December 27, 2003

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December 27, 2003
Editor: Mary McKennell
2128 subscribers and 8 new subscribers.
Welcome aboard new subscribers!

November was a very disruptive month for those of us in Southern
California. Somehow, November came and went without finding the time to
get a newsletter out. And December has almost made it out the door! As a
result there are articles here on coping with holiday stress which is
just about over. I decided to leave them in. Either they will help you
see what you did wrong this year or help you feel good about some
choices that you made. Keep them for reference for the next holiday
season. :-)

Holiday time is a busy time from October through January. Making choices
for how to spend our energy is a major challenge at this time of year.
For some people this time of year results in a major collision between
the person they used to be and they person they are becoming. I think
that is what I have been experiencing the last few months. I clearly see
for the first time that I am a Type A personality trapped in what has
become a Type B body. (Is there such a thing as a C-?) I keep bumping my
head against the wall trying to make my Type B body operate like the
Type A body it once was. I finally convinced my Type A personality that
it did not matter that my Christmas tree did not get decorations on it
until December 24th and that people would be just as glad to get an
annual greeting from us in February or March.

I have come to appreciate even more the importance of an accountability
group in the ongoing task of pacing myself. There are always choices
between good, better and best. I often need the insight of an outsider’s
viewpoint as to what the BEST choice is in the way I spend my energy. I
have a group of three to four people that I use as a sounding board when
I am considering taking on a new project. I have become use to asking
them what they think about a particular choice before I take on anything
new. You may wonder why so many. It is simply my Type A personality
still at work and one of that group of four always says "no" to any new
project, no matter how small. Therefore I go for the majority answer!
Also the book of Proverbs talks about how there is wisdom in the counsel
of many.

Perhaps you don’t have the luxury of three or four people and need to
settle on one. For some this might be realizing that your spouse really
does know something about you and that they have a valid opinion when
they tell you that you are over taxing yourself. I encourage you to
start 2004 off by finding yourself at least one person who knows you
well and with whom you can be accountable. I think that you will find it
is an excellent tool in the exercise of pacing yourself.

Enjoy the reading and I trust that you will find something that applies
to your life. I will put in the usual caveat and state that this
newsletter ends with a spiritual article, so just skip it if this sort
of thing bothers you.
Happy New Year!
Learn what makes good sleep difficult for people with fibromyalgia and
CFIDS, and how to use a three-part approach to improve your rest in this
article at the CFIDS/Fibromyalgia Self-Help program website:
The article is the third in a series on treatment options for the most
common symptoms of CFIDS and fibromyalgia.
With long-term illness like CFIDS or fibromyalgia, you have a different
role as a patient than you have with acute illnesses. Conditions that
can’t be cured need to be managed. This article at the
CFIDS/Fibromyalgia Self-Help program website ( is the second in a new four-part series
describing things you can do to help yourself when you are a patient
with a long-term illness.

Read tips for reducing stress and increasing enjoyment of the holidays
in this article at the CFIDS/Fibromyalgia Self-Help program website
( ). The article is one in a series on
"Coping Strategies". These articles offer practical techniques for
reducing symptoms and improving quality of life.

Bruce Campbell, Ph.D., Director

** **
An important new ME/CFS symptom questionnaire has been developed by
Ricky Buchanan, author of the very well known "Letter To Normals" at which has been published
in CFS/ME newsletters and books all over the world. Ricky herself has
had severe CFS for over a decade.
Why a new questionnaire at all? After years of contact with the
CFS/ME community I have noticed a small percentage of people with
CFS/ME have very severe symptoms. Much worse than the "usual" case of
CFS/ME would expect. It is these people I would like to study - the
people who are bedridden for years and years and years, who cannot
leave the house, who need wheelchairs to get from one room to another,
and so forth.
This questionnaire, known as the "CFS/ME Severe Symptoms Questionnaire",
aims to find out what symptoms these people commonly have that people
with less severe CFS don’t have. Things like epilepsy, paralysis, and so
To find out what is different about people with very severe CFS, I need
to study ALL of the CFS/ME community though. So even if your CFS is
mild, please help us by completing this questionnaire anyway!
I know that these questionnaires take precious energy to complete, so
this one is divided into six small sections. You can complete them on
different days, just whenever you have a little energy. And please, if
you are not well enough to fill out the questionnaire yourself, get
somebody close to you to help you. Also, the questionnaire will be
available to complete until the 28th of February, 2004.
Please go along to:
whenever you next can. Any questions please send to
and I will answer as soon as possible.
Oh, and you don’t have to have a doctor’s diagnosis to participate! You
just have to fit the criteria for CFS, which are available at the
website for you to check. So if you think you have CFS, be it mild or
severe, please have a go!
I will be writing up the results when I have enough of them and
submitting my research findings to various CFS newsletters and journals
around the world. As far as I know, this is the first research into very
severe ME/CFS symptoms that has been done. Another thing that’s special
about this questionnaire is I plan to publish the raw data (with no
names, of course, your data will be completely anonymous) in a form that
other researchers can easily import into a databases or spreadsheet and
Please be a part of this important research! Wander along to
and fill in the sections as slowly or fast as you are able to.

A reporter from one of this country’s most well-known and prestigious
newspapers wants to interview two people who have chronic illness and
have interviewed and been hired within past two years:
1. If you disclosed your chronic illness during the job search process
(within the past 2 years) , got the job - and would be willing to
discuss this with the reporter who would cite your name and company in
the article? You must be willing to use your name and company.
2. If you didn’t disclose your chronic illness during a job interview
but got hired. You will remain anonymous.
If you fit either description and are interested, email me immediately: I’ll pass the first two people that fit this
description on to the reporter. Thanks for you help!

Do you deliver the bare minimum at work because your chronic illness
limits you? Do you want more from yourself but you’re stuck? Sign up for
a FREE WEEKLY TELESEMINAR SERIES: Living with Chronic Illness in the
Workplace. These 6 weekly sessions will help you identify the issues,
give you the tactics and build a community of support.
For more info:
Rosalind Joffe, M.Ed
617 969 1930
Helping people who have chronic illness to thrive in the workplace.

To Disclose or Not to Disclose? That’s Not Really the Question!
I’m not much of a TV fan, but when a friend said I had to watch NBC’s
"The West Wing" because President Josiah Bartlett had Multiple
Sclerosis, I was curious.

The story line was that Bartlett had known for seven years about his
Multiple Sclerosis (MS), but because he felt it didn’t affect his work,
he hid it from the public. His enemies insist this is a breach of ethics
and he’s under Senate investigation.

Bartlett has fallen into a common trap that’s a recipe for workplace
disaster. "Prevailing wisdom" says that if you disclose your invisible
chronic illness before you’re hired, you almost certainly won’t get the

But think about it. Operating from fear isn’t good for anyone. And,
let’s face it, if your chronic illness factors into your performance,
you’re going to have to disclose, at some point.

This isn’t poker. Put all your cards on the table and disclose your
chronic illness during the hiring process.

View this as your personal advantage and consider these 3 points:

1. Why disclose your chronic illness to a prospective employer?
Because you’re "in front" of the conversation, rather than playing

· If you disclose before you’re on the job, you’ve taken the lead. You
get to set the timing and the message. And you establish, from the
outset, that this won’t be a problem for your employer.

· If your chronic illness affects your performance ( i.e. you can’t do
the job the same way that everyone else does), you’ll have to disclose
eventually. Although employers can’t ask you about a disability (or any
personal issues) in the hiring process, it’s not illegal or unethical
for you to bring it up.

· If you’re not hired because you’ve disclosed, do you want this job?
Let’s face it, sometimes there is no choice. But, if your chronic
illness impacts your work performance, a top criteria for you should be
an employee friendly environment. And, for those who do value honesty,
this is a point in your favor.

2. What should you tell a prospective employer?
Be as public as you need to be and as private as you want to be.

· Keep it simple. Don’t confuse people with jargon. Give as much
information as they need to know.

· Keep it clear. Know your facts and deliver them to minimize confusion
and maximize comfort.

· Keep it unemotional. No one wants a sob story. A prospective employer
wants assurance that this won’t become his/her problem.

· If you have a visible chronic illness, don’t assume it’s unnecessary
to discuss it. A consultant who has Rheumatoid Arthritis and uses a
scooter refers to her scooter in her first conversation with a
prospective employer. This matter-of-fact reference says that this topic
is "on the table", invites questions and reduces discomfort. And, you’ve
put the focus where it belongs - on what you CAN do.

3. When should a prospective employer be told? There’s no one right
moment- as long as you’re in control of the message.

· A computer security analyst discloses he has Diabetes when he thinks
he’s getting a job offer. He uses the initial interviews to show the
value he can bring and discusses his illness as part of his negotiating
package. He’s gotten three jobs with this strategy.

· An I.S. Administrator with Multiple Sclerosis talks about her illness
in the first interview. She wants to know, from the outset, how people
respond and finds she’s more comfortable during the interview process.

· A corporate lawyer with Lupus says that in her current job search she
plans to disclose her illness when she’s offered the job and is
negotiating salary.

Don’t hide your chronic illness or view it as a weakness. What you say,
when you say it and how you disclose your chronic illness in the
workplace is another way to display your strengths.

