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Just so we know who we are dealing with, here's Daniel Quintana's biography - he's the senior author on this:

(I wrote this when the paper was briefly double posted, and so I didn't have the benefit of all of the foregoing comments.) Friedberg, Fred; Adamowicz, Jenna L.; Bruckenthal, Patricia; Milazzo, Maria; Ramjan, Sameera; Quintana, Daniel Friedberg is President of IACFSME. He's been working on...

I don't think they actually do that. So, I think they are assuming that OI symptoms correlate with the degree of cerebral blood flow - and so they are equating low cerebral blood flow when upright with OI. None of the 122 ME/CFS patients included in the study had hypotension or tachycardia...

Very sad news that Retha Viviers, founder of the South African ME/CFS Foundation, a staunch advocate for people with ME/CFS and a member of this forum has died. We have an In Memory thread for her here: Retha Viviers

Yes, it's something that could legitimately be said about a treatment that hasn't been researched well yet. But to say that for something like CBT or exercise aiming to improve ME/CFS, things that have been researched again and again for years, in all sorts of permutations, is a just a triumph...

To summarise, from the abstract and the points made above: They found that people who have POTS symptoms, including potentially falling over if they don't sit down when feeling faint, think about their body sensations more than people who don't regularly have such symptoms. They found that the...

Your alexithymia* is showing @Peter Trewhitt You didn't realise how afraid of standing you were. (;)) Absolutely incredible. And so the variability from one day to the next is because some days we are easy frightened and other days we are braver?

Not claiming either of those things, but I have read it. It's tempting to go through it section by section and pick it apart, but that would take a long time and probably wouldn't achieve much that is good. I think it's a good document with some interesting ideas. It's obviously a consensus...

I do think that cadherins are worth looking at more. Toxins from some dinoflagellates disrupt cadherin function. This may be a mode of action in ciguatera fish poisoning (CFP). Some people affected by CFP go on to develop a chronic illness that is a lot like ME/CFS. (I haven't looked into...

Hmm. 'Psychological' gets thrown in there, even though no evidence for that view is specifically cited. Hmm Given what we know about the problems of some antidepressants, the suggestion that they are potential therapies is concerning. Note mention of a UK study of LDN that is currently...

Safety and efficacy of low dose naltrexone in a long covid cohort; an interventional pre-post study, 2022, O'Kelly et al A small preliminary study of LDN by a group of Irish researchers: Brendan O'Kelly ab Louise Vidal b Tina McHugh b James Woo a Gordana Avramovic b John S.Lambert ab a...

That's a great analysis @cassava7. Have you looked to see if you can submit a comment to the journal? Do you plan to send it to the charity that funded the study? I haven't read the study, but this bit wasn't quite clear to me: I think it's arguable that there was a dose-dependent...

A Members Only thread has more discussion about rapamune: My n=1 with Sirolimus (Rapamune)

Without setting up an account, I can only see the first page, so can't see what is suggested for treatment/management. Most of the first page looks very good. The references given seem odd though, there's just three of them:

If anyone has an account on Medium, they might like to invite Nicola here. (Perhaps she is here already.)

Wanted: forum members to report on the IACFSME 2022 Virtual Medical Conference July 27-30 2022. 9 am to 5 pm EDT (New York city time) IACFSME have kindly offered the forum access rights to the conference, in order to share the information from the presentations more widely. We are therefore...

Yes, my bad.

At one point Simon was asking for ideas about particular questions that the DecodeME data might be applied to. With so much variation around the composition of fibrinogen, it just seemed like an interesting question to look at, if it turns out that fibrinogen breaching the blood brain barrier...

I'm jumping the gun here, because we don't yet know if this fibrinogen leakage is happening in Long Covid (or ME/CFS generally). But if fibrinogen is found in the brains of people with Long Covid, then this comment from the 2018 paper I quoted above is interesting: Perhaps any sort of...

There's acknowledgement of the similarities of long-covid and ME/CFS. So, these patients were selected specifically because they showed micro-vascular abnormalities - which amplifies the concern that @SNT Gatchaman expressed (that the co-morbidities of these people might explain some or all of...