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Thread here: Opinion CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that, 2024, Vink

Quoting from the Terms used in the guideline: That says to me that it's possible within the NICE guideline to have a physician led team with access to others as listed. It doesn't say the team has to be run by therapists, as is currently the case in many NHS clinics.

I think it was the case of a politician temporarily in a position to do something (Sajid Javid as secretary of state for health with a family member with ME/CFS) and thinking the best approach was to get civil servants to run a consultation and come up with a plan. That was always going to end...

I don't think we're disagreeing. Physician led includes access to specialist nurses, dieticians, and other services as individually needed. What I don't think we need is a team run by therapists.

I will wait with a little hope for the government to publish its plan, but I hold out little hope it will be any better than what we have now, which in my area is worse than useless. My impression has been that local people were so pleased to have a clinic and a nice OT telling them to fill in...

We're currently preparing an appeal against this decision and the lack of information in the letter telling us the outcome.

I started from the end of the documents, don't ask me why. Came across this self aggrandisement from Sonya Marshall Gradiznik Really?

sadly because that's exactly what's happening.

I quoted from these in our letter to Cochrane about harms in March 2024: https://www.s4me.info/threads/s4me-2023-open-letter-complaints-petition-updates-regarding-cochrane-and-the-cfs-exercise-therapy-review.34973/page-2#post-521800 This is the key points from the chapter in adverse events...

I've done it too. I focused where possible on medical education, accessiblity of care and the importance of understanding PEM is not the same as the effects of deconditioning, and telling them to scrap the current GP guidelines that recommend GET.

I haven't read the whole chapter, I've just skimmed it. It seems to be a thoughtful look at the experiences of people with ME/CFS and Long Covid, and the mixed feelings of people with ME/CFS who saw the long term effects of Covid coming and the mix of hopes of more solidarity and research...

I got stuck on the first bit where they define ME/CFS as exhaustion and 'substantial decline in social and psychological functioning'. Since when has a decline in psychological functioning been a defining feature of ME/CFS? It reads more like a description of burnout, or of a mental breakdown.

I really dislike such superficial questions, and they don't seem necessarily ones I would want my doctor to be taught as an intro to ME/CFS or LC.

Does anyone know what is going to be in the plan? I worry that a fund the plan campaign may end up asking for funds for more BACME style clinics.

Given that you haven't listed qualifications of signatories, how will the recipient know?

It might be worth submitting the letter through the Cochrane comments or complaints system. When they announced the cancellation in December they explicitly stated that they would not take any notice of letters addressed to Cochrane individuals. They would only consider comments or complaints...

Thanks, @dave30th, much appreciated. To be honest I can't help wondering whether it would have made a difference if clinicians and scientists had tackled Cochrane sooner. I don't know whether any have done so privately.

I don't get the impression from the abstract that the authors mean the public ignorance is about the biology of LC. I thought it meant there is public ignorance and willful denial about the existence of LC as a seriously disabling illness. The consequence being that individuals see no need to...

Larun et al only included 8 trials, most very small. The whole review process is a major performance trying to squeeze some semblance of evidence of efficacy out of flawed trials. A quick read through the 8 trials would have told anyone unbiased and sensible that there was no evidence of...

It shouldn't take 3 years. They are mostly reviewing a single treatment, as far as I know. Compare that with the NICE evidence review that had to review evidence on all treatments and management for a condition and produce a guideline including taking feedback. I think that whole process only...