CFS and FMS Support Group of DFW

Bulletin Board
AACFS Conference	Budget	Non-Profit Status
Sources for Supplements and Vitamins	Business Cards	Safety of Hydrocortisone for CFS Patients
Midodrine Can Help Patients With Orthostatic Hypotension	Drug Trial for CFIDS at Dallas Research Center	WARNING: FDA Reports Contamination in 5HTP
New Epstein-Barr Test Kit Available	Whoops! It Wasn't CFIDS After All!	We Made the CFIDS Chronicle Again!
US Surgeon General Orders CFS Briefing	Make A Difference: Join C-ACT and/or CPR	Subscribe to the CFIDS Chronicle
Subscribe to the "Fibromyalgia Network"	We Need More Doctor and Lawyer Referrals	Essays and Poetry Wanted For CFIDS Anthology
CFIDS Featured on Oprah	Diane Rehm Features CFIDS	Low Blood Volume in CFIDS Patients
CDC Misuse of Funds	New Support Group in Garland	CFIDS/FMS Research
You Can Be Part of Our Website!	Meeting Information

Help! We're Drowning in Red Ink!

We are currently $180 in the hole. Unlike most support groups we have no membership fees. We prefer to let people contribute as their means allows. We hope some of your means will allow!

We have sent out over 100 information packets this year, and copying the information plus postage costs an average of $5.00 per person. (The articles we include vary according to the individual's symptoms and needs.) This information is extremely important, especially to those who have had little or no access to such information, and is part of the educational mission of this group.

Many express great gratitude, and some send a check back in the mail. We also frequently need to make long-distance calls to those who leave messages requesting information or help, so phone charges are part of the expenses not to mention supplies (envelopes, staples, tape, etc.).

Please help our group carry out its educational work. You can make send donations to the address below. Please make checks and money orders out to:

CFIDS and FMS Support Group
c/o Carol Sieverling
513 Janann Street
Euless, Texas 76039

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Money Needed for Business Cards:

We have designed business cards for our group that will list our name and three contact people on the front (one for each metroplex area code), and have an extensive definition of CFIDS and FMS and information about our group on the back. (To learn the specific wording on the back, come to a meeting or call Carol Sieverling at 817 283-1115.)

Several businesses and medical professionals have asked for and would display such a business card. Members would be given the business cards at meetings to distribute to friends, doctors, etc. We can get 1000 cards for just under $50.

We won't pursue this unless the money comes in, indicating your interest. If you are interested, please write "business cards" in the memo area of your check.

Please make checks and money orders out to:

CFIDS and FMS Support Group
c/o Carol Sieverling
513 Janann Street
Euless, Texas 76039

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Non-Profit 501 (c) 3 Status

We have two members working on obtaining 501 (c) 3 status for our group. Becoming an official non-profit organization would have many benefits. Contributions would be tax deductible, which could increase our donations. We would save money since we would no longer pay tax on copying, supplies, etc.

Most importantly, we would become eligible for grants and other benefits. We could obtain computer equipment for the disabled, grants for special projects such as hosting a national speaker, etc.

However, a great deal of paper work is involved, as well as a $150 filing fee. Again, we will pursue this only if the money comes in indicating your interest. Please write "501 (c) 3" in the memo area of any donation.

Please make checks and money orders out to:

CFIDS and FMS Support Group
c/o Carol Sieverling
513 Janann Street
Euless, Texas 76039

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Douglas Lab's 50% Discount Cancelled

The arrangement we had with Dr. Goodman's sale representative to order on his account at a 50% savings has regrettably fallen through. It worked for about two-and-a-half months. When all the Texas invoices on the account of a North Carolina doctor came to the attention of those higher up, it was determined that this violated the company's policy of selling only to medical professionals.

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Safety of Hydrocortisone for CFS Patients

Researchers at the U.S. NIH have announced that low-dose hydrocortisone treatment has shown promise but is probably not viable in a clinical setting due to the significant adrenal suppression it causes. Check the links below for more information.

Journal of the American Medical Association

Research Summary

SAFETY OF HYDROCORTISONE
AS CFS TREATMENT QUESTIONED

CNN Story

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Midodrine Can Help Patients With
Orthostatic Hypotension

ROCHESTER, MN -- Sept. 16, 1998 -- Mayo Clinic researchers have determined that the drug midodrine can safely raise the blood pressure of patients suffering from neurogenic orthostatic hypotension and can help them to lead a more normal life.

