NIH study - where to start?

I have been out of the loop for a while so I have not read (and am not currently able to) the two long threads on the forums about the NIH study and the use of the EEFRT questionnaire.

Have there been posts in those threads that have attempted to summarize the criticisms made so far, or perhaps an external blog post? An overview would help tremendously with catching up.

Thank you to everyone who has been working on debunking this study.

Moderators - I apologize if I should be replying to the existing threads instead of creating a new one, but I thought it would help people in the same situation as me find what they need more easily.

 

As a note, I have skimmed through Jeannette Burmeister’s blog post but it does not seem to be addressing in depth the methodological concerns as they are being discussed here and which are the ones I’d like to know about.

 

The most egregious fact seems to be that the claim that PWME show a different 'effort preference' is at best a weak statistical thing and would not be there if the authors had not excluded one of the normal control results as being 'aberrant'. In other words, a disinterested sensible interpretation of the findings is that they were most likely entirely negative and certainly not positive enough to make the interpretation plausible.

Another serious problem is that subjects were made very aware of their status as patients and that the 'effort' tests were designed to find a difference in behaviour in relation to exertion. That means that any result could have occurred because patients were 'fulfilling a role' - which most people find it very hard not to do. Their mental processes would have been totally different from those of controls simply because they knew they were the test cases. So the fMRI data showing brain activity are completely uninterpretable.

 

After about 7 pages of discussion of the EEfRT task, I tried to summarise what we as a group had figured out so far by pulling out key observations. Hope this will help.

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

Edit: The authors of the NIH study have proposed that the fact that pwME chose a lower proportion of hard tasks in the EEfRT task demonstrates that we have altered "effort preference". People on here think that it doesn't show that at all.

 

Study claimed that there was ongoing/chronic antigenic stimulation that was causing problems but they identified NO antigen.

Had they identified said antigen, study would have been a game changer…. But they did not.

 

Laughing - back to that @Brian Hughes cartoon ---- apart from the subjective outcome criteria ++++ not that bad a study!
Whatever you do don't mention the $8 million & 8 years --- it took to produce this!

 

I am actually working on a blog post for this purpose, but it's taking quite some time. I'm glad to have found this forum as the folks here are discussing the same issues I noted during my detailed read-through. I am also going through most of their citations to determine whether the information they present is supported by the references, and how many of the ME papers they cite take a BPS approach. Hopefully in the next few weeks I will be able to write everything up.

Also, hello, this is my first post!

 

Welcome, then, Janna! Sounds as though you'll be a good person to have on board.

 

Hi, Janna, and welcome to the forum. Look forward to reading your blog.