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

I actually didn't want to, for my very own sake, get into the Walitt effort bullshit, but the fact that this people seriously build up a hypotheses around patients not wanting to crash, hence might be a little more careful, is truly insane. It's beyond me how this can be published like this.
 
Simon M said:
For this to be credible, we need an explanation for PEM and relapses. If our body was fine and the problem is with effort preference (or even central perception), why if we choose to do stuff regardless:
1. We get PEM - is that then purely a brain phenomenon (possible)?
2. We get relapses.

For me, if I choose to ignore my feelings of tiredness etc, as I did when I tried CBT, I would feel terrible and could do less. I chose to continue doing stuff, my legs would give way, and I had a relapse, able to do far less: I eventually recovered from that relapse (had plenty more since), but how does brain dysfunction explain this?

Did they follow-up on the biology of the participant who reported it took her months to recover from a CPET? I'm struggling to relate the findings to my experience of ME (and I think the experience of many others).

Nice work by Brian Wallit.
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Yes it's mad that PEM as far as I can see is not mentioned once in the entire document. PEM contextualizes all of these decisions and I think if they had just asked the participants why they made the choices they did that would have come up, rather than try to infer it from data alone. They conclude in this section 'This pattern suggests the PI-ME/CFS participants were pacing to limit exertion and associated feelings of discomfort.' Just ask them, it's probably a conscious decision.
 
Have mixed feelings about this paper. Credit where it is due - clearly a lot of science went into making it, that no one else was prepared/able to do. But it appears we have not got much (at least immediately) in terms of findings out of it. Nath has mentioned there are other papers to come after this one, so we can but hope they are saving the revelatory findings for those!
 
pooriepoor91 said:
If there are no cognitive issues in ME/CFS, what's to stop us patients from hopping on a wheelchair and getting back to work or school? I'm a PhD dropout and my brain feels inflamed and legs aching just by trying to read this paper.
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exactly lol
thank fuck for doctors like schieben honestly. Brain fog is by FAR my most disabling issue, this paper is not fit for toilet paper tbh
 
Certainly a confusing and wandering paper. My take away from reading for the first time is that there is some central issue but the authors couldn't figure out what they were and came up with some effort preference bs as a loose conclusion from the fmri and grip testing.

I don't really know if the catechol pathway dysregulation is of any real relevance, but it does not seem like they did very extensive and advanced central testing whether that be by cerebrospinal fluid testing or brain scans.

I would have liked to have seen some testing of brain lactate and a TSPO PET scan during PEM as these are things that need confirmation and may have changed their conclusions but alas...
 
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Action replay, pretty much, 35 years of NIH messing with ME.




Hillary Johnson
'When Straus published his ridiculous "study" of 21 pwME in 1989, NIH sent it to 500 press outlets. Straus claimed ME was preceded by mental illness. I asked NIH, why send a study of 21 patients to 500 journos? Was told: Well--we get more queries about ME than any other disease.'

.
 
Trish said:
I suspect more will be added once the BPS people get their act together and see the stuff about deconditioning and effort perception that feeds into their narrative. Wallitt has let us down so badly.
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Welll, he can't really let me down because I didn't expect anything good to come from his involvement in the first place. He looked out of place from the very beginning.
 
Eddie said:
Does anyone have any thoughts on why none of the participants had pots? Is this a selection problem or are pots and ME just unrelated?? I really don't know what to make of this
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This stuff is way beyond me, but I do know they've excluded a lot of people because they had other conditions. I don't know if they were daft enough to exclude POTS on that basis and then report that no POTS was found.
 
Solstice said:
This stuff is way beyond me, but I do know they've excluded a lot of people because they had other conditions. I don't know if they were daft enough to exclude POTS on that basis and then report that no POTS was found.
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Biggest effing joke. I really don't think you could come up with such results unless you planned to do so. I am serious about this. It's just not possibe unless you select for it. With this pubication I have shifted from the 'NIH's behavior might be a bit fishy' to 'definitely in parts fraudulent'. I don't think mere incompetence can explain this paper.
 
butter. said:
This paper is a complete joke and evidence for the NIH's semi-fraudulent behavior in regards to ME/CFS. If somebody would tell you to make an effort primarily to show effort, but, to not actually find answers, that is approx. what you would get. The fact that Fukuda criteria were used is simply unbelievable. It took the NIH 8 years to come up with this garbage. I bet once again, US advocacy groups wll fail to stand up, once again it shows that people in the community arguing that 'the NIH gets it, but their hands are tied' can't be taken very seriously and are part of the problem.
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Take a lap, buddy.

17 US patients, who are human beings, went through an awful lot and sacrificed their bodies / baselines in this study. Some of those patients are on this forum. Do better than blasting 'US advocacy groups.' If that's your glaring takeaway from today, I strongly consider you to reassess your priorities.
 
