The Northern Virginia
Support Group

Group News

Home        Email Us         Subscribe         Search        Sitemap 

Selections from our EMAILS and NEWSLETTERS

January 2001

CSN Honors Three of Our Own
FDA Recalls Certain Injectable Medications
The Irritable Heart - Gulf War Syndrome
A Tibetan Medicine Approach to CFS
CFSupport Email System Changes
AACFS Conference In Seattle Jan 2001
Oct 2000 State of the Science of CFS Conference Report
Role Of Orthostatic Intolerance In CFS
New SSA Increase SGA and TWP Earning Levels &
Increase SSI Student Earned Income Exclusion for 2001
Employment Law Referrals
Steroid Medication No Help To CFS Patients Who Get That Faint Feeling
Illness Experience Reflected In Poetry and Art
Nourishing Traditions Suggestions for CFS
Your Body's Many Cries For Water
Washington Post on "Zits" and FMMore Items In The News
Recent Books
Genetic Link To CFS
Dissolution Of Montgomery County, MD, CFIDS Group


Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo! group at .

As a member of our CFSupport Yahoo group, you would be able to browse and search our archives, use our Calendar of local and national groups, download files, use our rideshare database as well as receive current updates of interest regarding CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.

CSN Honors Three of Our Own

The CFIDS Support Network (CSN) of the CFIDS Association of America
has announced the CSN Action Awards for 2000, and three of our own are among

  • Toni Marshall has won the Champion award for New Support Group Leader.
  • Attorney Mitch Lambros has won the Champion award in the Other category.
  • Dr. Alan G. Pocinki has won a Health Professional Champion honorable mention.

All three have been champions for years to all of us who know them and have
benefited from their wisdom, advice, leadership, and dedication to persons with
CFS in our community. Congratulations to them, and to all of the other award
winners throughout the country!

And thanks to Elly and other group members who wrote in letters nominating our
three local favorites.

FDA Recalls Certain Injectable Medications

The FDA has issued a recall (dated January 25, 2001) for injectable medications labeled as
having been manufactured or marketed by AMRAM, Inc. or Phyne Pharamceuticals.
The list includes several types of medications commonly used by persons with
CFS, such as Vitamin B-12 (Cyanocobolamin) and Hydroxocobalamin (another form of
B-12). For complete information, see:

 The Irritable Heart - Gulf War Syndrome

Sick of War
Reviewed by Edward Dolnick
The Washington Post - Book World - Sunday, January 28, 2001 ; Page T06

The Medical Mystery Of the Gulf War
By Jeff Wheelwright
Norton. 352 pp. $26.95

Excerpt of Review: Wheelwright ... argues that Gulf War Syndrome is a real illness with a strong family resemblance to chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivity. This may be so, but the claim is perhaps less bold than Wheelwright implies. Chronic fatigue and the others are poorly understood and notoriously difficult to treat. To debate whether Gulf War Syndrome belongs in their murky family smacks of debating whether a particular body of water is a bog or a swamp.

Patients with hard-to-diagnose illnesses are doubly afflicted. Their disease torments them, of course; but, too often, baffled and impatient doctors make matters worse with their own hostile or dismissive attitudes. Wheelwright is free of all such patient-blaming tendencies. Even so, the veterans he interviewed resented his skeptical questioning. "Something happened over there to me and my friends," one snapped, "and if you don't want to believe it, that's fine. You're just doing [the book] to get attention and to get money."

A Tibetan Medicine Approach to CFS

Elly was alerted to this "Ask Amchi" CFS Q&A appearing on the internet recently:

Dr. Trinley Wangchuck, Amchi,  answers selected questions on herbs, health and Tibetan medicine from his home in Kathmandu.

Tashi Delek! Greetings! Amchi is a Tibetan word similar to "doctor," and I have spent my life studying and practicing traditional Tibetan medicine. I am also the chief formulating herbalist of Tibetan Formulas medicinal teas.

