = 4.2–61.6) SAQ© factors compared to non-fatigued, but not for factors of sleep apnea or excessive daytime somnolence. This is consistent with studies finding that, while fatigued, CFS subjects are not sleepy…

To read the conclusion and discussion of this research project, please go to

http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5738&PROD=PH104

 


 

http://www.medscape.com/viewarticle/478579
 

Tegaserod Reduces Upper GI Symptoms of Functional Heartburn

 

By Karla Gale
 

NEW ORLEANS (Reuters Health) May 21 - Tegaserod, a drug used to treat irritable bowel syndrome, also reduces esophageal pain in patients with functional heartburn, according to a study reported here at Digestive Disease Week.

Tegaserod, a 5-HT4 receptor agonist, is approved for treatment of constipation in women with IBS, Dr. Philip B. Miner told conference attendees. It induces neuromodulation that increases GI motility and reduces visceral pain. Functional heartburn, which is characterized by absence of inflammation and erosion, seems to involve altered sensorimotor function.

Dr. Miner's group at the Oklahoma Foundation for Digestive Research in Oklahoma City conducted a double-blind crossover study with 42 subjects with functional heartburn. Treatment consisted of a 2-week trial of tegaserod and a 2- week trial of placebo, with a 7 to 10 day washout between treatment arms.

Tegaserod significantly decreased acid reflux and regurgitation. After the trial was completed, 63.4% subjects expressed preference for active treatment, versus 12.2% who preferred placebo.

To explore its mechanism of action, the investigators tested the patients with intraesophageal balloon distension and intraesophageal acid perfusion before and after treatment with the drug.

Tegaserod did not alter the response to acid infusion. However, the sensation of the balloon distention changed, with an increase in the amount of balloon pressure and volume required to induce pain.

Mechanical distention was also experienced differently after active treatment, Dr. Miner told Reuters Health, with subjects saying that before treatment, the balloon distention was associated with chest pain. After treatment, they reported that it felt more like heartburn.

These findings suggest that "there are two nerve pathways" that result in the sensation of esophageal pressure in patients, the researcher said.

He and his associates believe their findings will "open the door to further research into the use of tegaserod.


The complete article is at:
http://www.medscape.com/viewarticle/478579

 


 

http://www.rosomoffpaincenter.com/index.html


"THE FACES OF PAIN"

by Renée Steele Rosomoff MBA, RN, CRRN, CRC, CDMS

Historically health care providers -- especially in hospitals--have always prided themselves on knowing a patient's room and bed number, the diagnosis, pertinent vital signs, and lab results. Yet, often they did not know the patient's name, their marital status, whether they had children, what were their hopes, fears, dreams, occupation, educational background and what the impact of the medical problem was to the patient and significant others. In, short, they did not know the PERSON in bed who was the object of their care and whose life was entrusted to them.

Those of us who treat people in pain would like to think that we have come a long way. We now pride ourselves on treating the whole person. We understand the importance of the mind-body connection as well as the significance of familial, occupational, and socioeconomic aspects of the patient's universe.

I am a past board member of APS, President of SPS, and Programs Director of a large multidisciplinary pain team. And yet I continue to broaden my knowledge of the many diverse disciplines required and the breadth of the expertise needed to treat that most devastating and ubiquitous consequence of trauma or illness--PAIN! Those of us who are trained in this specialty are aware of the complexity of pain. We know that the treatment cannot be "one size fits all". We know there is acute pain, chronic pain, cancer-related pain, pediatric, geriatric, post-op, labor pain, as well as head, neck and back pain, and phantom pain--the list is almost unending.

In addition to my long-forgotten encounter with unrelenting pain, when I bargained with the Almighty for just one pain-free minute, I have been professionally involved for over twenty years with the impossible quest to annihilate pain or to accept the more realistic goal to ameliorate pain. Therefore, I though that I fully understood the scope of the problem and the suffering component. However, recently when I had the privilege to serve as a member of the Florida Pain Commission and hear the testimony of the courageous consumers and providers, I truly saw "THE FACES OF PAIN."

I was overwhelmed, aghast, and amazed at the sum total of the suffering and the terribly lonely struggle with this monster "pain" that so many people must endure. While we have heard such histories from our patients, the magnitude of this problem was larger than I imagined.

