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Charles has been stood down from the Guideline Committee, owing to 'conflicts of interest' and in particular a complaint made about a social media post he made...

We're not sure yet; it's largely down to Andrew, the new ForwardME Chair.

The owner of this channel has just copied a video that was already on YouTube, and which I've watched before:

That's outdated info, but I suspect even thought he has stood down as CMRC Chair, he will remain on FME Steering Group, though I notice he hasn't been at most of the recent meetings (probably too busy).

That's the Steering Group you're looking at, not members. The ForwardME members are generally (representatives of) the numerous different charities, and then some individuals. There CMRC members are generally individual researchers, like Chris Ponting (who is Deputy Chair). I presume Stephen...

The topic of ME services within the NHS was recently discussed at a ForwardME meeting. This was led by the charity reMEmber, who made some good points. I'm going to duplicate here, because I have a feeling this ForwardME link will likely change and may disappear. reMEmber’s observations on the...

With Sir Stephen Holgate stepping down as Chair of the CMRC, things at the CMRC have been a little uncertain as of late. The CMRC also recently lost its secretariat, which was Action For ME. AfME, and particular Sonya, has become very overstretched over the last two years, with key roles in...

A new ForwardME website is live (https://forward-me.co.uk/). The CMRC PAG recently sent feedback to Andrew, the new chair, about the website, before it went live last week. We feel it needs significant improvement and numerous edits. Minutes for the most recent Members Meeting on July 14 have...

"Patient looks well", too. Doubly lucky.

It would be good for someone to join for this reason. This is open to all clinicians; it's not a closed event only open to BACME members.

https://www.bacme.info/civicrm/event/info?id=11 The aims of this event are: To share experiences of the impact of Long-COVID on specialist CFS/ME services, professionals & patients To receive updates on national and local progress on the integration of specialist fatigue management pathways...

The major change is the addition of the table on page 51 of the newer document.

This document has been discussed on Twitter over the weekend. I think it might be worthwhile comparing versions I and II, so here is a comparison of the two documents (if the link works as expected): https://draftable.com/compare/UgEqXBfVchrM

That's not what's happening. Dr Strain said he'd like to trial monthly vaccines for long Covid, based on the evidence of some patients improving after jabs.

Low, not high, ESR has in the past been cited as a potential marker/finding of ME/CFS. I don't think these sorts of studies will lead us anywhere.

They never stop f*cking around with the NHS, do they? All the signs are this is not widely supported within the NHS, and that it removes barriers to NHS privatisation.

I believe I have what I what, thanks to a generous member.

Merged thread Does anyone have the main Benefits & Work PIP guide document that they can share with me? My membership expired in April and I'd like to get hold of this guide. Many thanks!

Ok, so it turns out the Protocol was published on the JLA website, but it’s hidden in the depths of the website. The final Protocol is here: https://www.jla.nihr.ac.uk/documents/me-cfs-psp-protocol/26824 I’ve asked that this and other key documents are added to the ME-PSP website.

Hi @MEMarge @Amw66 (I hope I'm tagging the right people). This page (https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm) states that the PSP Protocol should be published on the JLA website once it is finalised by the Steering Group. I don't think it has...