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Not clear why they resigned. All speculation I think at this point. Paul Garner should not have been approached. Why should his opinion matter? The question is, does this mean the final guideline is sticking to the central recommendations in the draft, or not? We should know later this week as...

Hoped I would find it. This is from NICE. Not sure if it applies to the ME/CFS Guideline process, but I think we can assume that it does: Link: https://www.nice.org.uk/process/pmg20/chapter/finalising-and-publishing-the-guideline#releasing-an-advance-copy-to-stakeholders So, we might get to...

Stakeholders would normally see the final draft 12 days (I think) before publication. This would only be to proof-read the document. Not to make additional suggestions. And would of course remain confidential - stakeholders could not reveal the content before publication. I am not sure if this...

Personally, gutted at the announcement, but professionally it was to be expected and cautiously welcomed. The guideline committee have an awful lot of ground to cover and this is all done voluntarily for many if not most of them. I understand of course the concerns being expressed here and...

Washington Post: Renaming of Long Covid to post-acute sequelae of SARS-CoV-2 infection (PASC) - 22 March 2021 What do you think? I wonder how the Long Covid community and Alliance will have reacted to this one. Link...

@Andy Did you happen to see this article published 22 March 2021? It references Body Politic and Solve ME/CFS... Looks like the Long Covid community will not be immune to claims of pseudoscience and disbelief - despite the NIH funding and Collins's support. Of course this opinion piece comes...

Lady Margaret Mar writes them up from a recording she makes of the meeting.

Hi Sorry for delay in replying. Busy, busy busy... Link to all the ME Awareness blogs for May: https://www.meassociation.org.uk/2020/05/ Link to the media toolkit: https://www.meassociation.org.uk/get-involved/me-awareness-week/media-toolkit/ Apologies too for the website. We were about to...

That was my bad :) Too many plates in the air this week! We just heard from Carol Monaghan's office that the full details of the meeting are: Tuesday 14th January, at 1.00pm in Room Q, Portcullis House. I have updated the MEA Blog and MEA Facebook posting as well as my email 'template'...

"It was agreed that we need to craft a scientifically robust GWAS application but the more detailed costs now available most likely mean that we cannot also expand the biobank with samples other than saliva. "There was consensus that we need to prioritise the GWAS work. There were lots of other...

Fair enough, although Prof. Ponting would have been doing the 20,000 GWAS attached to MEGA :)

I think there's more to it than that. Hopefully the public will learn all about it in due course. We haven't even been informed of the estimated costs at this point - another oddity I think. If I remember MEGA - which aimed to recruit from NHS specialist clinics rather than online - was to cost...

Are you able to locate anything that says what the outcome of the legal dispute(s) was? This occurred in 2009 so you'd expect some sort of report on the legal result I'd imagine.

I find it very strange that nobody has commented on the apparent removal of the proposed expansion of the M.E. Biobank from this project. This was a key (but not the only) distinction between what was MEGA and this new venture and it offered considerable scope for future research. It seems very...

Puts me in mind of the 'snakeoil' salesmen that we have come into contact with over the past decades. Several of whom, when questioned, would say, 'Oh yes. We plan on a proper clinical trial.' It looked good on their websites but they never did them of course. It would eat into the profit...

Is it laughter than might do it - or is it the distraction? When I think of all the other distractions I employ to take my mind off the [include symptom of your choice] they all perform similarly depending of course on the severity of the symptom at the time. Sure, I can laugh myself into a...

Morning @Natalie Apologies, I have only just seen the alert and wasn't aware of previous conversations between you and Dr Shepherd. We did feature on social media yesterday a link to your website and the new videos but I would like to try and do more to promote the fantastic efforts you and...

Of course while White is correct about the sheer number of competing criteria for ME/CFS his comments are rather unfair in that most research now is either using Fukuda or Canadian, or both. And I think we've seen a couple of ICC research papers as well. I'd even suggest that use of Fukuda is...

I think there is a need to debate 'neurological' and 'mental' because the latter should I feel slide into the former regardless of our discussions around ME/CFS. 'Mental' is something I don't think anyone really feels is constructive, useful or fair. But then they've been talking about merging...

Hi Nasim, I don't I'm afraid. Couldn't find it. Must be somewhere...? This later website blog from the MEA in 2011 says I think that is should be in: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME)...