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

Dakota15 said:
Just sharing this message today from Koroshetz, for visibility, when I had asked for paper amendment of ‘effort preference’ term.

“Understand the anxiety but it’s very important that the community understands the finding.

To simplify how the brain works I could say that the brain circuits are constantly estimating the difference between the effort required and the reward to be gained from executing an action. This applies to all behaviors, even to what I am typing now. This is easier to understand in estimating the degree of force you need to exert to pick something up something, but even the more automatic behaviors like whether we are “hungry” enough to eat. So the finding is very important. In the persons with ME/CFS the circuits that do this estimation of effort are malfunctioning. They even see an abnormality in brain activation related to this finding. They see alterations in dopamine metabolites (potentially related to the reward signals). And they speculate that it is abnormalities in the immune system that are driving the abnormality.

So this has nothing to do with “psychological”, this is a real abnormal finding in how our neural systems are supposed to work.

Planning a hybrid workshop to explain the findings to the subjects and the general community soon.”
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My bolding. Translation. “Planning a gaslighting workshop to make others think using psychological terms is not psychological.”

It would be less work to correct their flawed paper but that would be admitting to a mistake. They can’t admit to a mistake, at least not publicly.
 
Braganca said:
These are smart people. How can the patient scientists on this forum find so many flaws in their thesis and interpretation that they do not see??
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High profile scientists are often stupid unfortunately. Perhaps particularly people who become figureheads. The people on S4ME are amazing but I don't think they are so unusual. The just have a bit of nous, and a lot of academics don't.
 
Andy said:
Among the many physical and cognitive complaints, one defining feature of PI-ME/CFS was an alteration of effort preference, rather than physical or central fatigue, due to dysfunction of integrative brain regions potentially associated with central catechol pathway dysregulation, with consequences on autonomic functioning and physical conditioning.
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Looking again at this sentence in the abstract, it has three components, A, B and C.
A=effort preference
B=dysfunction of integrative brain regions
C=consequences on autonomic functioning and physical conditioning.

The claim that they have actually found B is a bit of a joke but we can take B to be whatever bad central involuntary signalling is occurring (~flu signals).

When I originally read it, it sounded over speculative but not too unreasonable. But there are two ways to read it.

1. B causes A and C.
2. B causes A which causes C.

1. is roughly what I think may be going on. 2. is totally implausible.
The sentence can be read either way. In fact it is not good English because the only cause the 'consequences' can logically be attributed to is '.. was an alteration', which makes no sense.
 
The phrase 'effort preference' seems to be the psychologised version of 'exertion intolerance'.

The Wikipedia article on preferences in psychology, economics, risk preferences etc is interesting. I have only skimmed it.
https://en.wikipedia.org/wiki/Prefe...links-,Psychology,Lichtenstein & Slovic, 2006).
I wonder whether we could bring in the idea of risk preference, with the pwME facing significant risk of worse symptoms in pushing to work faster and harder, whereas there was no risk to HV's.
 
Their terms are so slippery.

They suggest one thing to the world, whilst the term “supposedly” means another thing to experts.

Personally, I don’t like “risk preference” @Trish simply because most of the choices we make are not what we would prefer if we were well.

I think we have very tough decisions to make. (I thought about using the word Choices at first, but again that could be interpreted as a preferred thing, so I abandoned that idea).

So maybe our preferred phrase could be something like “effort decision”?

I agree there is an element of risk in our decisions, but I think to introduce “risk” into a term, might get easily interpreted to suggest we are all gun-ho, and doing crazy risky things like cave-diving!
 
Sean said:
cost management
trade-off management
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Sounds much better, but what about when they get to the point that they're no longer making management decisions? It's possible I've misunderstood some of the gobbledegook in the original text, but this is my concern.

I don't see how the test can show whether the outcome is the result of decision-making or muscle failure. The risk is that it'll always be interpreted as decision-making, whereas in people with ME it is likely to be exhaustion some of the time.
 
Dakota15 said:
Just sharing this message today from Koroshetz, for visibility, when I had asked for paper amendment of ‘effort preference’ term.

“Understand the anxiety but it’s very important that the community understands the finding.

To simplify how the brain works I could say that the brain circuits are constantly estimating the difference between the effort required and the reward to be gained from executing an action. This applies to all behaviors, even to what I am typing now. This is easier to understand in estimating the degree of force you need to exert to pick something up something, but even the more automatic behaviors like whether we are “hungry” enough to eat. So the finding is very important. In the persons with ME/CFS the circuits that do this estimation of effort are malfunctioning. They even see an abnormality in brain activation related to this finding. They see alterations in dopamine metabolites (potentially related to the reward signals). And they speculate that it is abnormalities in the immune system that are driving the abnormality.

