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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...

Thanks for posting this @SNTGatchaman I acknowledge the important gift the people who were the subject of this study and their families made to science. I think we need more brain autopsy studies like this, especially of people with Long Covid and ME/CFS, (and of women with these conditions -...

Very nicely argued @Robert 1973. :thumbup:

Links to forum threads on one completed study: Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman tldr (study has many issues, not least of which is that the data was analysed only by the person (Cash) who stands to...

I think that's a good point. As I went through the services, it seemed some of them were being provided by private companies that also provide physiotherapy and mental health services. People are profiting and, with Long Covid, the gravy train rolls on. It would be very interesting to look at...

This thread is for discussions about the delivery of ME/CFS care in the UK. We have other threads for individual UK clinics. So, the topic you suggest is fine for this thread. A comment from me, based on collecting up the posts we have about individual clinics over the last couple of days is...

The evolved relationships between host and pathogen are amazing.

Argh. :banghead: Hypocortisolism - it seems that so many people want this to be true, even though there is no evidence. I hoped for better from Leonard Jason. There's further discussion in some of the threads tagged with 'cortisol'.

There's more on Dr Alastair Miller's views on ME/CFS here: (Not a recommendation) Alastair Miller on CFS It's not clear to me how much involvement he has in the current North Cumbria ME/CFS Service, but he is certainly very involved in BPS circles.

Linking to this post; Miller remains very much involved in pushing the BPS line:

Another 6 months on, and the website link has changed, but it's still under construction. You won't find it by searching on ME/CFS, but CFS works: https://www.rlbuht.nhs.uk/departments/medical-specialisms/chronic-fatigue-syndrome-myalgic-encephalomyelitis-cfsme/ There's no content there, just...

Note from the moderation team We have decided to keep this thread just for general discussion about ME/CFS services in the UK. The first post of this thread now lists the threads we have for specific ME/CFS services in the UK: ME/CFS services in the United Kingdom Use those threads to post...