Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper

https://thesicktimes.org/2024/09/27...ence-claims-in-their-intramural-me-cfs-paper/
I think that's a really excellent summary of the issues.

From the end of the article about the author and the acknowledgements:
John Bolecek is a father of two young boys, a husband and a former bicycle and pedestrian transportation planner who has been disabled by Long COVID since early 2022. When he has energy he advocates for Long COVID and ME/CFS research and writes articles.

Acknowledgements: Thanks to the members of the Science for ME forum for the chart, the extensive analysis, and discussion of the EEfRT, and also to Jeannette Burmeister, attorney and longtime ME advocate, who wrote a four-part series titled “The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” where many of these issues and more are discussed in detail. To join Jeannette’s call to action for the paper’s retraction visit the bottom of part four. This article would not be possible without their work.

I think it is worth ongoing pushing on that Walitt paper. The effort preference discussion in the paper is very close to hate speech (and certainly provides fodder for hateful patronising attitudes), wrapped up in the trappings of a scientific investigation - and all the more damaging for that.
 
Matters Arising Manuscript Update:

Finalizing everything took a bit longer than anticipated, but I’m pleased to share that the manuscript was officially submitted to the journal today! I’ll keep you all updated once we receive a decision, but since reviews typically take some time, no news will likely be good news for the next few months.

A heartfelt thank you to everyone who contributed, both the co-authors and those who helped shape the work before the "official" manuscript process began. I’m hopeful this will make a meaningful impact, and it wouldn’t have been possible without all of your hard work.
:)
 
Do you know whether there is an audience outside of that or whether larger news outlets sometimes pick up on articles?

My sense is that they're known now by LC and ME/CFS researchers and policy types as well as patients, at least the ones I know. It's obviously more US-focused at this point. But the fact that they got an interview with the NIH head means policy-makers are paying attention to them.
 
Hi everyone, it’s been some time since I last posted, but I’m very excited to share that our critique of Walitt et al.’s effort preference claims was finally published today! The article is titled Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome and can be found at the following link: https://www.frontiersin.org/articles/10.3389/fpsyg.2025.1593269

A dedicated S4ME thread for discussion is already underway: https://s4me.info/threads/unwilling...igue-syndrome-2025-kirvin-quamme-et-al.44601/

This article wouldn’t have come together without this community—thank you to everyone who contributed, and especially to my co-authors. It’s been quite a journey to get it published. I hope to post more soon about what went on behind the scenes, but in the meantime, we’re happy to answer any questions about the process and decisions made along the way.

Please share the article with your networks and let us know what you think!
 
Hi everyone, it’s been some time since I last posted, but I’m very excited to share that our critique of Walitt et al.’s effort preference claims was finally published today! The article is titled Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome and can be found at the following link: https://www.frontiersin.org/articles/10.3389/fpsyg.2025.1593269

A dedicated S4ME thread for discussion is already underway: https://s4me.info/threads/unwilling...igue-syndrome-2025-kirvin-quamme-et-al.44601/

This article wouldn’t have come together without this community—thank you to everyone who contributed, and especially to my co-authors. It’s been quite a journey to get it published. I hope to post more soon about what went on behind the scenes, but in the meantime, we’re happy to answer any questions about the process and decisions made along the way.

Please share the article with your networks and let us know what you think!

Outstanding. Thank you.
 
I don't agree: not only do I not understand how they came to say that they "demonstrated" that "a brain abnormality makes it harder for those with ME/CFS to exert themselves physically or mentally.", but I find the fact that these comments are not the info you get from the paper problematic.

I'm just commenting on this snippet relating to "effort preference" (a quick look at the full article makes it seem like a good one), but what's happening in this snippet is hella weird IMO: to me it reads they're trying to portray the paper's claims in a more palatable-sounding way, which comes across like they are trying to polish the effort preference turd. (And the question for me is then if they are doing it because they are aware that being honest about their shit would make them look bad, or if they're trying to reshape what they allowed in the paper while not agreeing with it - and either would be bad.)

The remark that when "the brain is telling ME patients" not to make an effort it is not "voluntary" irks me a lot. This is somehow meant to make the effort preference concept sound better, but to me it doesn't; sticking the reason for illness or any other unwanted "deviation" from how you "should be" on disablist/prejudiced notions and then saying that the patient is doing that not on purpose but subconsciously is a boring old trick (you are blind because you subconsciously wanted someone else to be blind, you have spasms because you subconsciously want attention, you are a lesbian because you subconsciously want to be a man, etc, etc, etc). The person it concerns is demoted to being an unreliable narrator about themselves, while the person saying it usually feels entitled to fill in what that subconscious thing really is, according to their prejudiced preferences.
So personally I consider this is used as a fig leaf, a shield to protect the authors when pointing out that their paper is disablist, and quite the red flag.




Walitt et al says:









About the grip strength it says that

All these sentences imply choice, preference etc - as far as I see it is nowhere stressed or even mentioned that this would even be unvoluntary. The only time the word "unconscious is used in the paper is
when linking "effort preference" to other test results, with a reference [ref 35) to a Knoop & Van der Meer publication that opens its background section in the abstract with "Chronic fatigue syndrome (CFS) is characterized by disabling fatigue, which is suggested to be maintained by dysfunctional beliefs. Fatigue and its maintenance are recently conceptualized as arising from abnormally precise expectations about bodily inputs and from beliefs of diminished control over bodily states, respectively." and concludes "alterations in behavioral choices on effort investment, prefrontal functioning, and supplementary motor area connectivity, with the dorsolateral prefrontal cortex being associated with prior beliefs about physical abilities"

(@dave30th, you might be interested in this)
I'm replying to this in order to 'boost' it given the large number of papers and the important point @Hutan has raised about this paper and its wording bordering on disability bigotry.

I urge anyone reading this comment to click on the arrow in the start of the quote above to go to @Arvo 's original post which contains the quotes from the original paper that they have picked out

An important issue to raise because if we don't then anyone can charade any dodgy propaganda under saying it was a 'research paper' even if the research didn't actually address the issue, and the paper didn't really talk about the research (or its methodology) but was mainly opinion-based.

This NIH one is extraordinary because the least sure part of the methodology seems to be allowed to lead how the other parts, and which bits of the other investigations like hand-grip or MRIs are then interpreted or discussed - through some strange effort-preference framing.

A bit of a side note - partly because you mentioned the keyword of 'Knoop'. It makes me think about Heins et al (2013) which it feels like I mention every week, but seems to be the paper from which the bps learned not to ever measure the objective activity - because it is the paper where they basically gaslit participants with both CBT and by measuring objective activity (for themselves) but not reporting that objective activity to participants so they actually thought they were doing more when they weren't etc. And some way of cross-analysing some of the concepts in this with that and its ideology.

Lying to people and it being so effective they were categorised as either fast or medium responders didn't make their objective activity any different or more capable from the non-responders in the long run. And I assume that it all excludes drop outs, as their studies always do of course so those who got harmed don't get to count.
 
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