Chronic fatigue syndrome & child abuse: Disordered patients or disordered research?
Are chronic fatigue patients victims of child abuse or research abuse?
Posted January 13, 2009
Last week Emory University issued a press release that reverberated in newspapers and media throughout the world:
Childhood trauma is a potent risk factor for development of chronic fatigue syndrome (CFS), according to a study by researchers at Emory University School of Medicine and the Centers for Disease Control and Prevention (CDC). The study is published in the Jan. 5, 2009 Archives of General Psychiatry.
Results of the study confirm that childhood trauma, particularly emotional maltreatment and sexual abuse, is associated with a six-fold increased risk for CFS. The risk further increases with the presence of posttraumatic stress disorder symptoms.
Somehow the news that so many people with chronic fatigue syndrome had been subject to child abuse struck me as outrageous --could this really be? Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," this kind of assertion is always a red flag to me.
For some perspective, I contacted Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic --the investigative tour de force that laid out an extensive body of scientific evidence for the biological origins of physical dysfunction of what many patients and scientists now call chronic fatigue and immune dysfunction syndrome (CFIDS) or, in Great Britain, Myalgic Encephaloyelitis (ME).
Johnson told me that the CDC -and the Emory study it funded-- had broadened the definition of the disease to include not just those with the actual immune syndrome, but also people who were, well ...simply fatigued. "That is why, in their paper, they call the disease simply chronic fatigue syndrome, or CFS," she says. This broader group muddied the waters on the true etiology of the specifically-defined syndrome to which other research refers. "The CDC has created a definition that does not match any disease entity, much less the disease they claim to be studying. They have essentially medicalized ‘fatigue,' defining ‘fatigue' as a specific disease," Johnson states.
As for alternative studies, Johnson says "there are dozens of scientific papers published about the actual chronic fatigue syndrome every month in more distinguished journals, all of them worthy of being covered in the mainstream media, but the only research on this disease that gets covered comes out of the CDC. Why is that? For one thing, its because the agency pays a ton of money to a PR newswire to publicize their papers on CFS worldwide. This is part of a long-time strategic effort to promote the agency's longstanding propganda that M.E. is a personality disorder. It's the latest in a continuum of miguided, money-wasting research by epidemiologists who aren't really qualified to be undertaking basic research into such a complicated and serious disease," Johnson states.
She is disturbed that the study uses healthy controls when the true measure should be other disease states. "The correct controls would have been people disabled with MS, or Parkinsons, ALS, Alzhimers, congestive heart failure, or other infectious diseases like AIDS and Hep C." Then the study could have asked whether disease in general is more likely in those facing trauma -or just this "disease" alone.
She also explains that "trauma and abuse are very vague, very subjective. This is simply not acceptable science from a major American health agency. This is pushing your agenda forward. It's sick, it's cruel and it's hurting millions of people around the world whose lives have been utterly and permanently shattered by this illness." Indeed, she is critical that the study was done at all. "It is a waste of public funds, given the fact that there are over 5,000 research papers demonstrating CFS is a serious neurological and imuunologic disease --papers that the press has ignored," she states.
Perhaps the most notable thing about the Emory study, Johnson points out, is that it fails to cite a study performed in 2001 that asked the identical question. That study demonstrated that people with CFS actually have a lower incidence of childhood abuse and trauma than controls.
"It's doubtful that the patients in the CDC study even have chronic fatigue syndrome as defined by scientists elsewhere --but even if they did, why look at them through the prism of childhood abuse and trauma," Johnson asks. "Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s? All are topics with a significant body of scientific publications behind them --papers that were authored by academic scientists greatly more credentialed than the group that has put out the child abuse theory now.
"If there was any doubt before, this paper suggests the agency's research program on CFS should simply be shut down because it's hurting more than it's helping," Johnson contends.
Pamela Weintraub is senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008