Please note: Because Bartlett’s illness is invisible, he is able to
avoid referring to his disease. I don’t mean to overlook those whose
illness is visible (rely on a device for mobility). For those whose
illness is visible, disclosure isn’t a choice—but how and what to say

So, what do I think about Bartlett? He didn’t lie but his actions were
wrong. Because Bartlett didn’t disclose his MS when he was seeking the
Presidency, he had to defend both his honesty AND his ability to do his

Do you need help getting out front of the message? Email me or call so
we can talk about how I can work with you to shape, deliver and control
your message!

30 Colbert Road
West Newton, MA 02465-2907
fax 617.969.5647
In the U.S., the holiday season officially kicks off with Thanksgiving
and ends on New Year’s Day. Most people relish this time. But I have
many friends and clients, who work and live with chronic illnesses, and
dread this time of year.

WHY? Because a chronic illness (CI) can make getting though any day an
extraordinary challenge. The holiday season inevitably includes endless
parties and events, numerous trips to stores for gifts and other
purchases, and the unspoken pressure from friends and colleagues to be
festive and upbeat. And, this can strain the (already taxed to the max)
emotional and physical resources of people of who live with CI.

Let’s start by making it clear why it can be difficult, and sometimes
painful, to make decisions based on your CI:
· It’s unpredictable - you’re never sure how you’ll feel.

Many, if not all, symptoms are invisible - so it’s hard for others to
understand what’s happening to you.

· You’re not in the norm (as in old age) - so making decisions which
require saying "no" can isolate you further.

All that said, do yourself a favor and conserve your energy, especially
during this time. Here are three strategies TO AVOID:

1. Going to every event because someone (your boss, client, cousin) will
be upset if you’re not there. You can’t afford this attitude. Take your
pulse: How I will feel if I go AND how will I feel if I don’t go? That’s
a good indicator.

2. Letting the list of presents and errands climb out of control. It’s
hard to change your attitude if you think that everyone you know should
get a gift and that you should bring the home made dessert. So, "let
your fingers do the walking". The Internet and yellow pages are great
resources. Keep it simple even though it’s tempting to do more.

3. Asking for help, at the last minute, when everyone is already
over-committed. That’s a surefire way to not get what you need. Even
though it might be nice to be spontaneous, you don’t have that luxury.
Plan for parties, events and holiday meals—the same way you would for
your major team project at work.

Last week on a radio talk show, people were predicting how they’d spend
Thanksgiving Day. It seemed that, except for those who admitted they’d
be glued to TV football, all the callers gleefully described last
minute, frantic prep and cooking for the big meal. One woman even made
roasting chestnuts at 5:00am a funny story!

Once again, I was struck by the difference in perspective from those who
do and don’t live with CI. And, the holiday season just exaggerates
these differences. But, you don’t have to be overwhelmed or miserable.
Avoid some traps and manage your Holiday Season so you can ring in the
New Year, no worse for wear!

Pain Hurts Employees at Work and at Home
Nov. 11, 2003 (New York) -- Employers may end up paying more for lost
productivity caused by employees who work through the pain rather than
staying at home due to disability.
A new study shows that productive time lost due to common pain
conditions such as headaches, back pain, and arthritis costs U.S.
employers more than $61 billion dollars per year, and most of that lost
time is caused by impaired performance at work rather than work absence.
"Pain is common and treatable condition that results in a significant
but largely invisible cost to employers," says researcher Walter
Stewart, PhD, MPH, director of the Center for Health Research and Rural
Advocacy at Geisinger Health System in Danville, Penn.
Stewart presented the results of the study, which appears in the Nov. 12
issue of The Journal of the American Medical Association, at an American
Medical Association briefing on pain management today in New York City.

The Cost of Pain at Work
Researchers say the purpose in doing this study was to make the cost of
common pain-related conditions such as headache, arthritis, back pain,
and other musculoskeletal pain real to employers.
"Employers will understand what 61 billion dollars means, and they will
understand that in any two-week period one in eight workers is losing
time from a pain condition," says Stewart. "On average, they’re losing
about five hours per week."
In the past, researchers say that employers have closely monitored costs
associated with worker disability because it creates paperwork and is
easy to follow. In addition, most studies on the work-related impact of
pain have only looked at lost time due to worker absenteeism in the form
of lost or shortened workdays.
But this study shows that’s not where the real problem is. Researchers
say disability and absenteeism are only the tip of the iceberg when it
comes to lost productive time, and "presenteeism" is actually the
largest cause of lost productivity at work.

‘Presenteeism’ Costs Employers Most
Presenteeism is defined as reduced performance while at work, which is
commonly caused by pain-related conditions, such as headache, arthritis,
and back pain.
In this study, researchers measured the impact of impaired work
performance based on how often the 28,902 working adults surveyed said
they did any of following due to a painful condition in the past two
a.. Took longer to start working after arriving at work
b.. Lost concentration
c.. Repeated a job
d.. Worked more slowly than usual
e.. Felt fatigued at work
f.. Did nothing at all at work
The study showed that more than three-fourths of the $61 billion in
pain-related losses in productive time occurred at work as a result of
this sort of behavior rather than work absence.
Researchers found that 13% of the total workforce experienced a loss in
productive time during a two-week period due to a common pain condition.
Headache was the frequently cited cause of lost work time (5.4%),
followed by back pain (3.2%), arthritis pain (2%) and other
musculoskeletal pain (2%).
Workers who had a headache lost an average of 3.5 hours per week of
productive time at work, while workers who suffered from back or
arthritis pain lost an average of 5.2 hours per week.
Researchers also found that lost productivity due to pain conditions did
not differ much by age, sex, or type of occupation. But the largest
differences were seen in education levels with those with lower
education suffering more from pain at work.
Putting Pain at Work on Employer’s Radars
Researchers say this study is one the first to quantify the effects of
pain on lost productivity at work, and it may help employers make more
effective use of their health-care dollars.
"One thing that’s clear about pain conditions is that a minority of
individuals account for the majority of lost time," says Stewart.
The study showed that 5% of workers accounted for 29% of the lost
productive time, and about a third accounted for three-fourths of the
lost productive time.
"That is important for employers to understand because that subgroup
that’s losing most of the time is a good target for education and
intervention," says Stewart.
SOURCES: Stewart, W. The Journal of the American Medical Association,
Nov. 12, 2003; vol 290: pp 2443-2454. Walter Stewart, PhD, MPH,
director, Center for Health Research and Rural Advocacy, Geisinger
Health System, Danville, Penn.
© 2003 WebMD Inc. All rights reserved.


Wellness & Stress

By Michael W. Loes, M.D., M.D.(H)
Stressed spelled backwards is "desserts."—That’s right.—It is time to
think about stress differently. It is the chocolate sundae, the piece of
mama’s apple pie, or the baked Alaska at your favorite restaurant. It is
the motivator, the encourager and the force to do it right. Without
stress, you’re dead. That’s right; you are cold, stiff and very much
"without life."
Okay, enough. We know there is "bad" stress — the kind that bristles
men’s whiskers or glows a lady’s forehead. We know some of the specifics
as seen in the Holmes-Rahe Scale: death of spouse gets 100 points,
divorce earns you 73, getting fired garners 47, and even a vacation gets
13 stress points. The holidays tag behind at 12 big stress points.
We would like to avoid this kind of heart palpating, reflux fostering,
and sleep depriving stress. So, how can we do it?
Simple — live at grandma’s who still bakes oatmeal cookies and owns the
Iowa farm. If that is not an option, look in the mirror, the icebox, the
checkbook, and make an inventory of your biggest sources of confounding
stress and begin the process of understanding and dismantling them.
To be fair, I understand that dismantling stress is easier said than
done. Let me give you a five-point program aimed at reducing "adrenal
stress," where adrenaline, cortisol and several other polysyllabic
hormones are made.
The adrenals do not like to be jolted — extreme sports are not good for
your health, so please avoid them, and even avoid watching them.
The adrenals do not like to be awakened suddenly and called upon to work
without having fuel — i.e. — you must eat breakfast and it must include
some protein. If you are a breakfast skipper, your adrenal will go
looking for sugar and will find it in the liver — popping a donut out of
your glycogen reserves. The result is that you will be stuck with the
side effects of your own adrenaline, which will cause you to be nervous,
aggressive, and "not your true self."
The adrenals do not like smoke — your smoke or second-hand smoke.
Smoking causes vasoconstriction and decreased oxygen to tissues.
The adrenals like to have other hormones balanced, especially the
thyroid. If you are only marginally hypothyroid and you have to do
certain things, guess what the backup hormone is? Adrenaline. You pump
it out for the reserve but then you look like you’re nervous and
stressed — and you are!
The adrenals require a good night’s sleep. Seven to nine hours of sleep
is optimal, depending on your daily needs and these may vary some, but
not a lot. When you skimp on sleep, you slide into bad health very
quickly. Watch out and prepare carefully for any travel between time
zones. The quantity of quality of sleep will be adversely affected for
days and even weeks.
As for pain, when your adrenals are stressed, you will have more — a lot
more. It is my opinion that up to one-third of headaches and backaches
will be eliminated if adrenal health is optimized. Learn about it. Do
Seek salubrity — "state of enviable health."

