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2,127 subscribers
Editors: Mary McKennell and Anne-Marie Vidal


Editor's Corner: One over riding issue stands out as of primary concern in
this newsletter: pain management. There are many aspects to personal pain
management, first there is the issue of how we as patients deal with pain
and all of our medications. See "How Well Do Your Medications Mix" for a
valuable reminder that over the counter does not necessarily mean safe. Nor
does 'natural supplement' mean that it will work for you or is compatible
with your current medications. It is also important for patients and
advocates to be aware of how the war on drugs has increasingly been focused
on physicians who treat chronic pain patients. While the World Health
Organization and the Joint Commission on Accreditation of HealthCare
Organizations have emphasized pain is under treated in the U.S., the DEA
continues to prosecute doctors (not always successfully) for patient or
doctor misdeeds. The articles "Jury acquits doctor in pain-control test
case" and "Why is Our Government pursuing a War on Doctors" address this.

Over the past two years we have seen more awareness that chronic pain is a
serious problem only to also observe that most opioid medications have been
portrayed in the media as party drugs and the issue of pain management is
discussed in the same breath with misuse and the fact that the doses that
substances abusers take are 6 or 7 times higher than a pain patient's is
lost in the hysteria. Clarifying the issue of pain management is one of the
most challenging issues facing patients today. And it is likely to be with
us for quite some time. It is an issue on which we need to keep informed.




In this Issue: 1. Support Groups for Chronic Pain

2. Narcotic Actiq's use and abuse raise concern

3. Relationship between changes in coping and treatment outcome in patients

Fibromyalgia Syndrome

4. How Well Do Your Medicines Mix?

5. Health related quality of life in multiple musculoskeletal diseases

6. Women Twice as Likely to Suffer Depression

7. Jury acquits doctor in pain-control test case

8. Fibromyalgia Syndrome: A Central Role for the Hippocampus

9. Why is Our Government Pursuing a War on Doctors?

10. Fatigue in Gulf War Veterans Linked to ACE Gene Mutation

11. Update on Anti-depressants

Dear Friends:

Further to my recent announcement of the Fibromyalgia Syndrome definition
having been published in the Journal of Musculoskeletal Pain JMP 11(4), The
definition can now be seen on our website at

This Journal was published by Haworth Press and is available to subscribers
only. However, in about five weeks' time the book on the definition will be
published and is available to everyone. Use code FMS40 to purchase the book
and get a 40% discount price from Haworth Press.

Take care, everyone, and please be sure to pass on this information far and

Another job finished by the National ME/FM Action Network. Our Director of
Education, Marj van de Sande, was the Coordinator for both the ME/CFS and
Fibromyalgia Consensus Documents. We are very grateful to Marj for all her
hard work and the Board of Directors who believe in our cause and goal.

Take care, Lydia E Neilson President--CEO National ME/FM Action Network


Support groups for chronic pain

By Mayo Clinic staff

Dealing with chronic pain is something you'll do for many years. Your pain
may be easier and harder to control at different points, but you'll always
have to live with it. Some days you might feel as if no one else can
understand your pain. Or you might wish you had someone to share coping
techniques with. Joining a support group for people with chronic pain can
provide you with these and many other benefits.

Support groups can provide a depth of help and advice and a sense of control
that you might not find anywhere else. That's because they put you face to
face with people who share many of the same symptoms and feelings as you do.

Not all support groups are the same. Some support groups are mostly
educational and feature discussions led by informed guest speakers. Others
are more social and unstructured, with meetings providing a time to vent,
brag, encourage and visit. No matter how the groups are set up, they share
the same basic goal: to help each member cope with his or her pain.

Benefits of support groups include:

A sense of belonging, of fitting in. There's a special bond among people
whose lives have been disrupted by the same problem. You share a sense of
camaraderie. Once you have the experience of being accepted just as you are,
you begin to feel more accepting toward yourself.

People who understand what you're going through. Family, friends and doctors
can empathize with your problems, but in many cases they haven't experienced
what you're going through. Your pain experience is unique, but it shares
many common threads. Because support group members have a good idea of what
you're feeling and experiencing, you may feel freer to speak your mind and
voice your frustrations, disappointments and anger.

Exchange of advice. You may be skeptical of some of the advice given to you
by well-meaning friends who don't have chronic pain. But when veteran group
members talk, you know they speak with the voice of firsthand experience.
They can tell you which coping techniques have worked wonders for them and
which techniques haven't helped at all.

