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I did this, although it took me a lot longer than 15 minutes. It's interesting; NICE seems to be testing out providing more information related to recommendations, and how the information is laid out. The example recommendation they gave for comment included a short sentence saying it was...

:rofl: just 'presenting' it at all would be a start. I would suggest that, for any recommendations of treatment or advice to be given to patients, there should be a statement about what level of evidence there is. My understanding is that there is some sort of code in the guideline language...

(Just thinking ahead, BAME isn't great as many would pronounce it 'barmy'. If they went for BAM, it would look great on the current front page of the website, especially with an exclamation mark, BAM!)

It would be great if that happened (at least, the UK members of those organisations). It's not very clear to me who can join, but it looks as though anyone 'with a specific interest in CFS/ME' can.

This is what I came here for: The following statement from (or at least attributed to) BACME has been posted and discussed on the guideline delay thread:

I was just checking out the BACME website. I've included the front page here just in thumbnail, because I don't want to inflict it on you if you aren't feeling up to it. I can not think of a less appropriate front page for a professional website related to ME/CFS. I mean, on another page...

No, most of the over-hyped studies come out of Griffiths University. Daniel is a member here and has taken the time to engage with us. He is part of a team that has done interesting work on mitochondrial dysfunction. We have looked at some of their published studies. (click on the missailidis...

I was idly googling and found this interesting tribute by a charity, Validity, based in Hungary focused on mental health advocacy, but clearly working in Bulgaria and very connected to the disability rights movement there. https://validity.ngo/2017/03/09/a-tribute-to-rusi-stanev/ Validity...

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...