Progressive muscle relaxation is one example of a deep relaxation
technique that can be used to reduce symptoms of stress, anxiety,
insomnia, and certain types of chronic pain. Based upon the simple
premise of tensing, or tightening, one muscle group at a time followed
by a release of the tension, this form of relaxation is used by
physicians (in combination with standard therapies) for a number of
conditions, including headaches, cancer pain, high blood pressure, and
digestive disturbances. This form of muscle relaxation is progressive in
two senses. Firstly, the muscle groups are tightened and relaxed one at
a time in a specific order, generally commencing with the lower
extremities and ending with the face, abdomen, and chest, although other
sequences have been used by some practitioners. Secondly, a greater
degree of muscle tension is attempted in subsequent exercises as
compared with beginning efforts as one gains experience with the
The technique of progressive muscle relaxation was described by Edmund
Jacobson in the 1930s based upon his premise that mental relaxation
should naturally result from physical relaxation. Like the Relaxation
Response pioneered by Herbert Benson in the 1970s, progressive muscle
relaxation can be learned by nearly anyone and requires only 10-20
minutes per day. You may practice this technique seated or lying down in
a completely quiet place free from all distractions. The individual
muscle groups are tightened for 5-8 seconds and the tension is then
released. While releasing the tension, try to focus on the changes you
feel when the muscle group is relaxed. Imagery may be helpful in
conjunction with the release of tension; you can try to imagine
stressful feelings flowing out of your body as you relax each muscle
group. You should stay relaxed for 15-30 seconds and move on to the next
muscle group.
In addition to its stress-reduction and health benefits, progressive
muscle relaxation is an excellent tool to help learn about the body and
its signals. With practice and time, you can learn to accurately
identify tension signals in your body and actively work to reduce stress
and tension and their accompanying physical reactions.
What are the symptoms of SAD?
Millions of people suffer from a biologically based depression during
the winter months. Although these people may feel fine or even "better
than normal" during the spring and summer, late fall and winter are an
entirely different experience. Beyond depressed mood, seasonal affective
disorder - or SAD - often brings a loss of interest or pleasure in
everyday activities that are normally satisfying, such reading a good
book or listening to music. Other common problems are a significant
reduction in work productivity (or immense effort to get tasks done),
and withdrawal from friends and family that is hard to explain or
Some of the symptoms of SAD are very physical. Appetite often changes in
marked contrast to spring and summer. People can experience
uncontrollable cravings for sweet and starchy foods such as cookies,
chocolate, pasta and bread, which causes them to put on a few pounds (or
more). Dieting seems out of the question. Some notice marked changes in
their need for sleep or ability to sleep normal hours. It can become
tough to wake up in the morning in time for work or school, and daytime
fatigue persists no matter how much sleep they get at night. Indeed,
people who sleep the most often also report the most fatigue: long sleep
is just not restorative. As the days grow shorter in fall, it is the
physical symptoms of SAD - appetite, sleep, and daytime fatigue - that
are usually the first to be noticed. The symptoms of depression then
intensify (January and February are usually worst) and can lead to truly
devastating, unjustified feelings of worthlessness or guilt, loss of
concentration, inability to make decisions, and even thoughts of death.
A nonprofit professional agency, the Center for Environmental
Therapeutics, offers a self-assessment questionnaire you can download
from its web site. You can us this questionnaire, the Personal Inventory
for Depression and SAD, to help you decide if you should seek
professional advice.

Diabetic’s Best Friend?
Dogs help diabetics predict low blood sugar levels
by Arden Moore
Your dog barks when a stranger rings the doorbell. Now researchers say
canine pals may be the first to detect another threat: low blood sugar.
At Australia’s Brisbane Clinic, a survey of 304 diabetics revealed that
68% had been alerted to low blood sugar by their pets, who nuzzled,
licked, barked, paced, and even growled before the humans realized their
sugar levels were dropping. Low blood sugar (hypoglycemia), a common
side effect of diabetes drugs, can lead to fainting, trouble
concentrating, and even seizures.,4780,s1-6043,00.html


A silly question, given our hectic lives and the horrible happenings
here and abroad. But some people are more stressed than others and their
bodies show it.
DR. RICHARD BRUNO began studying polio survivors and treating Post-Polio
Sequelae twenty years ago. His 1985 National Post-Polio Survey found
that emotional stress is the second leading cause of PPS after physical
overexertion and exercise. In treating and studying more than 5,000
polio survivors he also found that polio survivors are more Type
A—anxious, hard-driving, pressured, time-conscious, perfectionistic and
overachieving—than people who had already had heart attacks. Dr. Bruno
decided that he couldn’t treat polio survivors bodies without paying
attention to their Type A minds.
ENTER MAUREEN McGOVERN. You probably first met Maureen McGovern thirty
years ago through her Academy Award winning performance of "The Morning
After." Today Maureen is the voice of the American songbook. Maureen
could sing only these classics for the rest of her career and listeners
would be joyous. But many who are acutely and chronically ill need to
heal before
they can experience joy. So, Maureen has pointed her voice in a new
direction. She has created "Works of Heart" a nonprofit foundation to
provide healing through music. Specially crafted Works of Heart
recordings will offer patients, caregivers and health professionals
songs that relax and restore spirit, mind and body. Her first "Works of
Heart" CD was released in 2004.
When Maureen sent Dr. Bruno the rough mix of her "Works of Heart" CD he
heard something very familiar in Lindy Robins’ haunting lyric "I’ll
Know." Lindy writes of someone changing her entire life, "heading for an
empty the fires of apprehension rage." "This apprehension is
what polio survivors feel when they come to The Post-Polio Institute and
we ask them to change decades of Type A behavior, to slow down and, for
the first frightening time, to care for themselves as they have been
caring for others," said Dr. Bruno. "Lindy’s is the message that polio
survivors need to hear:
For every door that closes another one is opened,
For every chapter ended another is begun;
For every risk that’s taken,
For each dream reawakened,
Of chances unforsaken,
Fear is overcome."
Dr. Bruno asked Lindy to write a special adaptation of "I’ll Never Know"
to encourage polio survivors to take take time for themselves, to listen
to their bodies and to let go of fears from the past. Lindy did just
this and her special version of "I’ll Never Know" opens Maureen’s
"Relaxation Recording." Then, Maureen guides you through Dr. Bruno’s ten
minute breathing relaxation exercise—"The Two Breath Time Out"—from his
forthcoming eBook How to STOP Being Vampire Bait: Your Personal Stress
Annihilation Program.
RELAXATION FOR EVERYONE. Although this special "I’ll Never Know" and
"The Two Breath Time Out" were written with polio survivors in mind, the
recording will help everyone who is stressed—by disability or illness,
by caregiving or by suffering the slings and arrows of living in this
outrageous time—to take fifteen quite minutes to slow down and to care
for themselves by listening to their bodies.
to order Maureen McGovern’s "Works of Heart" Relaxation Recording.
(All of Dr. Bruno’s profits from the Relaxation Recording will be
donated to The Post-Polio Institute’s "Polio Survivors Fund" to help pay
for PPS treatment for those without insurance:

Suite 101 offers a regularly scheduled interactive online course in
Coping with Fibromyalgia at
The intent of the course is to educate people about their problem and
its diagnosis, finding good medical care, applying for disability as
well as physical and psychological coping strategies.
Definitions Relevant to use of Opioid Analgesics in Fibromyalgia

Addiction: Addiction is a neurobehavioral syndrome with generic and
environmental influences that results in psychological dependence on the
use of substances for their psychic effects and is characterized by
compulsive use despite harm. Addiction may also be referred to by terms
such as "drug dependence and "psychological dependence. Physical
dependence and tolerance are normal physiological consequences of
extended opioid therapy for pain and should not be considered addiction.
Analgesic Tolerance: Analgesic tolerance is the need to increase the
dose of opioid to achieve the same level of analgesia. Analgesic
tolerance may or may not be evident during opioid treatment and does not
equate with addiction.
Chronic Pain: A pain state which is persistent and in which the cause of
the pain cannot be removed or otherwise treated. Chronic pain may be
associated with a long-term incurable or intractable medical condition
or disease.
Pain: An unpleasant sensory and emotional experience associated with
actual or potential tissue damage or described in terms of such damage.
Physical Dependence: Physical dependence on a controlled substance is a
physiologic state of neuroadaptation which is characterized by the
emergence of a withdrawal syndrome if drug use is stopped or decreased
abruptly, or if an antagonist is administered. Physical dependence is an
expected result of opioid use. Physical dependence, by itself, does not
equate with addiction.
Pseudoaddiction: A pattern of drug seeking behavior of pain patients,
who are receiving inadequate pain management, that can be mistaken for
Substance Abuse: Substance abuse is the use of any substance(s) for
non-therapeutic purposes; or use of medication for purposes other than
those for which it is prescribed.
Tolerance: Tolerance is a physiologic state resulting from regular use
of a drug in which an increased dosage is needed to produce the same
effect or a reduced effect is observed with a constant dose.

