Another ‘False Start’ in ME/CFS Clinical Trials: The GETSET Study, by Todd E. Davenport, PT, DPT, MPH, OCS

I am a physical therapist, and movement is my medicine. Some people might need more movement, in the form of an exercise program, while some people might need less movement, in the form of a pacing program.

I rely on scientific studies to help me decide who might benefit from which kind of treatment. Science helps me assign probabilities to outcomes, which I can then use to work with my patients collaboratively to establish the best possible treatment program to help them meet their goals. Reliable data from valid scientific studies can help me be more confident as a clinician that the decisions I make together with my patients actually will help them.

After starting my research career conducting clinical studies related to other fatiguing health conditions, I’ve now worked in the field of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for over 10 years.

During that time, I’ve been fortunate to work with a caring and dedicated group of scientists and advocates. To say that the body of intervention studies in ME/CFS has involved disappointingly (and sometimes breathtakingly!) poor science is an understatement. The trend of poorly designed intervention studies, most recently headlined by the PACE trial, has just led to reinforcement of erroneous perceptions about ME/CFS without providing the tools necessary for clinicians like me to help ameliorate the devastating impact of ME/CFS on real peoples’ lives. So, it was with great interest that I read the GETSET study, which was recently published in the Lancet.

All the things that made me uneasy as a physical therapist about the PACE trial are back, now in the form of a study involving a slick self-help guide. It’s the same confirmation bias of telling folks to move in the context of a graded exercise program, and then having them parrot back the study hypothesis on standardized questionnaires. It’s the same absence of objective activity measures that result in the same self-fulfilling prophecy of telling people to move more, and then declaring victory when some of them are actually able to do it. It’s the same disregard for foundational scientific evidence of aerobic system compromise, immune activation, and other forms of organic pathophysiology in favor of a behavioral approach to ‘tell the tired people to move more.’

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Todd Davenport is Associate Professor and Program Director: Department of Physical Therapy, University of the Pacific, Stockton, CA Clinical and Research Consultant: Workwell Foundation, Ripon, CA

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