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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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    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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    UK: Raise the DWP Christmas Bonus from £10 for the first time in 51 YEARS!!!*�

    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.
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    We’re not going to run out of new anatomy anytime soon

    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...
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    Stroop task and practice effects demonstrate cognitive dysfunction in Long COVID and ME/CFS, 2024, Baraniuk et al

    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.
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    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    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...
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    Hyperbaric Oxygen Therapy for Long COVID: 3-Month Follow up Results from a Prospective Registry of 232 patients, 2024, Jur van Berkel et al

    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.
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    Judge rules forklift truck driver's rare Long Covid symptom is a disability

    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...
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    German late night comedian Jan Böhmermann covered ME/CFS and Long COVID

    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.
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