Q: I have chronic fatigue syndrome, and it affects every aspect of my life. I
cannot hold a fulltime job because I am exhausted when I wake up in the
morning. I cannot exercise because my body aches afterwards, and I cannot
maintain an active social life because I am too tired. I am a 33-year-old
man, and I used to be a nationally ranked long distance runner, a top
performer at my social service job, and I had a large circle of friends. Is
there a cure in Tibetan Medicine? I would do anything to get my old life back.

           --Tired in Tacoma

A:  I will talk about chronic fatigue syndrome (CFS) overall and then come back to your specific case....

I have seen some chronic fatigue syndrome in Westerners over the last eight years. The people are very similar psychologically: type A personalities and high performers who push their mind and bodies to the limit and are very hard on themselves. 

The pulse in these cases feels similar to the pulse of someone who has digested poison—very flighty, unstable, fast and then slow, etc. Eight hundred years ago in Tibet a spiritually advanced monk prophesied there would come a day when "ignorant men" would make artificial substances that would poison the protector gods and deities that watch over mankind. The gods would in turn "go crazy" and hurt, rather than preserve, mankind's physical and mental health. Many Tibetan monks believe this time has come. 

What does this mean? In more mundane terms, men or women will advance technologically to the point where they can create substances not seen before in nature. Foolishly they will release them into the environment without considering their long-term effects on humankind and the mesh of animals, plants, and inorganic materials that support life on this planet. The "ignorance" in this case does not mean lack of intelligence. It means a lack of understanding of the interrelated nature of things—a spiritual ignorance. The "protector gods" can be considered the natural forces of the environment that have supported life on the planet for eons. 

How does this relate to chronic fatigue syndrome and to your case? Most traditional Tibetan doctors, myself included, believe that CFS is caused by an overload of toxins in the system, compounded by extreme stress over a long period of time. This results in some type of pathogens gaining a foothold in the body and disrupting its natural equilibrium. It's like an avalanche: first one little, almost imperceptible stone shifts, then another, then two, then ten, then a hundred, then the whole slope comes tumbling down. 

The good news is that, as human beings, we have a lot of options to create our own "positive avalanches." Things can go up as well as down. 

CFS is very complex. Every step in its treatment needs to be made under the care of a trained health professional. First off, the patient needs to be detoxified of as many external and internal poisons as possible. In Tibetan Medicine we describe it this way: "You cannot dye a dirty sheet. First you need to wash the sheet, then dye it." There are myriad ways to detoxify in Tibetan Medicine. We use herbs, gentle exercise, steam baths, and massage. It is too complex to go into specifics here, but I am confident you can find information on detoxification there in the U.S. Remember, herbs alone are not enough. You also need to do gentle exercise, including stretching, get at least some massage, and enjoy a steam bath once a week. A trained health professional should supervise your detoxification, as it is very powerful and yet subtle. Detoxification is the first step. Do not go through the detoxification process for too long. Again, consult a trained professional to advise you. 

Secondly, support the liver. It is the organ responsible for detoxifying the body, day in and day out. In Tibetan Medicine we use three herbs to detoxify the body and liver: Terminilia chebula, Terminilia bellerica, and Emblica officinalis. They are known as the "kings of medicine." These herbs are in our Seven Precious Decoctions Tea and are good, gentle, deep cleansers. Drink plenty of clean water, 10 to 12 cups per day. 

Third, simplify your diet to grains, beans, fresh vegetables, and a little fish or chicken. Eliminate all sugar and "junk foods." We believe the pathogens "feed" on these foods and grow stronger. You need to starve them out—it's your body after all—but it is not easy. They put up a fight and make you feel lousy as they die off. It takes a long time, but once they are gone you can be a little more free with your diet. 

