Op/Ed: Reeve's Conclusions - More Than Meets the Eye -

Short Takes

IACFS Conference January 2007

Short Summary of Research Presentations Avialable

There is a lot of discussion about the presentations at the 2007 IACFS Conference in Fort Lauderdale Florida. If you were unable to attend the conference yourself, a short summary of what was presented is available above. Dr. Lesley Fein, from the Pennsylvania Lyme Disease Society and National Lyme Disease Caucus has been kind enough to prepare short notes on the presentations at the conference. They are posted above:

IACFS Research Presentations

Conference Gets Underway

The 8th IACFS (International Association for CFS) Conference, a gathering of CFS researchers, clinicians, and patients, was held in Fort Lauderdale, Florida from January 11th through the 14th at the Bahia Mar Hotel. The conference was sponsored by the IACFS and hosted by P.A.N.D.O.R.A., a local advocacy group that operates in Southern Florida. A website with information about the conference is currently maintained by P.A.N.D.O.R.A. You may find that website and more information about the conference here:

The IACFS CONFERENCE - FORT LAUDERDALE

The Gibson Inquiry, a report by the Parliamentary Group on Scientific Research for ME/CFS, has generated a great deal of discussion among ME/CFS advocates in the United Kingdom. Some advocates feel the report, which was released on November 26th, 2006, did not go far enough in addressing some of the problems with ME/CFS research and clinical care. Other advocates believe the inquiry at least addressed some of the cultural, commercial, and personal factors that have produced a stranglehold over ME/CFS research in the U.K.

I concur with the second group of advocates. The Gibson Inquiry is a step forward. . The group’s findings, to be objective, had to come from outside the patient groups and research interests that are currently in disagreement over ME/CFS. So u undersstandably, everything in the report is not as it would be written had a patient’s advocacy group wrote it. Instead, the group wrote a document that attempts to present an objective, outsider’s view of CFS/ME research and clinical care in the U.K.

In the first week of November 2006, Dr. William Reeves of the Centers for Disease Control and CFIDS Association of America (CAA) held a press conference to kick off an American public awareness campaign for CFS. The press conference generated hundreds of stories around the United States about the devastating effects of CFS . While the press conference and the ensuing coverage about CFS may have had some positive outcomes (short-term), many advocates I spoke to are more concerned about the direction (current and long-term) of research and clinical care for Chronic Fatigue Syndrome. Questions about the objectivity and soundness of the CDC's research program are at the root of these concerns. See link:

CDC Concerns

Several advocacy leaders and clinicians have been quick to align themselves --- both financially and ideologically --- with Dr. William Reeves, who heads the CDC research program for CFS. Kim McCleary of the CAA and Nancy Klimas both stood by Reeves at the conference, saying the CDC’s research program has been a tremendous step forward for CFS research and clinical care. However, many advocates I speak to are not in agreement with these views. For the reason why, see below.

Why are the majority of the advocates concerned, rather than heartened, by the CDC's "Spark" Campaign? For one reason, reference the comments of Dr. Malcolm Hooper, professor of medical chemistry from the University of Sunderland, U.K, on December 8th, 2006:

"A note of caution concerns the general comments about the work in the USA... there is also a powerful lobby that supports the biopsychosocial/somatisation view... Drs Strauss and Reeves in the States endorse this approach..."

Why would Hooper make such a statement? After all, wouldn't appearances lead one to believe that Reeves has won the respect of a few advocates and advocacy leaders. Perhaps Dr. Hooper has been reading archives of journals which comprise the well-circulated Journal of the American Medical Association. With impeccable timing just days after the "spark campaign" press conference, Reeves' team wrote their views about CFS in one of the most widely American medical journal, the Archives of General Psychiatry: "In sum, it appears that CFS is part of a spectrum of disorders that are associated with childhood adversity... High emotional reactivity is a risk factor for all of these disorders. Thus, enhanced stress and mood reactivity can be assumed to be a central feature common to this spectrum of disorders". This confident declaration of what causes CFS was made by the CDC staff in the November 6 issue of the widely-read journal.

Hooper is right.     But, whether or not Hooper is correct about Reeves' personal views is not what is causing concern among the greater patient commun ity.. What is most troubling is the environment Reeves conclusions have been formed in.     For years, Reeves has not employed one researcher on his staff who has been an advocate of a biomedical model for CFS, even though more researchers espoused that model than a “biopsychosocial” model outnumbers those who did not.    In April 2006, Reeve’s "groundbreaking" findings which he then claimed should inform future research and clinical care, but Reeves purposely limited his genetic findings pertaining to such a grand announcement to those areas of biology pertaining to brain hormones (HPA axis).     Reeves' has assembled and funded a team of experts in stress and emotional states to help him interpret his research at Emory University, where he has now an associate clinical professor of psychiatry.   When a researcher only chooses to surround himself/herself with one viewpoint and limits his investigation to one area far before his conclusions are presented, it is a reliable sign that his/her investigation is being hindered by internal factors.

The Gibson Inquiry is only half the story. The U.S. response to CFS, orchestrated by Reeves, has been much better packaged than the much-maligned Wessely School.     Public and CFS advocates often hear quotes from Reeve’s like the following: "Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease. The others will die from their diseases, but those with CFS are no less disabled."

