So, okay…The big enchilada from the US National Institutes of Health’s seven-year, $8-million, under-recruited and over-hyped study—”Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome”–was published last week in Nature Communications. It would be fair to describe the ensuing public debate over this massive text-and-data dump as spirited.
(NIH press release here; articles in The New York Times and Scientific American here and here.)
The study fell short of the initial number of intended participants and was interrupted by the pandemic. The long-awaited publication of the results triggered widespread outrage and dismay among patients as well as many scientists and clinicians specializing in the field. I’m a journalist and a public health guy, not a biologist or physician or statistician, so I’ll leave the in-depth analyses of the granular data to others. For now, I have a few observations.
First thing: Wow, what an arduous endeavor for the 17 sick participants! Amazing that they were willing and able to spend so many days putting themselves and their bodies on the line. They deserve enormous thanks.
Second thing: “Effort preference”—what the fuck? If you focus-grouped it, you couldn’t come up with a more demeaning and ridiculous name for the construct presumed to drive the disabling symptoms that plague this particular group of patients. It is astoundingly tone-deaf–almost as bad as naming a devastating illness something as demeaning and ridiculous as “chronic fatigue syndrome.”