The testimonies given with quiet dignity were heartrending, frightening, and sobering because it could happen to anyone of us. I experienced a sickening realization that we have all been working for many years to help people in pain, yet we have reached so few! They came to the microphone one by one and quietly told their stories about their decent into the abyss. I remember them...

There was the man in the wheelchair who had a good job and new marriage when his knee and his life were shattered eight years ago in a mugging. After endless treatment he still has dysesthetic pain which is so intolerable that he once threatened to shoot off his leg and was confined to a psychiatric hospital as a suicide risk. He has lost his job, his wife, and just about everything except his constant companion--PAIN. He cannot find a physician to prescribe the medications he needs for pain. He is treated like an addict and he continues to cry for help. The systems have failed him.

A physician testified that pain medication is not readily available in his county "after hours." Pharmacies, afraid of robbery, will not keep controlled substances on hand. This dedicated doctor spends half the night trying to obtain narcotics for a cancer patient and driving across the county to bring the patient the medications needed.

Hospice nurses told many horror stories about patients living and dying in agony because physicians (including some medical directors of Hospices) were not knowledgeable of pain management and pain medication use, and were unwilling to prescribe proper medication or dosage.

There was a young oncology nurse who testified about her study on the length of time that indigent and very sick cancer patients must wait to receive care. The results were mind boggling--people waiting 8 to 12 hours to see a physician only to wait another 8 hours to have their prescriptions filled! After enduring all of that, some prescriptions given were not much stronger than aspirin and of little use to the patient.

There was the 47-year-old man suffering from back pain since 1979 who had 27 surgeries to his back. Once a long-distance runner, he now spends all of his time seeking pain relief. He attempted suicide twice and was arrested trying to get drugs for pain. He went to a methadone clinic and claimed he was an addict so he could get medication. He is homeless because he cannot afford to buy medication and also pay his rent. And still lives in fear that his medication will be cut off any day.

Many pain sufferers told how narcotics made them functional yet lost them their self-respect. They are stigmatized and treated like addicts who are seeking drugs for recreational purpose.

A former social worker with RSD testified about years of pain and fights with her payor to receive care. She previously had been tried on simulators and methadone. Finally, she was able to have a morphine pump implanted but subsequently had to undergo multiple surgeries to replace the pump due to infection. The pump helps to keep her functional But she has problems obtaining the medications that cost $1,400.00 a month. The insurance company paid $10,000.00 for the pump but will not pay for the medication that goes into the pump! Therefore, the pump is useless and she now lives with intolerable pain.

Many physicians expressed fear of the medical regulatory boards if they write too many prescriptions for narcotic/controlled substances. One physician reported that the DEA had paid him visit that very morning and how frightening the experience had been. Many patients expressed fear that their physicians would stop writing prescriptions for pain medications. Many told of previous experiences when they had been cut off. A young anesthesiologist testified about the many insurance plans with little or no coverage to pay for pain treatment or even for an Epidural block for childbirth. Women in labor were told that this type of treatment is a "LUXURY."

Oncology nurses told of children with only a few weeks to live who were dying in agony. The parents refused to have narcotics given to their children because of fear of addiction. We heard of cancer patients who must choose between paying for chemotherapy treatments to possibly save their lives or paying for pain medication to relive their torture!

The horror stories seemed endless and I realized how evident is the need for all of our services. Yet our challenge is even greater today because we exist in a payor climate where the alleviation of pain may well be considered a luxury. So I urge each of you, when the stress is great and you want to give up, remember the "FACES OF PAIN" you, too, have seen. Resolve to continue the fight so we may be able to help the pain sufferers who are legion. to treat functional heartburn."


http://health.discovery.com/news/healthscout/article.jsp?aid=510827&tid=2 When Old Injuries Predict the Weather May 23 2004   SUNDAY, May 23 (HealthDayNews) -- Sometimes you don't need a weather forecaster to tell you the barometric pressure is changing. Just ask someone with an old injury. Significant drops in air pressure usually are an indication that a storm is approaching, but people with bone or joint problems caused either by prior injuries or arthritis frequently report increases in pain that coincide with such fluctuations. Doctors have yet to understand why air pressure might trigger such pain, but theories center on nerves surrounding the joints that may be highly sensitive to drops in air pressure, according to the American Academy of Orthopaedic Surgeons. While most people do not notice pressure changes, it's been speculated that inflammation or swelling on joints in the body that have sustained injury may be slightly increased with the subtle pressures placed on the body by barometric pressure changes… For the complete article go to the link given above.
 


