By David Tuller, DrPH
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I wrote recently about the problematic REGAIN study from the University of Warwick, which is testing an exercise-and-psychological-rehab program as a treatment for long Covid patients. Unfortunately, neither the protocol nor the participant information sheet, to which participants are referred during the consenting process, mentions the core ME/CFS symptom of post-exertional malaise (PEM), which has also been reported in long Covid.
The FAQ does mention PEM. However, since patients are not required to read the FAQ, there is no guarantee that those currently enrolling in this study will know or have heard anything about this potential risk. Moreover, the FAQ suggests that PEM likely impacts only a “small set” of long Covid patients but provides no evidence to back up this claim. In fact, surveys have indicated that many long Covid patients experience PEM—not just a “small set” of them.