An Interview with Neuroscientist Michael VanElzakker about the Just-Published and Long-Awaited NIH Study

By David Tuller, DrPH

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.”

(As discussed in the illuminating thread about this paper on the Science For ME forum, the original version of the test used in the study for measuring effort preference appears to have been developed to assess anhedonia among depressed students. It is unclear why the NIH team decided to adopt it for use in this context. And as has been widely discussed on the forum and elsewhere on social media, the paper includes other significant flaws as well.)

Third thing: Scientific publications play to multiple audiences. Major news outlets generally focused on the signs of immune dysfunctions and other biological abnormalities. Putting aside for the moment the actual details of the findings, many members of the public likely came away from this one-day media event with a slightly greater respect for the seriousness and complexity of the illness than before. On a population level, that’s not nothing.


Michael VanElzakker is a neuroscientist at Massachusetts General Hospital with a long-standing interest in ME/CFS and its neurological manifestations. I spoke with him recently about the NIH study.