In the U.S., few physicians or scientists still believe that ME/CFS is mostly “all in your mind”. At last, the National Institutes of Health (NIH) has also come on board. NIH has charged the National Institute of Neurological Disorders and Stroke with the (not yet budgeted) task of advancing research on ME/CFS. But, in Europe, influential elements remain committed to the view that ME/CFS is mainly a problem of psychological distress. This stress, they argue, causes people to become inactive. Inactivity then causes physical deconditioning—much like the astronaut who can barely stand up when she first returns from space.
The PACE Study
Sadly, promoting this “psychosomatic” view tends to discourage research institutions, aspiring scientists, drug companies and philanthropies from committing to research toward understand our illness. The PACE study, done in England, is often cited to justify the “all in your mind” hypothesis. This study created three groups of patients with a chronic fatigue like illness. The researchers gave patients in one group a cognitive behavioral psychotherapy program. A second group did a gradually graded exercise program. The control group had no exercise or psychotherapy program. Instead they were treated by physicians who were said to specialize in ME/CFS but did not receive psychotherapy or graded exercise.
Issues with PACE
The PACE study has flaws. Some of these flaws could undermine the study’s conclusions. For example, it’s not at all clear that all the study subjects actually had what we would agree is either ME or CFS. Serious questions have been raised as to potential bias in how the authors’ decided which patients had improved and which patients had not. Nor is the claimed degree of improvement anywhere close to what one might view as a “cure”. But, even more troublesome is the false extrapolation from the PACE data that people who should know better have made—even if the study’s reported results were perfectly correct.
Cognitive behavioral therapy is a useful technique to help train people into the habit of positive thinking. Basically, this means seeing the glass as half full instead of half empty. Cognitive therapy has been shown to help people cope better with many different forms of indisputably physical health problems including heart disease, cancer, rheumatoid arthritis and others. Similarly, carefully monitored exercise reconditioning, if done within a patient’s limits, can modestly help people with physical illness of many types somewhat improve how they feel and function.
What’s mischievous about how the PACE study has been used is that by implying that better coping through psychological support and/or reconditioning is the answer gives the impression that the illness involved is substantially psychosomatic. No one would claim that for a patient with angina, emphysema, rheumatoid arthritis or cancer. Why assign that blame to patients with ME/CFS? But, since PACE study-related debate continues, it might be refreshing to review a study, also from England, where a psychological intervention for chronic fatigue indisputably FAILED.
298 patients with long term chronic fatigue (not clearly defined as ME/CFS) received either one of two forms of psychological counseling—“pragmatic rehabilitation” or “supportive listening”. The “control group” had routine treatment with their general practitioner. The “pragmatic rehabilitation” therapy taught patients about physical deconditioning, coping with anxiety, improving sleep and “overcoming impediments to change”. “Supportive listening” focused on “creating an emotional and physical environment conducive to helping relationship”.
Researchers scored each patient’s fatigue and related symptoms, using the Chalder fatigue scale (an 11 questions survey asking about people’s symptoms and activities) at entry, after 20 weeks and then again about a year later. After 20 weeks the average score in all three groups improved but only modestly. Scores in the pragmatic rehabilitation group were modestly better than either the “supportive listening” or the general practitioner groups. At 20 weeks the advantage to pragmatic rehabilitation was statistically significant. But, by 70 weeks no further improvement had occurred in any of the 3 groups. And the difference between pragmatic rehabilitation treatment and the general practitioner group was no longer statistically significant. Basically, the two different forms of behavioral/psychological counseling had at best a very modest short term impact on the severity of illness. Over the long run the psychological component had no meaningful impact.
Take Away Thoughts
Why is this important? So as long as those who matter believe ME/CFS is mainly “all in your mind”, everyone suffers—patients, their families, aspiring scientists, health care budgets and society in general. (Well maybe not the disability insurance companies.) But our patients’ battle is far from won even in the USA.
NIH has committed itself to look seriously at ME/CFS. But, no increase in budget has yet been set. Please recall this. For 2015 and 2016 NIH budgeted only about $5 million a year to study ME/CFS, while the Centers for Disease Control estimates that more than one million Americans suffer from chronic fatigue syndrome. In contrast, an estimated 400,000 Americans have Multiple Sclerosis. NIH’s budget for MS? About $98 million a year. This isn’t a knock against MS research; just a comparison.
NIH has not yet committed to a new and presumably higher budget for ME/CFS. As all such decisions reflect a mix of political and scientific issues, those among us who have any credibility with federal legislators or bureaucrats—this might be a good time to employ some of our clout.
We welcome any comments you have especially your experiences with psychological counseling. Thank you.