In Tibetan Medicine butter is thought to be very good in a case like this. It's even better if you can get good farm-fresh butter. I have heard that butter is unpopular in the West now. That's strange. Perhaps it is how it is processed. Here we even drink butter in our tea. Fourth, you need to practice some type of contemplation—prayer, meditation, even counseling—to help you find some way to look at your life and give thanks for your blessings. This is very important for everyone but vital for people with chronic diseases. 

Let's get back to your particular case. In Tibetan Medicine the patient's personality, use of words, and the way he describes his condition is taken into account when advising the patient. This is not good or bad—it simply reflects the individuality of the patient and his condition. You use the words "I cannot" several times in describing your life. Want a reality check? You will not get your "old life" back. No one does, with or without illness. Time brings changes, and our only choice is to change with it or pine away for some past "paradise" or future "nirvana." Live here now with what you have. You may not be able to compete nationally, but you can still go for walks and stretch. You may not be able to maintain your position as a "top performer" at your social service job, but you can still serve people in smaller, perhaps more direct ways. Smiling at someone on the street is a type of service, and how many people do that? You might not be the toast of the town, but you can still cultivate friendships by sharing your life with others and sharing in theirs. You might not be the greatest lover who ever lived, but you can still lie in the arms of someone you love and who loves you. What could be better than that?

-- Amchi Trinley Wangchuck

CFSupport Email System Changes

We started our group email list on a PC's address book, then went over to Onelist. Onelist merged with eGroups. Recently, eGroups became part of Yahoo Groups.

What does this mean to us? All the features from eGroups have carried over, and some new ones have been added. All of our old eGroups email and webaddresses will continue to work. And all of our group information and membership has been maintained. There's no need to resubscribe to the email list.

For email only users, nothing will change, except that you may notice the new "yahoogroups" addresses on our email announcements. You will not need to obtain a Yahoo! ID or do anything else to continue receiving our emails.

For those who use web services such as the email archives, the first time you visit again, you will need to merge your existing eGroups account with a new or existing Yahoo! ID. Yahoo!
has set up a step-by-step wizard process.

A reminder of how our email list operates, as well as its new addresses:

CFSupport is an announcement list. Only the list moderators (2001: Elly, Toni, and Ira)
are able to send out messages to subscribers. If you have a relevant message to forward to the entire list, please send it to .

You can subscribe, view our archives, unsubscribe, or change your preferences at anytime. Here are some of the basics:

AACFS Conference In Seattle Jan 2001

January 26-29, 2001 (Fri-Mon): Fifth International AACFS Conference in Seattle, WA.
The American Association For Chronic Fatigue Syndrome is dedicated to the promotion of scientific research and improved patient care. 

Fri, January 26, 2001: The CFIDS Association of America's  (704-365-2343) CFIDS Support Network (CSN) held a Membership Reception at the Crowne Plaza Hotel. The reception was free to all current CSN members, typically support group leaders. 

Tuesday, January 30, 2001: Meeting of the Department of Health and Human Services Chronic Fatigue Syndrome Coordinating Committee (CFSCC) was held in Seattle, WA at the WestCoast Grand Hotel on 5th Avenue. This meeting immediately followed the biannual AACFS meeting. See The D.C. Dispatch: Your CFIDS Public Policy Report by Vicki C. Walker, Spring 2001.

 Update 05/06.
AACFS is now IACFS and their website is

Oct 2000 State of the Science of CFS Conference Report

The report of the Chronic Fatigue Syndrome State of the Science conference held
October 23-24, 2000 is posted on the NIH's Office of Women's Health website with other reports:

Role Of Orthostatic Intolerance In CFS

Scientific panel issues consensus statement calling for more research

WASHINGTON, DC- Orthostatic intolerance (OI), a condition in which upright posture provokes dramatic changes in heart rate and blood pressure, may have a connection to chronic fatigue syndrome (CFS). This was one conclusion reached by a panel of experts that convened in December for the first in a series of scientific symposia on CFS sponsored by The CFIDS Association of America.

OI is an umbrella term for several disorders that may be due in part to abnormalities in the autonomic nervous system. The connection between OI and CFS was first explored in 1995, when researchers at Johns Hopkins University identified at least one form of OI in 96% of CFS patients tested.

"The field of OI is one of the most promising avenues for gaining more insights into CFS," said panel chair Tim Gerrity, executive director of the Chronic Pain & Fatigue Research Center at Georgetown University. "Conducting more research on the similarities between the two conditions could directly benefit the millions of people worldwide who live with this devastating illness."

Following a day of presentations and discussion by experts, an independent panel composed of well-respected researchers and practitioners in the fields of endocrinology, epidemiology, pediatrics, rheumatology, neurology, psychology, allergy, and internal medicine developed a consensus statement on the key issues surrounding CFS and OI.

The panel agreed that:

· There is evidence of an altered autonomic nervous system and/or circulatory system in CFS.  The panel noted that the symptoms of OI are often seen in CFS patients and that the physiological stressors that exacerbate OI may also intensify symptoms in CFS patients.

· The exact relationship between OI and CFS is still unclear. Although both conditions may be preceded by a viral-like illness, patients with OI (but not CFS) often do not report hallmark symptoms of CFS, including severe fatigue, post-exertional malaise, joint and muscle pain, recurrent sore throat, and painful lymph nodes.

· Methods for studying autonomic nervous system dysfunction in CFS are available.  Although a number of conditions such as OI, Addison's disease, and acute Epstein-Barr infection have clinical features in common with CFS, there are no human models that sufficiently reflect the spectrum of CFS symptoms. However, the panel pointed out that animal models and tests measuring the patient's response to a specific activity or pharmacologic challenge can be
used to study aspects of autonomic regulation in CFS.

· There are relationships between autonomic nervous system dysfunction and other abnormalities seen in CFS patients. The available data suggest that CFS patients have altered relationships between the autonomic nervous system and the cardiovascular, neuroendocrine, and immune systems. The panel recognized that the extensive interdependence of these systems has made discovery of a primary cause of CFS a constant challenge for the research community.

· More research is needed to further define the possible interaction between OI and CFS.  The panel outlined future research needs, including more studies of autonomic function and altered brain perfusion, examination of the relationships between the autonomic nervous system and other body systems, and testing of therapeutic interventions to directly impact patient care in CFS. The panel also suggested ways to overcome some of the methodological barriers researchers have faced, including subgrouping CFS patients to handle the diversity of the patient base and using standard definitions of OI terms to ensure that future study results can be compared.

The CFS assessment symposia series is designed to examine the role of the neurological, endocrine, circulatory, and immune systems in CFS. The symposia gather experts to evaluate research findings, identify the most promising next steps for research, define research and funding priorities, and create research collaboration teams.

The CFIDS Association of America is the nation's leading organization working to conquer this illness. Since 1987, the Association has invested nearly $12 million in education, public policy, and research programs in its efforts to bring an end to the suffering caused by CFS.

CFS, also called chronic fatigue and immune dysfunction syndrome (CFIDS), is defined as a debilitating and complex disorder characterized by profound fatigue, pain, and cognitive problems not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS function at a substantially lower level of activity than they were capable of  before the onset of the illness. 

The CFIDS Association of America, Inc.
Advocacy, Information, Research and Encouragement for the CFIDS Community
PO Box 220398, Charlotte NC 28222-0398
Resource Line: 704/365-2343
Fax: 704/365-9755
General E-mail:

New Social Security Regulations Increase SGA and TWP Earning Levels And Increase SSI Student Earned Income Exclusion for 2001

The Social Security Administration published final regulations on December 29th to make 3 significant changes in the work incentives provisions, effective for January 2001.

  • The substantial gainful activity amount for 2001 is $740/month.
  • If  earnings are over $740/month and receive SSI, you will qualify for 1619(a) Medicaid.
  • The trial work period monthly amount for 2001 is $530/month. For a self-employed individual, if the individual’s earnings are not over $740/month, SSA will consider that the individual was performing substantial gainful activity if the individual worked more than 80 hours in a month. (This is a change from 40 hours in a month).
  • The monthly earned income exclusion for students who receive SSI for 2001 is $1,290, and the annual exclusion is $5,200.
  • All of the above amounts will be adjusted each year.

SSA's Employment Support For People with Disabilities Page

Employment Law Referrals

The D.C. Employment Justice Center has a page of links for all kinds of law referrals including a site dedicated to DC area pro bono options.

Steriod Medication No Help To CFS Patients Who Get That Faint Feeling

National Institute of Allergy and Infectious Diseases
NIH NEWS RELEASE RELEASE Tuesday, January 2, 2001 4:00 p.m. EST

Besides suffering severe tiredness and a host of other symptoms, some patients with chronic fatigue syndrome (CFS) find standing for long periods makes them lightheaded or even faint; eventually their blood pressure drops so low they can't remain upright, a condition known as neurally mediated hypotension (NMH). But according to a new study in the "Journal of the American Medical Association", a steroid hormone drug, fludrocortisone, often used to treat low blood pressure, by itself does not alleviate these symptoms in CFS patients any better than a placebo. Although fludrocortisone didn't help the patients in this study, other drugs or drug combinations, including certain heart medications, may still benefit them and need to be formally tested, say the authors from the National Institute of Allergy and Infectious Diseases (NIAID) and the Johns Hopkins University School of Medicine. "This was an attempt to test one important recent hypothesis about what causes CFS," says NIAID co-author Stephen Straus, M.D., who also serves as director of the National Center for Complementary and Alternative Medicine at the National Institutes of Health (NIH). "The results do not completely negate NMH's role in a subset of CFS patients, but it clearly tells us that fludrocortisone by itself is insufficient to alleviate that form of low blood pressure adults in the United States as well as a proportionally smaller number of adolescents and children. Although debilitating fatigue is the hallmark of the syndrome, memory and sleeping problems, muscle aches and other symptoms make the ordinary activities of daily living a struggle for many people with CFS. Because scientists have not yet pinpointed the cause of CFS, treatment is targeted to specific symptoms, such as the lightheadedness that prompted the investigation of fludrocortisone as a possible remedy. In a pilot study conducted in the mid-1990s, Peter Rowe, M.D., a Hopkins pediatrician and co-author of the new report, gave some people with CFS and NMH fludrocortisone or other drugs and found that their CFS symptoms improved. Because fludrocortisone appeared to be the most promising, Dr. Rowe began a collaboration with the NIAID team to rigorously test the hypothesis that NMH might be an underlying and treatable cause of CFS symptoms. The two centers together screened 750 applicants and winnowed this group down to 171 potentially eligible, moderately ill adult CFS patients. Of those, 100 enrolled in the study after also being diagnosed with NMH by a two- stage tilt-table test performed by the Hopkins group. During the test, the volunteer lies on a table and is loosely held in place by safety straps and a footboard. The table is then tilted upright to 70 degrees for up to 45 minutes, and after a brief respite, for as much as 15 minutes more. During either stage, the investigator stops the test if the volunteer faints or develops low blood pressure. The 100 participants were randomly divided into two groups. Half received fludrocortisone (0.1 milligram per day) and half received placebo for nine weeks. Neither the participants nor the study team know which regimen the patients received. Based on standardized, daily self- ratings of overall wellness and other measures of illness severity, however, they experienced no significant difference in benefit: 14 percent of those treated with fludrocortisone had a notable improvement in overall well- being compared with 10 percent of those in the placebo group. This is the largest and only randomized, placebo-controlled study to investigate the potential role of NMH in CFS. Since 1996 when the study began, well-designed clinical trials have found that four different drugs, some of which have a more direct effect on blood pressure, can benefit some people who don't have CFS but who experience recurrent fainting due to NMH. According to Dr. Rowe, these studies provide a rationale for testing such treatments in patients with CFS and NMH. "CFS is a complex and debilitating disorder," Dr. Straus concludes, "and serious research efforts at NIH and elsewhere continue in an effort to understand how it occurs and how best to treat it." NIAID is a component of NIH.

NIAID supports basic and applied research to prevent, diagnose, and treat infectious and immune-mediated illnesses, including HIV/AIDS and other sexually transmitted diseases, tuberculosis, malaria, autoimmune disorders, asthma and allergies.

NIAID press releases, fact sheets and related materials are on

Illness Experience Reflected In Poetry and Art

Member Tonette Hartmann writes: "I just submitted this 5 stanza Haiku in a poetry contest.  I think it encapsulates this disease, yet in an optimistic light. Anyway, thought maybe you'd like to print it in the newsletter and/or just send it to whomever you want, in the hopes that it might bring some recognition, comfort and hope to our suffering brothers and sisters."

My Journey

Life is a surprise!
Daily, I encounter change --
Rarely, by my choice.

I was a singer,
A mother of two children,
Always on the go.

Suddenly -- illness.
And that which had defined me
Slowly disappeared.

The "old" me is gone.
Yet, each day I discover
Another new gift.

I no longer sing.
Instead, my voice resonates
When I write Haikus.

Tonette Hartmann

Copyright ©2000 Tonette Hartmann

Thanks, Tonette, for sharing this wonderful poem with us! Tonette's
poem can also be viewed online at: .
[and as of late 2006, at CFSupport's Art Gallery]

The poem reminded us of the many creative ways in which people with CFS, FM, and other chronic illnesses have expressed their experiences through essays, poetry, and graphic arts. See our Resources list for Art, Poetry and Film and these favorites:

Links updated 02/07

Nourishing Traditions Suggestions for CFS

Last month at our meeting, Sally Fallon, author of Nourishing Traditions discussed how traditionally prepared foods heal and protect us from disease (WAPF Meeting Notes).  Sally is president of the Weston A. Price Foundation in Wash DC, a group dedicated to helping people understand about traditional food and keeping modern access available. Sally mentioned that if people are members of her organization by December, they would receive a Shopping Guide for finding traditional ingredients. Membership is $40, but if you are on disability, the senior rate of $25 per year applies. 

This Q&A about CFS by Tom Cowan, MD, who writes for WAPF's journal Wise Traditions, was on WAPF's site. (Btw, I had soaked oatmeal + ghee for breakfast and fermented cucumbers at lunch. I eat nuts that have been soaked and crisped. It has been not too hard and it tastes good and makes me feel a little better. I also am taking cod liver oil pills as Sally and Geoff recommended. -Elly)

The complete (same) Q&A appear at these 2 websites:   and

Here is an excerpt:

Q: I am a 45-year-old woman CFS for 3 years. It seems I have tried everything. For a short time I got better but now I feel no better off than I did two and a half years ago...Can you help?

Answer: I hope so. ... I explained ... my view of chronic fatigue syndrome which I will admit even to me seems almost absurdly simple. That is, our energy level, or our energy resource, is like a flowing river. This river has many tributaries or areas to which our energy is diverted. The main energy drain for most of us is the digestion of our food. When we ease this energy drain going to digesting our food, we suddenly have a huge reserve available for tasks such as muscle function, thinking, exercise or other more creative pursuits. This is the essence of chronic fatigue syndrome. ... The main contributing factors I have found in making the digestion weak and a greedy energy drain are eating processed food and the overconsumption of carbohydrate-type food, even whole grains. 