1. Acute Pain Management Guideline Panel. Acute Pain.Management;
Operative or Medical Procedures and Trauma Clinical Practice Guideline.
AHCPR Publication No. 92-0032. Rockville, Md. Agency for Health Care
Policy and Research. U.S. Department of Health and Human Resources,
Public Health Service. February 1992.
2. Jacox A, Carr DB, Payne R, et al Management of Cancer Pain. Clinical
Practice Guidelines No. 9. AHCPR Publication No. 94-0592 Rockville, Md.
Agency for Health Cue Policy and Research. U.S. Department of Health and
Human Resources Public Health Service. Much 1994.
Magnesium in the Treatment of Fibromyalgia
From Alternative Medicine Alert | March 2002
By Georges Ramalanjaona, MD, DSc, FACEP, MBA
Fibromyalgia (fm) is a common rheumatic disorder that affects mainly
middle-aged women (mean age 40-50 years). The estimate of its prevalence
in the general population ranges widely, from 0.75% to 10.5%, vs. 20% in
an academic rheumatology center.(1) Although its cause has yet to be
identified, the symptoms and signs of FM are well-defined and classified
by the 1990 American College of Rheumatology (ACR) Criteria. This
classification shows that FM can be differentiated from other rheumatic
diseases with an 85% accuracy.(2) Symptomatic treatment of FM includes a
combination of drugs, acupuncture, exercise, rest, and psychological
Recent studies indicate that patients with FM display decreased
magnesium (Mg) levels in leukocytes compared to control groups.(6)
Abraham et al hypothesized that Mg deficiency found in muscle cells may
play a role in the development of FM. The group demonstrated that a
daily supplement of 300-600 mg of Mg malate resulted in improvements of
symptoms as well as in the number and severity of tender points.(7)
These findings were later supported by other authors.(8,9)
When treating patients with FM, there are two goals:
1. Adequately treating potentially reversible factors such as
electrolyte imbalances or vitamin deficiency.
2. Identifying a subgroup of FM patients that might benefit from Mg
supplementation. Most people with FM do not have low serum Mg levels,
and serum levels do not reflect the levels of Mg in tissue.(10) However,
many FM patients appear to suffer from Mg deficiency and it appears
important to assess Mg levels in all patients for potential relief of
their musculoskeletal symptoms.
Because vitamin B1 administration requires Mg supplementation, there is
theoretical biochemical evidence that a combination of Mg and B1 would
be more effective than either B1 or Mg alone in treating FM patients.
However, there is no clinical data to prove this.
Mechanism of Action
Although the exact mechanism of action of Mg remains unknown, it is
crucial in many functions in the body.
Mg is important for many metabolic functions in the human body. It
activates almost all the enzymes of the glycolytic and Kreb’s cycle,
which transform fat and sugar into high-energy phosphate (ATP). Low
levels of ATP commonly are found in FM and may play a significant role
in the genesis of FM symptoms.(11,12) Without Mg, ATP is broken down
easily into ADP and inorganic phosphate, which are less efficient than
ATP in generating energy for cell metabolism and transport.(12) This
process is important in the brain, which stores 20% of total body ATP. A
low level of Mg leads to a low level of ATP, which may cause a decline
in cognitive function.
Both Mg and malic acid, a non-toxic organic dicarboxylic acid, are known
to be involved in ATP synthesis under aerobic and hypoxic conditions,
which is the basis of the combined use of malic acid and Mg in treatment
of FM.(7,8)
Along with calcium, Mg is crucial for adequate muscle metabolism and
function. In Mg deficiency, there is excessive muscle tension, which
leads to muscle spasms, restlessness, tics, and twitches. Also,
histochemical studies show that tender points in FM muscle are deficient
in ATP. Nuclear magnetic resonance spectroscopy indicates abnormally
high-energy phosphate metabolism in exercising FM muscle.(13)
Mg inhibits many nerve receptors such as 5HT3 or NMDA, which are related
to the origin of certain types of FM pain.14 Additionally, Mg regulates
the release of neurohormones such as adrenaline, which increases with
the occurrence of stress-related events.(14,15)
Clinical Studies
Relatively few well-designed and clinically significant trials have
studied the effectiveness and safety of Mg supplementation in the
treatment of FM.(7,8)
Russell et al used a proprietary tablet "supermalic" (SM), which
contains 200 mg of malic acid and 50 mg of Mg, in two sequential trials
of 24 subjects. The first trial was a randomized, double-blind,
placebo-controlled, crossover study for a two-month period (grade I
evidence-based).(8) Patients were randomized to either a fixed dose
(three tablets, twice daily) of supermalic or to a placebo for four
weeks, followed by a two-week washout and crossover to another four-week
treatment period. All clinical assessments were conducted by a single
In a subsequent six-month, open-label trial, the effects of escalating
doses of supermalic were assessed before and after resumption of the
drug.(8) The 24 patients took three tablets of supermalic twice daily
and increased their dosage every 3-5 days until they experienced
acceptable outcomes or related side effects for a six-month period. All
three primary outcomes used in this trial had been validated in prior
studies.(16) They included patient self-assessment of pain on a visual
analog scale; the tender point index (TPI), which is the sum of
individual tenderness severities at each of the 18 ACR tender points;
and the tender point average, which is the mean value derived from
dolorimeter reading at each of the tender points.
The results did not show any clear treatment effect attributable to
supermalic in the blinded, fixed low-dose trial. However, the open-label
trial with dose escalation and a longer duration of treatment showed a
significant reduction in severity in all three primary outcomes.
In another randomized, placebo-controlled, open-label, crossover trial
(grade I evidence-based), Abraham et al used a combination of Mg
(300-600 mg) and malate (1,200-2,400 mg) in 15 patients during an
eight-week period.(7)
Results showed a statistically significant clinical improvement (P <
0.001) in the treatment group vs. placebo as measured by two outcomes.
TPI scores (± SE) of 19.6 ± 2.1 prior to treatment decreased to 8 ± 1.1
and 6.5 ± 0.74 at four and eight weeks, respectively, on the Mg-malate
combination. Conversely, following an average of eight weeks on SM, six
patients were switched to placebo for two weeks. Their TPI scores
statistically significantly increased (P < 0.001) from 6.8 ± 0.75 to
21.5 ± 1.4. Subjective improvement of myalgia symptoms occurred within
48 hours of Mg supplementation in the Mg-malate group; symptoms worsened
in the placebo group.
Adverse Events
Side effects related to long-term exposure to Mg include headache,
muscular pain (usually relieved by aspirin), and mild gastrointestinal
In short-term trials, the most common side effect is watery diarrhea,
which usually is short-lived. In this case, patients should decrease
their next dose by 50%.(7) Hypokalemia may occur, in which case, Mg
should be discontinued.
Contraindications and Precautions
Exercise caution when recommending Mg with other medications that may
impair Mg absorption, thus decreasing its effects. These drugs include
allopurinol, tetracycline, digoxin, iron salts, penicillamine, and
Mg supplementation is safe during pregnancy, but it should be started in
consultation with and under the supervision of the patient’s
Unless it is severe, diarrhea that is not induced by Mg supplements is
not a contraindication to Mg supplementation.
Patients with renal disease should avoid magnesium supplementation.
In the United States, Mg is sold in various oral forms, such as Mg
citrate, Mg aspartate, Mg carbonate, Mg sulfate, Mg gluconate, and Mg
oxide, or in combination with malic acid (supermalic).
When choosing among these forms, one needs to know that the citrate form
has the best absorption record and that the oxide form is the most
poorly absorbed and cheapest form available. Also, Mg gluconate and
sulfate are easy to digest and should be used if diarrhea has occurred
with prior Mg supplementation.
Mg hydroxide at an oral dosage of 500 mg/d significantly increases
muscle magnesium level and seems to have comparable bioavailability with
other forms of Mg preparation (citrate, lactate, and chloride). Most of
the clinical trials used Mg hydroxide or gluconate.
The standard dose of Mg in published clinical trials varies from 50 mg
to 600 mg PO daily. It is used in combination with malic acid because of
its preliminary, theoretical effect in the treatment of FM.
The Mg hydroxide form has a wide margin of safety and superior
effectiveness when used in combination with other supplements, such as
malate. An oral dosage of 500 mg/d significantly increases muscle Mg
level, which appears to correlate well with symptoms of FM.(7)
Based on preliminary data, Mg appears to be effective against tender
point pain when used at high doses and in combination with malic acid.
Based on currently available studies, Mg is a reasonable addition or an
alternative to other known drug therapies in subgroups of FM patients
that have low magnesium levels or receive high doses of B1.
In addition, based on short-term studies, Mg seems to be effective in
relieving well-known symptoms of FM and safe with only minimal and
infrequent side effects. Further clinical trials with long-term analyses
need to be performed to confirm preliminary findings, conduct more
extensive investigations, and determine long-term effects of Mg in FM.
A trial of Mg supplementation should be prescribed for FM patients who
have low Mg levels or who have tender point pain. However, Mg cannot be
recommended as sole drug therapy in primary FM patients and is not a
cure for FM.
Dr. Ramalanjaona is Associate Chairman for Academic Affairs, Department
of Emergency Medicine, Seton Hall University, School of Graduate Medical
Education, South Orange, NJ; and Director of Research, Division of
Emergency Medicine, St. Michael’s Hospital, Newark, NJ.
1. Forseth K, Gran JF. The prevalence of fibromyalgia among women aged
20-49 years in Arendal, Norway. Scand J Rheumatol 1992;21:74-78.
2. Wolfe F, et al. The American College of Rheumatology 1990 Criteria
for the Classification of Fibromyalgia. Report of the Multicenter
Criteria Committee. Arthritis Rheum 1990;33:160-192.
3. Russell IJ, et al. Efficacy and safety of ibuprofen and alprazolam in
the treatment of primary fibromyalgia. A double-blind,
placebo-controlled study. Arthritis Rheum 1993;34:552-560.
4. Deluze C, et al. Electroacupuncture in fibromyalgia: Results of a
controlled trial. BMJ 1992;305: 1249-1253.
5. Mengshoel AM, et al. Muscle strength and aerobic capacity in primary
fibromyalgia. Clin Exp Rheumatol 1990;8:475-479.
6. Prescott EE, et al. Red blood cell magnesium and fibromyalgia. Scand
J Rheum 1992;94:31.
7. Abraham GE, Glechas ID. Management of fibromyalgia: A rationale for
the use of magnesium and malic acid. J Nutr Med 1992;3:49-59.
8. Russell IJ, et al. Treatment of fibromyalgia syndrome with Super
Malic: A randomized, double blind, placebo controlled, crossover pilot
study. J Rheumatol 1995; 22:953-958.
9. Romano TJ, Stiller JW. Magnesium deficiency in fibromyalgia syndrome.
J Nutr Med 1994;165-167.
11. Heaton FW. Role of Magnesium in Enzyme Systems. In: Sigel H, ed.
Metal Ions in Biological Systems. New York: Marcel Debbar; 1990:119.
10. Clauw D, et al. Muscle intracellular magnesium levels correlate with
pain tolerance in fibromyalgia [abstract]. Arthritis Rheum 1994;37:R29.
12. Eisinger J, et al. Glycolysis abnormalities in fibromyalgia. J Am
Coll Nutr 1994;13:144-148.
13. Simms RW, et al. 31P - NMR spectroscopy of muscle in fibromyalgia
syndrome patients and sedentary controls. Arthritis Rheum
14. Russell IJ. Neurohormonal aspects of fibromyalgia syndrome. Rheum
Dis Clin North Am 1989;15: 149-168.
15. Eisinger J, et al. Biochemical abnormalities in fibromyalgia: An
open door to novel therapeutic approach. Rev Rheum 1993;60:454-455.
16. Granges G, Littlejohn GO. A comparative study of clinical signs in
fibromyalgia/fibrositis syndrome, healthy and exercising subjects. J
Rheumatol 1993;20:344-345


