or contact

National ME/FM Action Network

Tel: (613) 829-6667

AACFS medical conference

Approximate date: early 2001

Location: Seattle

details are pending

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An article in last November's Wall Street Journal reported on the deep controversies surrounding spinal surgery for CFS, including claims by many patients of substantial or complete relief of their symptoms, claims by others that the expensive surgery failed, charges by doctors of bad medicine, lawsuits, and a surgeon who offers the treatment being forced to leave his university faculty.

A more recent report by America's ABC News was more upbeat, not mentioning the controversies, although cautious advice on how to proceed.

The Wall Street Journal article appeared on the front page of its edition of Thursday, Nov. 11, 1999. It recounted many cases of dramatic improvement, including that of physician Sam Banner who had lost his practice do to debilitating symptoms diagnosed as fibromyalgia.

However, other patients did not benefit from the surgery, whose cost is about $30,000 per case according to the Journal. Dr. Daniel Clauw, a rheumatologist in Washington, DC, is quoted as saying that only an "extremely low percentage" of chronic-fatigue and fibromyalgia cases are suitable for such surgery. Other doctors are reported as saying that "some operations were unnecessary and unhelpful." Dr. D. Bruce Woodham wrote "These patients are desperate people, eager to obtain any sort of relief that might be offered them ... They, I feel, are easy prey to someone who offers them a quick fix for a problem that does not have a quick fix."

Dr. Michael Rosner, a recognized pioneer of surgical techniques, was apparently forced off of the University of Alabama faculty for doing this kind of surgery in cases where, in the view of Rosner's peers, it may not have been called for. And yet some of his former university colleagues published an abstract of work that, Rosner claims, sought credit for his ideas on surgery as applied to fibromyalgia.

Several patients have filed lawsuits regarding the surgery they had received, some claiming they are now worse than before. Among those cases reported in the Journal article, most were settled out of court, and no court judgments were made against any of the doctors involved.

The ABC News report broadcast on March 10 focused on the positive results of the surgery. Nonetheless, their medical advisor cautioned that the surgery only be considered "for patients with abnormal neurological exams and abnormal findings on MRI", and that the procedure "must definitely be considered experimental. It is too early to tell how long results will last and which patients might most benefit."

[Thanks to Chip Davis for assistance with this report.]

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4. News on Politics, Media, etc.

The following are brief summaries of CFS news in politics and the

media.

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European Alliance -- Representatives of the European M.E.

Associations Alliance (EMAA) met with the European Commission shortly after the Brussels medical conference last September. The European Commission is being asked to promote M.E. awareness and to formally recognize the Alliance. The process is expected to take more than a year.

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Belgium recognizing CFS -- According to an article in De Standaard on Oct. 18, 1999, Belgium's Vice-Premier Johan Vande Lanotte and Minister for Social Services Frank Vandenbroucke have stated that CFS is a "serious problem", and that they will clear the way for the official recognition of CFS as a chronic disease. Minister Vandenbroucke further stated "I want to recognize and finance a few reference centres for patients with CFS within the upcoming year. In these centres, medical teams will specialise in CFS, improve medical expertise and support general practitioners." The statements by the government officials followed a demonstration by CFS advocates in the town of Oostende, led by patient Francine Devriendt.

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Nevada "Think Tank" -- A CFS medical conference was held on March 16-18 in Reno, Nevada. The "Think Tank" event had two focuses: basic science, and rehabilitation. Some of the leaders involved were Dr. Nancy Klimas, Dr. Paul Levine, and Gloria Furst of the NIH Clinical Center. The event was aimed at doctors and patients, and was organized by a Nevada group similar to that which funded the 1998 special edition of the American Journal of Medicine that focused on CFS. Another "Think Tank" event is being planned for later this year. An overview report on the first event is being prepared by the organizers and will be released in the future, and a full report will be submitted to medical journals for publication.

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The National Institutes of Health (NIH) conducted an "internal consultation on CFS" on Feb. 6-7. The event was titled "State of the Science". The NIH staff who planned the meeting were mostly satisfied with its outcome, but patient leaders who attended had mixed responses about the results.

The design of the conference evolved in a checkered manner. The U.S. CFS Coordinating Committee (CFSCC) had been developing a plan to hold a well-rounded "State of the Science" conference on CFS. Over time the plan was modified and eventually evolved into an "NIH internal consultation" aimed at inspiring various NIH staff to take an interest in CFS research, and to be conducted mostly with non-CFS experts, although the event retained its original title.

Patient leaders, including representatives on the U.S. CFSCC, expressed deep concern that the announced design of the NIH conference placed an over-emphasis on psychiatric viewpoints. The conference was modified in minor ways to accommodate some concerns from the patient community. The CFSCC is now proceeding to develop

it own "state of the science" conference in accordance with its original plan. This conference may take place in November.

