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That probably would have helped. I expect they've received lots of feedback from all member organisations of FME and now it's just a case of waiting for the site to be updated.

Can I please suggest we start a new thread for press and media for the guideline release. This thread is getting very long and much of the content posted recently isn't about the draft guideline.

As I noted somewhere in this thread, we submitted lots of feedback on the website. It needs lots of work. We didn't know the test site was going live before our feedback and corrections had been considered. I think (hope) it's a work in progress.

Google "does metabolism slow down with age" Then look at the results, as well as the sample answers from the "People Also Ask" section. Every answer from every webpage would be wrong according to this study, e.g...

Many people believe metabolism ramps up in teenage years, peaks in 20s, and declines from 30s, as has been taught in the past. This study disproves this.

The actual paper is here (again, paywalled): https://science.sciencemag.org/content/373/6556/808

It's certainly overpriced in the circumstances you describe, but not—as in my case—if the speed guarantee is 32Mb, which is slightly higher than what I get now for £25 a month.

Ah sorry to hear that. Perhaps worth trying again as maybe they were having teething problems? No, I am with NowTV broadband (until tomorrow).

https://www.bt.com/exp/broadband/home-essentials I've just moved to this. It looks like the speeds will be no less than my current plan. Who can get BT Home Essentials? New or existing BT customers can apply. You’ll also need to be receiving one of these benefits to qualify: Universal...

There are people posting on Facebook—under an ME Association post about this video—saying they have seen this physio and were very happy with her approach, which reveals that there really is no need for the old silly narratives of deconditioning, etc.

Coincidentally, I have just posted a blog on this very topic. See thread here: https://s4me.info/threads/blog-bacme-nhs-me-cfs-clinics-shift-from-deconditioning-to-dysregulation-model-of-me-cfs-in-anticipation-of-updated-nice-guideline.21784/

https://domsalisbury.github.io/mecfs/bacme_dysregulation/ I have written more about the emerging theme of a 'dysregulation model of ME/CFS' from members of BACME, and what this might actually mean in practice. Coincidentally, @Sly Saint has today posted about an addition to the BACME website...

Was there a decision about who could discuss the embargoed final guideline with regards to S4ME's position as a stakeholder?

Email to stakeholders from NICE with final guideline.

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!