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Oh god that would've been awful. No thanks, the metabolic chamber was bad enough without having to exercise in it.

No this is not from the intramural study team. This was research that arose from a very tenacious lawyer from Albany with Li Fragmeni Syndrome. Its connection to the ME/CFS study was serendipitous. I really wish my article describing how it came about was published today but it'll be at least...

The paper from Hwang et al out today shows that p53 is not involved in the pathway he identified. The patient's Li-Fraumeni Syndrome was unrelated to her chronic fatigue & related health problems.

Paul Hwang used this 2011 paper to ID WASF3 as a gene product of interest. I've written an article for The Washington Post about how this research came about - it's due to the tenacity of one woman who wanted answers to her own health problems - but August is the worst time of year for science...

The restrictions on healthy inpatient volunteers was an NIH Clinical Center-wide policy. It had nothing to do with any specific study. "In March 2020, the NIH Clinical Center implemented visitor restrictions, including limiting the admission of healthy volunteers to clinical research studies...

Sure, using people who recovered completely after acute covid would've been the ideal control group. But it was very difficult to bring healthy people into the Clinical Center at that time. Basically impossible from what I've heard. And each healthy control in the intramural study took about...

The controls were from the intramural ME/CFS study, as the paper notes.

We have some data. It's been posted publicly to the clinicaltrials.gov page for the study. This posting is probably in accordance with NIH policy for sharing data on intramural studies, although I'm not certain on that. @searcher found it...

Yes, the GWI study has been in the works for a few years. Brian Walitt mentioned that other groups wanted to use the intramural ME/CFS protocol.

I didn't take it that way. I still think 3 day followup with bloodwork is very valuable. Sure, longer would be better, but PEM is almost always triggered within 72 hours.

No, people with severe ME could not endure the study. But I don't know how any research outfit could do an in-depth study of ME without exacerbating some symptoms. And I don't know how anyone can study PEM in a controlled setting without triggering PEM. Patients could opt out of any or all tests...

We already spent a loooooooooooooong time at the Clinical Center. Longer followup would've been nice but I was happy to get out when I did and fly home.

Also, these are the final numbers of patients screened for the NIH Intramural study: "Study recruitment occurred between December 2016 and February 2020. Of 484 ME/CFS inquiries for NCT02669212, 217 individuals underwent detailed case reviews, 27 ME/CFS and 25 HVs underwent in-person research...

Yes. I am going off memory here, but after the CPET, I had blood work done at 1 hour post, 4 hours, 12 hours, 48 hours and 72 hours. Something like that. The blood work was done at the same time as the structured questionnaires.

I'm sorry if I'm a little testy. I was just really annoyed that someone in this thread suggested that there is a plot inside NIH to sabotage the study (there is not).

How much time have you spent with Brian Walitt? I spent many many hours with him. He just devoted 6 years of his career (and life) to the deepest biological study ever conducted on ME/CFS. Does that mean anything to you? Edit: I'd like to add a few things. Brian Walitt is a rheumatologist...

This is complete conjecture, i.e. you're making it up.

Merged thread Conference talk "ER [endoplasmic reticulum] Stress Induction of WASF3 May Underlie CFS" Dr. Paul Hwang of the NIH's National Heart, Lung, and Blood Institute, is giving a talk on March 27 entitled "ER [endoplasmic reticulum] Stress Induction by WASF3 May Underlie CFS". It's at a...

I believe Hwang looked at 14 muscle biopsies from ME/CFS patients and found the abnormality in "about 10".