2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

rvallee said:
That is really impossible to accept. By definition a healthy volunteer cannot have POTS. POTS is rather rare, it's actually hard to find people with POTS, although mostly because of systemic opposition to its existence, but also because of how ridiculously unlikely it is that someone with POTS would decide to be a healthy volunteer in a clinical study. The precise number of healthy controls with POTS in any cohort of a clinical study should be zero. Full stop.

They had this responsibility. They failed at it.
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Using family members as their 'healthy controls' appears to have been a huge mistake.
 
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Turtle said:
In reply to (only part of) the question @andrewkq had asked Walitt hangs his head in the noose. He calls it volitional.
The brain of a pwME signals and "Brian" construes it into volition.
Before I thought he wanted to spare pwME by pointing to TPj, the patients can't help it, but here he shows his true colours.
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For Walitt it's both "conscious and unconscious". He was criticizing the terms effort allocation and effort-based decision-making for not including the unconscious part, and saying that they went with "preference" instead because that would include the unconscious part. Nath, on the other hand, was very clear in interviews that it was "not voluntary" (this is from memory so check before quoting).

Here's what Walitt said again for anyone searching for it:
The answer is actually pretty simple. I think Nick did a really wonderful job talking about what effort preference is for us, and particularly the unconscious nature of effort in that aspect of it. The EEfRT task is typically framed as a measure of reward motivation, effort allocation or effort-based decision-making. These terms effort allocation and effort based decision making framed task performance as an entirely volitional action. We chose effort preference to reflect both the conscious and unconscious aspects that guide the moment to moment choices that are made during the effort test.
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Wallit: .... "We chose effort preference to reflect both the conscious and unconscious aspects that guide the moment to moment choices that are made during the effort test."


Yeah, well, try measuring the supposed "unconscious aspects that guide moment to moment choices"

.
 
It's like deciding to use the term "movement preference" instead of "reflex" to describe what your leg does when someone taps your knee in the right spot. And then getting offended when people tell you you're creating a false impression.
 
Eleanor said:
It's like deciding to use the term "movement preference" instead of "reflex" to describe what your leg does when someone taps your knee in the right spot. And then getting offended when people tell you you're creating a false impression.
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Always reminds me of this:
Usage of Sexual Preference
The term sexual preference as used to refer to sexual orientation is widely considered offensive in its implied suggestion that a person can choose who they are sexually or romantically attracted to.
https://www.merriam-webster.com/dictionary/sexual preference
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[not sure if this warrants a different thread, but thought I'd ask and mods feel free to move where applicable]

On Monday, May 6th is the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

We know one of the segments is: “Deep Phenotyping of Post-Infection Syndromes and the Way Forward” with Brian T. Walitt, M.D., M.P.H. and Avindra Nath, M.D. | Question and Answer (Q&A)

I know or sense they may just cherry-pick certain questions they prefer to take, but assuming they’ll answer these live Q&A’s on Monday, do any here have recommendations for highest priority questions to send in? (I know we could take up a whole week sending in all of our deep concerns, but just taking inventory from any here what is best for them to try to answer or the best path forward)
 
Evergreen said:
For Walitt it's both "conscious and unconscious". He was criticizing the terms effort allocation and effort-based decision-making for not including the unconscious part, and saying that they went with "preference" instead because that would include the unconscious part. Nath, on the other hand, was very clear in interviews that it was "not voluntary" (this is from memory so check before quoting).

Here's what Walitt said again for anyone searching for it:
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They seem incapable of considering the far likelier explanation: that this effort allocation is a biological mechanism based on the body's ability to function. So with that in mind, it wouldn't be making a choice, conscious or not, rather it's limited by a constraint. From that perspective, everything is working as intended, just as a machine that doesn't work because it has a wrench in its gears is not turning because it has a freaking wrench blocking its gears is working exactly the way this machine does when it has a freaking wrench blocking its gears.
 
Hutan said:
Nath - future directions
Therapeutic approaches - shows the diagram that ends with teh person with decreased activity.
Is it possible to intervene early in the immune system?

He suggests that downstream may be self-perpetuating and they see that in pain syndromes.
Will need combination therapies to address that. (sounded suspiciously behavioural)
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I picked up on that also. I think he might have been suggesting the lowered effort preference and resultant reduced activity had become self-perpetuating and so you'd have to address that in addition to any upstream issues.


The fundamental concern I have with this study is how little NIH considered or accounted for PEM, outside of their qualitative work to characterize it. And the result is a pathophysiology hypothesis in which effort preference plays a key role - via altered effort preference leading to reduced motor engagement leading to reduced motor output leading to reduced activity.

Even if we were to accept for the moment the validity of EEfRT, I'm struggling to see how NIH's hypothesis of the disease can be reconciled with what's known from 2-day CPETs about PEM and the nature of impaired energy metabolism. Or that PEM can come from cognitive overexertion.

Did anyone hear them say anything about this beyond Nath acknowledging they can't say anything about the pathophysiology of PEM?
 