The simple intervention.. which ... has had dramatic and lasting results, is fairly simple. First, ... eat no more than 10-15% of  as carbohydrate-type food, including grains, pasta, flour, fruits, sugars, fruit juice, etc. and the only allowable grains are either fermented (sourdough) bread or whole grains like those discussed in Nourishing Traditions. ....

Second, on a daily basis, use some fermented food or drink. My favorite suggestion is Beet Kvass, for which a recipe is given in Nourishing Traditions, because it is also helpful for liver cleansing. Drink three times a day.  ...

Third, use Celtic sea salt only, as this is the only salt with the trace elements present that are so vital to proper enzyme functioning. Fourth, daily castor oil packs over the liver area for one hour each day. These packs aid digestion, detoxify the bowels, and cleanse the liver. These fundamental changes usually will have a dramatic impact on your symptoms within one month and, unlike many therapies, the benefits will increase, not diminish, over time.

-Tom Cowan
This article first appeared in the Price-Pottenger Nutrition Foundation Health Journal in 1999.

Your Body's Many Cries For Water

Here is a book that may be relevant for those with dehydration issues. 

Your Body's Many Cries For Water  by Fereydoon Batmanghelidj (July 1995, Paperback)

Editorial Review
This book explains a new discovery about the cause and cure of many painful conditions and degenerative diseases. As a result of extensive research into the role of water in the body, the author, a medical doctor, has found that chronic dehydration is the cause of many conditions including asthma, allergies, arthritis, angina, migraine headaches, hypertension, raised cholesterol, chronic fatigue syndrome, multiple sclerosis, depression, and diabetes in the elderly. The body possesses many different thirst signals. A dry mouth is not a reliable indicator of your body's water needs. This book shows how to recognize the various thirst signals, and helps you learn to understand when your body is calling for water. In this way, you can prevent, treat and cure a variety of conditions of ill health, at no cost, with nature's miracle medicine: water. The book explains how much water one needs to drink a day to stay healthy, and why tea, coffee, and sodas are not good substitutes for water.

Washington Post on "Zits" and FM

The Washington Post style section had a very moving story about the families of Jerry Scott and Jim Borgman, the creators of the comic strip "Zits". The story is "Drawn From Life" by Laura Sessions Stepp, Washington Post Staff Writer, Friday, December 1, 2000; Page C01. The section about the Borgmans focuses on Lynn Borgman's struggle with fibromylagia and her death from a blood clot that developed following surgery undergone to relieve neck and back pain:

"By the mid-1990s, Lynn was having trouble keeping everything going. She would make plans for the kids and then be too tired to carry them out. She complained of fatigue and pain. Jim cooked supper, washed laundry, read to the kids at bedtime, transported them to and from school.

"Lynn took long naps, tried yoga, acupuncture, meditation. Eventually her doctors diagnosed fibromyalgia, a chronic disorder of the musculoskeletal system whose origin is unknown.

" 'Fibromyalgia sets up shop in your family before you have a name for it,' says Jim, a bear of a man with curly gray hair and kind eyes the color of slate. 'It involves a slow evolution of duties passed from one partner to another, a slow fading away of that person's presence in the family.' "

More Items In The News  

The latest ME AND CFS Capita Selecta Quarterly (Laymen's version), from David Axford and EM Goudsmit, is now available online at: .

The recent New Yorker article on FM - "Hurting All Over" by Jerome Groopman, The New Yorker, Nov. 13, 2000 - can be read online at: . As Elly noted in her Nov. 12 email, the middle section of the article interviews non-believers and may be upsetting to some. Lisa Lorden wrote a critique of article on's CFS section, but it is not longer available.  

Gulf War Symptoms Linked to Brain Damage Monday November 27 6:15 PM ET
CHICAGO (Reuters) - Symptoms such as memory loss and dizziness suffered by US veterans with Gulf War syndrome can be correlated to specific areas of the brain where cells have died, probably from chemical exposure, researchers said on Monday.

