CDC’s Press Conference Generates Controversy
( from www.cfidsreport.com) Within weeks of a press release by the Centers for Disease Control (CDC) announcing “groundbreaking findings” for chronic fatigue syndrome (CFS), several experts in genetic research have raised doubts about the reliability of the study's conclusions. The concerns were printed in the May 5th issue of Science magazine.
On April 20th, Dr. William Reeves, director of the CDC’s CFS research program, announced that the CDC had completed a study that found people with CFS were unable to “adapt to challenges and stresses that occur throughout life, such as infections, injury, trauma or various adverse events”. Reeves said that “knowing that there is now a biologic basis for CFS will help us identify better ways to more effectively diagnose the illness and to come up with more effective treatments, including cognitive behavioral therapy, medications or a combination of both.”
However, doubts about the CDC’s conclusions surfaced soon after the announcement. According to Dr. Patrick Sullivan, a geneticist from the University of North Carolina, "Most complex-trait geneticists would interpret [these] findings more cautiously than the authors have." Dr. Jonathon Kerr, an immunologist from London who relies on private funding for his research, said the announcement came before verification of genetic testing could provide clearer answers. Kerr said genetic research is “meaningless” until polymerase chain reaction research and clinical treatment confirms expression of any given genes.
Critics have charged that it was irresponsible of the CDC to announce changes to the way CFS is handled clinically after limiting their study to genes that involve the way the brain handles stress response. According the CDC’s Dr Suzanne Vernon, who helped design and interpret the study, “We took a pathway-specific approach, so we targeted about 50 genes and about 500 polymorphisms in genes that are active in the HPA axis pathways." Vernon says that the study is "not far from being able to be used clinically" and was designed so the CDC would be able to predict “how someone could respond to the types of medications, for example, that they're currently taking to manage their symptoms.”
Despite the controversy, Reeves defended his research. According to Reeves, “fewer than 16 percent [of the research subjects in the study] had been diagnosed ever or treated for CFS. So the study is unique in that it is free of the biases that inevitably occur when only people who have already attended tertiary care clinics are involved." Reeves also touted the study’s role in determining clinical care for CFS. “…our research is getting them into treatment. To some extent, studies like this, we use to, again, help in our physician education programs telling them about the pathophysiology.”
For years, advocates for CFS have questioned the reliability of the CDC’s Wichita dataset – a population-based subset used to study CFS. In a 2003 study, CDC researchers maintained that the average weekly workload of its CFS research subjects in Wichita was 48 hours per week. Long-time CFS advocate John Herd says the high level of functioning seen in the CDC CFS research samples does not seem reasonable, “I have talked to and met thousands of CFS patients and probably only a few percent could work to the level that is present in the CDC's dataset. They may be looking at a different group of patients."
In 1994, the CDC issued a controversial “integrative” research definition for CFS, urging that CFS research samples be combined with research samples for other conditions that cause fatigue, such as fibromyalgia, sleep dysfunction, and anxiety disorders. According to U.K researcher, Dr. Simon Wessely, the integrated approach espoused by Reeves is speeding research outcomes and streamlining results by eliminating “bias”. Yet other scientists, such as Dr. Leonard Jason at DePaul University, have charged that the integrative research definition has produced inconsistent and unreliable outcomes. According to Science magazine, differing opinions as to how to handle emerging women’s illnesses such as CFS has “made research funding for the disorder highly political.”
The CDC will soon invest millions of dollars in a educational program that will inform the public, physicians, and scientific community of Reeve's findings. The CFIDS Association of America, a CFS advocacy group, has contracted with the CDC to assist in those efforts.