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They're trying to stake a claim to rehabilitation, and set the patients as being anti-rehab (because the BPS lot think that patients think anyone who gets better was never ill with ME/CFS, which is generally not the case): GET and CBT are rehabilitative, whereas pacing is not.

This is a essentially a response to the NICE guideline, and the associated debate over key issues, that somehow manages not to mention the NICE guideline once!

These papers are helpful, but do we need a new one every six months?

A 10cm increase over just 100 years seems quite remarkable.

Scotland has it's own version of NICE (SIGN), so I don't think we should automatically expect this website to change due to the new guideline.

Yes, his income is likely nearly all from his 'ecosystem', but the LP claims to treat all sorts of conditions—essentially anything that is unexplained by conventional medicine.

I mean he works privately so I expect this might not affect him that much. If people are willing to consider the LP, a change in the NICE guideline probably won't be a dealbreaker.

Faith-healer Dr Phil Parker is not happy about NICE's decision to recommend against the Lightning Process.

This was distributed to stakeholders yesterday:

It seems there is a new BACME members survey - the one cobbled together in August when the pause was announced.

Copied from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion It seems there is a new BACME members survey - the one cobbled together in August when the pause was announced.

That's probably true. But then that's not a barrier to the use of images of real patients, because they would be provided free. So what are the barriers? Lack of access?

You have to understand the process by which journalists and editors obtain these photos. I don't know how it works; I suspect it involves some sort of software or online program to access images, probably from respositories like Getty that host stock images. The first step is to understand the...

I think a little campaign for all the NHS websites to be updated in this respect would likely succeed. Something for the coming months.

I often have to re-login on this site, even though I'm already logged in. Never sure why... It's probably a browser cookie issue.

I have created a thread to share and analyse/discuss the information obtained from my FOI request about the decision by NICE to pause the guideline. https://s4me.info/threads/foi-request-materials-pertinent-to-the-decision-by-nice-to-delay-publication-of-the-final-guideline.23023/

I've just had an email from Rupert at NICE in response to an email I sent this afternoon asking why the substantive error I pointed out hadn't been corrected (or, rather, I asked had it been considered, given that there was no changes to the text). It turns out that they uploaded the wrong file...

Still no response to the various FOI requests about the decision to pause. Now severely overdue. Really not on. I am tempted to threaten to take the matter further if no answers soon. I bet they are waiting for the guideline to be published.

I think this is probably the case, and could be due to hypothalamic–pituitary–adrenal-axis dysregulation. I notice when I'm crashing my mood sinks massively. It's as if it's a direct physical reaction, and it doesn't matter what's going on in my mind.

Yep the term is a little unfortunate, so that would help. I think, and hope, we are certainly past 'emotional dysregulation'. Whether we are past 'thoughts and behaviours maintaining dysregulation'... I'm not so sure.