The Scientist
14[22]:35, Nov. 13, 2000
Scientific Medicine and Chronic Fatigue Syndrome
By Mary E. McNamara, MBA, is vice president and director of research, 
New Jersey CFS Association Inc., Allenhurst, N.J.

Recent Books

For helpful books, please see our website's bookstore at . Each purchase you make at through us helps the CAA's vital activities!

"Plague Time" by Paul Ewald
Evolutionist Paul Ewald argues that viral and bacterial infection is a primary cause of modern chronic diseases such as cancers, Alzheimer's, and heart disease. This book was also the subject of an article in the Nov. 27 issue of Newsweek Magazine.

"The Relaxation and Stress Reduction Workbook, Fifth Edition" by Martha Davis, Ph.D., Elizabeth Robbins Eshelman, M.S.W., and Matthew McKay, Ph.D. The Workbook, now celebrating its 20th anniversary with this updated edition,  covers nutrition, self-hypnosis, visualization, breathing, time management, and nine other methods for coping with stress.

"Eating for IBS" by Heather Van Vorous
If you have irritable bowel syndrome, lactose intolerance, Crohn's disease, or other digestive problems, try the 175 low-residue recipes (with nutritional analysis) in "Eating for IBS," written by Van Vorous, a sympathetic sufferer who runs the IBS message board on iVillage

"The High-Protein Cookbook" by Linda West Eckhardt and Katherine West Defoyd
The High-Protein Cookbook has more than 150 simple high-protein, low-fat, low-carb recipes, each requiring 30 minutes or less to prepare.   

Genetic Link To CFS

From AAP 29oct00 16.35 (AEDT)

CHRONIC fatigue syndrome (CFS) may be linked to a rare genetic mutation which starves the body of the steroid hormone cortisol, researchers have discovered.

A study of 32 members of one Australian family who each suffers CFS found they all had mutations of the gene, providing the first evidence for a genetic link to the disease. Endocrinologist Dr David Torpy (Torpy), whose research at the University of Queensland identified the mutation, cautioned that it was unlikely to be the only cause of such a complex syndrome. However, he will tell the 11th International Congress of Endocrinology in Sydney tomorrow that finding the cortisol link may lead to new successes in treatment for some CFS sufferers. "We are planning to trial a couple of different glucocorticoid supplements," he told AAP. Cortisol is produced by the adrenal glands in response to stress, and affects immune response.

Dr Torpy, a senior lecturer with UQ's department of medicine at Greenslopes Private Hospital, has found that the genetic mutation linked to CFS affects the ability to produce a protein - cortisol binding globulin - which is essential for the transport of cortisol in the bloodstream. "People who inherit one copy of the mutated gene produce only half the normal amount of protein, and people with two copies do not produce any of this protein at all," he said. People in the study family with one or two mutations have a marked tendency to develop a particular kind of chronic fatigue which hit them worst in the morning.

The gene discovery could potentially benefit many CFS sufferers but researchers did not yet know what proportion of people with the disease had the mutation. CFS patient groups in Queensland and Victoria were cooperating with a new study to determine whether it was rare or common. "If it turns out to account for even one per cent of chronic fatigue syndrome, then this would be a big advance, especially if it is treatable," Dr Torpy said. "Chronic fatigue is frustrating for doctors, because apart from excluding well-recognised causes such as depression, thyroid problems or iron deficiency, you just can't help people." About two per cent of the population have fatigue lasting longer than six months, which, with additional symptoms such as sore throat, swollen glands or difficulties with memory and concentration, may lead to a CFS diagnosis.

Dissolution Of Montgomery County, MD, CFIDS Group

November 2000 was the last meeting for the Montgomery County, Maryland CFIDS support group. They have lost their room in the Unitarian Church and decided -- at least for now -- to dissolve the group. Members have been advised to attend our monthly meetings of the Northern Virginia CFS Support Group.


Home        Email Us         Subscribe         Search        Sitemap
Updated February 25, 2007