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Email received.

A scaled-up charity-led clincial care and support service cannot be a substitute for the NHS specialist services, even if it is of better quality. It would only ever reach order 1% of patients at a guess. I would much prefer the charities to campaign strongly for adequate reforms and funding of...

https://www.actionforme.org.uk/news/action-for-me-and-me-trust-exploring-a-merger/ August 04, 2021 On 3 August 2021, the Action for M.E. board approved a decision to explore a merger with The ME Trust after a process of due diligence started in June. The M.E. Trust is a UK charity that...

I believe stakeholders are to receive the guideline two weeks before release date, which is today. Unless anyone else has any other information?

Thanks. I always check junk mail. I was just giving a general heads up with other recipients in mind. I'm not sure if there's anything you can do at the 'sender' end?

This latest email went to my junk folder - just for information!

She couldn't even get the disease name acronym right.

I suspect he's a close colleague of Garner, as both work in infectious diseases at Liverpool.

I'd like to see the full article, if that's possible.

If it is going to kick off over the next few weeks, just a reminder about the PEM reanalysis palava. That was not professional at all. They lied to stakeholders about the reason for the delay, and they've done extra work after the draft that may have changed the recommendations.

Moved post "Before leaving the committee I have recorded my views on some changes to the guideline that have taken place following the Stakeholder consultation on the November draft" I suspect many stakeholders might be disappointed on Wednesday.

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That's outdated info, but I suspect even thought he has stood down as CMRC Chair, he will remain on FME Steering Group, though I notice he hasn't been at most of the recent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