Tender Point Injections Revisited
by Lynne Matallana
When a doctor looks at a Fibromyalgia patient and says, "There is
nothing I can do for you," it is obvious that they have not read an
article published in the Journal of Musculoskeletal Pain, [Vol. 8 (4),
2000] entitled, "Tender Point Injections Are Beneficial in Fibromyalgia
Syndrome: A Descriptive, Open Study." Doctors Savitha Reddy, Muhammad
Yunus, Fatma Inanici, and Jean Aldag’s recent work concludes that tender
point (TeP) injections are a "useful and safe adjunct to other forms of
therapy in FMS." Their study, which took place in a clinical setting,
was designed to be the first detailed study evaluating TeP injections in
fibromyalgia. Previous papers have described the efficacy of TePs in
myofascial pain syndrome; however, data concerning their usefulness in
fibromyalgia (FM) has been limited. This recent study involved a large
patient group and did not utilize "spray and stretch" or manual TeP
therapy techniques, in order to avoid possible "confounding effects of
such therapies."
Forty women and one man took part in the study, each receiving standard
therapy for FM, which included patient education, psychological support,
home physical therapy, analgesics and serotonergic/noradenergic drugs.
Study participants received injections in over 20 tender point sites,
with an average of 3.97 injections per visit. The most commonly injected
areas were the trapezius muscle (49%), suboccipital region (44%) and the
lower back area (44%). The mixture injected consisted of a
corticosteroid suspension and a local anesthetic. Patients received the
injections every 2-4 months (or longer) depending on the duration of
time that they were pain-free. Patients iced the injected areas for
20-30 minutes each hour for 4-8 hours post-injection and eliminated
physical exercise for 48 hours. Each participant kept a diary noting the
time when "significant pain returned at the injected areas."
At the conclusion of the study, the investigators surmised that patients
received an average of 13.1 weeks of pain relief per injection site,
with only one patient failing to receive any pain relief. At the start
of the study, 90% of the participants reported their pain as severe or
moderate and 93% reported symptoms of overall fatigue. Forty-four
percent of the study participants reported that pain relief was
immediate, with the others reporting benefit generally within 4-5 days.
An analysis of the study results does recognize the possibility that
some of the pain relief might be attributed to the "placebo effect";
however, Dr. Yunus and his co-authors note that "needle-stimulated
analgesia is explicable on a physiologic basis; e.g. stimulation of the
A-delta fibers in the cutaneous and the subcutaneous tissues overlying a
TrP or TeP area, which, in turn, stimulates the inhibitory
enkephalinergic interneurons in the spinal cord by both presynaptic and
post-synaptic mechanisms."
Dr. Yunus and his colleagues recognize the need for a controlled study
with blinded evaluation by another physician, but state that such a
controlled study may pose design problems because of the benefit derived
from the needle effect alone. "In usual practice setting, a successful
tender point injection involves more than just putting in a needle," Dr.
Yunus says. "Physician attitude and interaction with the patient is
probably just as important. A doc who says to the patient, ‘We’ll try
the needle if you insist’ is likely to get a very different result than
the one who says, ‘Injection is a very good idea; in our hands, it has
worked very well.’" It’s very helpful for a caregiver to play an
enthusiastic and supportive role in the management of their patients.
Copyright © 2002 National Fibromyalgia Association (NFA)

The Challenges of Being Chronically Ill
by Anne-Marie Vidal
Life is a challenge for anyone. For the chronically ill, it is a daily
test with mixed and sometimes amusing results. The following are some of
the typical experiences that those with a chronic condition may have in
1. No matter what your chronic condition, at least a third of the people
you know believe they know the cure or the best treatment.
People with "the answer" will not be deterred by minor considerations
such as not knowing you or your general health status. They have
knowledge that they feel you need to know. That you may not share their
feeling often does not occur to them. Living within your energy
restrictions is not going to allow you to seriously answer or to try to
be nice to everyone with a "cure." You have to learn to shrug it off or
smile politely. Do not stress yourself giving long explanations unless
you think that the relationship with the person is important
2. We have too many doctors’ appointments with too many different
How do we make sure that all these doctors get the same information and
are on the same page regarding our health status? We must take
responsibility for that by keeping a diary that includes medications,
symptoms, and pain issues. We know our situations best and can provide
copies of any changes in our health.
3. "But you look so good!"
I am sure that all of us have heard this more times than we can count.
Some of us will feel compelled to give a detailed answer regarding the
difference between looking good and feeling good. But you should
consider if the person making this remark would understand what you are
saying and listen. One patient recommends, "If I only felt like I look."
Another wisecracks, "I have a personal make-up artist and cosmetic
4. "You are too young to be in so much pain."
Don’t worry about this one—it will be soon be followed by, "Well, of
course you have ‘a few aches and pains’—you are (almost) 40!" People who
are this insensitive are not listening to you or understanding your
particular situation. If this is someone who you were once close to, it
may be time to re-evaluate the relationship.
5. Comparisons!
The standard one runs something like this: "My next door neighbor’s
cousin has an Aunt Betty who has __________ (fill in the blank). And
they are doing so much better (than you)." Now is a good time to
remember why you do not leave sharp objects or firearms lying about
unsecured. The temptation to do bodily harm to these jerks can be
overwhelming. But the energy it takes may not be worth the challenge.
Only explain the issues of co-existing conditions, years spent getting a
diagnosis and all the other complicating factors if you choose. You may
instead decide that the energy would be better invested in a nice warm
bath surrounded by aromas you enjoy and you would be right. No one says
that the chronically ill are sentenced to suffering fools; you can
choose to vacantly smile, shrug and wander off. If you are a very polite
person, you can answer "how nice for them."
6. Validation.
Our conditions are seldom proven by an X-ray or a blood test. They are
often conditions that have a variety of symptoms. Because of this and
the lack of research we find ourselves being asked things like, "You’ll
get better won’t you?" Most people who make this remark mean to offer
hope; they have no idea how absolutely depressing this remark can be to
a person battling the wear and tear of a chronic illness. I used to try
to explain the difference between a chronic condition and an acute
condition. After my 1249th attempt, I quit. Sometimes I say, "Chronic
conditions don’t disappear without research into a cure, and FMS and
CFIDS are low budget priorities." Or I flat out say that I am raising
money for an organization dedicated to advocacy. Hit people up for cash;
they will leave you alone.
7. Understanding and support are never-ending battles.
Initially we struggle to understand our conditions and to accept their
effects on our lives. That is almost a daily event and during that
struggle we must work with friends, family and others for their help.
Sometimes we will gain that understanding, but it is not going to be
consistent; it is perfectly normal that a loving relative will seem to
understand one week and not the next.
Their change in attitude may result from a news story or article
misrepresenting our conditions. There is, as you already know, a lot of
misinformation out there. You have to decide, when confronted with this
seeming shift in attitude, if you want to extend yourself to discover
what is behind it. Remember that you are not required to do that. It is
your choice whether or not to take on the burden of these discussions
and not your obligation. Some days you may have the energy and the
fortitude for these discussions, other days you might simply say, "I am
not feeling that I can argue the points of that article right now, but…"
You can offer another article or promise to discuss this with people
another time. You can also invite the person to attend a support group
meeting with you and meet others with FMS.
8. Getting Older Before Our Time.
Ever go to the doctor’s office or hospital and notice that everyone else
there is not just 10-15 years older than you but often 20 years older?
This can be a little shocking, but you can minimize its affect by
reminding yourself that sometimes very young people also need surgery
and physical rehabilitation. One CFIDS patient who suffered an injury
wrote me the following:
"I was 47 at the time that time the nurse came to my home and asked for
me. She was surprised when I told her I was the patient. Her comment was
"from everything that is wrong with you, I thought I was coming to see a
90-year old"! The arm and shoulder got better but the chronic pain never
went away - I had so many tests and so many nerve blocks and trigger
point injections that my medical charts read as that of a 90 year old!"
Here is another patient’s experience:
"If I say, "My aching bones..." when I get up, people laugh because they
think it’s a joke. Or when I say that I’m not able to lift something
heavy, they look at my strong build and say, "Yeah, right!" I feel
completely guilty asking for help out to my car with groceries. I would
like to get a disabled parking permit but I see the way people stare at
me in disgust when I park in one on occasion."
The world seems to accommodate the fully functional, the young and the
healthy. In this millennium, it seems that people are dedicated to
living and working at hyper-speed. We are precocious in an age-denying
and defying world. We are having the experiences that are usually
associated with senior citizenship. Try to keep a sense of humor; you
are going to need it. This is a good time to remember that feeling
guilty for being the way we are is useless and draining; the insensitive
and the unfeeling are not likely to share our capacity for guilt. Try to
remind yourself that you are not the problem. And besides, you at least
can fully appreciate "stopping to smell the roses" (if you aren’t
allergic to them).
Anne-Marie Vidal is a patient and advocate who has several chronic
conditions, among them CFIDS, Fibromyalgia, Epilepsy and Arthritis. Many
of the anecdotes that she relates here are based on the experience of
CFIDS, FMS, and MCS patients who have written to her regarding their