Mayo Clinic Press Release
(Link is not active)

Doctor's Guide Information

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You Can Be Part of Our Website

All members of our support group can be part of this website. Since so many of our members cannot get to meetings on a regular basis, this is a wonderful opportunity to combat isolation by learning about others in the group and even contacting them by email.

The Meet Our Members section needs your input. Please send a paragraph about yourself that includes whatever information you are comfortable having posted on the internet to Deborah or snail mail at the address below:

Deborah Slaton
8249 April Lane
Watauga, Texas 76148

Suggestions include your name, gender, marital status, age, address, telephone, profession (current and/or before illness) interests/hobbies, personal story, unique symptoms and/or treatments. If you have an email address, personal web page address, or internet nickname, please include this information also. You can even send her a picture of yourself to be scanned in!

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New Support Group in Garland

Kelly Miller, who has been ill with CFIDS for eight years, is starting a CFIDS support group that will meet in her home, for now. Their first meeting was October 5th. They will continue to meet on the first Monday night of each month at 7:00 p.m. We are thrilled that there is a new support group in the area and encourage those of you who live in or near northeast Dallas to give Kelly a call at 972 240-6439.

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Drug Trial for CFIDS at Dallas Research Center

Metroplex Clinical Research Center is one of many sites in the United States conducting a 16 week study of an investigational drug for use in CFIDS to improve sleep, pain, energy, and cognition. This drug is in Stage III trials seeking FDA approval.
If you are between 18 and 65 and have been ill for seven years or less, you may qualify for this study. Patients will be divided into five groups: four taking different dosages and one receiving a placebo. You, therefore, have an 80% chance of receiving the drug.

Patients may drop out of the study at any time. There is an honorarium for participation. If you are interested, contact the patient recruiters at 214 879-8502.

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WARNING: FDA Reports Contamination in 5HTP

In September the FDA reported that 6 brands (not named) of 5HTP (5-hydroxy-L-tryptophan) were contaminated. In 1989 5HTP led to an outbreak of an illness called EMS (Eosinophilia-Myalgia Syndrome). 1500 people became ill and 38 died. No illnesses have been reported in conjuction with this newest contamination. For more information call 1-800-532-4440. (We believe this is an FDA consumer inquiry line.)

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NEW Epstein-Barr Test Kit Available

Beginning September 1st, Gull Laboratories began supplying Quest Diagnostics' new test kit for Epstein-Barr. The new test is capable of detecting whether the virus is in the acute, convalescent or reactivated stage. Please note that EBV (mono) is associated with only some cases of CFIDS. The mechanisms that keep viruses dormant or latent are impaired in CFIDS, EBV, CMV, HHV-6 and other viruses commonly reactivated in CFIDS patients, but this is a symptom or side effect of the illness, not its cause.

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Whoops! It Wasn't CFIDS After All!

While the majority of CFIDS cases are correctly diagnosed, occasionally someone is misdiagnosed. Two journal articles recently reported such misdiagnoses, and they are worth knowing about. A 21-year-old woman was treated for CFIDS for three years. She met the CDC criteria and had lgG antibodies to the Epstein-Barr virus. She had symptoms of lethargy, myalgia, poor concentration, irritability, and fainting. Then a doctor noticed that she had low levels of ferritin but normal levels of hemoglobin, which suggested screening for celiac disease. The test was positive.

In celiac disease the lining of the small intestine reacts badly to gluten, a protein in wheat and other grains. Symptoms include abnormal pain and swelling, diarrhea, fatty stools, weight loss and lack of energy.

The young woman was placed on a gluten-free diet and experienced a dramatic improvement in her symptoms. Within two months her level of functioning went from 20% to 90%. The article's author suggests that celiac disease be considered the diagnosis of CFIDS, especially in those patients with diarrhea.

Another journal reports three cases of dermatomyositis were erroneously diagnosed as CFIDS due to elevated titers of Epstein-Barr antibodies. Dermatomyositis is a connective tissue disease characterized by swelling and inflammation of muscle tissue and skin.

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We Made the "CFIDS Chronicle" Again!

Our group's efforts for May Awareness Month for CFS/FMS/GWS have been written up twice now in the "CFIDS Chronicle". We are on page 32 in the July/August issue, and on page 31 in the September/October issue, complete with a picture of our information table at North East mall.

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US Surgeon General Orders CFS Briefing

Dr. David Satcher, US Surgeon General has asked representatives from the Department of Health and Human Services and the Social Security Administration to participate in a private "state of the science" about CFS. A date has not been set. In a letter to the CFIDS Association of America he stated that he was very concerned about CFS issues, which he recognizes as being very complex. To assure that he has the most current scientific and policy information, he has requested a briefing from "representatives of the respective agencies within the Department of Health and Human Services on their activities pertaining to CFS, as well as the status of the applicable science."

