There's a new science magazine on the block: Undark, named for a century-old radium paint that seemed wondrous at first but later turned out to be deadly.
It's an independent online magazine published by the Knight Science Journalism program at MIT (my fellowship alma mater), and it aims to "explore science not just as a 'gee-whiz' phenomenon, but as a frequently wondrous, sometimes contentious, and occasionally troubling byproduct of human culture."
Troubling indeed is the major story just out in Undark on what was once called Chronic Fatigue Syndrome — the preferred term now is myalgic encephalomyelitis, or ME. Reporter David Tuller has chronicled for years how flawed research led to faulty recommendations for patients that hurt rather than helped many of them.
Read an excerpt below and the full story in Undark, and then please share in the comments section at the bottom: What do you think is the moral of this story?
At least a million people in the United States have chronic fatigue syndrome, an illness that can leave them all but immobilized — exhausted, bedridden, unable to move around or even carry on a conversation.
The standard treatment, developed in the 1990s by a team of British psychiatrists and psychologists, combines gradually increasing exercise with talk therapy. It has a straightforward rationale: These patients are not medically sick but severely out of shape from prolonged avoidance of activity. And they’ve avoided activity because they wrongly believe they have a biological disease that will get worse if they overexert themselves. During treatment, patients are encouraged to question this “dysfunctional cognition,” view any resurgent symptoms as transient, and push through the exhaustion and pain to rebuild their strength.
The main scientific evidence for the treatment comes from a British clinical trial called PACE, whose results were published in The Lancet in 2011 and Psychological Medicine in 2013. The trial was led by some of the same experts who developed graded exercise therapy in the first place; not surprisingly, their publicly reported findings represented an endorsement of their theories about deconditioning and “unhelpful” illness beliefs.
But patients like Nita Thatcher of Lorain, Ohio, have a starkly different view. When she tried graded exercise therapy (often called GET) in the late 1990s, it left her much more disabled than before. For a couple of years afterward, she could barely leave the house, and she never returned to her pre-GET level of function. Other patients have routinely reported a similar experience: an extended relapse after they pushed themselves beyond their limits, a symptom often called “post-exertional malaise.” In surveys, patients who have undergone GET have been more likely to report that they got worse, not better.
Now, an investigation of the PACE study reveals that it suffers from such serious flaws that its reported results are uninterpretable and meaningless. Its main claims of success rest on a mind-boggling paradox: In some cases, even if participants got worse during the trial on the two primary outcomes of physical function and fatigue, they could still be deemed “recovered” on these measures. How? Because the investigators’ criteria for “recovery” were so broad that they represented worse health than the entry criteria for serious disability. One out of eight PACE participants qualified as “recovered” for physical function or fatigue before any treatment at all — an astonishing fact not disclosed in the published papers.
Even though the investigators promised in their trial protocol to disclose “any possible conflicts of interest” and “institutional affiliations” while obtaining informed consent, they failed to tell prospective participants of their close ties to disability insurers — to whom they had long been promoting the very treatments being studied.
Scientists in the United States have now begun to push back against the graded exercise treatment and the assumptions that underlie it. They’re exploring the likelihood that the syndrome is caused by a persistent viral infection that might be treated with drugs. Unfortunately, any such therapy is likely to come too late to help patients like Nita Thatcher.
Read the full article in Undark here.