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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.

So you are objecting to PROMs?

So would I be right to summarise as the problem being Tyson et al?

So at point7 it gets all Garnerish and doesn’t make sense, so I stopped reading

Not sure if this is a helpful line of thought, but are we objecting to 1. This iteration of a PROM for pwME Or 2. Any PROM for pwME 3.would it be possible to write a PROM for ME/CFS without it being harmful? 4. Would it be possible to write a PROM for ME/CFS that is useful to pwME? I think...

Yes I can’t remember what appointment it was, but I was “greeted” early on with a “what goals can we help with, getting out? Doing hobbies,day trips?” and I was like, well no my “goal” is to wash daily. Strangely, not something they had any help for.

Well done but also take care!

BRAD-MDQ stood out because Bristol. It was developed by University of West England UWE and it is a PROM https://www.uwe.ac.uk/research/centres-and-groups/chcr/research-themes/mambo/fatigue-research