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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.

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/