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    No reduced serum serotonin levels in patients with post-acute sequelae of COVID-19, 2024, Mathé et al.

    Reduction in serotonin transporters in the brain wouldn't necessarily correlate with overall serotonin level in the blood?
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    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Just wondered if the #ThereforME campaign is aware of/has signed the petition? (sorry if I've missed it)
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    Review Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Quick References. 2023, Agrawali

    It's the kind of thing you find in Peter Gladwell's stuff about 'if you choose to increase your baseline...'
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    Follow-up of patients with post covid-19 condition after a multidisciplinary team assessment: a pilot study, 2024, Wigge et al.

    I notice in Table IV that all the women who said the intervention was helpful rated the helpfulness as 'small-moderate'. Of the two men who said it was helpful, one rated the helpfulness 'small-moderate' and one 'big'.
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    Should we be trying to increase butyrate in the gut?

    I googled 'butyrate diet'. The second hit was a study in mice finding that a high butyrate diet made them more susceptible to e coli, and the third was the Cleveland Clinic saying high butyrate levels can cause bloating in those with a 'sensitive gut'.
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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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    #ThereForME campaign / Building an NHS that’s there for Long Covid and 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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    #ThereForME campaign / Building an NHS that’s there for Long Covid and 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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