I dont get this "lowered effort preference". I have ME/CFS since 2000. First 8 years I had full time job, I did sport (always felt terrible after), walked at least 6 thousand steps a day if it was 40 degrees or minus 20 outsides. Had hobbies, climbed 2 500 m hills one day, in the evening I drunk some beers with my friends, in the night I felt i am going to die, felt still terribly in the morning but I climbed another 2 500 m hills.
I felt terribly exhausted every day but I didnt understand what´s wrong with me, I was young and the doctors said, that I have to ignore it, it will go away.

After 8 years of this madness I completely collapsed, was just able to walk some hundred meters, to sit for 1 hour and 23 hours a day I was just in bad. After year it slowly improved, I had to live with my wonderful parents and I started to work slowly from home even if it was not necessary, just laying in bed with my computer, I was walking every day, was disciplinated to not go too much through my limits, doing little things again, doing some stuffs for ME/CFS community but still often exhausted.... Many healthy people around me are lazy, they dont move at all, they cancel a lot of activities just because they are tired but on the end it´s ME/CFS patients who have lowered effort preferences.
Before ME/CFS I was a professional football player. I can tell you, that already during this period I learnt what is to be exhausted. After each match I felt exhausted but I would still be able to slowly run next 10 kilometers.
But to be exhausted like a sportman it´s nothing close to ME/CFS exhaustion. When I am exhausted I am not able to walk 100 meters. If you check many ME patients lifes and you see what they achieved with this diagnosis and with limits they have, they simply cannot have lowered effort preference.
But english is not my language, maybe I dont get it right. But I think quit opposite, ME/CFS patients have higher effort preference.
 
I completely agree with you, @tuha. Throughout my ME/CFS I have repeatedly pushed myself to and through exhaustion, pain, nausea etc etc., and crashed often as a result, especially while I was still working. They have no idea with their effort preference nonsense.
 
The answer is actually pretty simple. I think Nick did a really wonderful job talking about what effort preference is for us, and particularly the unconscious nature of effort in that aspect of it. The EEfRT task is typically framed as a measure of reward motivation, effort allocation or effort-based decision-making. These terms effort allocation and effort based decision making framed task performance as an entirely volitional action. We chose effort preference to reflect both the conscious and unconscious aspects that guide the moment to moment choices that are made during the effort test.
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How could one possibly even begin studying unconscious energy allocation aspects of an energy limiting condition? Why spend so much effort into including something you didn't even try to study?

If you want to study “unconscious effort allocation” why would you do so by making the more rewarding task be harder than the easier task which automatically induces the confounder of “conscious pacing” and then not correcting for this? Because everybody with ME/CFS will tell you that pacing is a conscious decision.

It is almost as if the EEfRT isn't designed to measure unconsciousness (and indeed to the surprise of no one "unconsciousness" and "EEfRT" have 0 hits on Pubmed - and one study using an extremely modified EEfRT like set-up had to introduce modifications to supposedly study "consciousness" & "unconsciousness", which in itself seems extremely speculative, even comes to the conclusion that in Schizophrenia the unconsciousness is no different and that it is the "conscious effort allocation" that differs, so it's abundantly clear that results can't just be attributed to unconciousness to ones own liking).

It is likely that people with untreated Hashimoto's and Graves run less marathons than healthy controls whilst they are ill, but would anybody sensible deduce that, that has something to do with unconsciousness? Even more so if you’d have 2 marathon runners, one already having run 2 marathons that day, the other fresh as a daisy and you let them choose a training program for the remainder of the day, which either consists of completing an easy training session or completing a hard training session, does the result not seem rather predictable and would you conclude that the result has anything to do with unconsciousness? How would this be any different from the experiment in the study?

If anything this makes it much clearer that one would most definitely have to use calibration phase as part of the EEfRT. Otherwise any discussion of unconciousness is clearly obsolete to begin with.

What does he mean by unconsciousness?

Is he talking in terms of Freud, i.e. repressed thoughts and childhood trauma? But even Freud seemingly understood that one would somehow have to “unlock the unconscious state” (whatever that may be, if it even exists), you can’t just give 2 people with different physical capabilities a choice between doing 2 differing physical tasks and then argue that their choice reflects unconsciousness without correcting for their physical abilities.

If he is talking in terms of some antigen causing changes in the CSF or immune activation, which is the central hypothesis of the study, why involve unconsciousness at all? How many studies of people with brain tumours try to understand whether changes are due to unconsciousness differing and how would you know which changes aren't precisely because of a brain tumour with the unconscious state having remained constant?

It seems with every explanation the authors conclusions seem even more dubious...

rvallee said:
just as a machine that doesn't work because it has a wrench in its gears is not turning because it has a freaking wrench blocking its gears is working exactly the way this machine does when it has a freaking wrench blocking its gears.
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How naive of you! This machine clearly has childhood trauma manifested in its unconcious mind that can only be revealed and treated by analysing its dreams, the wrench is simply a mind-body manifestation of this trauma.
 
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EndME said:
How could one possibly even begin studying unconscious energy allocation aspects of an energy limiting condition? Why spend so much effort into including something you didn't even try to study?