Opportunity to make new friends. These friends can bring joy into your life,
as well as practical support - a listening ear when you need to talk, a
chauffeur when you could use a relaxing drive and a companion to exercise

When support groups aren't the answer

Support groups aren't for everyone. To gain the most benefit from a group
setting, you have to be willing to share your thoughts and feelings. You
must also be willing to learn about and help others. People who are severely
depressed and don't want to talk or who have poor social skills are
generally less likely to benefit from support groups.

In addition, not all support groups are beneficial. You want to be in a
group where the mood is upbeat and the message positive. Some groups that
aren't carefully monitored can become a place to vent and share only
negative feelings that breed on themselves. This can leave you depressed and
add to your pain instead of improving it.

How to find a support group

Your community may already have one or more support groups for people with
chronic pain. There may even be groups for specific types of chronic pain,
such as arthritis, fibromyalgia or irritable bowel syndrome.

To find out if there's a support group in your community, check with your
doctor or nurse. You might also check with your county health department, a
community health organization or your local library. You can also contact
organizations such as the American Chronic Pain Association or the National
Chronic Pain Outreach Association. These agencies offer free information on
area support groups. They can also provide information and advice on how to
start a support group if there isn't one in your community.


Narcotic Actiq's use and abuse raise concern

The Wall Street Journal

In the wake of the controversy over the prescription narcotic Oxycontin,
health experts and insurers are raising concerns about the increasing use --
and abuse -- of Actiq, a newer and faster-acting prescription painkiller.

Actiq, derived from opium, comes in the form of a berry-flavored lollipop or
lozenge that takes seven to 15 minutes to hit the bloodstream after a
patient places it in the mouth. The drug, sold by Cephalon Inc. of West
Chester, Pa., was approved by the Food and Drug Administration in 1998 for
severe spikes in pain. It is so powerful and potentially addictive that its
label says Actiq "is intended to be used only by oncologists and pain
specialists" knowledgeable in using opioids to treat cancer patients who are
already tolerant to opioid therapy for their underlying chronic pain.

For complete article:


PAINR, Vol. 109 (3) (2004) pp. 233-241 C 2004 International Association for
the Study of Pain. Published by Elsevier B.V. All rights reserved. PII:

Relationship between changes in coping and treatment outcome in patients
with Fibromyalgia Syndrome Warren R. Nielson a,b * and Mark P. Jensen c,d a Department of
Medicine (Division of Rheumatology), University of Western Ontario, London,
Ont. Canada, N6A 5A5 b Beryl and Richard Ivey Rheumatology Day Programs, St
Joseph's Health Care London, Ont. Canada, N6A 4V2 c Department of
Rehabilitation Medicine, University of Washington School of Medicine,
Seattle, WA 98195-6490, USA d Multidisciplinary Pain Center, University of
Washington Medical Center-Roosevelt, 4245 Roosevelt Way, Northeast Seattle,
WA 98105-6920, USA

Abstract The present study utilized a sample of 198 individuals with
Fibromyalgia Syndrome (FMS) to examine the association between treatment
process variables (beliefs, coping strategies) and treatment outcomes (pain
severity, activity level, emotional distress and life interference) related
to a 4-week multidisciplinary fibromyalgia treatment program. Multiple
regression analyses were utilized to evaluate these relationships
pretreatment to post treatment as well as from pretreatment to 3- and
6-month follow-ups. The results indicated that outcomes were most closely
related to: (1) an increased sense of control over pain, (2) a belief that
one is not necessarily disabled by FM, (3) a belief that pain is not
necessarily a sign of damage, (4) decreased guarding, (5) increased use of
exercise, (6) seeking support from others, (7) activity pacing and (8) use
of coping self-statements. These findings are consistent with a
cognitive-behavioral model of fibromyalgia, and suggest targets for
therapeutic change.


How Well Do Your Medicines Mix?

By Jill Ross, HealthAtoZ contributing writer

If you were to take medicine to lower cholesterol as well as something for
that bothersome foot fungus, or aspirin for heart protection and Ginkgo
biloba, an herbal supplement advertised to improve your memory, you could do
your body more harm than good.

The problem is drug interactions. Many of our medicines have powerful
ingredients that interact with other medicines (both prescription and
over-the-counter), herbal supplements, and certain foods, beverages,
alcohol, caffeine, and even cigarettes. The interaction may make your
medicines less effective or may cause dangerous side effects.

"Your risk of having a drug interaction depends in large part on how many
medicines you are taking," according to an American Pharmaceutical
Association online pamphlet on drug interactions. Certainly, the more
medications you take, the greater your chance of a drug interaction.

Types of drug interactions

There are three main types of drug interactions:

Drug-drug interactions occur when a medication interacts or interferes with
another drug. The drugs can be prescription drugs, over-the-counter (OTC)
drugs, such as aspirin, acetaminophen and cold medicine, or even vitamins
and herbal products.