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Make A Difference: Join C-Act and/or CPR

C-ACT stands for CFIDS Activists. C-Act members receive advocacy alerts by email and, less frequently, regular mail. They are informed of pending legislation or some other action and given the names and addresses of the particular government officials to whom they should write. Check out their web page.

CPR stands for CFIDS Public Relations team and its members are sent alerts about media coverage of CFIDS. The story or article is reprinted or summarized and a sample letter of thanks or a request for further, more appropriate coverage is included, along with the name and address.

To join all you have to do is send an e-mail message to C-ACTMembership@cfids.org with your name, mailing address and e-mail address. If you're signed up for the e-mail list, you get CPR Team alerts, too.

To join regular mailing list contact the address below. If you're signed up for the regular mailing list, you will have to ask to be placed on both lists.
The CFIDS Association
P.O. Box 220398
Charlotte, N.C. 28222-0398

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Subscribe to the CFIDS Chronicle

The "CFIDS Chronicle" is published six times a year by the CFIDS Association of America. It is the most current, complete, and credible source of information about CFIDS. Articles are reprinted in CFIDS/ME publications worldwide, cementing its position as the world's leading CFIDS publication. The six issues cost $35, though courtesy subscriptions are available to those suffering extreme financial hardship. Just send a brief letter documenting your need, if that is the case. If you are paying by credit card call 704-365-2343 or fax 704-365-9755 or send to:

The CFIDS Association

P.O. Box 220398

Charlotte, N.C. 28222-0398

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Subscribe to the "Fibromyalgia Network"

The Fibromyalgia Network publishes an outstanding quarterly newsletter that provides patients and health care providers with the latest information on FMS and CFIDS. It is only $19 for four issues. Call 1-800-853-2929 to subscribe.

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Doctor and Lawyer Referral List

We maintain a list of medical professionals who are helpful in treating CFIDS/FMS complied by membes. It is a great resource for members who are seeking medical help. The list is not that extensive, especially for the Dallas area.

Please contact Carol Sieverling (513 Janann Euless, Texas 76039 817 283-1115) with the name, address, phone number of any doctor, chiropractor, massage therapist, kinesiologist, naturopath, nutritionist, physical therapist, etc. that has been of real benefit to you.

Please also include information on psychologists,
psychiatrists, and lawyers.

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Essays and Poetry Wanted for CFIDS Anthology

A published and award winning poet and fiction writer who is on disability for CFIDS is editing a book entitled STRICKEN: Writings from a Hidden Epidemic. She is seeking essays, poems and cartoons of a serious, humorous, or satiric nature that will present CFIDS to a general audience and tackle the political and social issues that keep patients from receiving proper health care. For more information contact Carol Sieverling by email or phone 817 283-1115.

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NPR's "The Diane Rehm Show" features CFIDS

On July 13, 1998 Diane Rehm did a show on CFIDS. The "Diane Rehm Show, " featured on U.S. National Public Radio, is heard by hundreds of thousands of people in the USA and it is listened to by many government decision-makers in Washington, DC, where the broadcast originates.

Her guests included Dr. Stephen Strauss of the NIH, Dr. William Reeves of the CDC, Dr. Paul Levine of George Washington University, Dr. Marsha Wallade and two patients. A transcript can be found on the internet at this address (Link is no longer active). A cassette tape of the show can also be ordered by calling 202-885-1200, pressing "0", and requesting the July 13th show on CFIDS.

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Oprah does a show that includes CFIDS

On July 29, 1998 Oprah did a show on difficult to diagnose illnesses, including CFIDS. It featured Wilhelmina Jenkins and her daughter Kamilah from Atlanta. Fifteen years ago Wilhemina was a physicist at Howard University when CFIDS struck, leaving her disabled. Ironically, it was the psychiatrist she saw for major depression that diagnosed her with CFIDS!

Kamilah became ill seven years ago when she was 14. With the help of professors who allowed more time for tests and papers, Kamilah graduated summa cum laude and has begun work on her master's in social work.

Neither has a clear memory of what they said on the show, though both were wonderful representatives for us. After the taping, they attempted a bus tour of Chicago, but had to cut it short when Kamilah was overwhelmed by nausea and a drop in blood pressure and Wilhelmina became dysfunctional with pain and weakness.

