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Table of Contents

• Sign the "Patient's Bill of Rights"
• Dallas Ampligen Trials
• April 27th - Come to Austin for Texas Resolution!
• Awareness Project - Pillow Case Banner
• Awareness Project - Impact Book 
• Media Wars and Government Assistance
• Old Bug, New Tricks? - Mycoplasma
• Al Franken, author of "Why Not Me?"
• Wall Street Journal - Chronic Disability Payments
• American Journal of Medicine Focuses on CFS
• A Reasoned Approach to Fighting Fatigue

If you live in or near Austin (or know someone who does) please come join us and be recognized. Before the session starts at 10:00 am, all those committed to this resolution will gather on the House Floor to have their picture taken with Representative Todd Smith. After the session starts the resolution will be read on the floor by the Chief Clerk and upon passage will be signed into the Legislative Record by the Speaker. All individuals and groups who are present will be named and recognized from the House Floor by Representative Smith.

His staff would like a list of names of those planning to attend, since they will be recognized from the floor, unless they choose not to be. Please contact Carol Sieverling if you are planning on attending.

An exciting sidelight is that Harris Methodist HEB Hospital, the sponsor of our support group (The CFS/FM Support Group of Dallas/Ft. Worth), is flying their Director of Community Relations and myself to Austin on the 26th and paying for our hotel rooms so that we can be present for this resolution that we requested! This is the same hospital that is paying for Dr. Cheney's hotel room when he comes to do his seminar on May 15th. Support from the medical establishment is rare here and to be celebrated.

Last evening, CFIDS advocates Roger Burns and Tom Hennessy attended a Washington, DC book signing event with Al Franken, author of "Why Not Me?" As you may recall from the CPR Team Alert on January 14th, Mr. Franken made jokes about CFIDS on Late Night with David Letterman and the Today Show.

It appears Mr. Franken has heard our protest letters. Following is Roger's account of their encounter with him last night.

Good job, CPR Team members! Thanks for your help re-educating Al Franken about the seriousness of CFIDS, and the inappropriateness of making fun of a disabling illness.

Vicki Walker
Public Policy & Youth Outreach Coordinator
The CFIDS Association of America

Subject: ACT: Al Franken says CFS is serious and real
Date: Thu, 21 Jan 1999 22:38:12 -0500
From: Roger Burns 
To: CO-CURE 

Author Al Franken appeared at a book-signing event this evening in Washington, DC and he said that he recognizes that CFS is a serious illness and that he is going to be much more careful about how he characterizes the disease in the future.

At tonight's book event, Franken was approached by CFIDS/M.E. leader Tom Hennessy and CFS-NEWS publisher Roger Burns about his comments made on recent TV shows that derided CFS. The author said that the impression that many people had of his televised comments do not reflect his current understanding of the illness, which he is learning much more about. He has received numerous letters and e-mails on this subject, and he is preparing responses for all of them. During his presentation about his new book, which mentions CFS, Franken said that CFS is "real".

Al Franken is a comedy writer whose new book "Why Not Me?" is a fictionalized account of himself getting elected as President of the U.S. in the year 2000. In the book, President Franken falls into depression and biploar disorder on his second day in office. His staff does not want this revealed to the public, so they issue a cover story which says that President Franken is suffering from Chronic Fatigue Syndrome.

Franken's real-life comments on television have generated much more controversy among CFS patients than what appears in his book. On NBC's "Today" show he has been quoted as saying "... chronic fatigue syndrome, which as we all know is depression." CFS-NEWS publisher Roger Burns has the impression that Franken will be going far out of his way to avoid such comments in the future, and that he is learning much about the seriousness of this illness.

-- Roger Burns

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: http://www.cfids.org General E-mail: cfids@cfids.org

The Wall Street Journal published a scathing opinion piece about Chronic Fatigue Syndrome by its editorial staff on 12/28/98. The editorial attacked the legitimacy of CFS, using an expected Social Security ruling as the focus of its assault.

