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.

 

From the ME Research UK summary of the presentations at this years Invest in ME conference,

"Effort Preference – Not a Big Deal?

Dr Brian Walitt presented results from the NIH’s intramural deep phenotyping study of ME/CFS. He highlighted the significance of birth sex in understanding post-infectious ME/CFS, but notably did not discuss “effort preference”, a central and controversial theme of the published paper. When later asked about this by an ME Research UK representative, he stated that “decision-making” only plays a small role in ME/CFS mechanisms. He directed attendees to a 5.5-hour seminar for comprehensive insights. ME Research UK has provided both a basic and detailed overview of the paper."

https://www.meresearch.org.uk/me-research-uk-reports-on-invest-in-me-research-conference-2024/

 

Is this something that can be added to the complaints about the original paper pushing effort preference as the main explanation for ME/CFS, if Dr Walitt is now backtracking?

 

I wonder if there have been some "please explain" meetings following Jeannette's, our own and others' very valid criticisms. They have to realise that they've screwed up.

I mean, after all, we have close to 2000 comments on this which is quite the effort preference when compared to a healthy control group as represented by the peer reviewers.

 

This reminds me of the time when I sent a letter to the Hungarian Academy of Sciences after Professor Janszky, a neurologist, made same pretty horrible unsupported claims about ME/CFS patients at the long covid symposium of the academy. He was just regurgitating stuff Sharpe and the BPS crowd tended to say in their smear campaigns, you know that, but also felt the need to point out that Judy Mikovits, former ME/CFS researcher became an anti-vaccine conspiracy theorist, etc. Concluding that ME/CFS patients can be very problematic and that is the reason why we shouldn't call LC chronic fatigue syndrome, even though they are clearly the same (in order to avoid such militant attitudes this time, obv).

So when I sent them the letter asking if the academy really supports all these claims that are clearly not supported by evidence and some even disproven and is it really a scientifically adequate lecture to talk about "bad" patient attitudes for about 50% of the time and not mention actual scientific stuff like DecodeME, etc, then in their reply they were really dismissive, saying they heard no such things (smearing kind of things) and agree with the lecture. They defended him, like it's no big deal. When I asked if I can share the reply publicly, the response came from some lower level person, saying the President of the Medical Section has already answered my letter, now go and stop bothering them with this.

A couple of months later there was another similar LC symposium, again with Janszky speaking as well. And it was almost the same lecture but he barely said anything about the terrible ME/CFS patients this time. Magic.

So this may be just how medicine deals with fucking up at the institutional level. They defend each other till the cows come home and you are the a-hole for misinterpreting but then somehow magically the thing gets toned down and not talked about anymore. Feels eerily similar.

 

Its the third sentence of the abstract!!! The first sentence describing any finding! and it is the thing they chose to try to correlate against every other test in the paper!

I agree he is making the case that the finding should be retracted.

 

NIH is receiving the kind of attention they do not want. It has grown to the point Walitt is distancing himself from the main point of his own study. Maybe the NIH is looking for a fall guy they can throw under the bus.

I hope the negative attention continues to grow.

NIH had a chance to earn an enormous amount of praise for a half way decent study. Many PWME are ready to turn any positive researcher into a demigod. If NIH had chosen a better approach it’s unreal how much praise they would’ve received.

Nath really missed a chance to elevate himself and his department.