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There have been two meetings of the CFSCC since this newsletter has last reported on them. Here are summaries of both meetings.

Nov. 2, 1999

NIH reported on their upcoming survey that will develop an evidence-based medicine resource for CFS. "Evidence-based medicine" involves making a thorough analysis of a medical topic based on what has appeared in the scientific literature. Dr. Nancy Klimas, member of the CFSCC, expressed concern about the likely literature bias of such a survey.

Dr. Arthur Lawrence of the Surgeon-General's office discussed the plan proposed at last April's CFSCC meeting for changing the name of the illness. He commented that the suggested completion date of Sept. 2000 may be too soon, and there will probably be only one

opportunity to make a name change, therefore the new name must be acceptable to the scientific community, otherwise we'll be worse off than before. The Surgeon-General's office wants to see the change of name achieved by conducting a regular review of scientific progress in order to proceed with a new name at soon as that may be feasible. The Coordinating Committee formed a subcommittee on the name change to include Dr. Art Lawrence, and Coordinating Committee members Kim Kenney (CFIDS Association of America) and Dr. Nancy Klimas. Those three were empowered to assemble a broader subcommittee.

The meeting was briefly attended by the U.S. Surgeon-General Dr. David Satcher who stated that although it is not yet known what causes CFS, the illness is nonetheless serious and debilitating.

Committee member Jon Sterling commented that the CDC financial scandal was by no means over. and that while there was an apology from the agency's Director, it was an apology for an "accounting error", and that description is an insult to the CFS community. CDC representative Joe McDade said that CDC does not consider the problem to have been just an accounting error and that they were taking it very seriously.

During the public input segment, Jill McLaughlin of the National CFIDS Foundation stated that her organization was very encouraged by the Oct. 13 meeting with the CDC, which exceeded their expectations.

Feb. 8, 2000

Five of the non-government members of the Coordinating Committee joined together to present a list of demands to Surgeon-General David Satcher. Kim Kenney, president of the CFIDS Association, preceding her presentation of the demands by saying that CFS leaders have met with great resistance, have been lied to, treated with hostility, and the CFS Coordinating Committee is viewed by patients as being pointless. The administration has failed to take CFS seriously. The Surgeon-General has a responsibility to chair the Committee's meetings, "yet we rarely see you".

- Surgeon-General Satcher should personally chair the CFSCC meetings

- Secretary Donna Shalala (Satcher's boss) should meet with the CFSCC at its next meeting

- The Committee has developed an education program CFS -- the Surgeon-General's department should act to implement it

- The CDC's plan for its re-invigorated CFS program should be reviewed by the CFSCC before the CDC finalizes it

- a date should be set for a "State of the Science" meeting that accurately reflects the breadth of research in the field; it should focus not only on pathophysiology but treatment as well; and its planning committee should be co-chaired by one of the non-government members of the CFSCC

Kenney ended by telling Satcher "We have everyone's attention except you and Shalala."

Surgeon-General Satcher replied by giving a long explanation as to why he could not chair the entirety of all CFSCC meetings, and that he has some 25 other advisory committees that he is also nominally in charge of. Satcher did not comment the other points, except to say that he believed that Secretary Shalala probably would meet with the Committee.

Later during the meeting, a planning committee was put together to create a CFSCC "State of the Science" meeting. Prof. Anthony Komaroff was appointed as co-chair.

The CDC announced that in the year 2002 the U.S. diagnostic code for CFS will be moved from "General symptoms -- Malaise and fatigue" (780.71) to "Other disorders of the brain" (G93.3)

During the public testimony portion of the meeting, about one third of the speakers addressed the need for more research on mycoplasma infections as related to CFS. Congressman Bob Filner of California was present to personally testify on this subject, the first time a Congressman had appeared before the Committee.

The CFSCC will meet again in July to discuss the General Accounting Office (GAO) audit of the CDC and NIH research programs. The GAO report is expected to be published just before that meeting. The CFSCC's "State of the Science"

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In early February it was revealed that CDC funds from yet another research area (hantavirus) had also been diverted, and by the same person who had diverted the CFS funds in the past (Dr. Brian Mahy).

- A Congressional Commerce subcommittee declared that it would be launching its own investigation of these matters

- The U.S. Secretary for Health and Human Services, Donna halala, announced that she would be ordering her own reforms.

- At a hearing before the House Appropriations Committee, CDC Director Koplan announced that there would be an additional outside audit of the CDC's accounts, and that Dr. Brian Mahy had been re-assigned away from the CDC division he had been running. The Congressmen expressed faith in the integrity of the CDC Director and his agency, but wanted to know that the problems would be resolved.