The text of the article is attached. Although it will be difficult, please try to respond politely. One of the WSJ's points is that CFS patients respond "hysterically" to criticisms of the legitimacy of the illness. Although articles like this make us irate (and incredulous that this is still happening in 1998), it's important not to fuel to this fire.

Here's what we always do: first we write a "poison pen" letter to get the vile feelings out of our systems and onto paper. Then we walk away for a few minutes, gather our thoughts, and come back to try to find a constructive (but still critical) approach. Although we can't send you our first draft (it isn't fit for public distribution), we've included the letter we sent to the Wall Street Journal following the article's text. Use it as a guide, but make sure to personalize your response. Feel free to take issue with any of the many fallacies in this editorial, but stick to refuting the facts.

Here are the basics:

• Write to the address (postal or e-mail) noted above.
• Use the enclosed letter as a guide, but personalize your response.
• Include information indicating that chronic fatigue syndrome or CFIDS is a serious illness.
• Assure them that you will monitor the situation through The CFIDS Association of America and that you look forward to a timely resolution of this matter.
• Please send a copy of your letter to The CFIDS Association of America so we can track response to this campaign.

Be brief. Again, we could really write quite a bit, but the WSJ's editors don't have time to read it all. So, don't give them the opportunity to put our letters aside because they're too long to read. Keep it short. They're the ones that are most likely to be read - and published.

Thank you for your efforts to educate others about CFIDS. With your help, one letter becomes many and the truth about CFIDS reaches one more person who can make a difference.

The campaign to legitimize the status of the mystery ailment known as chronic fatigue syndrome may soon be bearing fruit - a kind likely to line the pockets of lawyers and the physicians now specializing in the treatment and diagnosis of CFS. A large segment of the medical community remains highly skeptical, to put it mildly, about the now rampant diagnoses of CFS. Still, as similar debates in so many other arenas of our national life have shown, including the one involving breast implants, science and skepticism don't count for much against a focused chorus of determined activists portraying themselves as victims of apathy, official deceit or some other government or corporate plot.

The advocates working on behalf of the Chronic Fatigue establishment of course have different complaints, most of them linked to problems obtaining disability benefits. That may soon change in a big and very expensive way. The Social Security Administration is now busy developing new policy guidelines that would make it much easier for people claiming to suffer from chronic fatigue to qualify for disability benefits.

A specialist within the Social Security Administration tells us that the Chronic Fatigue activists now attempting to establish the syndrome as a federal compensatory disability are a highly talented lobby - vocal, adamant, many of them well-educated. If the activists are any measure, this source says, "there is a very strong obsessive component to this disorder." Obsessive or otherwise, the lobbying campaign to win federal payments seems to be working.

There can be no doubt that some real disorder affects people suffering from what's known as Chronic Fatigue Syndrome. The question is what. The struggle between the cadres out agitating for official recognition of their ailment and the medical skeptics has run on for some time. Many physicians believe that psychiatric causes play a primary role in chronic fatigue. The advocates demanding enshrinement of CFS as a neurological disease, on the other hand, adamantly refuse to tolerate the suggestion that their affliction could have other than physical causes.

Dr. Thomas Bohr of the Department of Neurology at the Loma Linda University School of Medicine cites in Neurology magazine descriptions of the chaos that ensues when activists weigh in at Chronic Fatigue meetings held at the Centers for Disease Control. As one of the doctor's sources describes matters, at these meetings "travesty has replaced science."

Advice on how to press for recognition - and benefits - for Chronic Fatigue is not hard to come by. CFS organizations dispense lists of doctors who specialize in diagnosing the disorder, and whose help is, of course, important in the effort to obtain benefits. The newsletter for Chronic Fatigue Syndrome includes a section titled "Senate lobbying made easy!" and urges readers to make their voices heard because, as the instruction puts it, "we need to 'roar'."