CFS Surveillance Studies
This section contains reviews and abstracts of articles covering the
chronic fatigue syndrome (CFS) surveillance studies.
Prevalence and incidence of chronic fatigue syndrome in Wichita,
Kansas The epidemiology of chronic fatigue in San Francisco
Surveillance for chronic fatigue syndrome - four U.S. cities,
September 1989 through August 1993 Epidemiology of chronic fatigue
syndrome: the Centers for Disease Control study
Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC. Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas Archives of
Internal Medicine 2003;163:1530-1536.
CFS is a debilitating illness for which there is no known cause or
cure. Determining how many people have CFS has been difficult because
of researchers’ inconsistent use of case-defining criteria and the
lack of reliable laboratory tests for diagnosing the illness. To
estimate baseline prevalence and 1-year incidence of CFS, CDC
researchers conducted a 4-year study in Wichita, Kansas, which has a
population with demographic features (e.g., age, sex, race, ethnicity,
income) similar to those of the U.S. general population. The team used
screening and detailed telephone interviews to identify persons 18
years or older with CFS-like illness, and performed clinical
examinations to further classify subjects with CFS on the basis of a
standardized case definition. The overall prevalence of CFS in Wichita
was 235 per 100,000 adults. The illness was more than four times more
common among women (373 per 100,000) than among men (83 per 100,000),
and it was most common among white women 50 to 59 years of age (863
per 100,000). On average, the illness lasted about 7 years. Among
those with CFS, only 16% had received a diagnosis and medical
treatment for their illness. The 1-year CFS incidence was 180 per
100,000 persons. These estimates are critical for helping public
health officials, health maintenance organizations, and other
insurance providers better understand the extent of CFS. They are also
important in helping practicing physicians put CFS in a realistic
context when examining and caring for patients. Additional manuscripts
based on data and blood samples collected from the Wichita study
population are under review for publication. They include an
evaluation of the natural history of CFS and attempts to identify
potential molecular markers for use in diagnosing this illness.
Background: Chronic fatigue syndrome (CFS) is a debilitating illness
with no known cause or effective therapy. Population-based
epidemiologic data on CFS prevalence and incidence are critical to put
CFS in a realistic context for public health officials and others
responsible for allocating resources and for practicing physicians
when examining and caring for patients.
Methods: We conducted a random digit-dialing survey and clinical
examination to estimate the prevalence of CFS in the general population
of Wichita, Kansas, and a 1-year follow-up telephone interview and
clinical examination to estimate the incidence of CFS. The survey
included 363,997 households representing 90,316 residents. This report
focuses on 7,162 respondents aged 18 to 69 years. Fatigued (n=3,528) and
randomly selected nonfatigued (n=3,634) respondents completed telephone
questionnaires concerning fatigue, other symptoms, and medical history.
The clinical examination included the Diagnostic Interview Schedule for
Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition,
laboratory testing, and a physical examination.
Results: The overall weighted point prevalence of CFS, adjusted for
nonresponse, was 235 per 100,000 persons (95% confidence interval,
142-327 per 100,000 persons). The prevalence of CFS was higher among
women, 373 per 100,000 persons (95% confidence interval, 210-536 per
100,000 persons), than among men, 83 per 100,000 persons (95% confidence
interval, 15-150 per 100,000 persons). Among subjects who were
nonfatigued and fatigued for less than 6 months, the 1-year incidence of
CFS was 180 per 100,000 persons (95% confidence interval, 0-466 per
100,000 persons).
Conclusions: Chronic fatigue syndrome constitutes a major public health
problem. Longitudinal follow-up of this cohort will be used to further
evaluate the natural history of this illness.
‘Kansas Archives of Internal Medicine 2003’,
Many studies show that regular meditation can benefit overall health,
and that the benefits can be lasting. Researchers believe meditation may
decrease activity in the sympathetic nervous system (which controls the
body’s reaction to stress), leading to decreased heart and respiratory
rates, and lower blood pressure. Some studies have suggested that
meditation lowers cortisol levels in the blood and encourages relaxed
brain waves. It is especially effective for fibromyalgia, particularly
when combined with other mind-body therapies.
A 1993 uncontrolled study of people with fibromyalgia found that all
showed improvement in symptoms after a 10-week meditation-based
relaxation program [Gen Hospital Psychiatry 15, 284-289, 1993].
(Source: Natural Treatments for Fibromyalgia: An A to Z Guide, by Kenna
Simmons. An official publication of the Arthritis Foundation. To
purchase, visit
This tip provided courtesy of

Life is hard enough and going to the bathroom shouldn’t be. But for 20
million people the urge to go to the bathroom can be agonizing and
painful. The reason is a disorder known as irritable bowl syndrome
Do you think you have IBS? Well, if you have bleeding, fever, weight
lost, and persistent severe pain with your bowl movements, you do not
have IBS. IBS is usually diagnosed after the exclusion of more serious
conditions such as Crohn’s disease or ulcerative colitis. It may be
necessary to do endoscopy (viewing the colon through a flexible tube
inserted through the anus) to rule out those other diseases

Forgetfulness: It’s Not Always What You Think
Many older people worry about becoming more forgetful. They think
forgetfulness is the first sign of Alzheimer’s disease. In the past,
memory loss and confusion were considered a normal part of aging.
However, scientists now know that most people remain both alert and able
as they age, although it may take them longer to remember things.
A lot of people experience memory lapses. Some memory problems are
serious, and others are not. People who have serious changes in their
memory, personality, and behavior may suffer from a form of brain
disease called dementia. Dementia seriously affects a person’s ability
to carry out daily activities. Alzheimer’s disease is one of many types
of dementia.
Stimulating Mind Lowers Alzheimer’s Risk
THURSDAY, Nov. 6 (HealthDayNews) -- Reading, visiting museums and
socializing with friends during early and middle adulthood may help
lower your risk of developing Alzheimer’s disease, says a study by
University of Southern California (USC) and Swedish researchers.
The study, which used data on twins who differed in cognitive status, is
the first to examine the relationship between leisure activities and the
loss of mental function.
Researchers used information on same-sex twins born in Sweden between
1886 and 1925. In the 1960s, the twins filled out questionnaires
regarding their leisure activities before age 40. These activities
included reading, social visits, theater, movies, gardening, sports and
participation in clubs.
In the 1980s, the twins took part in clinical follow-ups. That included
testing for dementia, classified as loss of cognitive function due to
brain changes caused by trauma or disease.
This study focused on 107 twin pairs where one twin had some form of
cognitive impairment while the other twin was cognitively intact. The
study found that greater overall participation in leisure activities
reduced the risk of developing dementia and Alzheimer’s disease, even
when education was taken into account.
The study was published in a recent issue of the Journal of Gerontology:
Psychological Sciences.
"While we have not proved the adage ‘use it or lose it,’ it certainly
makes sense that keeping an active mind contributes to positive aging,"
lead author Michael Crowe, a doctoral student in psychology at USC’s
College of Letters, Arts & Sciences, says in a prepared statement.
"It is very important to understand that what someone does early in life
can affect how that person grows old," co-author Margaret Gatz, a USC
psychology professor, adds.
More research is required to learn which leisure and intellectual
activities may help preserve cognitive function and why.


