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CDC insider to run research on chronic fatigue syndrome
By KATE BENSON
Dr. Elizabeth Unger has been named to run the Atlanta-based Centers for Disease Control and Prevention’s branch researching chronic fatigue syndrome, a move greeted with skepticism by CFS advocacy groups.
Unger, acting chief of the CDC’s Chronic Viral Diseases Branch, replaces her longtime boss, Dr. William C. Reeves, who was reassigned in February. Reeves’ insistence on seeking a psychological explanation for CFS had enraged patient and medical groups that believe the cause is biological.
Reeves’ approach proved embarrassing a year ago when researchers in Nevada reported finding a strong correlation between chronic fatigue syndrome and XMRV, a retrovirus similar in some ways to the one that causes AIDS.
The CDC played no role in that study, which has since been corroborated in part by researchers from the U.S. Food and Drug Administration and the National Institutes of Health. Other papers have not found XMRV in CFS patient samples, and papers published Monday in Retrovirology raise the possibility of mouse DNA contamination skewing the results of those that did.
Unger has defended the CDC’s continuing use of the so-called 2005 Empiric definition of CFS, which critics dismiss as overly broad and — since only the CDC uses it — nearly useless. In testimony before an federal advisory panel in October, Dr. Unger hewed closely to the past, defending the CDC’s emphasis on psychosomatic and psychosocial research.
“She focuses on this to the exclusion of identifying pathogens, which is where the excitement, challenge and promise is right now,” Dr. Fred Friedberg, psychologist and president of the International Association of CFS, said at the time. He accused the CDC’s research program of “arrogance.”
Advocates have been pushing the CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.
Extramural researchers worldwide continue to criticize the CDC’s beleaguered program. “If the new permanent chief continues with the 1) empiric definition; 2) an emphasis on behavioral studies; and 3) ignores input from external scientists and other professionals, then our opposition to the program will continue,” Friedberg said Monday.
Dr. Suzanne Vernon, scientific director for the CFIDS Association and Dr. Unger’s former CDC colleague, believes the most important qualities for her to demonstrate would be “humble leadership, a comprehensive knowledge of the state of the science and medicine of CFS, practical experience with providing CFS care or conducting CFS research, a sense of urgency and practicality and the ability to honestly and skillfully face adversaries and controversy.”
Vernon and the CFIDS Association, in a prepared statement, charged this month that the CDC is wasting taxpayers’ money by seeking a psychosomatic cause that few other medical professionals believe is there:
“For the past three years, CDC’s CFS research program, housed in the Division of High Consequence Pathogens and Pathology, has sacrificed laboratory-based studies to conduct assessments of personality and early life stress. This shift has come under fire from advocacy organizations and the research community alike, including tough scrutiny by the Department of Health and Human Services CFS Advisory Committee that makes policy recommendations to the Secretary of Health and Human Services.”
“As a taxpayer, I’m not that happy,” CFIDS Association CEO Kim McCleary said.
Announcement of Unger’s promotion came a few days after a CDC representative voted against barring blood donations from patients who say they have been medically diagnosed with CFS.
Last week, an FDA advisory committee recommended that CFS patients be barred from donating blood, amid concerns of possibly contaminating the blood supply if a retrovirus were linked to the disease. The vote was 9-4 with the committee debating how a deferral of donors with chronic fatigue syndrome should be implemented.
Committee member Dr. William Bower , medical officer with the CDC Office of Blood, Organ and Other Tissue Safety, clarified his vote in an e-mail:
“I agree that people with CFS should not give blood. I voted ‘no’ on the question posed to the committee because I believe that using educational materials to discourage people with CFS symptoms from giving blood would be more effective than adding a question about whether or not they have a medical diagnosis of CFS.”
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