- A hearing before the U.S. Senate Appropriations Committee was much more difficult for CDC Director Koplan than was the House hearing.

In contrast to a U.S. House of Representatives hearing held on Feb. 10, a Feb. 29 hearing before a U.S. Senate committee was lively, and was difficult for the official being questioned, Dr. Jeffrey Koplan, Director of the CDC. Koplan's routine answers were not accepted by the Senators.

Senator Harry Reid (D-NV) expressed astonishment that a CDC employee had told the Inspector-General that "It's a 'bigger crime' to follow Congress's direction rather than spend money where science dictates", as reported in the Washington Post and in other newspapers around the U.S. Reid said that that was virtually spitting in the eye of Congress. Reid also said there were new reports that research funds for Lyme disease had also been diverted, which Koplan denied later in the hearing.

Senator Arlen Specter (R-PA) bore in to Director Koplan, asking some questions of him repeatedly. Specter asked what disciplinary actions the CDC had taken. At first Koplan responded that there had been a re-assignment of one administrator, but under further questioning by Specter, Koplan said that the re-assignment had nothing to do with a disciplinary action but was done only because that individual's talents were more useful elsewhere. When Specter asked Koplan whether he had determined that false statements had ever been made about the CFS or hantavirus programs, HHS Secretary Shalala intervened and said that the privacy laws which protect government employees prevent Director Koplan from answering that question. After consulting with Secy. Shalala in private, an apparently frustrated Senator Specter said he would defer his question for the moment, but that it would ultimately be answered in public, and if need be there would be an additional Senate hearing.

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[The following petition has been circulated widely in an effort to

pressure the U.S. government research establishment to take CFS more seriously. Please print out, gather signatures, and send completed copies by postal mail to the address below.]

Copy And Distribute Blank Forms Freely. Mail Completed Forms To: Sudden Onset, PO Box 2312, Astoria, NY 11102

The recent audit of costs charged to the Chronic Fatigue Syndrome program at the Centers for Disease Control, conducted by the Department of Health And Human Services, revealed an ongoing diversion of Congressionally appropriated funds meant for the study of Chronic Fatigue Syndrome to other unrelated diseases. In light of these findings we are making the following demands.

1) A broader investigation be undertaken by the GAO to include the use of funds appropriated for CFS since the inception of the CDC's program devoted to the study of this illness to the present date.

2) We believe that this misappropriation of funds did not arise in a vacuum. We accuse the CDC of being in bad faith historically with both Congress and people with CFS and Fibromyalgia and want an impartial, knowledgeable panel to investigate how this bias might have affected the design and scope of epidemiological studies and the evolution of the case definitions which were developed under CDC auspices.

3) We believe the same bad faith to be present at the National Institutes of Health and National Institutes of Allergy And Infectious Disease. The most cursory reading of the NIH schedule of grants reveals meager funding of Fibromyalgia research, and a distinct bias towards conducting research that emphasizes a psychiatric etiology of CFS. The NIH supports only a token amount of research that contradicts this position, even though there is an abundance of research conducted both here and abroad supporting

biological causation of CFS. Therefore we ask the GAO to determine if the NIH has deliberately slanted its research commitments to confirm its prejudice and as a result has delayed and even thwarted inquiry into biological markers and, more importantly, treatment of these terrible diseases.

As a corollary to this, we have knowledge of intimidation, undermining and interference with the research and publication of theories and data that argue for an organic etiology and interpretation of our illness. We want a thorough investigation of this aspect as well.

4) We assert that the NIH and CDC have failed in their mission to identify the pathophysiology of the illnesses, identify diagnostic markers, undertake surveillance projects and educate health care providers effectively in diagnosing and treating CFS and FMS. They have abused the discretionary latitude afforded them and have

subverted the intentions of Congress. We ask that a committee of impartial scientists be formed to identify significant extramural research and the monies misappropriated by the CDC, and any other agency guilty of similar practice, be awarded to those projects.

5) Finally, we demand that individuals responsible for encouraging and implementing these breaches of faith be severely punished. We demand accountability for the great harm and suffering engendered by this malfeasance.

Name Signature ADDRESS ZIP

_________________________________________________________________

_________________________________________________________________

_________________________________________________________________

_________________________________________________________________

_________________________________________________________________

[NOTE: the actual petition has 16 signature lines. To save space in this newsletter, only 5 lines are shown above. Please add 11 more lines yourself before printing out a copy of the petition.]

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The CFS-NEWS website has moved. The new address for the main page is

The CFS-NEWS website has won several awards and has been used as a source link by the BBC and America's ABC News. The site's coverage of CFS topics is broad while its many links have been chosen selectively. Some of the more popular sub-pages at the site are:

Please change any links on your own web pages to reflect these new

URLs.

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