Kitty
Senior Member (Voting Rights)
It sounds unfortunate, but I think this is a recognised term for a collection of responses to acute illness, some of which are the result of unpleasant symptoms rather than behavioural choices.
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al
- Thread starter pooriepoor91
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It sounds unfortunate, but I think this is a recognised term for a collection of responses to acute illness, some of which are the result of unpleasant symptoms rather than behavioural choices.
It seems like Todd has no intention of writing in, so perhaps someone else would be able to draw it to the attention of Nature (Communications), attributing appropriately?
How did he go from this
Todd Davenport
@sunsopeningband
I'll note that not one scientist in any press I've read so far about the Wallit paper has demanded a retraction.
Cowards. I'm willing to go on the record and do that.
The flaws are foundational and catastrophic. The conclusions over-reach the meager data.
Retract it now.
6:03 AM · Feb 21, 2024
To this
Haven't patients been through enough and done enough for decades?
I feel like fodder for the careers of so many people while the life is being sucked out of me for 40 years.
Thank you so much to everyone going through this latest round of garbage being dumped on us.
Todd Davenport
@sunsopeningband
I'll note that not one scientist in any press I've read so far about the Wallit paper has demanded a retraction.
Cowards. I'm willing to go on the record and do that.
The flaws are foundational and catastrophic. The conclusions over-reach the meager data.
Retract it now.
6:03 AM · Feb 21, 2024
To this
Haven't patients been through enough and done enough for decades?
I feel like fodder for the careers of so many people while the life is being sucked out of me for 40 years.
Thank you so much to everyone going through this latest round of garbage being dumped on us.
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Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al
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Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al
To help navigation between the threads, links have been added to the first post in each thread. Please use the contact moderators button on any posts that you think have ended up on the wrong thread.
There's been some discussion about the single CPET, and some persuasive arguments for just using the one CPET.
The thing is, as Todd Davenport says, the measures reduce from CPET to CPET in ME/CFS (and presumably also with other pre-test activity). If it's true that CPET measures that are relatively constant from test to test in healthy people vary a lot in people with ME/CFS, then a correlation between an outcome from only one test and an outcome from some other investigation such as muscle fibre composition won't necessarily be accurate. At least if you did two CPETs, you would know if trying to make such correlations was a fraught exercise.
I guess it's pointless wishing that the intramural study had been different, but, it could and should have been. There could have been three visits to spread the studies out, for example, if the NIH really wanted to do a good study, including 2 x CPET.
I do think that we need to understand what happens when people do repeated demanding activity, in terms of exercise physiology. I still think we need that study I've talked about before where people do three CPETs, each spaced a day apart, looking for reducing performance. If we can identify something that is markedly different between people with ME/CFS and healthy controls, then we have a clue.
The thing is, as Todd Davenport says, the measures reduce from CPET to CPET in ME/CFS (and presumably also with other pre-test activity). If it's true that CPET measures that are relatively constant from test to test in healthy people vary a lot in people with ME/CFS, then a correlation between an outcome from only one test and an outcome from some other investigation such as muscle fibre composition won't necessarily be accurate. At least if you did two CPETs, you would know if trying to make such correlations was a fraught exercise.
I guess it's pointless wishing that the intramural study had been different, but, it could and should have been. There could have been three visits to spread the studies out, for example, if the NIH really wanted to do a good study, including 2 x CPET.
I do think that we need to understand what happens when people do repeated demanding activity, in terms of exercise physiology. I still think we need that study I've talked about before where people do three CPETs, each spaced a day apart, looking for reducing performance. If we can identify something that is markedly different between people with ME/CFS and healthy controls, then we have a clue.
Jonathan Edwards
Senior Member (Voting Rights)
It is recognised by a group of people who like these catch-all predigested terms. As an immunologist I never used it or even came across it. I only met it in the context of ME debate.
Terms like 'illness behaviour' are generally best avoided. They package up the immune response in ways that don't actually work half the time. Each different illness produces a different response. It is also a teleological term - defining something by what its purpose is supposed to be. That is always a bad idea in medical science because medicine is about what happens when things go wrong. You need to find out what is happening, not why it would have been useful for it to happen in some other situation that does not apply.
I suspect the term is based on doing experiments in mice where you write up behaviour because you cannot ask about symptoms. We are not mice.
livinglighter
Senior Member (Voting Rights)
Todd Davenport said:
Todd Davenport said:
This definitely looks like something that needs to be addressed.
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It sounds like he has the personal resources / inclination to call for a retraction in a casual Twitter thread, but not to do a proper write up and submission.
For those who have attempted to correct shoddy research in the past - is it better for there to be more letters each covering a distinct area of failure, or fewer and more comprehensive ones?
glennthefrog
Established Member (Voting Rights)
I get all of that and muscle pain on top, it feels like if my muscles are "full of acid". It would seem to me that PEM can differ from person to person, what do you think?
glennthefrog
Established Member (Voting Rights)
they should repeat the brain study in people with all sorts of chronic diseases in which "fatigue" is a major component in order to find if their brains respond in the same way to the hand grip test as their ME counterparts. I believe they'll respond in the exact same way, proving that anybody with a "fatiguing" illness will avoid exerting maximum effort for a given task, wether consciously or unconsciusly. Once the results came in, they should retract the conclusions of their paper regarding "effort preference". Maybe the problem is that there are other fatiguing diseases but not diseases with PEM... the ideal would be to repeat the study in people who doesn't have ME but has PEM, but I don't no if such thing exist
Thanks - is there a form of words you would suggest i.e. instead of 'illness behaviour'?
I'm thinking of the situation where you're responding to the NIH intramural study (Walitt et al - *1 below]. I.e. by suggesting that NIH should fund research to actually look for the cause of disrupted signalling suggested by Walitt et al [*2 & *3 below].
Perhaps I've answered my own question i.e. I've avoided using the term "illness behaviour"!
*1) https://www.nature.com/articles/s41467-024-45107-3
*2) "Severe COVID-19 and long COVID are associated with high expression of STING, cGAS and IFN-α"
*3) "Unique pathways downstream of TLR-4 and TLR-7 activation: sex-dependent behavioural, cytokine, and metabolic consequences"
Kitty
Senior Member (Voting Rights)
I do too, but forget to mention it as a symptom. It's been there every day of my adult life, so I can't even remember not having it.
I think the 'poisoned' feeling may be different in me. Some people seem to experience it with every PEM episode, others get it whenever they have a more severe bout.
I've experienced it daily for months or years, but only during initial ME onset in the 1970s and three subsequent catastrophic crashes. It doesn't occur even when I feel terrible with PEM, only during events extreme enough to shift my ME status from moderate to severe.
Paddler
Established Member
Would the NIH consider performing same psychology based testing on cancer patients after receiving chemotherapy. Would they make the same argument that cancer patients are exhibiting avoidance behavior?
V.R.T.
Senior Member (Voting Rights)
As a good literature student I knew my Freud and trauma theory, and was well informed on mental health issues due to suffering and having friends who suffered. Unfortunately this was a major factor in accepting a psychological explanation for my illness.
Dakota15
Senior Member (Voting Rights)
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.”
“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.”
glennthefrog
Established Member (Voting Rights)
they're not stupid, the public is sadly so dis-informed and disinterested that they buy into their lies, and they know they will
Keela Too
Senior Member (Voting Rights)
It’s like the name Chronic Fatigue Syndrome all over again.
So Koroshetz thinks this is a very important, completely valid finding. I don’t get it. 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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