Some Chronic Fatigue activists seemed to have taken this injunction literally when they took off after Princeton Professor Elaine Showalter, author of "Hystories: Hysterical Epidemics and Modern Media." Professor Showalter, it appears, had committed the unforgivable offense of suggesting that Chronic Fatigue was one of a number of contemporary epidemics, whose root cause was psychological - mainly depression - notwithstanding advocates' efforts to ascribe the symptoms to a mystery virus or other physical cause. Energized quarters of the Chronic Fatigue Syndrome community in turn responded by sending death threats and demanding to know what the author would say to people who denied the Holocaust had taken place.

Extremism of this kind of course doesn't speak for everyone involved in a cause, but it does tell us something about the deranged sense of victimization that now characterizes so much organized justice-seeking in our time. In the case of the Chronic Fatigue Syndrome lobby, as one medical skeptic refers to it, justice means disability payments. High-pressure lobbying has steamrollered much policy under the banner of justice in our time, but something more than mere justice is at stake here. If the Social Security Administration is preparing to pour out billions of dollars for this problem, it deserves a much broader hearing and debate.

December 28, 1998

Letters to the Editor
Wall Street Journal
World Financial Center
200 Liberty St.
New York, NY 10281

Re: "Chronic Disability Payments," 12/23/98

Dear Editor,

In the Wall Street Journal's December 23, 1998 editorial "Chronic disability payments," the Journal implies that the forthcoming Social Security ruling on Chronic Fatigue Syndrome (CFS) will open the floodgates for undeserving Americans to get federal disability payments. Nothing could be further from the truth.

The new ruling merely clarifies SSA policy as it applies to persons disabled by CFS. Claimants will still undergo a rigorous evaluation in which they must objectively prove that they are unable to do any type of work.

Despite its trivializing name, which focuses on only one of its many severe symptoms, CFS is not just fatigue, and it's not psychiatric illness either. Rather, top researchers have found defects in the endocrine, immune and central nervous systems, blood pressure control mechanisms and in many other body systems of CFS patients. The sources cited in your editorial (an English literature professor and a physician without a single paper indexed in Medline) appear to ignore the growing body of peer-reviewed studies about this serious and challenging disorder that CDC estimates affects at least 500,000 Americans.

Only high-quality medical research will determine the cause of and effective treatments for CFS. Until that time, programs like Social Security provide a critical safety net which allows the disabled to feed, shelter and clothe themselves and their families.

If Wall Street Journal readers seek credible, factual information about CFS, I invite them to contact The CFIDS Association of America at 800/442-3437.

Sincerely,

Vicki Carpman Walker
Public Policy and Youth Outreach Coordinator

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: www.cfids.org; General E-mail: cfids@cfids.org.

The Worldwide Electronic CFIDS/ME Action Network (WECAN, Inc.) is sponsoring an awareness project that we hope will bring together people from all over the world with CFIDS/ME/FMS and MCS. Many of us have been diagnosed with more than one of these illnesses, so all are included.

We are creating a banner made from 1/2 sections of pillow cases, (standard size 28 X 20 inches). Each piece should be hemmed 1/2 inch all the way around (this can be done by volunteers for those unable to do it) and embroidered, appliqued or marked somehow with your name or initials, state/country, and date of onset. If you wish, you can also add the initials of the illness(es) you've been diagnosed with.

For those who are unable to embroider, there are several non-toxic glues available: Designers Tacky Glue by Aleene, Sobo and regular Elmers glue (not the childrens school glue or yellow for wood). Fabric, ribbons, buttons etc. can be stitched on or glued on to decorate your piece. Please use stitching or non-toxic glues or fabric paints to ensure that this project will be accessable to all our members and visitors, including those with MCS.

The banner will be divided into sections by country and state with a piece appliqued with the shape of state or country beginning each section. The banner pieces will be sewn together by volunteers.

There are pillowcases, rickrack and ribbons and being donated and volunteers to put your name and information on a case for you should you be unable to do it yourself. Please contact me at willow@azstarnet.com should you need a donation.

The banner will be displayed during the May 12 rally and the CAA Lobby days.

Send your information and/or pillowcases to the addresses below. If your state or country isn't listed, please send it to the nearest person to you.

