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

[rvallee]

Lipkin: To the patients, the people with ME/CFS, people with Long COVID, you are heard. We don’t have enough resources to do what we need to do and if I’ve learned anything at 40 years of doing this kind of work, you need better advocates. The squeaky wheel gets the grease.

Komaroff: Indeed.

Edited to add: We get to get blamed at the start of the symposium and at the end. WTF.

Don't know which way he meant it, but I'd say that I fully agree with the more reasonable interpretation that we need better advocates within the medical profession and the academic community. We need more of them, and better ones. Which Long Covid has given us, but not nearly enough to overturn decades of pseudoscience and fairy tales.

I'm really not sure this is what he meant, but I agree with that characterization.

 

[rvallee]

Completely ignoring that this is a critical part of how science operates. Not mutual praise sessions and defensive wagon circling. Except in medicine, apparently.

Criticism between academics is basically the norm. This isn't kindergarten, spit will fly and tempers will flare, this is all normal. In fact finding weirdly positive collegiality is basically a sign that things are, let's go with fucky.

I think that what they're not used to is laypeople giving them more substantial criticism than their own colleagues, who for the most part couldn't care less and so this is why it has generally not happened, at least not this openly. We have all the stakes. 99% of MDs couldn't be bothered to think about this for more than 30 seconds. This is a very unusual context, and they're just not used to it.

 

[Eleanor]

Effort preference - an extremely junior presenter and he just read the presentation out, looking at the notes the whole time. Virtually no eye contact. He didn't even look up at the end!

There was a picture of a woman holding multiple shopping bags to illustrate effort
Effort preference isn't under voluntary control - people are just wired differently

Effort task - well validated (our test is great)
Reduced effort preference in ME/CFS, no evidence of fatigue over time

Findings are similar to people in Parkinsons. When the Parkinsons people were given dopamine, they engaged in the hard tasks more. Emphasised that people with ME/CFS aren't choosing this

But Walitt says (copied from the EEfRT thread in the Research forum):

Brian Walitt:
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.

(my bold)

I keep trying to understand what message they think they're conveying with the "effort preference" term, and why they don't seem to be worried by this constant switching between "it's involuntary, they're not choosing this" and "it's both conscious and unconscious choices".

 

[Jonathan Edwards]

they don't seem to be worried by this constant switching between "it's involuntary, they're not choosing this" and "it's both conscious and unconscious choices".

Probably because that is the whole point of these terms. They are supposed to mean two different things to two different lots of people. Trouble is they forget which people they are talking to.

 

[Evergreen]

Is the term "preference" used in neuroscience/cognitive psychology/related fields to refer to an involuntary thing the brain chooses independent of its owner? Because for lay people, preference implies volition.

 

[Jonathan Edwards]

Is the term "preference" used in neuroscience/cognitive psychology/related fields to refer to an involuntary thing the brain chooses independent of its owner? Because for lay people, preference implies volition.

Preference can be used in a behavioural sense - 'the pigeons showed a preference for the red seeds'.

The interesting thing though is that effort is conscious. It isn't behavioural. It is voluntary. That to me means that effort preference has to be conscious, indeed self-conscious. And of course pacing is entirely conscious effort preference - which indicates the absurdity of deriving this concept as if it was independent of ability to do the task. Pacing is rational effort preference in response to accurate prediction of task failure. And their experiments don't even provide any convincing evidence of that because of the screwed up reward system.

 

[Evergreen]

Preference can be used in a behavioural sense - 'the pigeons showed a preference for the red seeds'.

The interesting thing though is that effort is conscious. It isn't behavioural. It is voluntary. That to me means that effort preference has to be conscious, indeed self-conscious. And of course pacing is entirely conscious effort preference - which indicates the absurdity of deriving this concept as if it was independent of ability to do the task. Pacing is rational effort preference in response to accurate prediction of task failure. And their experiments don't even provide any convincing evidence of that because of the screwed up reward system.

Yes, the birds' preference makes sense.

They don't seem to agree that effort preference has to be conscious:

[from their FAQ page https://www.nih.gov/mecfs/nih-intramural-mecfs-study-qa]
What is effort preference?

• In our day-to-day lives, the brain must decide how to expend its focus and energy on the tasks that are presented to it. The expenditure of energy is interpreted by the brain as effort. Not all tasks require the same amount of effort, with some tasks being easier and others harder. Tasks are also not equally valuable, with some tasks having more reward and others less. Effort preference is a measurement of the decisions the brain makes of how to utilize its energy based on difficulty and value of a task. We are often not aware that these processes are happening.

 

[Jonathan Edwards]

They don't seem to agree that effort preference has to be conscious:

Yes, but their understanding of brains and minds is hopeless.
A brain does not interpret anything as effort. A human subject does. As to what a human subject is that is a very tricky biophysical question that I could go on about for hours but it ain't a brain. Brains don't make decisions either. This is ludicrously noddy-type language dreamt up to sound to the general public and gullible colleagues as if psychologists that have miraculously become neuroscientists know what they are talking about when they haven't a clue.

If we aren't aware of processes happening then there is going to be b***** all we can do about them!!

 

[Hutan]

If we aren't aware of processes happening then there is going to be b***** all we can do about them!!

Oh, there's no expectation of us deluded souls fixing ourselves. That's what the professionals are for. I'm sure there are platoons of nice ladies with blue cardigans standing by to follow a manual written by Walitt, White et al, to cure us of our lack of self-awareness and faulty effort preferences.

 

[Jonathan Edwards]

Ah, do they still wear those nice blue cardigans? Cashmere? With a nice silk neck scarf, loosely tied?
I could try it!

I fear the gear might have changed tho.

