Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

Which we now know is BS, given all the effort preference garbage rolled out by Walitt.

He hasn't earned my respect and trust, in fact he has further reduced mine.

I thought this was independent of the intramural study?

 

this

 

well he's blown his chance then even if he really believes this. He has let himself get persuaded, or maybe was already there himself, but why take lots of research findings that were of the format where small samples did work and then blow them by allowing them to reported under a framework where they'd been crowbarred to fit something that didn't actually have any results in the first place? And the person in charge of it isn't even someone who was an expert in that area, not quite sure how or why Walitt got into all this given his background.

Nath should know better than to not just be able to identify what is potentially 'real' as a finding and put into context what about that is theorising of what it could mean, and what is substantiated about how it could fit together and report appropriately.

 

Hello,

I am writing an article about Effort Preference and would like to interview those who've dug into this paper and are interested in talking whether on background or for quotes. Please DM me to set up on a time to talk. Or we could even set up a Zoom to discuss with multiple people at once.

 

Great idea. I did an intro in the members section. The article will be published in the Sick Times. My goal to dive deep into the EEfRT test results from me/cfs intramural paper, highlight issues, get feedback from me/cfs researchers on whether they view these results as important, and try to understand why the results were so prominently featured.

 

Why do you want to write about Effort Preference?

The main mistake the authors make is looking at any differences and assuming they are maladaptive when evidence shows they are actually positive adaptations.

As Jeannette Burmeister has already written, the "effort preference" claims is a questionable interpretation when patients had better optimised behaviour in terms of monetary gain compared to controls, and improved their behaviour over the trials.

The interpretation of the reduced TPJ activity is similarly flawed, and could instead be interpreted as a positive adaptation:

"Expertise-related deactivation of the right temporoparietal junction during musical improvisation"
https://www.sciencedirect.com/science/article/abs/pii/S1053811909009525

In musicians this means the higher levels of the brain are less focused on the precision of motor movement and more focused on the creative aspects of musical improvisation.

And no you can't quote me on this.

 

@Janna Moen PhD

 

There is more info on the EEfRT data in this thread:
https://www.s4me.info/threads/use-o...s-2024-walitt-et-al.37463/page-24#post-520697

Great that you are highlighting this issue. I would like to help out in chat or email to point out the problems but a video call is unfortunately too taxing for me.

I think the main issue is relatively simple: the authors did not control for the fact that patients are ill and that the experiment tasks required more effort from them.

 

And from what I've read from the sharp-eyed folk who combed through it, the claim of a non-null result depended on that data being thrown out.

 

I knew it wasn’t perfect by far but I had somewhat of a standard for healthrising’s pieces. I’m extremely disappointed to see this. Since Cort seems to have subscribed to the Wallitt ideology, I fear much more dangerous stuff will follow.

https://www.healthrising.org/blog/2...omyalgia-chronic-fatigue-syndrome-long-covid/

 

Uh oh. I've also been significantly more worried after his almost nonsensical GWI post.

 

To be fair a post was made just the other week about some dodgy German exercise physiologists way to “exercise through” ME and Long Covid. So perhaps I should never have trusted the blog. It seems that it takes every abstract/thing a researcher says as truth with little scrutiny (except the obviously psychosomatic ones, although Wallitt slipped through).

 

I've lowered my coffee consumption to 2 cups a week and feeling much better for it. Coffee depletes my energy! It's literally the difference between drinking a cup and not being able to go for my walks in the evenings and not drinking a cup and being able to go out.

 

The problem is that Cort doesn't understand what perception of effort is (in a neuroscience sense) and why fatigue leads to an increased sense of effort. It's not the sense of effort that is wrong, there really is an increase in the (top-down) level of effort required to sustain a task because afferent feedback leads to reduced excitability at the lower levels of the brain (including the motor cortex). Caffeine can increase that excitability but it won't stop the afferent feedback which is happening for a reason.

 

I'm only page 20 of reading this thread so this may be addressed later. But by not doing a 2 day CPET they were able to keep "rather than physical or central fatigue" as a part of the main finding in the abstract. Had they done the CPET, saw it reduced on 2 day they couldn't blame it on your brain vs. systemic oxygen or muscle issues etc.

I agree doing two full weeks of tests and a 2 day CPET would be brutal. If fact, day 1 of the 2 day CPET should only be undertaken completely rested so it would have to be the first thing done (And really hard if you just got off a 10 hour flight or something)

In an ideal research setting you'd do one block of testing and then once rested return for the 2nd block which would only be the 2 day CPET and blood, urine, resting metabolite testing whatever (Anything interesting you could try to differentiate between a resting and PEM state), with collections on day before, cpet day 1, cpet 2, and the morning after. And I agree it would almost certainly be a waste with so few participants.

 

Did the raw data for the autonomic testing make it on to mapMECFS?