Chronic Fatigue Syndrome and medical research

Steve Lubet writes here about the latest research regarding a long-standing controversy: “Is Chronic Fatigue Syndrome an organic disease that should be addressed by biomedical research, or is it a only psychological condition best treated by some form of psychotherapy?”

Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis, or ME/CFS) is an incurable disease with devastating symptoms that include blinding headaches, profound exhaustion, muscle weakness verging on immobility, exertion intolerance, extreme sensitivity to light and sound, and the inability to stand or sit upright. Most patients will tell you, however, that by far the worst part has been the scorn they once had to endure from physicians, employers, and even friends and family, who frequently refused to believe that they were truly sick.

Fortunately, the situation has improved significantly in the United States, where there is now widespread recognition that Chronic Fatigue Syndrome is a biomedical illness with physiological causes. Regrettably, other countries have not all gotten the news – most notably the United Kingdom, where prominent psychiatrists have successfully argued that it should be treated primarily as a cognitive and behavioral disorder. That may also be about to change, however, because a new investigation – just published on the website of a Columbia University virology expert — has thoroughly debunked the underpinnings of the British psychiatrists’ approach.

There has seldom been good news for ME/CFS patients, many of whom have been housebound or bedridden for years. Fortunately, 2015 has turned out to be a very encouraging year for ME/CFS sufferers in the United States. In early February, the Institute of Medicine released a long-awaited report titled “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness,” stating that “ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives” of as many as 2.5 million Americans. In addition to criticizing the many physicians who “mistake it for a mental health condition,” the IOM committee proposed new diagnostic criteria and called for greatly increased research funding for ME/CFS. In the words of the committee chair, Dr. Ellen Clayton, a professor of both medicine and law at Vanderbilt University, “It’s time to stop saying that this is a just figment of people’s imagination. This is a real disease, with real physical manifestations that need to be identified and cared for.” The IOM report broke the barrier of indifference, but of course it could not do anything to solve the intractable nature of the disease.

Lubet’s post traces the tangled story of how an apparently flawed study has been used to buttress the claim that ME/CFE was essentially a psychological condition, and he links to this fascinating three-part article by medical journalist David Tuller, critiquing the research that has led so many psychiatrists and other medical personnel to tell those suffering from the disease that it was all (or mostly) in their heads.