Sometimes when two drugs interact, the overall effect may be greater than
desired - or less than desired. For example, combining aspirin and
blood-thinners like warfarin (CoumadinR) - two drugs that help prevent blood
clots from forming - may cause excessive bleeding. Yet, certain antacids
taken with antibiotics, blood thinners and heart medications can keep those
drugs from being absorbed into the bloodstream, making them less effective.

In other cases, the effects of a drug can increase the risk of serious side
effects, such as when some antifungal medications interact with some
cholesterol-lowering medications.

Herbal remedies, which many consumers tend to view as harmless, can actually
be very risky when it comes to drug interactions. Ginkgo biloba, for
example, can cause excessive bleeding if taken with aspirin or medications
that have antiplatelet or anticoagulant properties, such as warfarin
(CoumadinR) and clopidogrel (PlavixR).

Drug-food interactions happen when a medicine interacts, or interferes, with
something you eat or drink. For example, drinking grapefruit juice may
result in increased blood levels of medicines, such as certain popular
cholesterol-lowering drugs.

Mixing alcohol with some drugs is a dangerous cocktail. The combination of
alcohol with some drugs may cause you to feel tired or slow your actions.
Worse, the combination of alcohol with non-steroidal anti-inflammatory drugs
(NSAIDS), such as aspirin and ibuprofen, or analgesics to treat pain and
fever, such as acetaminophen, increases your risk of liver damage or stomach

Drug-condition interactions happen when a medication interacts, or
interferes with a disease or condition. For example, taking a decongestant -
found in many cold remedies - may cause your blood pressure to go up. This
may be dangerous for people who have high blood pressure.

Preventing drug interactions

You can lower your risk of a drug interaction by taking these few simple
steps recommended by the American Pharmaceutical Association:

1. Read the labels or prescribing information of all medicines. Look for the
"Drug Interaction Precaution" and read it carefully.

2. Tell all of your doctors and pharmacists about all of the medications you
use. Be sure to include any vitamins or herbal products you use. A written
record of everything you take will help them spot possible drug

3. Before taking any new medication, talk to your doctor or pharmacist. Ask
whether it's safe to take the new medicine with other medications, vitamins
or herbal products you are taking. Also be sure to ask if there are any
foods, beverages or medications you should avoid while taking the new

4. Ask your doctor or pharmacist for advice on over-the-counter medicines.
These health care professionals can help you choose the medicine that best
meets your health needs. If you can, buy your over-the-counter medicines at
the same pharmacy where you have your prescriptions filled. That way, the
pharmacist can check your records to see if or how your medicines could
interact with one another.

U.S. Food and Drug Administration/National Consumers League

American Pharmaceutical Association


Ann Rheum Dis. 2004 Jun;63(6):723-9.

Health related quality of life in multiple musculoskeletal diseases: SF-36
and EQ-5D in the DMC3 study.

Picavet HS, Hoeymans N.

Department for Prevention and Health Services Research (PZO, pb 101),
National Institute of Public Health and the Environment, PO Box 1, 3720 BA
Bilthoven, Netherlands.

OBJECTIVE: To examine the health related quality of life of persons with one
or more self reported musculoskeletal diseases, as measured by the short
form 36 item health status survey (SF-36) and the Euroqol questionnaire

METHODS: A sample of Dutch inhabitants aged 25 years or more (n = 3664)
participated in a questionnaire survey. Twelve lay descriptions of common
musculoskeletal diseases were presented and the subjects were asked whether
they had ever been told by a physician that they had any of these. Their
responses were used to assess the prevalence of these conditions. Commonly
used scores of SF-36 and descriptive scores from EQ-5D are presented, along
with standardized differences between disease groups and the general

RESULTS: SUBJECTS: with musculoskeletal diseases had significantly lower
scores on all SF-36 dimensions than those without musculoskeletal disease,
especially for physical functioning (SF-36 score (SE), 75.2 (0.5) v 87.8
(0.5)); role limitations caused by physical problems (67.1 (0.9) v 85.8
(0.8)); and bodily pain (68.5 (0.5) v 84.1 (0.5)). The worst health related
quality of life patterns were found for osteoarthritis of the hip,
osteoporosis, rheumatoid arthritis, and fibromyalgia. Those with multiple
musculoskeletal diseases had the poorest health related quality of life.
Similar results were found for EQ-5D.

CONCLUSIONS: All musculoskeletal diseases involve pain and reduced physical
function. The coexistence of musculoskeletal diseases should be taken into
account in research and clinical practice because of its high prevalence and
its substantial impact on health related quality of life.