 

http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=8892

 

Reported June 14, 2004
 

Epilepsy Drugs Linked to Bone Loss

(Ivanhoe Newswire) -- Older women who take drugs for epilepsy may be risking bone loss.

That’s the key finding from a new study out of the VA Medical Center in Minneapolis and the University of Minnesota. Researchers tested post-menopausal women and found those on epilepsy drugs were significantly more likely to have lower scores on heel and hip tests to measure bone density than women not taking the drugs.

The loss for women taking the drugs was nearly two-times higher in both the heel bone and the hip. Those numbers held true even after the researchers adjusted their findings to take other factors that could be causing bone loss into account. More than 6,000 women participated in the study.

“If this rate of bone loss is not addressed, the risk of hip fracture for these women will jump by 29 percent over five years,” says Kristine Ensrud, M.D., M.P.H., one of the study’s authors. “Older women taking epilepsy drugs should be screened for osteoporosis and counseled about the importance of getting enough calcium and taking vitamin D supplements.”…

For the complete article, go to the link given above.

 



http://www.fmaware.org/fmOnlineNewsletter/2004/vol4_no5/article_migraines.htm

 

It’s Not All In Your Head. What You Need To Know About Migraines

 

By Ed Ritchie

 

When is a headache something more than just a headache? It’s not such a frivolous question when fibromyalgia enters the picture. Is the pain another symptom of fibromyalgia? Or is it a migraine that can be relieved, and in many cases prevented, by special treatments?

 

Migraines have confounded researchers and sufferers alike throughout history, and many famous people have reported having the painful symptoms; Julius Caesar, Freud, Van Gogh, to name a few. As with fibromyalgia, women outnumber men, and the exact cause continues to elude researchers. Yet, what we do know allows for good odds in recognizing the symptoms.

 

Recognition is important in determining the treatment. Research shows that many migraine sufferers don’t quite understand the nature of their symptoms. According to the National Headache Foundation (NHF) in Chicago, 32 percent of self-reported migraine victims have not been diagnosed by a physician, and a majority admit having attributed the pain to stress or tension headaches and/or sinus pressure. A little information can easily clear up the confusion.

 

To start, a migraine is clinically defined as a vascular headache. The pain and other symptoms are associated with changes in the size of the brain’s arteries. Unfortunately, it doesn’t take much to trigger these changes. The most common causes include:

 

Emotional stress, and the “flight or fight” physical reactions that follow. We’re not talking about severe stress here. Everyday tension is enough for some unlucky people. (It’s not unusual to express that tension by clenching the jaw, or grinding teeth while awake or asleep. But scientists have some new solutions that we’ll discuss later.)

 

Food sensitivity. Too bad for those of us that enjoy our snacks. As much as 30 percent of migraines can be attributed to foods. Some of the more common culprits are aged cheese and alcoholic beverages, food additives such as nitrates typically found in pepperoni, hot dogs and meats of the cold cuts variety, and the MSG typically used in Chinese food. On the other hand, skipping meals can be a cause.

 

Caffeine. Do you really need that double espresso or monster cola big gulp? Excessive consumption of coffee or colas can trigger migraines. Withdrawal from such beverages can have the same effect.

 

For the complete article go to the link given above.

 


 

http://my.webmd.com/content/article/86/99164.htm

 

Most Painful Jobs Involve Squatting, Monotonous Tasks
 



 

May 6, 2004 -- Fifteen out of 100 workers report widespread pain after a year on the job, a British study shows.

The jobs most likely to involve widespread pain: podiatry (foot doctors) and army infantry. Jobs requiring repetitive motion and jobs that require prolonged squatting were most likely to cause pain.

The findings come from Elaine F. Harkness and colleagues at the University of Manchester in England.

"We demonstrated that the new onset of widespread pain is common and the risk [comes from many factors]," they report in the May issue of Arthritis & Rheumatism. "The strongest independent predictors of symptom onset were, however, work-related psychosocial factors."

The researchers looked at a wide range of jobs notorious for high rates of muscle and/or skeletal pain. They specifically defined "widespread pain" as pain in the spinal area, or pain on both sides of the body. This kind of pain is typical of the painful condition known as fibromyalgia -- although true fibromyalgia includes other specific signs and symptoms as well.