Back home, with several weeks until the airing of the show, doubts set in. They joked about changing the answering machine message to "Wilhelmina and Kamilah are hiding out from calls about the Oprah Show. Please press 1 if we left out your most disabling symptom. Press 2 if you think we were too cheerful. Press 3 if we did not mention your foolproof cure . . ."

As Marc Iverson said, "we saw our illness treated with respect and compassion on one of the most respected and watched programs on television. The impact of that show will be subtle but powerful. When someone wonders about your illness, you can ask if they saw the Oprah show about it. That's instant respect."

A transcript can be obtained by calling 1-800-777-8398 and requesting the July 29th show. It was an excellent but brief portrayal of CFIDS, though the list of symptoms (presumably compiled by Oprah's staff?) left something to be desired.

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Low Blood Volume Discovered in CFIDS Patients

Do you have difficulty giving blood? Perhaps the following study is part of the answer. Dr. David Bell and Dr. David Streeton measured the total circulating blood volume of 19 CFIDS patients. Everyone was below normal, some dramatically so, one having a 50% reduction

A healthy person who loses 25% of his/her blood in an accident goes into shock. Healthy people cannot survive a sudden 40% loss of total blood.

This study was published in the Journal of Chronic Fatigue Syndrome 1998:4(1):3-11. This may mean that many of us are coping with two different circulatory problems at once: neurally mediated hypotension where the body can't adjust to postural changes and the blood pools in our legs and doesn't get to our heads, and hypovolemia where we have too little circulating blood. One is a problem of location, one problem of amount, and of course they interact.

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CFIDS/FMS Research

Research has exploded in the last year. Suhadolnik's discovery of the low-weight RNase-L enzyme in CFIDS patients has been expanded and replicated and a test is now available. Dr. Rowe's research into the link between NMH and CFIDS continues. Ampligen is moving into Phase III trials. Nicholson's mycoplasma research holds forth hope for a subset of patients. Dunstan and Roberts in Australia are researching a possible biological marker found in urine, Demitrack and Straus are studying the hypothalmic-pituitary-adrenal axis dysfunction, including cortisol abnormalities. Komaroff and Ablashi are researching the possible roles of HHV-6 and EBV. Klimas and Levy are investigating immunological abnormalities. Lerner has found viral-induced myocarditis in 100% of patients he studied. Bell and Streeten found low circulating blood volume. Bradley found abnormal levels of substance P in FMS patients. Low-dose alpha interferon is in Phase III trials for FMS. Martin's investigations into a stealth virus are progressing. Cheney, Lapp, Goldstein, and St. Armand continue to study various treatments.

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November 17 Meeting: Dave Lovelace will show us how "Laughter is the Best Medicine". Dave Lovelace founded this group eleven years ago when he was disabled with CFIDS, leaving a significant position in a

major company. Dave is a man of great charisma, intelligence and wit.

He will lead a unique meeting that allows us to acknowledge the

difficulties of living with CFIDS/FM, but in a manner lifted with laughter and optimism. Come and find out what he can do with sacks full of hats. Hear his famous story, "The Chicken Fried Steak Disease." And don't miss his discussion of what events would be part of a CFIDS/FM Olympics. Don't miss this opportunity to meet the man who started this group and has given so much to it. Come be part of an evening that will send you home laughing and knowing that you are not alone in living with this illness. (Some may recall that Dr. Ken Cooper was originally scheduled to speak on physical therapy and nutrition. With great regret he had to cancel due to a health crisis in his family.)

December 15 Meeting: This is our annual Planning Meeting and we will be choosing topics and speakers for next year. Please join us for this very important meeting. If you have suggestions for speakers or topics,

please share them. A great many possibilities are mentioned, and it helps to have as many people as possible there to help determine which topics are of the most interest. If you can't make it to the meeting but know of someone who would be a potential speaker, please contact Carol Sieverling at email or call 817 283-1115.

Tapes of Meetings Available: If you cannot get to a meeting but would like a tape of the presentation contact Carol Sieverling. Meetings that have a discussion format will not be taped due to technical

limitations. January's enzyme therapy presentation by Susan Shafto and February's presentation and guided meditation by Dr. Nancy Didriksen are available on audio cassette. The video tape of Dr. Myra Preston's slide presentation is available, however much of the info on the slides is not readable. Because her presentation was an excellent general overview of CFIDS as well as an introduction to the cognitive abnormalities of this illness, and because her presentation had so much information packed into it that it is hard for CFS brains to process it in the video format, Carol intends to transcribe her presentation and perhaps include hard copies of most of the slides. We will let you know when that's available.

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