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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...

Now available on YouTube

:rofl: Don't give Hollywood any ideas.

I had no worsening of symptoms in the days following my vaccines (Pfizer), but I've had a really bad few months, and I'm trying to ascertain whether the vaccines have played a role. My stamina / endurance has reduced from already low levels, less energy overall, and increase in muscle soreness...

I watched yesterday, and thought it was good. Too many assertions about etiology and following particular hypotheses. And I did not understand the German doctor who used length of crash to distinguish between PVFS and ME/CFS. I think she just made that up.

I don't think this is unusual now. There's been a gradual move away from GET and in some cases ME-CBT.