Women Twice as Likely to Suffer Depression as Men According to Harvard
Mental Health Letter

BOSTON, April 30 /PRNewswire/ -- Worldwide, almost twice as many women as
men are dealing with depression, according to the May issue of the Harvard
Mental Health Letter. One out of eight women will have an episode of major
depression at some time in her life. Women are also more vulnerable to
bipolar disorder, seasonal affective disorder, and dysthymia (low-level,
long-term depression).

The Harvard Mental Health Letter attributes women's increased susceptibility
to these factors:

-- Genetics: Heredity accounts for up to 50% of the risk for depression.
Researchers have identified several gene variants linked to depression that
occur only in women, including one that is related to female hormone

-- Women acknowledge their symptoms: Men are more reluctant to admit the
problem or reach out for help.

-- Stressed: Women are more likely to say they are under stress, according
to a survey of over 30,000 people in 30 countries. Women, more than men, are
subject to certain kinds of severe stress such as sexual abuse and domestic

-- Premenstrual disturbance: Between 2% and 10% of women have premenstrual
dysphoric disorder, which results from high sensitivity to changing hormone

-- Pregnancy/postpartum: About 10%-15% of mothers become depressed during
the first six months post birth, and an even higher percentage may be
depressed during pregnancy.


Jury acquits doctor in pain-control test case

Carl T. Hall, Chronicle Science Writer

A Shasta County physician who once faced multiple counts of murder and other
felonies as part of an alleged drug-dealing conspiracy was found not guilty
late Tuesday of the remaining charges against him, ending a high- profile
case seen as a test of the ability of doctors to treat patients with chronic

Dr. Frank B. Fisher, 50, was acquitted of charges that he had defrauded the
state Medi-Cal system -- the only criminal charges that hadn't already been
dropped -- by a Shasta County Superior Court jury after a two-week trial in

See complete article:


Fibromyalgia Syndrome: A Central Role for the Hippocampus: A Theoretical
Construct Page Range: 19 - 26 DOI: 10.1300/J094v12n01_04

Patrick B Wood MD, Assistant Professor, Department of Family Medicine,
Louisiana State Health Science Center-Shreveport, Shreveport, LA 71103,


Objective: A growing body of evidence implicates the central nervous system
as playing a primary role in the diverse phenomena associated with
fibromyalgia, including hyperactivity of stress systems and enhanced
nociception. The objective of this review is to propose a unifying theory to
explain a majority of these. Findings: Stress exposure causes deleterious
changes within the central nervous system, the hippocampus being
particularly vulnerable. The hippocampus is perhaps best known for its role
in memory and cognition, two functions which are impacted by elevated
glucocorticoid levels such as occur in prolonged stress. The hippocampus
also provides inhibitory drive to brain centers associated with the stress
response, i.e., the hypothalamic paraventricular nucleus, central amygdala,
and locus coeruleus. In addition, the hippocampus has been demonstrated to
participate in nociception, a function positively correlated with the
activity of hippocampal N-methyl-Daspartate [NMDA] subtype glutamate
receptors. A variety of stress-related hormones are known to enhance the
activity of hippocampal NMDA receptors, thereby increasing excitatory
neurotransmission within the hippocampus. While the impact of stress-related
hormones on hippocampal NMDA receptor function is adaptive in the acute
scenario, exposure to chronic stress eventually leads to hippocampal
dysfunction and atrophy secondary to excessive excitatory neurotransmission
[i.e., excitotoxicity]. Conclusion: Fibromyalgia is characterized by
abnormalities that appear to be related to hippocampal dysfunction,
including hyperactivity of both corticotropin-releasing hormone neurons and
the sympathetic nervous system, impaired declarative memory, and enhanced
NMDA receptormediated nociception. It is therefore postulated that
stress-induced, NMDA receptor-mediated dysfunction within the hippocampus
plays a central role in the etiopathogenesis and clinical phenomena of


Why is Our Government Pursuing a War on Doctors?

By David B. Brushwood, R.Ph., J.D.

We all make mistakes. We know we make mistakes. There's a wonderful phrase,
"The Fog of War." What the Fog of War means is that war is so complex it's
beyond the ability of the human mind to comprehend all the variables. Our
judgment, our understanding, are not adequate. And we kill people
unnecessarily. Robert S. McNamara, Secretary of Defense, 1961-1968.

Ron Paul, M.D., a Republican United States Congressman from Texas, recently
declared on his website that "The War on Drugs is a War on Doctors." Dr.
Paul concludes that by applying federal statutes intended for drug dealers,
"prosecutors are waging a senseless war on doctors." The victims of this
war, says Dr. Paul, are not only doctors but also their untreated or under
treated patients in pain.

