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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?

The pandemic experience was very different for different people.

or they'd just use a pair of colours that aren't confused in colour blindness? Last time I did a Stroop test it was red and blue.

Something that seems to happen a lot in ME research is that the patient group shows much more variance than the healthy controls (as in the red group compared to the blue group here: most of the red lines slope sharply up or down while most of the blue lines stay nearly horizontal), but then the...

I think those unimpressive numbers probably say more about the success or otherwise of the c.40 sessions of treatment (which the patients were paying for) than whether they improved by a few points on the SF-36 questionnaire.

The neurologist who tried to pin FND on me made a similar distinction - he was happy to agree that I'd initially had Long Covid, i.e. some lingering symptoms after acute infection, but that this had now "transitioned" into FND because I was traumatised by the illness so I was imagining myself...

ho hum

hmmm

Lots of posts and comments about this video on Mastodon from people who aren't the regular LongCovid hashtag crowd. Seems to be cutting through.

The enormous difference it can make when someone sees you as a person rather than a case.

Funny how knowledge about long COVID is the first thing patients expect, but has disappeared from the list once we get to the recommendations for how HCPs could do better.

They defined 'post-Covid conditions' as 'COVID–19–related symptoms lasting 4 weeks or longer', which will apply to so many people that you can find almost anything you want in the dataset.