So this has nothing to do with “psychological”, this is a real abnormal finding in how our neural systems are supposed to work.

Planning a hybrid workshop to explain the findings to the subjects and the general community soon.”
Click to expand...

Some patients might be inclined to give them the benefit of the doubt if the term they chose for this "phenomenon" didn't sound like it came straight out of a GET-manual. For me, appointing Wallitt when they started this study removed any such inclination.
 
I'm not able to catch up to this thread yet, but a reaction to couple of things on this last page:

Effort syndrome was classified in ICD's 7, 8 and 9 (and prob. also 6) in the psychiatry section, as a cardiovascular psychoneurosis, psychogenic heart & cardiovascular symptoms. Synonyms were cardiac neurosis, cardiovascular neurosis, soldier's heart, physiological malfunction arising from mental factors. (It got dropped as a term in ICD-10 (1992), where it got absorbed in F45.3, somatoform autonomic dysfunction of the heart and cardiovascular system.)

In the late 80s there was an attempt by Stokes et al to conflate it with neurasthenia and ME/CFS, and to say that their results "clearly point to lack of central drive or motivation".

The people who got diagnosed with "effort syndrome" a century ago might at times have had a similar condition to what is happening in ME/CFS, but apart from the similarity because of the word "effort" in the name and a 35+year old attempt to use it on ME, it doesn't apply to the current attempt to make effort preference happen, because it isn't cardiovascular oriented or psychogenic, nor is effort syndrome about aversion or behavioural choices. (This is just some historical info as I've seen it pop up in relation to "effort preference" discussions a couple of times now)
 
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Good letter @Dakota15
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Trish said:
I wonder whether we could bring in the idea of risk preference, with the pwME facing significant risk of worse symptoms in pushing to work faster and harder, whereas there was no risk to HV's.
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I'd also hesitate to go look for a more palatable replacement term. It gives worth to the notion that the phenomenon of not doing an activity because you can't/won't is an important "thing" that should be seriously studied behaviourally in ME/CFS as something that matters.

(Edited to add: just to be clear, I think the whole thing is a dumpster fire that should be removed, not that the term should stay.)
 
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Solstice said:
Some patients might be inclined to give them the benefit of the doubt if the term they chose for this "phenomenon" didn't sound like it came straight out of a GET-manual. For me, appointing Wallitt when they started this study removed any such inclination.
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I'm also still disturbed that the term resembles a claim from a paper by Knoop & co that Walitt et al referenced (ref 35):

Walitt et al said:
"one defining feature of PI-ME/CFS was an alteration of effort preference"
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Van der Schaaf et al said:
"these findings link fatigue symptoms to alterations in behavioural choices on effort investment,..."
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They're saying the same linguistically, ME is defined by an alteration in behavioural choices on effort investment.
The studies themselves are as far as I can tell quite different in detail, although (very) roughly they both look at a brain region and link it to alterations in behavioural choices on effort investment.

In his work Walitt takes the angle of aversive symptoms, Knoop of cognitions, but to me it looks like they both like to scan a brain and then link their favored cognitive or behavioural pet theories on ME/CFS to those.

And @Lindberg just pointed out on the Wessely thread that on hos web page, he says:

Simon Wessely said:
I would hazard a guess that the most fruitful area of research [into CFS] will come from a combination of neurosciences and psychology, and will be focussed around the sense of physical effort and effortful cognition, but we shall see.
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Although that is an older quote (abt 2011/2012), it's one to take along.
 
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Another dumb question from me, not having the effort preference to wade through the protocol to get this clear:

Were the patients chosen by Walitt and rubber stamped by the expert panel? Did the expert panel chuck some out? If not and the selection was made by Walitt we do have a serious query about just what these patients were. For less than 10% to fulfil criteria is odd.

Something that I have raised before is that for any given chronic disabling illness there are probably more people who think they have the illness and at some time have been diagnosed with it, but do not in fact have it, than there are people with the illness (RA for example). Since ME is based entirely on symptoms and the list is widely available to anyone wondering if they have ME it would be perfectly possible for a physician who thinks ME is really just thinking you have ME (more or less Wessely's definition) to pick a cohort of people for whom this applies - and who may fairly readily 'recover'.
 
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