In previous studies of workplace pain, it's been hard to tell how much a job contributes to a person's pain. That's because people in pain often have to leave their jobs -- leaving behind workers who have less pain, or who have higher pain thresholds. It's also been hard to tell whether people had pain before starting their jobs.

Harkness and colleagues solved this problem by looking at newly hired workers. Only those free of pain from the outset were included in the study. The researchers then checked on the workers one and two years later.

Several factors were linked to reports of widespread pain:

·         Lifting more than 15 pounds with one hand

·         Lifting more than 24 pounds with two hands

·         Pulling more than 56 pounds

·         Prolonged squatting

·         Low job satisfaction

·         Low social support

·         Monotonous work

For the complete article, go to the link given above.

 


 

http://www.medscape.com/viewarticle/480664?src=mp

Yoga, Exercise Improve Fatigue Associated With Multiple Sclerosis 

 

Laurie Barclay, MD

 

June 11, 2004 — Yoga and exercise are about equally effective in improving symptoms of fatigue but not of cognitive dysfunction in patients with multiple sclerosis (MS), according to the results of a randomized trial published in the June 8 issue of Neurology.

"Besides quality of life, fatigue, and mood, there are a number of cognitive changes often associated in MS that may be impacted by yoga or physical activity," write Barry S. Oken, MD, from Oregon Health & Science University in Portland, and colleagues. "Despite the widespread advocacy and use of yoga in MS, there have been no controlled clinical trials."

The investigators randomized 69 subjects with clinically definite MS and Expanded Disability Status Score not greater than 6.0 to one of three groups: weekly Iyengar yoga class along with home practice, weekly exercise class using a stationary bicycle along with home exercise, or a waiting-list control group.

Of the 69 subjects, 12 subjects did not complete the six-month study. There were no adverse events from either active intervention. On a battery of cognitive measures focused on attention and on physiologic measures of alertness, neither active intervention was associated with significant improvement on either of the primary outcome measures of attention or alertness.

Compared with the control group, both active interventions produced improvement in secondary measures of fatigue, including the Energy and Fatigue (Vitality) score on the Short Form (SF)-36 health-related quality of life, and general fatigue on the Multi-Dimensional Fatigue Inventory (MFI). There were no clear changes in mood related to yoga or exercise, based on the Profile of Mood States and State-Trait Anxiety Inventory.

Potential study limitations include possibly random results from multiple comparisons, lack of power for medium effect sizes, preponderance of female subjects, and lack of generalizability to a typical community yoga or exercise class….

 

The complete article is at the link listed above

 

Neurology. 2004;62:2058-2064

 


 

Thanks to  Co-Cure June 16
 

From Margaret Holt <Uncmom59@AOL.COM>

This is a call to all voting members and friends of the United States
disability community and their organizations.  Please express your wishes
on the following matter as soon as possible.  A representative from the
State Dept. informed us that in the American system, this type of
participation could make the difference in an administration which is
divided on the matter of U.S. active participation in drafting and possible
signing of the first International Convention on the Rights and Dignity of
Persons with Disabilities.  Please go to the
www.congress.gov
website and
contact your representatives as soon as possible; and pass this message
along to our other disability groups and persons.  We have an opportunity
to make our voices heard - let's not waste it.

Letter to U.S. Governmental Representatives in
Support of International Disability Convention

For the complete announcement go to www.co-cure.org

 


 

http://www.medscape.com/viewarticle/477464


Management of IBS With Constipation: An Expert Interview With Peter Whorwell, MD

. Medscape spoke with Peter Whorwell, MD, Doctor and Senior Lecturer, University of Manchester, Manchester, England; Consultant Physician, Wythenshane Hospital, Manchester, England, to discuss the current challenges facing the physician treating the patient with IBS with constipation, with a view toward the role of serotonergic mechanisms in disease pathophysiology.

Medscape: The American College of Gastroenterology Functional Gastrointestinal Disorders Task Force indicated that treatment of altered bowel habits (eg, constipation) without targeting other IBS symptoms represents suboptimal treatment of the patient with IBS. Within this context, what is the goal of therapy for patients suffering from IBS, and why is it important to provide such global symptom relief vs improvement in single symptoms?