If you want to study “unconscious effort allocation” why would you do so by making the more rewarding task be harder than the easier task which automatically induces the confounder of “conscious pacing” and then not correcting for this? Because everybody with ME/CFS will tell you that pacing is a conscious decision.

It is almost as if the EEfRT isn't designed to measure unconsciousness (and indeed to the surprise of no one "unconsciousness" and "EEfRT" have 0 hits on Pubmed - and one study using an extremely modified EEfRT like set-up had to introduce modifications to supposedly study "consciousness" & "unconsciousness", which in itself seems extremely speculative, even comes to the conclusion that in Schizophrenia the unconsciousness is no different and that it is the "conscious effort allocation" that differs, so it's abundantly clear that results can't just be attributed to unconciousness to ones own liking).

It is likely that people with untreated Hashimoto's and Graves run less marathons than healthy controls whilst they are ill, but would anybody sensible deduce that, that has something to do with unconsciousness? Even more so if you’d have 2 marathon runners, one already having run 2 marathons that day, the other fresh as a daisy and you let them choose a training program for the remainder of the day, which either consists of completing an easy training session or completing a hard training session, does the result not seem rather predictable and would you conclude that the result has anything to do with unconsciousness? How would this be any different from the experiment in the study?

If anything this makes it much clearer that one would most definitely have to use calibration phase as part of the EEfRT. Otherwise any discussion of unconciousness is clearly obsolete to begin with.

What does he mean by unconsciousness?

Is he talking in terms of Freud, i.e. repressed thoughts and childhood trauma? But even Freud seemingly understood that one would somehow have to “unlock the unconscious state” (whatever that may be, if it even exists), you can’t just give 2 people with different physical capabilities a choice between doing 2 differing physical tasks and then argue that their choice reflects unconsciousness without correcting for their physical abilities.

If he is talking in terms of some antigen causing changes in the CSF or immune activation, which is the central hypothesis of the study, why involve unconsciousness at all? How many studies of people with brain tumours try to understand whether changes are due to unconsciousness differing and how would you know which changes aren't precisely because of a brain tumour with the unconscious state having remained constant?

It seems with every explanation the authors conclusions seem even more dubious...



How naive of you! This machine clearly has childhood trauma manifested in its unconcious mind that can only be revealed and treated by analysing its dreams, the wrench is simply a mind-body manifestation of this trauma.
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My guess is that Walitt just said what he said because people have been writing in saying that their framing of effort preference is offensive because it implies that people are choosing to be disabled. He's trying to spin it so he can head off that criticism and make it look like he was actually trying to prevent stigmatization. Of course this makes no sense because there is nothing about the word preference that indicates that the behavior is not under conscious control and he doesn't even try to explain how "preference" indicates a role of unconscious processing. I think if you'd asked him the question before anyone had read the study he would have had a different, just as nonsensical answer.
 
This point has been made many times here, but it's very hard to get past Avi Nath's opening comments at 14:50 —

"And first of all I really want to thank the study participants, because they really spent a lot of time and effort, knowing that there is no tangible benefit to them at the end of the study. But yet we probed and did all kinds of tests to them and took blood and spinal fluid and imaging and all kinds of things and they went through all of it. And they were here for a week and then two weeks."

Walitt et al said:
Additionally, the results suggest the impact of effort preference, operationalized by the decision to choose a harder task when decision making is unsupervised and reward values are held constant, on performance. [...] Conscious and unconscious behavioral alterations to pace and avoid discomfort may underlie the differential performance observed.
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The write up of this study doesn't even pass its own initial smoke test.
 
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An outspoken Blog in the substack Osler’s Web by Hillary Johnson responding to Nath’s preaching on how people with ME/CFS should be nicer to the wonderfully selfless researchers, that also covers the history of the NIH’s relationship with ME:

The Power of "Sorry"
Is it possible to forgive and move forward without an apology?
… … …
Nath’s words speak of his own demoralization, but I’m unconvinced that he has the moral authority to snap at patients because they failed to stand up en masse in gratitude. Yes—ME patients took an intense interest in his study and a few vocal patients criticized it. Scientists criticized it, too, but Nath doesn’t mention he’s demoralized and shattered by critical scientists. Should it be a surprise that many ME sufferers are fully engaged in the outcome of the first intramural study of ME at NIH in decades? Given the way they have been treated by federal scientists, one might expect them to act like whipped dogs, but they didn’t.
… … …
Nath is upset by criticism; he wants it to stop. Right now. But the scales of justice tell us who has the weightier grievance by far. Instead of asking for gratitude, Sorry might be the balm to start the healing.

The NIH may have the power to wipe the slate clean. Does anyone at NIH have the wisdom to do so?

See https://hillaryjohnson.substack.com...P__2vphv_7u6s_FYwu3LvNC4Tx&triedRedirect=true
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Do we need?have a separate thread on Hillary Johnson’s writing?
 
Wyva said:
Btw, now in hindsight I wonder why Nath was so reluctant to post it on a preprint server before publication. Was it simply because they anticipated criticism/blacklash?
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Surely that is the reason? There would have been a lot of scrutiny and commentary that might have influenced peer reviewers and editors; possibly even some of the participants may have had something to say.
 
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