  Yet, in a medical journals read by clinicians in the U.S., the team Reeves has assembled refers to CFS a "spectrum of disorders" caused by “mood reactivity”.   Reeve's terminology changes to fit his audience. This is understandable, but Reeves has failed (as has been alleged in the U.K) to give researchers who espouse a biomedical model an equal portion of the funds he administers. Despite Reeve's occasional penchant for using validating terminology about CFS, the problems in the U.S are similar to the problems cited in the Gibson Inquiry. The problems in the U.S. are only better packaged.

So, when Hooper says that "the CDC (Fukuda) research criteria for ME/CFS are now known to be flawed", he may be referring to the fact that Reeve's CFS research subjects are far less disabled than his quotes about “someone with AIDS or end-stage renal disease”.    Reeves CFS research subjects, while chronically fatigued, are capable of a median 48 hours a week of activity. What Reeves' is researching is not the "chronic fatigue syndrome" that was presented by the CDC's "Spark" campaign -- disabling, severe, life-altering.   It is a mild annoyance in which 83 percent of the sufferers do not even know they are ill. Perhaps that is why the CDC leaders have cut Reeves' funds.   They realize that Reeves, when large numbers of CFS patients/political constituents are in his audience, is a researcher of a serious and life-altering disease.    Yet when the scientific community is in his audience, Reeves' research samples, his funding decisions, his professional associations, and his published conclusions appear to present a different story.

Is Advocacy in the United States Dead? And Why?

Is advocacy in the United States dead?    It is a good question.    If the United States had a robust, involved advocacy contingent, the JAMA articles would have been discussed and debated.    Reeves' opinion on CFS is now clearly laid out. There is no avoiding it.  Yet, despite seeing Reeve's cards finally placed on the table, there is little public debate in the United States about Reeve's staunchly-held personal views or the environment in which those views were formulated.   

When the IACFS advocacy conference kicks off in January, panels will be set up to discuss how CFS advocates may help fund the CDC program, as well as a similar program at the NIH.  Is there more to advocacy than pleading for more government funding?   Yes! And therein lies the problem. The majority of people who suffer for disabling CFS in the U.S. want to reevaluate the philosophies of those who administer these programs before they reinvest in those programs. The patients I speak to want advocacy to address specifics, not more dollars.   Right now, there has been little discussion by our advocacy leadership of the landscape for CFS research and clinical care in the U.S, where the department of health is taking CFS, and what impact it will have on CFS patients and their families.

Contrast the situation stateside with the vibrant and robust debate in the United Kingdom about the Gibson Inquiry.    Unlike the JAMA article in the U.S, the Gibson Inquiry was noticed, debated, and discussed.     Perhaps British advocates now know what American advocates have yet to learn.     More public funding, without any specifics about who or what such funds are spent on, can be more harmful than helpful.

Clearly, the United States is suffering an advocacy meltdown.   Strong principles must inform U.S. advocacy efforts – rather than contracts or funds.    What is currently functioning as advocacy in the U.S. is dying on the vine. Traditional political advocacy, which simply pleads for "more programs" or "more funds" is not enough for CFS.  Government involvement must be VERY specific about what kinds of research is languishing, and it must be publicly vocal about what the problems are in funding certain types of research for CFS. For an illness such as CFS, "what we fund" advocacy is more important that "how much we fund".

If any one item deserves debate and a panel discussion at the advocacy portion of the IACFS conference, it is the article from the CDC staff in the JAMA archives.     Advocates have questions about the CDC's new direction. What will the CDC's beliefs about CFS mean for CFS patients and their families?   How will these views espoused in Reeve's JAMA article affect research funding and clinical care for years to come? What should our advocacy response be to those views, if any?     Should we begin to call for "more funding" for the CDC program? Or, should we ask where the program will take us first? Should we begin to work with researchers who espouse a biomedical model for CFS?

There are leaders who may see these questions as a great taboo.     To them, any discussion should be tightly-controlled, rallying advocates around traditional political advocacy – dollars and cents.   This would be tragic, and it will have consequences.   The changing face of CFS research and clinical care in the U.S. should be discussed and debated now--- rather than being swept under the rug, ignored, or excused.     Should American advocates fail to do so, a Gibson Inquiry in the states will be needed 10-15 years from now.  If that happens, we will have to look back on these times, and wonder why it was our own advocacy that laid a well-funded foundation for something we really didn’t want to begin with.

Cort Johnson’s Interview with Dorothy Wall

One of the CFS advocates who spends a great deal of time on CFS is Cort Johnson. Cort operates the Phoenix Rising website. He has just released an interesting interview with Dorothy Wall, a PWC from California who has written a compelling book on CFS. You can read the interview on Cort’s site (and more about Dorothy's book, "Encounters with the Invisible") here:

Cort Johnson Interview

Lecture by Dr. John Gow

It is not often you can get something for nothing, especially around the much-commercialized Christmas season. But, I recently received a link to a lecture by U.K. researcher Dr. John Gow. Gow has recently applied for a patent for a blood test for a subset of CFS patients with immune dysfunction. Dr. Gow's research is funded by the M.E. Association -- so why not give a gift to CFS/ME research this year?

Lecture Link
ME Association Donations

As always, your comment and ideas are appreciated. My EMAIL HERE,

Craig Maupin

Editor, The CFIDS Report