Peter Whorwell, MD: The primary symptoms of IBS are abdominal pain, abdominal distension or bloating, coupled with some form of bowel dysfunction. In addition, these patients often complain of a variety of extra-intestinal symptoms, such as backache, lethargy, and urinary symptoms.[1] Bowel dysfunction may be the most intrusive feature of the illness for one individual, whereas a completely different symptom, such as bloating, may be the most bothersome for someone else. Furthermore, it is unusual for patients to report that a single symptom is the only one that concerns them. This explains why, in the clinical situation, just relieving one symptom such as pain or bowel dysfunction does not necessarily result in a contented patient.

Thus, an ideal treatment should relieve as many symptoms as possible, and this is best captured, especially in the clinical trial situation, by some form of global measure. Therefore, the preferred primary outcome in such studies is global symptom relief, although specific IBS symptoms can still be assessed as secondary outcomes.

Multiple symptom relief is the criterion against which all IBS medications will be judged in the future because this is the outcome that offers the best chance of a good result in the clinic.

Medscape: What is the potential role of serotonin signaling in the pathophysiology of IBS (eg, visceral hypersensitivity, altered intestinal secretion, altered gastrointestinal motility), and what implications may this hold for treatment of IBS with constipation?

Peter Whorwell, MD: The majority of the serotonin (5-hydroxytryptamine [5-HT]) in the body resides in the gastrointestinal tract, where it plays an important role in modulating physiologic events. A variety of 5-HT receptors have been characterized, but those that currently appear to be most relevant to the gastroenterologist are the 5-HT1, 5-HT3, and 5-HT4 receptors, with the latter 2 being the focus of particular attention in IBS.

Antagonism of the 5-HT3 receptor results in a slowing of gut transit, whereas agonism of the 5-HT4 receptor has a prokinetic effect, partly as a result of stimulating the peristaltic reflex. This fits well with some work conducted in my laboratory, which was presented during this year's DDW meeting. This work shows that circulating platelet-depleted plasma levels of 5-HT are raised above normal after a meal in patients with IBS with diarrhea, whereas these levels appear to be lower than normal in patients with IBS with constipation.[2]

Thus, a 5-HT4 agonist would appear to be a logical approach to treating patients with IBS with constipation, not only because of its prokinetic effects, but also because there is evidence that this class of drug also has a beneficial effect on visceral sensation and stimulates intestinal secretion.

Medscape: Drugs that target the serotonin receptors therefore represent a viable approach to the treatment of IBS. In this setting, tegaserod, a highly selective 5-HT4-receptor partial agonist, has been approved for the treatment of women with IBS whose primary altered bowel symptom is constipation. A number of trials, including TENOR (Tegaserod Nordic Trial) and ZAP (Zelmac In Asia-Pacific), have investigated the safety, efficacy, and tolerability of this agent. What were the key findings of these studies?

Peter Whorwell, MD: Over the last few years, a series of clinical trials have been reported that consistently indicate that tegaserod is significantly superior to placebo in relieving the symptoms of IBS with constipation. In addition to correcting bowel function, tegaserod also improves other features of IBS such as pain and global well-being. Another effect that has been noted in these trials is a tendency for the drug to reduce bloating. These trials have recently been the subject of 2 in-depth reviews,[3,4] and a number of additional studies confirming the efficacy of tegaserod were reported during DDW 2004.

Safety has become an important issue surrounding the 5-HT modulating drugs after reports of severe constipation and ischemic colitis following the use of the 5-HT3 antagonist alosetron. The constipation resulted from the inappropriate prescription of the drug to patients with IBS with constipation, and the ischemic colitis fortunately appeared to be self-limiting once the drug was withdrawn. Although tegaserod is unrelated to alosetron and binds to a different receptor, this experience regarding alosetron has, in this physician's view, resulted in some unnecessary concern associated with the prescription of any drug associated with the 5-HT system. It is important to appreciate that it is now being recognized that ischemic colitis appears to be more common in patients with IBS, which is going to make it very difficult, in the future, to be sure about an association with a particular IBS drug unless the phenomenon occurs especially commonly. Nevertheless, no causal relationship between tegaserod and ischemic colitis has been described. It is also encouraging to note that tegaserod does not have any effect on the QTc interval, an effect that has been reported with some prokinetic drugs.

Thus, tegaserod offers effective treatment for patients with IBS with constipation with, to date, a remarkably good safety profile…

The complete article is at the link posted above.

