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This thread from Keith Geraghty pulls apart this paper:

The short comment form for the AfME / M.E. Trust merger closes tomorrow morning. I've just sent some brief comments.

There's more on the homepage about his recovery from a relapse based on treating 'proprioception dysfunction'. http://people.bath.ac.uk/ac886/PDSandMECFS.pdf

This is an academic homepage, so the author is the person who's webpage it is. In this case, that is Alastair Craw (home is here https://people.bath.ac.uk/ac886/)

That's not what he said. You are mishearing 'improved' as 'increased'. The exact quote is: "over many many many months I improved slightly, and when I improved slightly I just felt better for longer...". He then goes on to say: "I must stress here: I didn't feel better because I was doing more...

I would thoroughly recommend this video. I know Phil, as others here do. He has been involved with M.E advocacy for many years—first with Westcare and then Action For ME, as well as the CMRC PAG, and now has a role with DecodeME. He had M.E and recovered over many, many years with strict...

See my posts from July: United Kingdom: CFS/ME Research Collaborative (CMRC) news The CMRC will remain a separate entity as a new Chair was found. The CMRC PAG remains a member of FME (though not in Steering group), but our primary role is still to provide a patients' voice to the CMRC.

This is, as far as I can see, an effort to exert some sort of pressure on NICE and their decision to pause. This is not about reopening/revising the evidence base. This is not 'for NICE'. They already have evidence of harm, and acknowledged they had seen such evidence in the guideline.

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.