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Broadly agree from my experience of Long Covid: first few months featured significant fatigue and generally feeling dreadful and fuzzy in the brain, but the OI/PEM stuff (including the urgent need to lie flat at times) didn't develop until months 3-5 ish. I generally prefer resting sitting in a...

Just so tired of this 'Patients reported cognitive symptoms, but we ran some brief and limited cognitive tests and didn't find much, so they must be imagining it' routine.

She's very good. You can see the strain of talking but she makes her points clearly.

We can only hope the contributing members won't be the same ones who wrote this stuff in the BPS Response to the NICE consultation on the Draft Guideline on Management of Long-Term Effects of COVID-19 in December 2020: https://cms.bps.org.uk/sites/default/files/2022-06/BPS Response to the NICE...

See rvallee's post above in this thread re Cambridgeshire & Peterborough https://www.s4me.info/threads/curable-mind-brain-training-app-and-me-cfs-including-the-role-of-fiona-symington.37776/page-6#post-523596

... when you test for it using blunt instruments that don't properly identify it, and refuse to do any more specific testing on the grounds that it would 'medicalise' the situation. Then you can happily reassure yourself that the patients are wrong, you are right, and all is for the best in the...

I wonder if there's any way to report these deteriorations, like the Yellow Card system for adverse events/side effects with medication?

The Telegraph continuing its efforts to ensure that the public health response to the next pandemic will be even worse than the last one.

And NHS clinics are pushing this app on patients. (Because they really think it works, or just because it's cheap and they think the patients aren't really suffering from anything that could be made worse by mismanagement? Either way, horrible.)

I think the tweeter might be confusing association and causation.

I notice Louise Cummings' name in that list - she published this on language and cognition impairment in Long Covid, which looks like she understands it pretty well. (I especially liked her discussion of how traditional cognitive testing is inadequate to identify these impairments)...

I keep thinking of this cartoon, 'You Get What You Measure' - especially re bobbler's question "Is this going to be another accessibility barrier for those who are too ill to be filling these things out?"

An opinion piece in the BMJ by Trisha Greenhalgh, Martin McKee and a few others: https://www.bmj.com/content/386/bmj.q1983

especially as the 'snapshot' doesn't seem to have any way of distinguishing between a symptom that isn't currently causing problems because you're managing your days carefully to avoid/reduce it and a symptom that isn't causing problems because you don't have it.

plus of course 'people with LC who use fitness trackers and respond to healthcare surveys' is only a subset of people with LC.

I wonder if that's people at the 6-month stage still trying to be 'normal', so they keep overexerting and crashing and lying flat out and switched off, whereas by a year they've worked out some kind of pacing that allows for being more active day to day (just not as active as when they were well).

It's the accompanying letter that says: here's your £10, and if the DWP has accidentally overpaid you then you'll be subject to legal proceedings and sanctions. So very festive and Christian.

It's a good point that just 'discovering' something isn't enough to make it known, there are all the other steps of having it recognised and brought into mainstream knowledge, or even specialist knowledge. Which is relevant when we're being told that AI is about to revolutionise medicine and...

like Type 1 and Type 2 diabetes maybe?