There's More Than Meets the Eye To CDC's April 20th Press Conference
Craig Maupin at http://www.cfidsreport.com
In certain circumstances, silence can be refreshing. In other circumstances, silence can be uncomfortable. At a recent press conference on April 20th, 2006, Centers for Disease Control (CDC) researchers laid out their plans for the future of chronic fatigue syndrome (CFS) research and clinical care. For several days following the press conference, the CFS community was remarkably silent -- uncomfortably silent.
The press conference generated the most publicity CFS has seen in the last 20 years. Major networks and over 400 newspapers carried the message that CDC researchers had uncovered "groundbreaking results" which prove CFS has a "biological basis". CDC researchers affirmed that some CFS sufferers are "as impaired as a whole as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer". According to William Reeves, director of the CDC's CFS Research Program, the CDC will soon fund a provider education program designed so "providers, medical schools, and insurance providers get this more into their mainstream."
CFS advocacy groups have long complained that the federal government has not funded enough research, created enough media attention, or discovered effective treatments. But if the CDC's press conference fulfilled these requests, why weren't CFS sufferers breaking out in a collective celebration? Why weren't most advocates cheering the positive culmination of years of political requests for "more" attention on CFS? Those CFS sufferers I spoke to were expressing disappointment. Why?
CFS sufferers know that Thursday, April 20th marked a strong effort by the CDC to shift the way chronic fatigue syndrome will be conceptualized - by scientists, physicians, and the public. More importantly, Reeve's cards, which had been painstakingly held close to his chest, were finally on the table. On Thursday, Reeves appeared to be playing those cards in an attempt to sway public opinion and policy. He wanted to direct future clinical care and research efforts into narrow areas pertaining to stress response.
Despite the spin about "biology", the three genes which Dr. William Reeves claims will direct future research and clinical care for CFS are primary to the biological footprint of post-traumatic stress disorder and anxiety. They are also genes common to a wide variety of fatiguing disorders and serious diseases.
The press conference was geared around a set of 14 studies published in the April 2006 issue of Pharmacogenomics. Reeves claimed the studies alerted the Centers for Disease Control to the importance of stress response in the pathophysiology of CFS. And now, CDC researchers insist the study will change the way CFS is handled clinically by physicians, scientists, and insurers - very soon.
The CDC is well-positioned to enact this shift. At the moment, they possess a strong facade of flawed evidence. The CDC team has been well-versed in the technical, yet gentle, terminology that can help move their ideas forward. Terms like "biologically-based", "genetic predisposition", "homeostatic imbalance", "neuroendocrine response", and "allopathic load' seem tailored to assuage sufferers to this new stress disorder -- for a while. As he has in the past, Reeves made use of that knowledge on Thursday. But all the gentle language seemed to fall on deaf ears.
What didn't find its way into newsprint was the collective concern of the CFS community. Following the announcement, I spoke to people with CFS. They viewed the announcement as a hallmark/historic event in a long list of disappointments. They know they face a complex set of problems. . What are the problems?
First, the CDC's Wichita CFS research subjects don't appear to be very disabled or impaired. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. The average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, CFS subjects who are diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.
In 1994, the CDC merged fatiguing conditions such as anxiety, sleep disorders, and fibromyalgia into the CFS research rubric, an approach which was favored by those who hastily-espoused a psychiatric model for CFS. In 2005, the definition used by the CDC was broadened even more (fourfold), allowing the possibility that CFS research could be done on subjects with only emotional dysfunction. Does the CDC team have a proper concept of CFS? Or, is their new concept of CFS based on societal views toward predominantly women's illnesses? Many CFS advocates feel the freewheeling approach to CFS research at the CDC has simply made their illness vanish. Their illness no longer exists.
Secondly, CFS sufferers have always been deeply concerned about the objectivity of the government agencies charged with researching CFS. CFS is a predominantly women's illness; however, research into CFS has often been run by men. These are men with deep feelings about the illness. As early as 1997, at a Congressional hearing on Gulf War Syndrome, Reeves claimed that the distinguishing feature of CFS was "multiple major lifetime stresses in the year before one becomes ill." Since his 1995 comment, Reeves surrounded himself with researchers who seemed to share his views. At the 2004 AACFS conference, Dr. James Jones --widely considered Reeves right-hand man -- posited his theory that CFS should be conceptualized as a severe form of fear/avoidance. Even more telling, Reeves most visible collaborations have been with a group of researchers who specialize in post-stress disorders at the Mind/Body Institute at the Emory University Department of Psychiatry and Behavioral Sciences (Raison, Heim, Miller). Reeves has since been named an adjunct professor of psychiatry at Emory University, teaching classes for his own contractor. It is a position for which Reeves has seemingly has few qualifications. Given this foundation, the CDC's conclusions came as no surprise.
However, the most disheartening aspect of the Reeve's press conference was simply his decision to make the announcement based on a "pathway specific" study. The press conference was based on a study that was designed so that all genetic snips that did not pertaining to the HPA axis -- areas of the brain which pertain to the biology of emotions and stress response -- were tossed out. Wouldn't it be more responsible to use a study designed to test the entire genome, BEFORE a press conference to the nation to announce groundbreaking findings?
Journalists at the press conference were visibly frustrated. They requested copies of the studies underpinning Reeve's conclusions. They were told that the studies, which had been available earlier, were now offline and unavailable.
The CFS sufferers I spoke to were deeply disappointed, in both the CDC and their advocacy leaders. When a reliable, professional, and diplomatic voice was needed to articulate why CFS could be conceptualized outside Reeve's paradigm, the CFS community did not have a leader who could act in that capacity. What I heard was strong disappointment, followed by public silence.
I started the CFS Report several years ago because I wanted to create a haven from the controversy, anger, and divisiveness that often surrounds CFS. Yet, to place a positive spin on the developments of today, April 20th, 2006 would be insincere. For those with CFS, today was a day of disappointment.
I know those who will be negatively affected by recent events. They are my friends. They are my fellow community. Unlike the research subjects in the CDC's Wichita dataset, they are unable to work 48 hours a week. On Thursday, April 20th, they reacted to the CDC's news about CFS with disappointment, then silence. It was this silence, inaction, and a collective inability to address mounting problems that was the most disheartening news of all.
Maes, M. Serotonergic and Noradrenergic Markers of Post-Traumatic Stress Disorder with and without Major Depression. Neuropsychopharmacology (1999) 20 188-197.
Solomon, Laura, Papanicolaou, D; and Reeves, W. Functional Status of Persons With Chronic Fatigue Syndrome in the Wichita, Kansas Population. Biomed Central, Health and Quality of Life Outcomes, Oct, 2003. (approx 31 hours work per week, plus 17 chores)
Reeves, William; Testimony, Presidential Committee on Gulf War Illnesses; Green Room, San Francisco War Memorial Building; Nov 7, 1995 Wisconsin
Pharmacogenomics, April 2006.
WISC CFS Association. Good Enough to Take it To the Bedside.