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That's great, thank you

Those of us who block trackers on our computers/phones can't see tweets - we either get blank space or an error message. So it would be really useful and appreciated if the text of tweets could be copied and pasted into posts. Sorry for the extra work!

There really is! One organisation is funding gamechanging medical research, getting their message out on the BBC, and pushing the DHSC on the delivery plan. The other one wants to send us a packet of seeds and a colouring sheet.

The ethics process also should have flagged up the dishonesty* of using first-person pronouns to give the false impression that the autogenerated text is being produced by a human personality with which the user can develop some sort of relationship. These things are tools and everyone involved...

And even if ultimately each individual has to figure out the tactics of pacing for themselves, there is still a value in having an authority figure giving you encouragement and validation, because there are so many other external factors pushing you *not* to pace.

Authors could have stopped there really.

@nanay I really hope you are continuing to read this valuable detailed user feedback and that you are engaging honestly with the implications. These aren't cosmetic issues to be tweaked, they are major flaws in a product being marketed to a patient population at risk of harm.

There was this one by authors including Garner and Carson, which obviously has issues of its own. https://www.s4me.info/threads/challenging-the-current-hypothesis-that-thrombosis-is-responsible-for-the-post-covid-19-condition-2024-carson-davey-smith-garner-et-al.39004/

Saw this posted on social media today with a comment about how "exercise cleanses your brain!" which is clearly very oversimplistic (the study is on anaesthetised mice having their abdomens mechanically squeezed and the resulting movement in the brain). But it might be interesting for those...

You're now the second person to tell me that nettle tea has a good effect on their brainfog. Sadly it does nothing for mine! At least it was a pretty cheap and easy thing to try.

Expectations being managed downward.

What are they identifying as 'neuroinflammation' and 'neuroinflammatory activity'? (I've tried looking at the paper but too foggy.)

The impression it gives is that they think people just need to be jollied along, and they don't believe there's any underlying problem which might be made worse if people are given harmful fake advice.

although, how reliable is the DSQ in measuring severity of PEM (and their choice of cutoff)?

but limitations:

The higher heart rate in controls seems interesting - is this seen in other CPET studies?

Post-Covid, declined to severe after about 8 weeks of trying to "shake it off" and do normal life stuff despite feeling rough.

Or maybe Oonagh Cousins' account of how Long Covid stopped her from Olympics rowing training.

That's reminded me that you can also go back and retrospectively change your scores in Visible - it reminded me because I often don't really know how a "crash" is defined and if I was having one, as opposed to the much more grey areas of PEM as it develops and disappears. So sometimes I would go...

This was one thing I did find useful with Visible (the paid version): you can set it to beep when your heart rate has been over a certain threshold for a certain amount of time. So it wouldn't beep for every single HR spike, which would just get annoying, but it would beep if I'd got into that...