By David Tuller, DrPH
October is a crowdfunding month at University of California, Berkeley. If you’d like to support my work, you can make a donation to the university (tax-deductible for US taxpayers) here.
In February, the journal Nature Communications published the US National Institutes of Health’s long-awaited paper, “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome.” The study included 17 ME/CFS patients, along with 21 healthy controls.
The paper immediately triggered howls of protest for a number of reasons, and in particular for the controversial claim at its core–that the profound fatigue reported by patients is the result of a novel and rather convoluted construct called “effort preference” that has never previously been used to assess this cohort of patients. As noted in the third sentence of the abstract, “one defining feature of PI-ME/CFS [post-infectious ME/CFS] was an alteration of effort preference, rather than physical or central fatigue.”
Members of the patient community have conducted extensive and robust analyses of the flaws of the “effort preference” construct. Jeannette Burmeister, a lawyer as well as a patient, posted a blockbuster four-part series about it on her blog, Thoughts About M.E. In an extensive thread, members of the Science for ME forum also whacked through the thicket of data shenanigans that led to the NIH’s problematic and unwarranted conclusion. The agency has since indicated that it is reviewing the study and its methodology. (I also wrote a post about the offensive decision to use the term “preference” in connection with these patients—akin to callng a serious disease “chronic fatigue syndrome.”)
Last month, The Sick Times published an essay by John Bolecek, a former pedestrian and bicycle transportation planner in Virginia disabled by Long Covid. We recently spoke about his piece, called “Five reasons why the NIH should retract the ‘effort preference’ claims in their intramural ME/CFS paper.”