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

Nitro802 said:
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/
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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.
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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.
 
andrewkq said:
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.
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:)
 
EndME said:
Do you know whether there is an audience outside of that or whether larger news outlets sometimes pick up on articles?
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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.
 
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