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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

They're just documenting their own issues at this point.

Yes I think the European preparation is more about being stocked up if internet/power/supply chain fails. I think it’s good habits to get into, keeping a supply of stuff you’re using anyway. No need to build a shelter and stuff it with guns and army ration foods like in the USA.

Not that this is really helpful, but I am always very aware of my lymph glands when they’re tender. The throat ones are generally tender but the groin and armpit ones have made themselves known through the years. In fact, I-didn’t know you had them there, until they started bothering me.

Well imagine being stuck at home unable to wash or cook or do anything (!)

I always bulk bought toilet rolls. This made me look a bit bonkers having 48+ rolls at any time, but then Covid happened and I was sitting pretty! I think I should get emergency bottled water maybe. And some cash in coins and small notes. I think the more likely emergency in UK would be loss of...