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Having reviewed the BACME document, along with viewing a BACME webinar on dysregulation in ME/CFS, I can safely say that they are not using the term in this sense, and there is no mention of 'emotional dysregulation'. We see the term dysregulation used all the time in biomedical ME/CFS research.

I had an email exchange with Sue Pemberton after I published this blog. She sent some comments on what I had written, along with a survey on patient outcomes and experiences that the Yorkshire Fatigue Clinic carried out. She didn't want me to share her email on a public forum. I'm not sure if...

Yes, accepted but not published yet. These university research portals often list accepted manuscripts before publication. I'm sure we all can't wait until publication day.

I think a lot of this has come from the discussions on structural issues and co-morbidities (particularly EDS, MCAS, and mold issues) that we've seen over the past few years. MEPedia has a page on collagen, including some clinical findings, which is unsuprising given it is run by MEAction and...

I would probably stay away from Amazon if you want to be sure you're getting the real deal. Any person can import from China (for example) and sell in UK without ever getting near the product. You could try somewhere like Medisave https://www.medisave.co.uk/

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