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It is almost axiomatic that every accusation from them against their critics is actually a confession of their own failings. I can't remember the exact numbers, but the proportion of patient reps on the NICE guideline committee was way below what was required to over rule the non-patient reps.

That is my view. We are at the end of the beginning of the Covid-19 story. The main act is only just starting, and it is going to be a long one.

This is the sense in which I use that word when I say that ME can be a distressing disease.

That BPS brain worm sure is a persistent little bugger. *sigh*

Robust methodology would be a good place to start. Insisting on falsifiability in models and trials, for example. Just saying. The BPSM has been biomedicalized We have a long way to go. :facepalm::banghead::ill::grumpy:

Scientists need to start blowing the whistle a lot more on this problem.

Yes, there is a reason we used to do convalescence. And it had nothing to do with malingering or being psycho-pathologically sensitive to one's bodily sensations.

The more I see of celebrity anything, in any context, the more I think we should stay away from it. Seems too often a problematic and costly way to do things, including to the celebrities themselves. Particularly in a highly contentious and charged debate, on the most serious of matters.

That works. As somebody else said, the more we do do, the sicker we get.

Up-pacing :banghead:

:grumpy:

brain scans of FND patients appear to demonstrate that conscious parts of the brain have become over-involved in movement Even if true, how do they know that is not because something in the body has changed that imposes a higher demand on movement, and hence involvement of the conscious in...

This is the next battle. Preventing the BPS mob from trying to end run around NICE by i) changing an existing diagnosis of ME to FND, or ii) diagnosing FND in addition to ME, or iii) just diagnosing new (i.e. undiagnosed) ME patients with FND, thus conveniently disappearing ME from the start...

The games with words, statistical thresholds, and patients' lives continues. :grumpy:

Thank you, @adambeyoncelowe Which is why I am in favour of a circuit-breaking robust transparent independent formal inquiry in the UK into this particular issue, with the power to order documents and witnesses, and interrogate under oath, in public. This toxic defamatory shit is not going...

This is important and encouraging. For reforms to stick they need bipartisan support.

This is encouraging. Thank you, Mr Javid. Will depend heavily on who is on the panel. Pick wisely, Mr J. Thanks also to everybody who worked hard for a long time to get it taken seriously by the political mainstream in the UK. That is every bit as important for us as getting the science...

They seem to not grasp that it is not just patients' subjectivity that needs to be properly controlled for for, but also the researcher/clinicians' subjectivity.

I don't think the medical profession is her target.

Au contraire, they value certain outcomes highly. Just not the ones you and I do. :(