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

That one of applicability of subject sample is interesting as an old-chestnut we've seen highlighted as an issue eg in the Nice analyses for the 2021 guideline of therapist-delivered.

It is a really relevant issue for ME/CFS to get sorted. It does feel like it needs rules to be considered and ironed out.

Whether misdiagnosed or not, when does 'spontaneous recovery' also mean exclusion is appropriate is another question - made even more pertinent when yes the % isn't going to always be covered by probability or something you can glance off as 'x% of people recover' (I thought it was less likely if they've been ill for a longer time), perhaps more likely if the nature of the trial itself is such it would be at best a daunting consideration for those with more experience and worse illness (so knew where it might lead them due to bitter experience)?

 

I think this one is one of the key points, the invented 'metric' in itself. WHich of course was then combined with the hand-grip test as if it wasn't the invented one but the validated one.

 

Filled out the HHS Office of Inspector claim, as I hadn’t done that before (did AIRIO, HHS Office of Integrity, and submitted FOIA)

 

If anyone lives in the US wants to contact congress people, this site will tell you all your representatives.

 

I reached out to all of my elected officials right after the study release but the honest truth is that there’s not much they can really do under the current separation structure of NIH and Congress. I’d love to be wrong but that was my takeaway and also a reason that there’s a restructure proposal in place from one party in Congress at the NIH (amongst other concerns relating to oversight concerns)

 

I'm still reading through the 34 pages, but I noticed this in Treadway's README if you download the 2022 software.

"It should be noted that a proportion of subjects may exhibit a pattern of choosing all Easy or all Hard choices (aka “single responders”). Single responders must be treated with care, as they can exert significant influence on primary questions of interest. While we generally recommend against exclusion of otherwise valid data, we recommend that primary analyses of interest should be run with and without single responders to ensure that they are not responsible for creating (or suppressing) an important effect in the data.

 

That's wild. It sounds like they're just saying choose whichever option returns the largest desired effect.

Do they go on to explain how to decide whether or not to include single responders?

 

Makes sense. The sensitivity analysis carried out by people upthread, with the single responder included, showed that the effect was changed (in favour of the null hypothesis). This means that the main analysis was not robust.

 

Good catch. This reads a lot like poor design being blamed on users. The design of this test is very poor, it doesn't even apply to this problem, and how the NIH used it is even worse. They even freaking excluded the only player who actually followed the optimal strategy.

But no, it's the users who are wrong. Pffft. Unserious clown show.