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CFIDS Association of America v Centers of Disease Control: Round II





Cort Johnson

Phoenix Rising - Cort Johnson's Column

...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.









Cort Johnson publishes the free Phoenix Rising newsletter and runs the website of the same name. An ME/CFS sufferer himself, since 2005 he has used his keen intellect to follow the latest developments in ME/CFS research and treatment and translate the often complicated concepts into language that the layman can understand. An active advocate Cort has been participating vigorously in the Campaign for a Fair Name to get CFS recognized as ME/CFS.




Tuesday, January 27, 2009:


CFIDS Association of America/Centers of Disease Control: Round II


by Cort Johnson



Kim McCleary’s testimony alleging incompetence at the CDC was too riveting for federal advisory committee (CFSAC) to simply close up shop. They postponed adjournment, called her back and addressed some issues she had raised. The following discussion opened some new ground for us on this issue.


Some History. Kim McCleary, the CAA’s president, got a closer look at the CDC's effort last year whenshe served on a blue ribbon panel at the agency. At that time it seemed to her and others that the CDC was getting too little bang for their buck. The CAA first broached the subject of the program's productivity with the program itself. Failing to get satisfactory answers there they approached the CDC leadership using Sen. Jack Reed of Rhode Island’s office to facilitate discussions. Apparently failing to get the result they wanted there they finally took their concerns public - just before an external review of the program began.


Kim McCleary made it clear that the CAA is focused on one and only one aspect of the CDC's CFS program – it’s leader but she also questioned several other aspects of the program including the creation of a controversial new definition and the overall focus of the program including its lack of work on a biomarker. She noted how startling it was to visit Japan and see a Japanese team with 20% of the CDC's budget producing amazing results.


A Time of Opportunity… and Danger - The CAA has raised these issues at a particularly interesting time. The CDC’s CFS program is currently undergoing both internal and external reviews and the entire program will be moved to another, still unannounced, section of the CDC. Reorganizations have not gone well for ME/CFS programs in the past. The reorganization of the NIH’s CFS research program seven years ago resulted in it being moved from a powerful, money-rich Institute to a small, poor Office. The three active federal research centers closed and research funding dropped dramatically and seven years later shows no signs of rebounding.


Dr. Klimas immediately brought up the ‘doomsday scenario’: the ME/CFS program being dismantled but it’s hard to imagine that that could happen and Dr. Miller (from the CDC) stated that that was not a possibility. " God forbid… the program be dismantled…the basic science… is just phenomenal… and the laboratory strength is really good” Dr. Nancy Klimas Indeed it's hard to end a program but on the other hand its quite easy to put a program in a situation that causes it to lapse over time into mediocrity. In 2002 a new uniquely multidisciplinary ME/CFS program was announced at the NIH with great fanfare and hope, but was ultimately poisoned by a lack of support and an untenable structure. The patient community, largely unaware of the issues, hardly raised an eyebrow as our most productive research centers were closed down and an important program languished.


A Bird in the Hand - Dr. Reeves' Tenure; Given the uncertain nature of what may lie ahead, let’s take a quick look at what we’ve had with Dr. Reeves' leadership. The program was in disarray when he took over with the institution having used funds specifically allotted to CFS research for other purposes and then lying about it. It’s safe to say that the disease enjoyed little credibility at that point.


Ten years later ME/CFS enjoys greatly increased credibility in the medical world and the CDC program played a large part in that. The team’s innovative, cutting-edge techniques and its willingness to collaborate resulted in a signature event in ME/CFS history: the simultaneous publication of 14 papers in the Pharmacogenomics journal in 2006. Coincident with that the head of the CDC proclaimed, at a national press conference, that ME/CFS is a serious and legitimate disorder and announced that the CDC would fund, for the first time in its existence, a media campaign designed to increase awareness about an illness. Those events got the medical community to sit up and begin to pay attention.


Dr. Reeves introduced two controversial aspects to the program: a reliance on expensive random sampling procedures and a radically different definition of ME/CFS that appears, as yet, to have won little acceptance in the research community. At a time when a significant portion of the ME/CFS professional community was starting to emphasize post-exertional malaise in ME/CFS, Dr. Reeves pushed that symptom off the map, replaced fatigue with a more anomalous term (‘unwellness’) and included emotional distress as a significant element for the first time. Not surprisingly the CDC's figures of "CFS" prevalence jumped fourfold - raising questions regarding what kinds of people were being labeled with CFS.


Many questions could be asked whether the program’s funds have been spent wisely but it’s clear that Dr. Reeves is interested in and committed to this subject, and judging from Dr. Klimas’s and others comments, he has assembled a talented team around him. Contrary to most patients' perception, psychological studies have, at least up until this point, have made up a small portion of CDC's research program. Whatever its past successes the CAA's charges suggest that the program has badly faltered in the last several years.


Researchers Chime In - Several researchers were quite troubled by Kim McCleary's report. Dr. Snell of the Pacific Fatigue Lab stated, “As somebody who works on a shoestring budget, when I look at some of these numbers I was somewhat appalled”. After initially defending the program, Dr. Klimas, a longtime collaborator with the CDC, closed with a sharp and personal retort. After having an interagency Defense Department/CDC project funding get cut off twice by the CDC in midstream, Dr. Klimas stated “I don't want to go back and collaborate with the CDC because it's the second time I had the plug pulled on the study in the last year. It's embarrassing….There's something wrong”. These are strong words from a researcher with close ties to the program.


Dr. Reeves leaves, the greatest danger is probably a new leader who is not committed to this field. It's been hard to find enthusiastic, committed researchers in the federal establishment and one wonders where in the CDC (if not within the team itself) such a leader can be found. Dr. Vernon would have been an obvious choice but she's no longer with the program.


The program is at a crossroads: we don't know where it will end up and who ultimately will be responsible for it, and if the CAA's accusations have cut deeply enough, we're not sure who might be leading it. The resignation of the head of the CDC, Dr. Gerberding, who was considered a friend to ME/CFS - but who still allowed the programs funding to languish - further complicates the programs standing.



Read more at Phoenix Rising


Chronic Fatigue Syndrome Forums




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