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Millions Missing Canada is asking for people to co-sign their letter asking political party leaders what they are going to do about ME/CFS: Millions Missing Canada advocacy, letter to political leaders during Federal Election 2021

Regarding retinal microcirculation as a biomarker: They suggest that altered blood cell deformability and/or endothelial dysfunction might have something to do with the reduced microcirculation seen after Covid-19. and they think that these vaso-active G-protein coupled receptor...

They measured the level of autoantibodies against G-protein coupled receptors (ß2-AAb (that's the one the man had already had), AT-1-AAb, α1-AAb, MAS-AAb, M2- AAb). The infusion treatment is reported as knocking the level of the autoantibodies right down: And then there's the fatigue...

This account is complicated though. The man was already part of a glaucoma registry at this university, and it had already been noted that the man had autoantibodies targeting the ß2-adrenergic receptor. The man had had multiple operations on one eye - teh eye the data is shown for, and a...

I agree, it fits with some of my symptoms and we had Systrom recently deducing (from the results of i-CPETs) that there is a blockage in the capillaries and/or venules. And we discussed the idea of retinal microcirculation as a biomarker recently too. There is a company behind this - Berlin...

It's sounding as though things are quite specific to the country you are in, Svet. Do you know other people with ME/CFS in Bulgaria?

Over 3000 already.

I've signed and will be encouraging people I know to sign it, as what happens with the NICE guideline affects people with ME/CFS everywhere. Does anyone know, can organisations like patient charities sign, or is it only individuals? Over 1500 now.

It's disappointing that IACFSME made no public statement about, or relevant to, the publishing of the Crawley paper. There has been no suggestion of an apology or improved processes. No one from the organisation came here to engage with our concerns, or to explain why the Crawley paper...

There's a paywall. @Jaybee00, can you tell us a bit more about what's in it?

The moderation team has decided to close this thread and redirect discussion of articles related to the paused guideline publication back to the main thread: NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021 This is because articles are...

My reservations aside, I am interested in hydrogen sulphide: When my children and I developed ME/CFS, we had a gastric flu and were inside an unventilated uncooled house during an extended heat wave with the contents of a container-load of personal effects that had just arrived from overseas...

We have a thread here: Neutrophil Extracellular Traps

'Reporting a clinical benefit' and 'actually showing a clinical benefit' are two quite different things. When I see something that I actually know something about, something like this, where the facts are misrepresented, it makes me wonder how many other points in the paper are wrong. CoQ10 -...

Yes, as it probably is in adults (going by the Dubbo study and studies of Long Covid). I wonder if the idea that children and young people are particularly likely to recover is in part due to the fact that most people getting EBV are young people, and EBV is a particularly obvious and...

I don't think those decision makers would need to know anything about the Lightning Process or psychology to know it was not a good study to allow. The fact that there were no controls should have been enough. And the fact that outcomes were self-report surveys in an open-label study should...

It's a shame these studies have variable follow up times (1 to 5 years in this case). It also matters how long the young people have had ME/CFS before being seen - some young people will have recovered before getting near the 'tertiary referral service'. Perhaps those things are addressed in...

Just bumping this. Does anyone have any idea how many people have signed up to the response?

I think the possible (income protection/permanent disability) insurance company connection (and it's just speculation) is that if CBT and GET are said to work, then the suggestion is that there is a treatment. So, the insurance companies can require people to do the various treatments before...

I actually got myself quite worked up over this, which I guess is silly, because these authors probably just slapped this piece of patient-blaming twaddle together, added another publication to their tally and blithely moved on to write prejudiced ignorant nonsense about something else...