Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

I think so. It seems to all be included in the "Neurophysiology Data Files".

 

Seems like this is one thing we haven't dug into yet. I would like to see a chart of all participants resting lying HRs and their standing HRs during the TTT.

 

https://twitter.com/user/status/1813035370336112898


Does anyone know more about this @Dakota15 ?

 

Unfortunately I don’t. I submitted my claim to AIRIO back in March/April and I shared their conclusion on here. Will see if they handle this one differently as I’m curious to track.

 

What is the status of the letter to the journal? Is there any way I can assist?

 

Trial By Error: “Effort Preference”? WTF?

"...I mention this as a way of highlighting my initial reaction to the long-awaited and long-delayed publication of the US National Institutes of Health’s study of 17 ME/CFS patients, along with 21 healthy controls. The paper, titled “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome,” was published in February in Nature Communications, a high-impact journal. It immediately triggered howls of protest.

One reason for concern was that the authors made sweeping claims for a paper based on such a small sample of patients, some of whom were too disabled to participate in every part of the study. (The study was originally supposed to include a much larger sample, but the coronavirus pandemic interrupted those plans.) Another was the controversial claim at its core–that the profound fatigue reported by patients is the result of a construct called “effort preference.” As noted in the third sentence of the abstract, “one defining feature of PI-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 conclusion. As of this posting, that thread includes almost 800 comments—many of them quite lengthy. (On the Health Rising forum, Cort Johnson offered a perspective that was more sympathetic to the research team.)"

https://virology.ws/2024/07/21/trial-by-error-effort-preference-wtf/

Edit: Add Dave's tweet.

 

That's this main thread. Along with the separate EEfRT thread it's nearly 1600 comments. (Which is of course quite an effort preference.)

 

Ah, good point. Maybe I'll get around to adding something.