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Yeah cos GPs never jump first of all to this kind of thing being psychological. If I recall correctly, Paul, when this happened in March-April 2020 people gathered online, sharing their experience of being told they should be better by now and maybe they have anxiety/depression. And then all...

It’s institutional/structural misogyny, that’s why.

I think that this was somehow “sold” as an idea to fit apps and the data set thing was shoehorned in.

OMG The PROMs are the new CBT You have to say you’re better even if you’re not (And by that I mean the “reinforcing GET” CBT that made you agree that overdoing it was good and didn’t make you sick)

I think the PROM is maybe one arm of an audit, if that helps. I read somewhere about a PROM being heralded as brilliant because the patients were having hip replacements and for some reason there were two types of hip being used. PROMs data showed patients had better improvements and faster...

I have been seen by ME Clinics and diagnosed GP (ME/CFS) ME clinic - Psychiatrist (Fibromyalgia) Rheumatologist (ME/CFS) ME Clinic- Psychiatrist (not ME/CFS) ME Clinic -Physio, with GP attached (never met the GP) (ME/CFS) ME Clinic- GP (ME/CFS) ME Clinic- ID consultant (ME/CFS)

I’m not the cleverest but does this mean we are we being treated by humanities majors and not medics?

I would be 100% “lost my phone/sim/reading glasses” soz.

I think they’re worried the clinics cant be assessed as offering value, which is slightly different. They will be replaced by an app in any case.

Personally I think PROMS for ME are a danger full stop (even if they were 100% ethical, and say, designed by us) because we don’t know whether we would have got better or worse without their intervention. In addition, anyone newly-diagnosed will have a little “boost” from being seen and given...

Again, that’s off topic from the question though. In a scenario where we are (factually) today, are PROMs bad for pwME or is just this one?

But the fact is the NHS is using PROMS and PROMS have been created for ME/CFS. My point is still “are all ME/CFS PROMS in the NHS going to be bad, or just Tyson’s one” rather than pondering whether the current design of the NHS, clinics, clinicians etc is wrong. I think we’d all agree the...

Is this “PROM” measuring “treatment” per se? A patient-reported outcome presumably can be applied in diseases which result in death or further debility. I’m sure some are just measuring “management” not treatment. The situation today is there are clinics staffed by the people they are staffed...

Are they in any way influential (beyond the usual self-referencing which that crowd does)

Genuine question - who cares what COFFI say, apart from its members?

I think if you’re employed in the NHS you shouldn’t need to seek charity funding to work on a project for the NHS. I think you should just work on it as part of your NHS duties, or get an NHS secondment, or accept that the NHS don't want you to spend your working hours producing it.

Some people just don’t want their beans to grow, do they.

I think it was harder to question the media pre-internet. You could be suspicious but hard to get your own research done, or it was done by fringe interest groups and you’d have to “find” them for yourself. Tabloids got really into “science says red wine is good for your heart” in the late...

Plausible deniability is important if you’re shilling an untested cure. COFFI please get in touch, I’ve got some magic beans to sell to you! They may grow all the way to a different world.

Stating that the earth may not be flat is raising public expectations that we are about to able to establish it is round. This is unfair as some members of the public may try to walk on a curve which isn’t there, and fall over, so please stop saying it. Or else.