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

Odd. To me it sounds awfully like he is clueless, indifferent, or part of the problem.

 

That's quite a stretch. This study doesn't prove anything. They've found basically nothing.

 

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.

 

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.

 

Appreciate spearheading this, @rvallee

 

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

This. precisely & entirely this.

exactly

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

 

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!

 

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

 

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

 

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.

 

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

 

Natural History of Post-Coronavirus Disease 19 Convalescence at the National Institutes of Health

The principal investigator listed on this is Walitt (scroll to the bottom). We have another paper of this sort to "look forward to".

 

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.

 

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."