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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Just deep, regular breathing basically! There's a feature on the app to guide you in doing it. Plus some blurb about its supposed benefits.
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I've done that, but thank you for offering! Got a reply saying they would raise it at the weekly meeting where they discuss user feedback.
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I've been using Visible for a few weeks and I'm pleased with it as a pacing aid. However I've been trying the 'coherent breathing' feature the last few days and finding it makes me feel worse; it also lowers my HRV, when the advertised purpose is to raise it. Today I scrolled through the...
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    Needing to lie flat

    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...
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    Trial Report Differences in brain structure and cognitive performance between patients with long-COVID and those with normal recovery, 2024, Nelson et al.

    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.
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    United Kingdom: News from #There for ME

    She's very good. You can see the strain of talking but she makes her points clearly.
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    UK: British Psychological Society: Long Covid to work on practice guidelines.

    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...
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    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    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
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    How to understand it: Brain fog 2024 McWhirter

    ... 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...
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    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    I wonder if there's any way to report these deteriorations, like the Yellow Card system for adverse events/side effects with medication?
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    The Telegraph continuing its efforts to ensure that the public health response to the next pandemic will be even worse than the last one.
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    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    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.)
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    United Kingdom: News from #There for ME

    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)...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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?"
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    'Independent inquiry finds serious governance failures at the Royal College of Physicians of London'

    An opinion piece in the BMJ by Trisha Greenhalgh, Martin McKee and a few others: https://www.bmj.com/content/386/bmj.q1983
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    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.
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    Long-term changes in wearable sensor data in people with and without Long Covid, 2024, Jennifer M. Radin et al

    plus of course 'people with LC who use fitness trackers and respond to healthcare surveys' is only a subset of people with LC.
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    Long-term changes in wearable sensor data in people with and without Long Covid, 2024, Jennifer M. Radin et al

    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).
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