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The second visit was 7-10 days.

Sanna is one of the patients who is in remission or recovered. Edit: She phrases it that she is doing much better but I actually don't know if she's one of the four people the paper describes as recovered.

See my response just above...I believe several patients opted out of the CPET. I would not have enjoyed being asked to do a second one. I think the team was also trying to balance demands on patients with data collection. A 2-day CPET along with everything else they asked us to do would've...

Someone asked for my response...and my current response is that I'm not interested in providing a full response...I have a lot of thoughts on the paper and I'm not really interested in sharing them all at this time for a bunch of different reasons. However, I would like to point out that, yes...

The paper will be published in Nature Communications Feb. 21. It's getting some attention from reporters thanks to some work from @Dakota15.

Yes, intramural study tried to study PEM after CPET. IIRC, we had blood drawn before, during, 1 hour, 3 hours, 12 hours and 24 hours after the exercise. Something like that. I don't know exactly what the plans were for the blood draws...some kind of immune profiling, proteomics, etc.

The study did extensive pathogen screening, including in spinal fluid. But an antigen can be any piece of a pathogen or even a non-pathogen.

Nature Communications is a good journal. Publishing there doesn't mean they found nothing...what a weird comment. Edit: It is open access and myself and some others encouraged Nath to publish as a preprint and OA, so maybe that's why it ended up there.

Paul Hwang says he's been "deluged" with emails from patients and he's trying to respond to each one with a prepared response. So I'm guessing most folks will get the same message from him. He also says the support from the community is "greatly appreciated."

Just noting here that the Independent (UK) picked up the story (they just rewrote mine, haha). So it's getting some attention in the UK too, which is good. Also, Francis Collins wrote to me this morning to say he read the article & liked it. He's retired, or I guess semi-retired (still has a...

1) I don't think it's possible outside of a research setting. 2) So the numbers are a little tricky. The main measure of WASF3 was really between populations....the average in the entire ME/CFS cohort (14 patients w/ muscle biopsies examined) was significantly higher than the average in the...

Absolutely

Paul Hwang is trying to get a clinical trial of Relyvrio going. It's an ALS drug and he has some evidence it can reduce overexpressed WASF3.

Yes, here is a gift link: https://wapo.st/3Pem0G4

My article about Amanda Twinam, the woman whose doggedness in understanding her own health problems led to Paul Hwang's work, is finally out. Also in print in the Tuesday Health & Science section. https://www.washingtonpost.com/health/2023/09/17/fatigue-cfs-longcovid-mitochondria/

Oh yes, it is slated to run after Labor Day now ..so should be next week. I should have learned not to anticipate publication dates by now, haha.

Genes are often named for the first thing they're associated with. In this case, the gene was first identified in this syndrome so it's stuck with that name forever, but now our understanding of it is deeper.

Yes, he's looking at Relyzrio, approved as an ALS drug a few years ago. Edit: He was also looking at TUDCA + another supplement but it sounded like he wanted to start with an already FDA-approved drug.

Did you check the supplemental materials for some of the info you're looking for? You could also write Paul Hwang and ask for it.

I haven't kept up with the federal open access policy but it used to state that NIH funded work had to be made public access within a year of publication. I hope it changes if that's still the case. Hwang is trying to get a trial going. The paper was just published and he's been working on...