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Jonathan Edwards said:
Let us say that an infection, in these cases, or possibly some other pattern of stimuli, that might be a snowballing of sub threshold stochastic events (as I think is true of autoimmune disease), leads to a shift in perhaps a CD-1 T cell population. That population, let us say, is involved in interaction with nerve pathways through ACh and maybe cytokines in controlling a programmed defence response that shuts down exertion capacity not just during acute infection but for some time after. Maybe it is normally a few days but for EBV or Q fever can be months. And in ME/CFS it never shuts off.

This defence mechanism might work on the basis that signals preventing exertion gradually drop off, allowing a bit more activity, but the pathways are re-engaged if activity rises too quickly. We know that very rapid return to muscle activity leads to muscle cell death - quite extensive. The defence mechanism would be tuned to keep levels below that as far as possible. And it could have a time course that ran into days, in the way that our biological clocks do, so that jet lag lasts a week. If the mechanism involves a feedback loop that can trip positive, you get a snakes and ladders effect where you can go right back to the bottom line for months.
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Just wanted to say that this is so much more interesting than the publication!
 
The ME Association has posted an article with a more positive slant. It doesn't seem to be an analysis of the findings rather a more descriptive piece.

https://www.statnews.com/2024/02/21...mIFjMVKPLixqWN67za7n0t8bwF8qJLmsdfC-6I71pln0M

"NIH study of ME/CFS points to immune dysfunction and brain abnormalities at core of long-dismissed disease"

"For decades, it was considered a women’s condition, and patients were told it was in their heads. Now research leaves no doubt: ME/CFS is a disease with clear biological hallmarks."

"“This is really a tour de force,” said Mady Hornig, a physician-scientist who has studied ME/CFS and was not involved in the research. “There are clues that I think are really worthy of pursuit.”"


"Most importantly, the work still doesn’t answer what is arguably the single most important question: What is causing ME/CFS, and how can it be treated? Researchers in the field think certain people may have a genetic predisposition that makes it more difficult for their body to clear an infection, so that could play a part. But if the disease can crop up after many different kinds of bugs, then what is the antigen — the molecule, protein, or thing — that’s driving an unrelenting immune response for months to years afterward? And why do some people get better, like the few study participants who had a spontaneous recovery, while many others don’t?"
 
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Andy said:
one defining feature of PI-ME/CFS was an alteration of effort preference, rather than physical or central fatigue,
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I don't know what illness this is describing, but it is certainly not mine. I have been ill for decades, never gave up optimism as to what I can do and yet every time I attempt to do anything that isn't rotting in bed I get PERMANENTLY worse from it. If I'm lucky, I get a PEM that lasts for 2 months instead.

And this is especially true for cognitive effort, which is the most relevant part anyway. Any time I get optimistic and start thinking that I can do anything productive FROM MY BED I get a huge relapse both physically and cognitively from the minimal mental effort I did.

I have more than once embarked in things that were clearly completely out of my league (yet for a normal person, they require maybe 5% of their energy at most), from a mix of desperation and blind optimism, trying to ignore my limitations because I really wanted to do something in life that could be considered productive, have some sort of achievement - I knew that they were crazy to attempt but I figured I had nothing to lose.

I indirectly screwed over other people, making them believe I could do things. Not because I wanted to deceive, but because I had the desperate and delusional optimism of someone with a dream that is about to die next day and truly has nothing to lose. Someone with 500 broken bones that says "fuck It, I'm gonna start running I don't care what happens". It always ends in disaster but you believe that maybe there is a 0.1% chance that the doctors are right and you can really do things if you try hard enough. That if you massacre yourself to unbelievable extents maybe you can be 5% as productive as a normal person, at least for a while...

The answer of course is a categorical no. Nothing is possible. But the blind optimism mixed with literally every doctor in the world telling you otherwise, and the alternative literally being to spend your entire life in bed doing nothing, let's you keep trying.

pooriepoor91 said:
If there are no cognitive issues in ME/CFS, what's to stop us patients from hopping on a wheelchair and getting back to work or school? I'm a PhD dropout and my brain feels inflamed and legs aching just by trying to read this paper.
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Exactly. I don't have much to add other than the people running the study are completely clueless. They are unable to look at the details and their "doesn't seem to be anything wrong but the patients prefer to avoid doing things" reflects that. Completely unable to understand PEM.

Then again, I saw someone in this thread mentioning this study was negative for POTS so maybe their conclusions are right, they just weren't able to actually select the proper patients. In either case, their incompetence killed this study and our hopes it would be anything meaningful.
 
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"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the commonly used term to describe a disorder of persistent and disabling fatigue, exercise intolerance, malaise, cognitive complaints, and physical symptoms with significant socioeconomic consequences."

Even this is word salad. No clear description of PEM, and are we to understand that "persistent and disabling fatigue, exercise intolerance, malaise" are different to "physical symptoms with significant socioeconomic consequences", as is implied?
 
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