This conclusion is not news to anyone who has been keeping track of drug
enforcement activities over the past several years. It is certainly not news
to Dr. Frank Fisher, Pharmacist Stephen Miller, and Miller's wife Madeline
Miller. All three were charged with five counts of murder in alleged deaths
resulting from their prescribing and dispensing of opioid analgesics to pain
patients. All three have been exonerated. It is not news to over 100 other
doctors and pharmacists who have been charged with crimes for providing
opioid analgesics to pain patients. It is not news to chronic pain patients
who are living and dying in agony because doctors and pharmacists are afraid
to help them. It is not news to California Republican State Senator Sam
Aanstad, a dentist who has introduced legislation that would significantly
curtail the ability of prosecutors to charge doctors with crimes for
prescribing pain medications. It is not news to the news media, who have
finally recognized that the real story is the war on doctors and not the
diversion of opioids. Reporter Jen McCaffrey, of the Roanoke Times covered
the trial of Dr. Cecil Knox, who was acquitted of most charges but still
faces trial in a few remaining counts. She says that the joke among doctors
in Roanoke is "write a prescription, go to jail." This so-called "joke" is
not a bit funny. It is too true to be funny.

Make no mistake. There is a war on doctors. There are tens of thousands of
innocent victims of this war. The war must be stopped. Dr. Ron Paul's
congressional colleagues should listen to him and act quickly.

Why is the war on doctors happening? Why is it happening now? Who is
responsible for this tragic injustice? What factors have brought us to this
intolerable situation from which an exit strategy must immediately be found?

For complete article:


Fatigue in Gulf War Veterans Linked to ACE Gene Mutation

NEW YORK (Reuters Health) May 24 - Veterans of the Persian Gulf War
diagnosed with chronic fatigue syndrome or idiopathic chronic fatigue may be
more likely than nonaffected veterans and the general population to have a
polymorphism of the angiotensin-converting enzyme gene, according to a new

Chronic fatigue syndrome that occurs in the general population is often
associated with sudden onset, whereas that in Gulf War veterans tends to
begin gradually, Dr. Georgirene D. Vladutiu and Benjamin H. Natelson explain
in their report in the July issue of Muscle and Nerve.

The symptoms of chronic fatigue resemble the myopathies that accompany
mutations in the myoadenylate deaminase gene (AMPD1) and the carnitine
palmitoyltransferase gene (CPT2). The insertion/insertion genotype of the
angiotensin-converting enzyme gene, DCP1, has been linked to enhanced
endurance and performance in athletes, whereas the insertion/deletion
polymorphism is involved in cardiovascular adaptation to exercise, so the
authors hypothesized that its role in fatigue may be important in chronic
fatigue syndrome.

They therefore examined DNA sequences in the AMPD1, DCP1 and CPT2 genes of
49 Gulf War veterans and 61 nonveterans with chronic fatigue, as well as 30
healthy Gulf War veterans and 45 healthy nonveterans.

The four groups did not differ in polymorphisms in AMPD1 or CPT2. However,
veterans with the deletion/deletion genotype of DCP1 were 8 times more
likely to develop chronic fatigue compared with veterans with the II
genotype. Affected veterans were also less likely to have an insertion
allele (odds ratio 5.08). Those in the nonveteran cohorts did not differ
significantly from each other or from the healthy veteran group.

There may thus be "an interaction between these genetic polymorphisms and
some factor unique to deployment to the Persian Gulf," such as vaccine
exposures and wartime stressors, the authors write.

These findings need to be replicated before any definite conclusion scan be
drawn, the authors note, and the association should be examined in British
veterans of the first Gulf War, those in the current Iraqi war, and those
involved in conflicts in other areas of the world.

Dr. Vladutiu is based at the State University of New York at Buffalo, and
Dr. Natelson at the UMDNJ-New Jersey Medical School in East Orange.

Muscle Nerve 2004;29.


Treating depression: Update on antidepressants

Antidepressants are a mainstay of depression treatment. We've learned more
about what they do and how best to use them.

Depression. The ancient Greeks were on the right track when they called it
"melancholia" and described it as a disabling illness rather than a passing
bout of sadness, dejection, or feeling down in the dumps. As anyone who has
experienced it knows, depression settles in and takes over. It can rob us of
sleep, the desire to eat, the ability to concentrate, and, perhaps worst of
all, the capacity to take pleasure in anything, including family and
friends. All over the world, this debilitating experience is more common in
women than in men. In the United States, where more than 19 million adults
suffer from some type of depression every year, the ratio is two to one.

Most depression can be treated effectively.

For complete article:


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