 


 

http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5751&PROD=PH1

 

Fibromyalgia: Explaining Unexplained Pain

06-16-2004 from WebMD Scientific American® Medicine

Posted 02/23/2004

John Winfield, MD

Fibromyalgia is a syndrome characterized by generalized pain, fatigue, disturbed sleep, and numerous unexplained somatic complaints that is present in at least 5% of the general adult population (mostly women) in Western countries.

With the exception of painful tender points, the clinical, routine laboratory, and imaging evaluations in uncomplicated fibromyalgia are normal, which has led some to assert that this syndrome either does not exist or is strictly a psychological disorder. Fibromyalgia largely overlaps with chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), temporomandibular joint pain, "myofascial pain syndrome," and other regional pain syndromes. Best classified at the present time as one of a series of "symptom-based conditions" or "functional somatic syndromes," recent research in the neurophysiology and neuroendocrinology of pain demonstrates that fibromyalgia is not simply a psychological disorder.

Pain, the hallmark of this syndrome, diffusely radiates from the axial skeleton and is localized to muscles and muscle-tendon junctions of the neck, shoulders, hips, and extremities. Pain thresholds are reduced, and many patients exhibit generalized allodynia, defined as pain from normally nonpainful stimuli. Although depression, anxiety, and other psychiatric comorbidities are commonly present, the pain and fatigue associated with fibromyalgia have demonstrable pathophysiologic bases. …

The complete article can be found at the link listed above.



http://www.usatoday.com/news/washington/2004-06-15-uninsured-report_x.htm

Report: 82M went uninsured

By William Welch, USA TODAY

WASHINGTON — A report being released Wednesday by a private health care group estimates that nearly 82 million Americans went without health insurance at some point during the past two years. The sharp increase suggests the problem runs deep into the middle class and could have broad political impact this fall.

The report, based on Census Bureau data, estimates that one in three  Americans younger than 65 were uninsured for a time during 2002 and 2003. Half were uninsured for at least nine months, and two-thirds for at least six months.

The analysis was conducted by the Lewin Group, a private health consulting firm, for Families USA, a liberal health care advocacy group. Ron Pollack, executive director of the group, said the findings demonstrate that the lack of health insurance is no longer a poverty issue or confined to the elderly, but "a concern of self-interest to middle-class and working families."…

The complete article is at the link posted above.

 


 

http://www.medscape.com/viewarticle/480936?src=mp
 

Echinacea May Not Be Effective for the Common Cold

 

Laurie Barclay, MD
 

June 15, 2004 — Echinacea may not be effective for the common cold, according to the results of a randomized, double-blind trial published in the June 14 issue of the Archives of Internal Medicine. However, the investigators suggest that more studies of different preparations and doses may be needed to validate previous claims.

Echinacea purpurea stimulates the immune response and is promoted to reduce symptom severity and the duration of upper respiratory tract infections,” write Steven H. Yale, MD, and Kejian Liu, PhD, from Marshfield Clinic Research Foundation in Wisconsin. “Previous research suggests that Echinacea may be most effective at lessening the severity and duration of the common cold when taken early in the illness, and has little to no preventative benefit.”

Within 24 hours of cold symptom onset, 128 patients were enrolled and randomized to receive either 100 mg of E. purpurea as freeze-dried pressed juice from the aerial portion of the plant, or a lactose placebo three times daily until cold symptoms were relieved or until the end of 14 days, whichever came first. At enrollment, the groups were similar in sex and age distribution, time from symptom onset to enrollment in the study, average number of colds per year, and smoking history…..

The complete article is at the link posted above.
 


 

(Thank you to Co-Cure for its June 11 announcement of this article.)


GlaxoSmithKline faces US lawsuit over concealment of trial results

The British pharmaceutical giant GlaxoSmithKline (GSK) is facing a major lawsuit in the United States over alleged concealment of negative trial results involving its antidepressant paroxetine (marketed there as Paxil and in Britain as Seroxat).

The civil suit, filed by New York state's attorney general, Eliot Spitzer, charges the drug company with "repeated and persistent fraud" in concealing the results of studies that suggested that paroxetine was ineffective in treating depression in adolescents…

Complete article can be read at http://bmj.bmjjournals.com/cgi/content/full/328/7453/1395?eaf

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