Estrogen May Impair Ability to Handle
WEDNESDAY, Dec. 3 (HealthDayNews) -- Estrogen may make women more
sensitive to the effects of stress, says a study in the December issue
of Molecular Psychiatry.
In experiments with rats, the researchers examined the effects of stress
on the function of a brain area called the prefrontal cortex (PFC),
which governs cognitive abilities such as short-term memory and
Previous research found these functions are disrupted when rats are
exposed to stress. But most of those studies were done with male rats.
It was unclear how gender differences affected the PFC response to
In this new study, female and male rats were exposed to different levels
of stress and then tested on short-term memory task. When they were
stress-free, both the male and female rats performed equally well on the
task. Both the male and female rats made major memory errors after being
exposed to high levels of stress.
However, after exposure to moderate levels of stress, the female rats
showed impaired ability on the memory task while the male rats did not.
That suggests the female rats are more sensitive to the PFC-impairing
effects of stress.
The researchers monitored the female rats’ estrus cycles and found they
showed this sensitivity to moderate stress only when they were in a
high-estrogen phase.
To further investigate the effect of estrogen, they removed the ovaries
of a new group of female rats, which meant those rats had no circulating
estrogen. A time-capsule containing either estrogen or placebo was
placed in these female rats.
The altered rats were then subjected to the same stress and memory
tests. The study found the implanted estrogen created the same
sensitivity to stress as natural estrogen.
The researchers concluded that high levels of estrogen act to enhance
the stress response, resulting in greater stress-related cognitive
A better understanding of this process may lead to a better
understanding of why women are more susceptible to stress-related
disorders such as depression and post-traumatic stress disorder. That
could help in the development of improved treatments for those

Ginsberg’s December 2003 Social Security report
Hi and I hope you had a nice Thanksgiving. Here in Atlanta, we are
getting our first blast of cold weather.
Just about every day, I receive emails from people who have questions
about Social Security disability, but who have not yet applied because
they are still trying to hang on to a job. This issue, I am going to
discuss how SSA evaluates work efforts and my conclusion that while work
attempts are good to a point, you are eventually going to have to decide
whether you can work or whether you cannot.
As you no doubt know, Social Security is a large bureaucracy and it
intends for each and every case to be evaluated in the same way. SSA
uses a 5 Step Evaluation Process to review your claim.
Step 1: Are you working
Step 2: Is your medical condition severe?
Step 3: Do you meet a listing
Step 4: Can you return to your past work?
Step 5: Can you return to any other work?
As you can see, Steps 2 through 5 are concerned about the nature and
degree of your medical condition, whereas Step 1 is only concerned about
whether you are working. Thus, the only requirement for you to apply is
that you are not now working.
Many people ask me - what if I am working only part time? Or, what if I
have been trying to work and I cannot keep a job?
Under Social Security law, SSA will only consider you to be working if
you perform your job at what is called substantial gainful activity
level. Substantial gainful activity is defined as performing significant
or productive physical or mental work for pay or profit or its
Social Security considers several factors when defining substantial
gainful activity.
One factor is your earnings. For 2003, if you earn more than $810, you
are presumed to be performing at substantial gainful activity levels.
Another factor has to do with your activities. For example, several
years ago, I represented a client who returned to school full time after
being out of work for two years following a bad accident. In that case,
the Judge granted a "closed period" of disability for the two years, but
found that my client was engaging in substantial gainful activity when
she returned to school.
In another case, I had a client who claimed that she could not work
because of severe allergies to rubber and latex products. However, at
the time of the hearing, she and her husband were raising four adopted
children and had applied to adopt two more children. The Judge ruled
against my client finding that her voluntary decision to take on the
responsibility of numerous adopted children was equivalent to
substantial gainful activity.
A third factor has to do with what are called unsuccessful work
attempts. If you repeatedly try to work at a job, but cannot keep a job
for more than 3 months, SSA will consider your efforts an unsuccessful
work attempt and not substantial gainful activity.
A fourth factor has to do with special circumstances - what if you were
able to find a part time job that was created especially for you? What
if your supervisor or co-workers make special accommodations for you?
Generally, your work under conditions of special consideration will not
be considered substantial gainful activity. But if you stay on a
particular job for more than 3 or 4 months, this argument becomes harder
to support.
Here is the bottom line: it has been my experience that to a point
unsuccessful work attempts are very strong evidence in your favor -
after all, if you have read the Disabilityforms web site and my
newsletters, you know that Disability has more to do with your ability
to work than your medical condition. If you are still working full time,
SSA will not take your application. If you are not able to work full
time and you are trying but failing to keep jobs, you should continue to
try to work, and you should apply for benefits. When you are asked if
you are working, your answer should be - no, although I am trying to
work, but I keep losing my job.
Although SSA encourages you to try to work, at some point - usually
after 3 or 4 months at a particular job - your work activities will
begin to confuse the picture. Thus, while I encourage my clients to try
to work, if you work continuously, even at different employers, SSA may
conclude that you are not disabled. Thus, while some work attempts will
help you, too many can suggest that you are not seriously disabled.
At some point in your case, therefore, you are going to have to make a
decision: can you work or are you disabled? And while this "either/or"
decision may not fit your particular circumstances, you are going to
have to play by SSA’s rules if you want to win your case.
That’s it for this issue. Please let me know if you have any questions
or comments.
Jonathan Ginsberg
You can ask for your own free mini-course and subscription at

Magnets No Treat for Aching Feet

They’re no better at easing pain than regular inserts, a new study says.

By Amanda Gardner
HealthDay Reporter
TUESDAY, Sept. 16 (HealthDayNews) -- Shoe inserts containing magnets
don’t provide more relief for people with heel pain than regular
That’s the conclusion of a study in the Sept. 17 issue of the Journal of
the American Medical Association that was funded by an unrestricted
grant from Spenco Medical Corp., which makes insoles and other orthotic
Although magnets are considered safe when applied to the skin, there’s
very little scientific evidence to support their use to relieve pain.
Despite this, more and more people are turning to magnets, with U.S.
sales estimated at $500 million annually and worldwide sales near $5
Plantar heel pain, or plantar fasciitis, is a common foot problem that
often manifests as knife-like pain in the heel area. It usually results
from abnormalities in the way some people walk, placing too much stress
on the heel bone and its surrounding tissues. The condition is often
associated with an inflammation of the connective tissue along the
bottom of the foot.
"Heel pain and plantar fasciitis are due to the excessive rolling in of
the foot which puts a strain on the plantar fascii, which is the band of
connective tissue on the bottom of the foot," says Glenn Gastwirth,
executive director of the American Podiatric Medical Association. The
condition can last months to years, and can also be aggravated by
injury, being overweight or poorly constructed footwear.
The article continues at:


PTSD Not Just for War Survivors

Auto accident victims are increasingly diagnosed with the problem, a
book says.

