Quote: On September 1st, The Atlantic published another excellent piece by Ed Yong—“Long-haulers are fighting for their future.” In exploring how this population has confronted widespread misunderstanding in the medical community, the article highlighted the links between the experiences of Long Covid and ME/CFS patients by focusing on the crucial symptom of post-exertional malaise. That led to discussion of the PACE trial, which investigated both graded exercise therapy and cognitive behavior therapy as ME/CFS treatments but was marred by methodological and ethical flaws. (The main results appeared in The Lancet in 2011.) Here’s what Yong wrote: “For year, such patients [with ME/CFS] were told to exercise (or get psychological therapy), in large part because of a now-discredited study called the PACE trial. The damaging influence of that trial has taken years to undo—the CDC [US Centers for Disease Control and Prevention] has removed recommendations for exercise therapy for ME/CFS, and other countries are updating their guidance—but several long-COVID clinics, seemingly unaware of this ongoing controversy, are now repeating the same mistake.” https://www.virology.ws/2021/09/24/...keptical-coverage-from-new-yorker-and-others/
It is good that PACE is being described as discredited, and thanks to David for his work in helping ensure that it has been. I am less positive than David about this comment: We've heard that before: 'ME is real... but so are all illnesses and just because it can be treated with psychotherapy doesn't make it any less real.'
Yes, thank you @dave30th . Agree. Haven't read the article in The New Yorker, but I think there actually needs to be more caution in assessing the epidemiological and biomedical research that's been done, too. We discuss that topic related to ME research time and again on the forum. For criticizing much of the psychosocial research, common sense and some mathematical and statistical knowledge is often sufficient. The same kind of knowledge should be sufficient to properly assess epidemiological research, and it should be clear what biases there are in doing surveys on symptoms, especially regarding how participants are recruited. At the same time, to assess the quality of biomedical research you need much more understanding of both human physiology and medical science's specific fields than you need for seeing the most common flaws in psychosocial research and limits in epidemiological studies. People critical of psychosocial research usually aren't impressed by the fact that the research was done by eminent people affiliated with high profile universities. That's good. But with biomedical research they seem to be less skeptical. I'm concerned about that imbalance. I'm especially concerned when some researchers who also are our appreciated allies and advocates fail to acknowledge what they don't know and make misleading affirmative statements about epidemiology or biomedical etiologies. I'm afraid not only the madness of a wide range of the psychosocial research on ME is now being expanded into the field of research on long term sequelae of Covid-19, but also the failure to acknowledge what we don't know and were our own biases are with regard to biomedical research. Sometimes I get the feeling that S4ME is the only place where the same rigor is applied to assessing both psychosocial and biomedical research(*). I think the need to do both takes enormous efforts for forum members. (*) Edit: Or acknowledging what we don't know, respectively. Apologies for multiple edits for clarification.