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These are new documents, added in the past month. There are people in BACME driving for change, and there are those who are more wedded to the old narratives. I sense a 'managed climbdown'.

I think this guideline will be the start of the end for 'CFS/ME'.

I think there has been a request from Dr Myhill (perhaps the Dr in Countrygirl's post), as well as a separate one from Tanya Marlow, and it's all got a bit confusing. Anyway, while I appreciate the effort, I'm not sure this is a worthwhile use of resources. NICE has already acknowledged harm—if...

Yep. But I'm pretty sure that is not Tanya Marlow writing there... It's all very confusing and it's not the right approach.

This is (clearly, to me at least) a case of crossed wires. NICE wouldn't ask for 50 stories by the end of the day! This is for NICE, not from NICE. It is a request from a patient (Tanya Marlow), who is collating stories.

NICE has just written to stakeholders explaining that the guideline has been 'paused'. I don't know what to say! I am fuming. This post has been copied and discussion is being moved to a new thread: NICE pauses publication of updated ME/CFS guideline hours before publication - 17th August 2021

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.