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

poetinsf said:
I think the point was that you are not supposed to be able to achieve the peak exchange rate, with or without the encouragement if you have peripheral fatigue/muscle failure.

That said, the patients in this study were mildly sick. We don't know if patients in PEM state would've responded the same way with the encouragement. They probably couldn't use severely ill patients who are constantly in PEM state or mild/moderate patients in an induced PEM. That would be unethical human experiment.
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Oh, wait, I think that question is already answered with 2-day CPET test. VO2 Max of PEM patients drops significantly while that of sedentary control increases. In other words, PEM patients can't perform even with encouragement. QED.
 
If anyone has the cognitive bandwidth for it, I have created a members-only thread to discuss letters to NIH director Bertagnolli: Letters to NIH director Bertagnolli about the intramural ME/CFS study. I am in the process of writing one and will share mine on this thread once it's done.

Given the size of the organization and the nature of scientific research, it's unlikely that a newly-appointed NIH director would have enough insight into what went wrong. Bertagnolli has expressed the goal of moving forward the field of chronic illness, and obviously the $1.7B (with the recent addition of funds) RECOVER initiative is a significant part of her tenure. She has to know that unless things significantly change at the NIH, LC research is just as likely doomed to fail. There is a problem of culture and, this is appropriate, of effort preference with a major mismatch between what the researchers think they can do and what they could actually do, if they ever put in a sincere effort.
 
Trish said:
Now I'm trying to type this and am slowed right down, every word is an effort and full of typos that I have to correct.
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There's a potential ME app: something that rates your typing speed and errors. Add in a journal function so you can look for correlations between your other symptoms, and maybe your activities and food (and drugs, supplements, etc) intake. The cognitive equivalent of the physical activity apps. Word choice might be another possibility; there are plenty of times when I use a poor choice of word because I just can't remember a better one.
 
rvallee said:
If anyone has the cognitive bandwidth for it, I have created a members-only thread to discuss letters to NIH director Bertagnolli: Letters to NIH director Bertagnolli about the intramural ME/CFS study. I am in the process of writing one and will share mine on this thread once it's done.

Given the size of the organization and the nature of scientific research, it's unlikely that a newly-appointed NIH director would have enough insight into what went wrong. Bertagnolli has expressed the goal of moving forward the field of chronic illness, and obviously the $1.7B (with the recent addition of funds) RECOVER initiative is a significant part of her tenure. She has to know that unless things significantly change at the NIH, LC research is just as likely doomed to fail. There is a problem of culture and, this is appropriate, of effort preference with a major mismatch between what the researchers think they can do and what they could actually do, if they ever put in a sincere effort.
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Appreciate spearheading this, @rvallee
 
Trish said:
Have I understood correctly that Wallitt is in charge of a similar study with people with Long Covid? If so, one part of any complaints should be to insist he be removed from all further involvement with ME/CFS or LC.
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This is so important! Wallitt must never be allowed to get near ME and LC research again and we patients must say no to participate in his research. He has his own agenda and it will never serve us well.
 
I havent been able to read or process a lot of this thread so pls forgive me if i saying things already finished
Hoopoe said:
I recall writing on this forum multiple times about how my body, when not in PEM, appears to be unable to fully sense whatever problem it is that leads to PEM. The brain feels as if it's capable of doing a thing, and motivation and interest surge, but then the actual ability to do things is vastly lower. It fails to predict the consequences and overestimates its abilities. We cannot trust that feeling good and motivated in the moment actually means being able to complete the task that we feel good and motivated about. This is a very consistent pattern.

The behaviour that we patients learn to compensate for this comes across as anxious, overly passive, lacking motivation, negativity, etc. Other people think the cure is to get us to enter into a more positive mental state but that doesn't help at all in the log term.

If anything the perception problem is that we think we can, but actually can do much less (especially in a sustained manner).
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This. precisely & entirely this.

rvallee said:
And ironically, the real problem is that with PEM, we all keep underestimating how much effort things take and hit the wall. We all forget just how punitive it all is, how much it hurts to go over that limit, and still we go over that limit again and again. They got is so completely backwards it would be hilarious if it didn't set back research and was the only shot the NIH would bother doing for a long time.
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exactly

With time, the reduction in physical activity leads to muscular and cardiovascular deconditioning, and functional disability. These features make up the PI-ME/CFS phenotype.”
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What about when the disability - severe disability, begins almost immediately after the infectious trigger? Like within 2 wks... & suddenly the marathon runner can no longer sit up in bed or get to the bathroom. Thats some mighty impressive 'muscular & cardiovascular deconditioning' isnt it! I mean wow.