By Serena Gordon
HealthDay Reporter
MONDAY, Dec. 8 (HealthDayNews) -- People who have survived serious car
accidents have a lot in common with soldiers, a new book says: They can
both develop posttraumatic stress disorder (PTSD).
The book, After the Crash: Psychological Assessment and Treatment of
Survivors of Motor Vehicle Accidents says car accidents are a leading
cause of PTSD in the general population.
PTSD is a common psychological ailment, affecting as many as 5 million
Americans every year, according to the National Institute of Mental
Health. During times of war that number is even higher. Symptoms of PTSD
include reliving the traumatic incident often through flashbacks or
nightmares. Other symptoms include sleep problems, depression, anxiety,
irritability and anger.
In this updated version of the book, psychologists Edward Blanchard,
from the University of Albany, and Edward Hickling, in private practice
in Albany, N.Y., add information from a new study of motor vehicle
accident survivors and PTSD.
For the latest study, the researchers followed 161 car crash survivors
for five years after the accident. All of the study participants were at
least slightly injured and sought medical treatment after their
In this group, 110 were diagnosed with PTSD, and of those with PTSD, the
researchers report that 60 percent also were diagnosed with major
Almost all -- 95 percent—of the crash survivors were anxious when
driving and many avoided certain driving situations, such as night or
highway driving, after their accidents.
J. Gayle Beck, a professor of psychology at the University at Buffalo
who specializes in treating PTSD after a motor vehicle accident, says
that’s common behavior for people who have lived through a serious
"These people tend to refuse to drive or are unbelievably nervous
drivers," Beck says.
And, she says, a serious accident doesn’t necessarily have to be one
where someone is seriously injured. Any accident that really scares
someone or makes them believe they might die has the potential to cause
PTSD, she says, recalling a patient whose car rolled over numerous
times. Remarkably, he wasn’t seriously injured, but during the accident,
he had truly believed he was going to die, and those memories haunted
"There’s a perception that automobile accidents aren’t extraordinary
events," says Beck. "These studies [in the book] are drawing attention
to the fact that many times in a crash you see incredibly horrifying
things and people are convinced they are going to die. These things can
easily set the stage for PTSD."
PTSD, says Beck, is not always easy to diagnose. Many of the symptoms
aren’t easily seen by outsiders. The most common, she says, is having
recurrent and intrusive thoughts about the accident. This may make you
appear to others as distracted or not able to concentrate. She says
people suffering from PTSD often are clearly hyperactive and have
trouble sleeping.
One clear sign that someone may need help is a refusal to drive, or if
they must drive, very nervous or altered driving behavior.
While some of these things are common right after an accident, Beck says
if any of these symptoms last more than six months, it’s definitely time
to get treatment. Ideally, though, treatment should begin earlier,
somewhere between one and six months, Beck recommends.
According to the book, and to Beck, cognitive behavioral therapy is
helpful, as is supportive psychotherapy. Beck says researchers are
experimenting with new ways to treat PTSD, and in her lab, she is
currently using virtual reality driving simulations as a safe way to get
people with PTSD driving again.
More information
To learn more about posttraumatic stress disorder, go to the National
Institute of Mental Health or to the National Center for PTSD.
Copyright © 2003 ScoutNews, LLC. All rights reserved.
Are You a Workaholic?
(HealthDayNews) -- Are you a workaholic or merely a hard worker? And do
you know the difference?
According to Barnes-Jewish Hospital in St. Louis, compulsive
Are usually in a hurry.
Have a need to control.
Expect perfection of themselves and others.
Have difficulty in relationships.
Can’t relax and have fun.
Are usually impatient and irritable.
Often do several things at the same time, such as eat breakfast while
listening to voice mail messages, or return phone calls while on the
Seldom delegate.
If these characteristics sound familiar, try introducing more balance
into your life. Work addictions can affect your health and your
relationship with your family.
Felicity Stone
Copyright © 2003 ScoutNews
The Eli Lilly Protection Act
Sunday, October 19, 2003
Copyright © Las Vegas Review-Journal
Let’s say the parent of an autistic child wishes to file a civil lawsuit
against a manufacturer of childhood vaccines or their components,
demanding the pharmaceutical firm respond to new medical findings that
the thimerosal (mercury) preservative in many common childhood
vaccinations may have caused or contributed to the child’s autism. Would
you consider that parent ... a "terrorist"?
Probably not. But it appears U.S. Sen. Bill Frist—a Tennessee Republican
and the Senate’s only serving medical doctor—would.
On March 19, Sen. Frist introduced S.15, which attempted "to protect
drug companies from thimerosal-related litigation while eliminating
legal recourse for families of vaccine-injured, mercury-toxic children,"
according to Sandy Mintz of Vaccination News.
"The new legislation, sponsored by Sen. Judd Gregg, comes on the heels
of a just-published report in the Journal of the American Association of
Physicians and Surgeons. The research, conducted by Dr. Mark Geier and
David Geier, analyzed mercury doses children received from thimerosal in
childhood vaccines in comparison to Federal Safety Guidelines,"
Vaccination News reported last March.
"The doctors concluded that mercury from thimerosal did exceed federal
safety guidelines and that the study provides ‘strong epidemiological
evidence’ for a link between increasing mercury from
thimerosal-containing childhood vaccines and neurodevelopmental
disorders such as autism which has reached epidemic proportions."
Eli Lilly developed and sold the preservative thimerosal for more than
40 years.
As with an earlier attempt by Sen. Frist to slip such legislation into
the Homeland Security Bill, "the legislation is attached to a larger
bill that most likely will pass swiftly through the Senate due to its
anti-terrorism measures," Ms. Mintz worried, back in March.
The logic, apparently, is that America needs her vaccine manufacturers
to respond to the supposed threat of bio-terrorism, so anything that
protects vaccine manufacturers from the inconvenience of being sued ...
helps fight terrorism.
The Frist bill would have "reformed" the Vaccine Injury Compensation Act
of 1986, but would actually have made it harder for parents of injured
children to sue—shuttling them into a special Justice Department
"court," capping damage awards, and requiring that they be compensated
by the taxpayers (letting the manufacturers off the hook), parents
groups charge.
Not that S.15 was Sen. Frist’s first try. In 2002, "shortly after ...
Frist introduced legislation limiting suits against vaccine makers, the
drug industry’s trade group gave $10,000 to the
surgeon-turned-politician’s political action committee," reported
Jonathan Salant of The Associated Press. "Frist ... has raised more than
$2 million from doctors, health insurers, drug companies and others in
the health care industry. That’s roughly 20 percent of all the
contributions to his two Senate campaigns."
The $10,000 "contribution" came "the day after he submitted S.2053, that
contained similar language to S.15 and that was quietly slipped into the
Homeland Security Bill in the 11th hour," according to Vaccination News.
"The corrupt rider was later repealed in response to media backlash and
at the request of moderate Republicans."
To find out what happened to Sen. Frist’s second attempt to slip his
"Eli Lilly Protection Act" into another bill, I called Laura Bono, the
Durham, N.C., housewife and mom who founded the Right to Fight Mercury
Damage Campaign. ("I’m just a mother who saw a need," she explains.)
"The bottom line is he has backed off. ... There was a huge e-mail and
fax campaign and we were able to get him to stop this," Ms. Bono told
As far as the Geier studies linking thimerosal to autism, Eli Lilly
spokesman Ed Sagebiel says: "The Geier brothers have been thrown out of
virtually every courtroom in the country. They have not conducted any
scientifically based research around the correlation between thimerosal
and autism. We’re being sued because we started manufacturing
(thimerosal) around 1935, (but) ... our last manufacturing date was
1974, so all of the hundreds of lawsuits filed against us at this time
are based on claims where we were not the manufacturer; they are
non-scientific claims.
"We recognize autism is a devastating disease," Mr. Sagebiel told me on
Oct. 14, "but the trial lawyers are not going to find the possible cure
for autism. ... (We need to) continue to let the science guide this,
rather than the trial attorneys. In the current debate around thimerosal
and autism, the scientific evidence just does not show a relationship
between the two. ...
"You have the NIH, you have the Academy of Pediatrics, if you go to the
CDC Web site you’ll find their statement as well; you just cannot find
any scientifically credible organization confirming that type of link,"
the Eli Lilly spokesman concludes.
Next time: 100 times the acceptable dose.
Vin Suprynowicz is assistant editorial page editor of the Review-Journal
and author of the books "Send in the Waco Killers" and "The Ballad of
Carl Drega."
New Magazine - Writing Opportunity
Joyfully serving the chronically ill
Published by: Rest Ministries, Inc. PO Box 502928, San Diego, CA
92150, 858-486-4685
Writers Guidlines:
To order subscription: rtzone/cat9_1.htm
Read complete guidelines before submitting.
Detailed queries perferred.
Contact: Lisa Copen, editor. 80% freelance written. 6 issues per year.
Estab. 1997 as monthly newsletter, magazine debuts Jan 2004.
Circulation: 2000 (postal) 5000 (email). Pays in copies: 3 free issues.
Publishes ms an average of 3-6 months after acceptance. Sample copy $4
includes postage.
HopeKeepers has been described as "a letter from a friend" and "a hug
from God." Articles should be written in an upbeat, personal tone about
how to deal with the day-to-day issues of living with illness/pain,
using Scripture to validate the point. Please read the magazine
carefully before submitting materials.
TIPS: We do not accept articles that address "I’ve
been healed and if you have enough faith, so will you" Although we
believe that God can heal, most readers feel as though illness is their
allowed by God" and they are looking for ways to be encouraged on how to
live joyfully, despite the pain, rather than just live in survival mode.
Writers Guidlines:
"Surely God does not reject a blameless man or strengthen the
hands of evildoers. He will yet fill your mouth with laughter
and your lips with shouts of joy." (Job 8:21, NIV)
Let's face it....there is nothing about chronic illness to
laugh about. Or is there?
The other day I got my vitamins mixed up. I tried to swallow
my chewable Vitamin C tablet and chew my coated multiple vitamin. Yuck!
The Vitamin C refused to go down my throat, even with lots of water; the
cracked multivitamin released its bitter taste. Double whammy! I had
inadvertently confused the one for the other; this happens with me a lot
these days.
Even though the taste was nasty, I just had to laugh at how I mixed
things up. The problem is that these kinds of mistakes occur almost
everyday. If I'm not seasoning my food with pepper instead of salt, I'm
confused by the huge variety of groceries at the store and end up buying
something I don't
need or can't eat. And what can I say about the time I wore
different-colored shoes to church?
I can either lament these occurrences or laugh them away. I admit that
it's sometimes hard to laugh at yet another memory lapse, but in the
long run it is a better response. I don't believe God wants us to feel
sorry for ourselves or bemoan our circumstances. He wants us to rejoice
in Him and trust
that He's there to take care of us, no matter how much we
hurt or forget things.
In these particular Scripture verses, above, one of Job's friends is
trying to remind him that God has not forgotten him. His words are meant
to encourage and uplift Job in the midst of his circumstances. Job had
the security of knowing that he could trust God, and so can we.
Prayer: Heavenly Father, there are so many times when I'm
tempted to complain and whine about what I can no longer do
or how I mix things up. Help me to always remember that
nothing happens that You and I can't handle together. Amen.
Anna Popescu lives with Arthritis, Fibromyalgia, Chronic Fatigue
Syndrome, and Hypothyroidism, and is still learning how to laugh at her
mistakes. She is the author of the Christian contemporary novel, A
Little Bit of Wonderful, as well as articles and
devotionals in several magazines. Anna lives in central California with
her husband, Rick, their Sheltie, Bleu and Vitty, their cat who thinks
she's a dog too. Visit Anna's website at and
check out her monthly newsletter, The Write Stuff, with writing news and
information about chronic pain illness.
Compliments of Rest Ministries, serving people
Who live with chronic illness or pain.
Rest Ministries, Inc.
PO Box 502928, San Diego, CA 92150
toll-free 1-888-751-REST (7378)
copyright 2003

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