 

[Laurie P]

Don't know which way he meant it, but I'd say that I fully agree with the more reasonable interpretation that we need better advocates within the medical profession and the academic community. We need more of them, and better ones. Which Long Covid has given us, but not nearly enough to overturn decades of pseudoscience and fairy tales.

I'm really not sure this is what he meant, but I agree with that characterization.

If that's how he meant it, he should have been calling out the BS at the symposium and his colleague Mady Hornig should have called it out in the press. Lipkin should be calling out his other colleague Komaroff for Komaroff's constant fence straddling career including promoting the most resent NIH BS.

 

[shak8]

Maybe Dr. Walitt is more careful to be subtle now in voicing his beliefs.
Here, a 2016 interview about FM.



​

See minute 7:03

Question: what is fibromyalgia?
Walitt says essentially that FM is how people experience suffering in their lives.

 

[Laurie P]

If that's how he meant it, he should have been calling out the BS at the symposium and his colleague Mady Hornig should have called it out in the press. Lipkin should be calling out his other colleague Komaroff for Komaroff's constant fence straddling career including promoting the most resent NIH BS.

Todd Davenport
@sunsopeningband

Hey @NatureComms. When will you explain why your editors think it’s acceptable for Dr. Anthony Komaroff to be listed as participating as a case adjudicator, acknowledged as providing helpful comments on the manuscript, and listed as a peer reviewer of the Walitt et al study?

11:49 AM · Mar 24, 2024 · 8,040 Views

--------------------

Is chronic fatigue syndrome all in your brain?
An NIH study expands on a body of research locating objective markers of ME/CFS in the brain, the immune system, the gut, and beyond.

February 28, 2024 By Anthony L. Komaroff, MD, Editor in Chief, Harvard Health Letter

https://www.health.harvard.edu/blog/is-chronic-fatigue-syndrome-all-in-your-brain-202402283020

The page won't let me copy and paste and I'm not up to transcribing.

Edited to add that I was able to copy and paste later and I copied quotes below.

 

[Hutan]

In the closing credits of that Walitt video is
"DISCLOSURES
Dr. Walitt has no financial conflicts with industry."


Which is a strange way to state things. It makes it sound as though he is financially aligned with industry.

I didn't realise that he is a physician. The thought of him treating someone with fibromyalgia, or anything much, with the attitudes he has is horrifying.

 

[Laurie P]

Is chronic fatigue syndrome all in your brain?

February 28, 2024 By Anthony L. Komaroff, MD, Editor in Chief, Harvard Health Letter

https://www.health.harvard.edu/blog/is-chronic-fatigue-syndrome-all-in-your-brain-202402283020

I can copy and paste now. I'm not sure what happened earlier.

Second, the study found that a part of the brain known to be important in perceiving fatigue and encouraging effort — the right temporal-parietal area — was not functioning normally. Normally, when healthy people are asked to exert themselves physically or mentally, that area of the brain lights up during an MRI. However, in the people with CFS it lit up only dimly when they were asked to exert themselves.

While earlier research had identified many other brain abnormalities, this one was new. And this particular change makes it more difficult for people with CFS to exert themselves physically or mentally, the team concluded. It makes any effort like trying to swim against a current.

 

[SNT Gatchaman]

While earlier research had identified many other brain abnormalities, this one was new. And this particular change makes it more difficult for people with CFS to exert themselves physically or mentally, the team concluded.

And indeed in the "Deep Phenotyping" paper the NIH also identified "many other brain abnormalities" but they're just not gonna talk about those because they don't fit with the bias and preconceived explanation.

We also assessed changes across blocks with a two-way ANOVA (2 groups × 4 blocks), which showed that blood oxygen level dependent (BOLD) signal of PI-ME/CFS participants decreased across blocks bilaterally in temporoparietal junction (TPJ) and superior parietal lobule, and right temporal gyrus in contradistinction to the increase observed in HVs

 

[Sean]

Criticism between academics is basically the norm. This isn't kindergarten, spit will fly and tempers will flare, this is all normal.

These guys wouldn't last 5 minutes at your average maths or physics conference.

I think that what they're not used to is laypeople giving them more substantial criticism than their own colleagues, who for the most part couldn't care less and so this is why it has generally not happened, at least not this openly. We have all the stakes. 99% of MDs couldn't be bothered to think about this for more than 30 seconds. This is a very unusual context, and they're just not used to it.

They really can't handle the fact that supposedly incompetent delusional unqualified patients have outargued them, and exposed just how clubby, incompetent, and reform resistant medicine can be, and how utterly ruthless in preventing that story being told to the world.

But they think we are weak hysterical snowflakes, incapable of facing reality? It is beyond parody.

 

[Laurie P]

Nath - future directions

Suggests we hold hands together and move forward and that there is light at the end of the tunnel. (that isn't a paraphrase)

 

[butter.]

Don't know which way he meant it, but I'd say that I fully agree with the more reasonable interpretation that we need better advocates within the medical profession and the academic community. We need more of them, and better ones. Which Long Covid has given us, but not nearly enough to overturn decades of pseudoscience and fairy tales.

I'm really not sure this is what he meant, but I agree with that characterization.

I am not sure in which way he meant it, but, I agree with it universally: to assert that advocates are not doing a good enough job, including patient advocates, is not victim blaming, it's a realistic look at what is happening and at what needs to change, despite or because of patients' physical and mental limitations. It's about finding better workarounds and asking charities with paid employees to do a better job. It's naive to think that the medical complex will start being 'good advocates' for ME without providing an incentive to do so. We have to do a better job to make them better advocates for us.

 

[Turtle]

Is the term "preference" used in neuroscience/cognitive psychology/related fields to refer to an involuntary thing the brain chooses independent of its owner? Because for lay people, preference implies volition.

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.