The reasoning is so blinkered, deliberately ignoring any information which might contradict what you already think. It's just a repetition of all the other "ME/CFS = fear/avoidance + deconditioning" nonsense we seen before, ISTM that this study seems was simply designed and the data tortured to produce a predetermined outcome.
Except now they concede something akin to 'dont worry deary, we know its your brain telling you that you cant do it, but the result is the same - its deconditioning that creating all your symptoms and disability'.

Heads bleeding, wall unmoved
 
Sid said:
That's quite a stretch. This study doesn't prove anything. They've found basically nothing.
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Yea, at best they haven't disproved the idea that fMRI is a way to test the "sickness behaviour" hypothesis --- but they haven't added anything substantive in terms of supporting that hypothesis, re ME/CFS, either --- so I think you're in the right ball park!
 
rvallee said:
If anyone has the cognitive bandwidth for it, I have created a members-only thread to discuss letters to NIH director Bertagnolli: Letters to NIH director Bertagnolli about the intramural ME/CFS study. I am in the process of writing one and will share mine on this thread once it's done.

Given the size of the organization and the nature of scientific research, it's unlikely that a newly-appointed NIH director would have enough insight into what went wrong. Bertagnolli has expressed the goal of moving forward the field of chronic illness, and obviously the $1.7B (with the recent addition of funds) RECOVER initiative is a significant part of her tenure. She has to know that unless things significantly change at the NIH, LC research is just as likely doomed to fail. There is a problem of culture and, this is appropriate, of effort preference with a major mismatch between what the researchers think they can do and what they could actually do, if they ever put in a sincere effort.
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also just can someone test a drug that is not pulled out of their arses and is so dangerous, im so worried about future trials that could significantly hurt people
and this is from someone who is prepping to try cyclo after like 8 billion tests
 
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Perrier said:
The problem is that because NIH is a govt institution, employees likely have permanence/tenure. Not American here, so just a guess. But in that case, he will be doled out projects until retirement age. Plus, he has probably become buddies with like minded folk there. He is the lead name on this project.
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I see, that’s a big problem. But what would happen if people with ME and LC refuses to participate with him in the lead?
 
[responds to a post that was deleted by the poster]

there are also lots of immune related medications in trial by private individuals and groups that might answer this question before research tbh
please take this with the usual grain of salt of "self reporting, online data, could be placebo", but we know some people on the Efgarti trial for longcovid/pots and IF the positive and negative stories correlate properly with the drug Vs placebo effect, that drug will get a phase 3
 
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Lindberg said:
I see, that’s a big problem. But what would happen if people with ME and LC refuses to participate with him (Walitt- added by me) in the lead?
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Isn't this what happened in this study? Patients from the US did not come forward in sufficient number to reach the 40 participants that they wanted. They got 17 which made the project pretty invalid anyway.
 
Lindberg said:
This is so important! Wallitt must never be allowed to get near ME and LC research again and we patients must say no to participate in his research. He has his own agenda and it will never serve us well.
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Looks like Walitt and Nath are in charge of the Long Covid study at the NIH.

At the National Institute of Neurological Disorders and Stroke (NINDS), Senior Investigator Avindra Nath, who’s known for his work on how infections affect the brain, and his colleague Brian Walitt(external link) have repurposed their observational study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—yet another unexplained condition associated with a previous history of infection that looks a lot like PASC. (Results from the ME/CFS study are expected to be published in 2023.)

Nath and Walitt began their long COVID study in 2020 and have engaged the help of several institutes and centers. They aim to recruit 240 individuals.

https://irp.nih.gov/catalyst/30/4/why-some-stay-sick
 
Binkie4 said:
Isn't this what happened in this study? Patients from the US did not come forward in sufficient number to reach the 40 participants that they wanted. They got 17 which made the project pretty invalid anyway.
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Many people tried to get into the NIH study but were not accepted, so it's not that they didn't come forward in sufficient numbers but the exclusion criteria, etc kept people from participating.
 
Denise said:
Many people tried to get into the NIH study but were not accepted, so it's not that they didn't come forward in sufficient numbers but the exclusion criteria, etc kept people from participating.
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That was not the situation we heard of here.
In the S4ME earlier thread, Brian Vastag came and commented

"Hi, Brian here, just signed up for the forum. Yes, that is all true. Still, NIH is having trouble recruiting. They've run 16 patients through the first visit. The NIH team has contacted about 200 patients who made it through an initial screening phone call and look like they qualify for the study, but they all disappeared and did not return phone calls. If about 10-15% of those people maintained contact and got into the study, that would get us to the 40 patients needed. I understand why people make contact and then disappear but I was surprised that 200 people had done that."
 
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