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Thanks @Trish. Interesting only just seeing ads appearing on FB. Not gone into the detail of it, but the ad does seem to be saying the right things, at a brief look.

Merged thread I've noticed this being touted a lot in Facebook in the last few days. Thoughts? https://www.makevisible.com/

I'd not realised an ethics committee was so informal and unregulated ... and unpaid. If all involved are properly competent and suitably qualified, then it doubtless works fine. But it is of course, as our well known researchers have proven down the years only too well, wide open to abuse...

Perhaps I should have said "lack of understanding, or willingness to understand", which would still be applicable to their approach to research.

A proper process should not be heavily reliant upon which end of the scale of the mixed bag an ethics committee happens to be or not; a proper process would minimize the variability due to this. If this were the case in aircraft/vehicle/pharmaceuticals safety engineering we would be seeing no...

Yes, my point really was that everything pertinent should be up for discussion, no matter what. Whether the potential outcome of such a discussion may or may not fit with someone's aspirations is utterly distinct from whether the discussion should take place or not. It is also clear that a...

Thanks for the correction, I'd forgotten the significance of that. Which of course is why their research is so blighted by spurious reasoning. Which can and should be a perfectly valid subject for discussion; refusing to discuss something important because afraid of the outcome is very...

The very fact that NICE is having to explain to the authors of "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis" exactly how the NICE process works, how rigorously science based it is, and how it...

Compounded by a disparate collection of psychiatric researchers who seem much more motivated by the eminence and influence gained from their research over the years, rather than by the quality of their research. I suspect they are still convinced of their own infallibility as scientists, but in...

A good read.

Excellent to see. Possibly worth noting re the asterisked note: exercise is not only a high-risk trigger for PEM, but also a potential risk for permanently worsening ME/CFS.

My understanding has always been that masks do not really protect the wearer, but primarily protect others from the larger droplets expelled when you cough, splutter, sneeze etc. So by no means foolproof, but a beneficial contribution to the numbers game. I seem to remember that was the main...

There is no avoiding a bald truth of this: The death of Maeve and others is squarely the responsibility of the BPS brigade, especially the "well known names" who have subverted science and medical care for ME/CFS sufferers down the decades, in their greed for prestige and acclaim etc. But even...

I fully appreciate that the most important thing with all ME/CFS research is to benefit the health of patients, but I cannot avoid also looking forward to the time the pseudo-science quacks have to choke on their own words one day, once the underlying physiological cause is identified.

Yes, I agree with you of course here Trish.

These people have their heads up each others' backsides. (Echo chamber?! :rolleyes:). Only see what they want to see, without caring to see truth.

No, not what I mean in the slightest, and you should fully know that when I spoke of proper trialling, I'm not blindly suggesting people start gobbling whatever stuff people think might be helping. You should at least know me a bit better than that by now Andy. What you say here is...

Then maybe that should be trialled. But if nothing gets trialled then nothing will be learnt. To ignore all possible clues seems irresponsible to me, to not try and home in on what is actually going on. There can be a fine line between going on wild goose chases versus being closed minded...

It feels to me there is enough anecdotal evidence around to justify a proper clinical trial to be considered, or at least a proper scientific study of any evidence to date. I imagine much of medical scientific progress starts out by people observing unexpected correlations, and then doing proper...

That likely explains the reason for being excluded. Rational critical thinkers not welcome!