May 20, 2011
Chronic Fatigue Syndrome Study Criticized by Patients
“Everyone is entitled to his own opinion, but not his own facts.” –attributed to Daniel Patrick Moynihan, among others
Chronic fatigue syndrome (CFS) is an illness marked by chronic disabling fatigue that is not explained by another diagnosis. Other symptoms such as non-refreshing sleep, subjective memory impairment, tender lymph nodes, and joint or muscle pain may be present. The cause of CFS remains unknown, and no consistently effective treatments have been found. Some studies have suggested a viral cause for CFS, though other studies have had contradictory findings.
In February the British journal Lancet published results of a study (link below) that should have been greeted with enthusiasm. The study randomized over 600 patients with CFS into four groups. One group received only specialist medical care, in which a CFS specialist followed and managed the patient. A second group received specialist medical care plus cognitive behavioral therapy (CBT), a specific type of psychotherapy that has been proven to be effective for several kinds of psychological conditions. A third group received specialist medical care and graded exercise therapy (GET), an exercise program which starts with very low intensity and short duration exercise and slowly increases in difficulty over time. The final group received specialist medical care and adaptive pacing therapy (APT).
APT is a popular treatment for CFS based on the theory that CFS permanently limits the patient’s available energy and ability to exert. APT teaches the patient to work and complete activities of daily living within these limitations. That is, it teaches patients to adapt to their fatigue by pacing their activity. In contrast, graded exercise therapy assumes that lack of activity is part of the cause of the fatigue and so slowly increasing activity can help the patient overcome the patient’s current limitations.
The four groups were followed for a year and were measured for levels of fatigue and physical functioning. The groups receiving cognitive behavioral therapy and graded exercise therapy had modest improvements in fatigue and physical functioning over the group receiving only specialist medical care. The group receiving adaptive pacing therapy did not improve over those receiving only specialist medical care. The improvements in the CBT and GET groups were not spectacular, but they were statistically significant.
At this point I should make it clear that I’m not a CFS specialist. I’m not familiar with the rest of the CFS literature, and I have no opinion about whether this study is definitive. It did not have a huge number of patients, there was no way to blind them to the treatments they were receiving, and the outcome measures were all self-reported. So I assume that many CFS specialists find these findings intriguing, but would like to see them confirmed in a larger study.
But what I find interesting and perhaps counterproductive is the reaction of many patients. The Wall Street Journal Health Blog has been closely following this story (see the links below) and the comments from patients on their posts are quite sobering. If I had a chronic debilitating illness which has no consistently effective treatment and a study showed a modest improvement from CBT and GET, I would be knocking at the door of the nearest CBT psychologist and calling a personal trainer. And I would be pretty happy that a study finally had a positive result. Instead, patient advocacy groups and many individual patients are quite upset. They assert that CFS is caused by a virus and they reject the study findings which they think suggests that CFS is a psychological condition. This is despite the fact that the authors of the study explicitly state that “the effectiveness of behavioural treatments does not imply that the condition is psychological in nature.”
I have two reactions to this criticism from patients. The first is, why have an agenda about something under investigation? Why prefer that your disease is caused by a virus than by anything else? It either is caused by a virus or isn’t and our strongest desires can’t change the actual disease. In ten years we may find conclusive evidence that it is caused by a virus, or that it’s an auto-immune disease, or that it has genetic predispositions or that it’s a psychiatric condition. But until we know, why have a preference? This seems to me like having a strong wish about the orbit of Jupiter. I understand the patients’ desperation for an effective treatment, but the way to get there is to let the researchers seek the truth in an unbiased way, not to tell them what you expect them to find.
My second thought is, why the automatic rejection that CFS may have a psychological component? Again, if I were a patient, I would just want honest answers. If it turned out that my illness was psychological, knowing this would certainly help me focus on the right treatments more than pretending the opposite. Obviously, there is a stigma around psychiatric illness, but that stigma is wrong and should be fought against. People with bipolar disorder, for example, don’t choose their illness and can’t “snap out of it” through an act of will any more than people with pneumonia or diabetes. So I think it would be more constructive for CFS patient advocates to say something like “We don’t know what causes CFS, and whether or not it turns out to be a psychological disease, we didn’t choose it. We deserve compassion and treatment just as much as those suffering from other illnesses.” Denying that CFS could have a mental component only exacerbates the social stigma against psychiatric illness.
CFS patients deserve understanding and treatment regardless of the cause of their illness. The first step should be a willingness to investigate this mysterious condition without preconceptions.
New York Times article (in February): Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds
Wall Street Journal Health Blog post (in February): This Study on Chronic-Fatigue Syndrome Has Nothing to Do With XMRV
Wall Street Journal Health Blog post (this week): Study Blowback Shows Controversy Over Chronic Fatigue Syndrome
The Centers for Disease Control is clearly following my lead. This week it has finally alerted the public to a threat I’ve been warning readers about for years – the inevitable zombie apocalypse.
Important legal mumbo jumbo: