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Yep. Also, the clinics—as far as I'm aware—lack any sort of central (national) organisation. The NICE guideline and BACME are the main common threads. I would be interested to know whether this sort of feedback exercise is mandated within the NHS for any new/revised NICE guideline, or whether...

I saw this on Reddit. Someone had posted saying they received a letter from their ME/CFS clinic, were dreading what it might be, but it turned out to be an invitation to be part of a patient focus group to provide feedback on the new NICE guideline—which they were happy about. I asked the...

Does anyone have access to this webinar?

mitochondria are not cells.

Get your wallets out lads (and lasses) - it's supplement and massage time!

https://www.quantamagazine.org/social-mitochondria-whispering-between-cells-influence-health-20210706 "Mitochondria appear to communicate and cooperate with one another, both within and between cells. Biologists are only just beginning to understand how and why."

https://www.quantamagazine.org/long-covid-how-it-keeps-us-sick-20210701/ "Understanding the effects of the COVID-19 pandemic on the population means knowing more than just the total number of infections and deaths. As with many diseases, after the acute infection has passed, a constellation of...

I think a Comms&PR initiative could be patient-led to begin with, with support from advocacy groups, patient communities, charities, and other formal bodies. At some stage early on it would need funding and professional guidance and help. We have thought about this as the CMRC PAG. We have a...

It looks as though it was the precursor to BACME (https://meassociation.org.uk/2010/06/questions-raised-over-training-role-of-new-body-for-mecfs-professionals/). Nothing to do with CMRC. The presentation was given to ForwardME in April 2009. https://www.forward-me.co.uk/10-th-july-2019.html...

Yep. We have to persuade everyone that this time those in authority got it wrong. I think it's doable. It's happening already in some quarters, e.g., with academics willing to speak up about the PACE trial and all its flaws. People are increasingly willing to accept that major institutions can...

https://valerieeliotsmith.com/2021/07/05/beyond-the-nice-guideline-mecomms-and-the-case-for-a-public-inquiry/ Lots to think about. We desperately need both a new comms & PR initiative and a public inquiry.

Yep. The release of the final guideline must be the start of a new campaign for properly funded, safe, adequate, specialist services - not some underfunded network of clinics with no central organisation, aims, or data keeping.

https://doctorswith.me/position-statement-2021-nice-guideline-update-on-treatment-and-management-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

The mindfulness arm tended to be more mindful. :alien:

I've just got a Polar H10. I hope to track HRV and see if the hype is justified.

I don't think we know what exactly the PEM 'issue' is i.e., what was said that prompted a reanalysis, and by who? I can't quite work out the most probable explaination. If this was BPSers, what must they have said? what are they arguing for with respect to actual changes to the evidence base...