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

Cort said:
(The first had to do with efforts to remove Brian Walitt, even though Walitt was administering the study – not doing the research
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Which we now know is BS, given all the effort preference garbage rolled out by Walitt.

Cort said:
Certainly Nath has earned our respect and trust
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He hasn't earned my respect and trust, in fact he has further reduced mine.

Cort said:
Hwang is following up on his WASF3 finding.
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I thought this was independent of the intramural study?
 
Jonathan Edwards said:
It is interesting to see this people getting themselves tied in knots about terminology.

Nath's problem is that invoking 'effort preference' as a mediator of disability would make the disability psychologically caused. But only if the effort preference was the thing that was not right. A preference not to eat gluten for coeliacs does not mean that coeliac is psychological.
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this
 
Dakota15 said:
Mods feel free to move, but sharing here if this wasn't already shared.

3/25/24: 'A Discussion with Dr. Avindra Nath: Ted Burns Humanism Award Winner’ (around 12:20 minute-mark)

Dr. Nath: “What is really challenging my mind at the moment, and I think what it is is in broad terms, it is the post infection syndromes. I say that because with the current pandemic, it's long COVID, prior to that it was chronic fatigue syndrome, and there's significant overlap. I think that’s another segment of society that has not been taken seriously. So often times, they come to the physician, and they get all the testing done and nobody finds anything wrong with them and they are labeled as being psychological, but really they have a biological basis. So, we spend a huge amount of effort trying to understand these diseases, understanding the overlap between them. We just recently published a paper showing that there are specific immune abnormalities that drive these two syndromes. There is a possibility that there is a residual antigen that is still present from the past infection that precipitated the event. There are similar syndromes: post Lyme disease, Gulf War Syndrome, sick building syndrome. They all, I think are one of the same. They just have different names. I think if you can solve one, you can solve them all. That is what I am very passionate about at the moment because I think it's a huge segment of society that's been impacted by this and we need to do something to fix this."
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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.
 
Nitro802 said:
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.
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Hi @Nitro802, welcome to the forum.
Can you tell us more about the article, such as where you hope to get it published and what particular perspective you intend to take. If you don't want to say more on a public thread you could do an Introduce Yourself thread in the members only area.
 
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.
 
Nitro802 said:
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.
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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.
 
Nitro802 said:
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.
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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.
 
ME/CFS Skeptic said:
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.
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I'd add, "and the EEfRT study was poorly conceived". Maximising completed high effort tasks was not actually incentivised. Some people realised this. One participant acted entirely in accordance with the incentivisation structure, but his results were thrown out.

So, the combination of 'high effort tasks being harder (and in some cases impossible) for the ME/CFS group to complete than for the healthy controls' and 'completion of each high effort task not necessarily contributing to a better final outcome' made for a study that should have been binned. Instead, a faulty interpretation of the flawed study was made the central finding of the whole investigation.

By the way, welcome to the forum Nitro802, it's great to have you here.
 
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).
 
:wtf:

Caffeine and sugar helped me push through lack of energy at work for a few years when I had mild/undiagnosed ME. Which certainly didn’t help with my sleep which was pretty good before my gradual onset started. And didn’t stop me ending up moderate and having to retire.

I avoid both now

so my take on this is yes like any stimulant the person with ME can do more in the short to medium term but longer term there is a risk of worsening by a level of severity or more
 
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Yann04 said:
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.
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https://www.healthrising.org/blog/2...omyalgia-chronic-fatigue-syndrome-long-covid/
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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.
 
Yann04 said:
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.
View attachment 22274
https://www.healthrising.org/blog/2...omyalgia-chronic-fatigue-syndrome-long-covid/
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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.
 
Eddie said:
This may be an unpopular opinion but I understand why they used a 1-day CPET. It makes sense that by taking measurements when PEM is induced on the 2nd day, they were trying to find the cause of the lower 2nd day CPET results, not validate them. I think it is relatively well known that the 2nd day CPET results are worse but we need to figure out why this happens. I guess they could have run the 2nd day CPET, but I think this would have just confirmed what is already known. Perhaps having the 2-day CPET results might have changed the overall study narrative, but the point still stands that finding the cause is what is important. To me the bigger issues with the 1-day CPET were the fact that the patients seemed to have less severe PEM, the small sample size and not running extensive enough testing to find the causes. If they had found the cause of PEM I would be applauding them, but unfortunately they didn't.

Also, given that the 2 day CPET is more taxing on the participants it is arguable if that is worth validating an already known result.
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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.
 
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