[California, Oregon, Washington, and Idaho]
Sandra Grier, 1201 W. Gage Ave., Fullerton, CA 92833-4731

[Arizona, Nevada, Utah, New Mexico & Colorado]
Paula Frighetti, 7133 E. 28th St., Tucson, AZ 85710

[South Carolina, North Carolina, Florida, Mississippi, Alabama, Georgia and Tennessee]
AnnLea Mullins, 1090 Melvin Hill Road, Campobello, South Carolina 29322

[Michigan, Wisconsin, Illinois, Indiana, Ohio and Ontario, Canada]
Mrs. Lorraine Beavon, 2068 Hickory Leaf Dr., Rochester Hills, MI 48309

One of the experts that Brody cites in support of her general views on CFS is literature professor Elaine Showalter. The literature professor was also cited as an expert in an editorial in the Wall Street Journal (Dec. 23) which opined that those who are disabled by CFS might possibly receive subsistence payments. CFS patients were described in the Journal as having a "deranged sense of victimization". Those who lobby for benefit payments for the disabled who merit them were characterized as though they were some kind of illicit gang attempting to avoid working for a living, wishing instead to live off of the public dole at the expense of ordinairy taxpayers who have the decency to work for a living.

In support of this view, the expertise of an anonymous government official was described in the Journal as follows:

A specialist within the Social Security Administration tells us that the Chronic Fatigue activists now attempting to establish the syndrome as a federal compensatory disability are a highly talented lobby -- vocal, adamant, many of them well-educated. If the activists are any measure, this source says, "there is a very strong obsessive component to this disorder." Obsessive or otherwise, the lobbying campaign to win federal payments support seems to be working.

The Journal and the Times have been answered weeks ago with many well-written letters. However, the U.S. Social Security Administration has not disavowed the disparaging view of CFS patients that their own representative fed to the Journal. Since this matter has not been looked into, couldn't this anonymous government offiical do this again?

I have sent a letter, copied below, which asks for this problem to be investigated and action taken. However, a single letter might not have much effect. Those who are concerned should please follow up with additional letters of support.

Kenneth S. Apfel, Commissioner of Social Security
Social Security Administration
Room 900, Altmeyer Bldg
6401 Security Blvd
Baltimore, MD 21235

Dear Commissioner Apfel:

I am greatly concerned that the prestige and the authority of your agency have been used in an unjustified public attack upon disabled U.S. citizens. A Wall Street Journal editorial of Dec, 23, 1998 (page A14) cites an anonymous staff member of SSA who insinuates that people who have chronic fatigue syndrome (CFS) are no more than emotionally disturbed, a claim which supports the Journal's argument that CFS is neither serious nor disabling, and that its victims are not worthy of respect. In contrast, scientists at the National Institutes of Health describe CFS as a "severe debilitating illness".

Your agency's representative, as quoted in the Wall Street Journal, has publicly helped to reinforce outdated prejudices and to undermine the arduous efforts of many who are trying to bring current scientific knowledge about CFS to the general public and to practicing clinicians. (Regarding state-of-the-art scientific knowledge about CFS, see the American Journal of Medicine, 1998 Sep 28, Vol. 105, supplement 3A.)

My complaint to you about this matter is belated because I had believed that the Wall Street Journal matter was a one-time event that had a fairly limited impact. However, similar attacks have recently appeared in other major news media. And so unless this matter regarding your agency is corrected, for all we know your representative will contribute to unwarranted attacks in the future.

Do the prejudicial and unscientific claims made by your representative genuinely reflect the views of your agency? If not, will you take firm and clear action to insure that the authority of your agency will not be used again in such a manner? Please describe what action you will take.

If you do look into this matter, I suggest that you contact the two SSA staff members who have had the most dealings with the issue of CFS, Barry Eigen and Karen Ezrine. These officials would likely be the best place to start trying to find where this problem may have originated.

I look forward to reading your reply.

Sincerely,

Roger Burns
Publisher, CFS-NEWS

This information compliments of the CFS News.

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