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    The Guardian. Series of articles about people’s lives with long Covid

    Paul Garner is a signatory to one of the letters responding to the article about Toby here https://www.theguardian.com/society/article/2024/jun/18/concern-over-children-with-long-covid-and-theories-on-its-cause At least the letter itself doesn't include any psychosomatic waffle, although it...
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    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    No idea if this is relevant or any good, but someone I follow on Mastodon just posted a link to this with the comment that it's good to see a study taking menstrual cycle into account when looking at POTS. "Abnormalities of Angiotensin Regulation in Postural Tachycardia Syndrome" 2011...
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    : TV casting call for people living with ME/CFS

    Rifle shooting? Especially the category where you can lie down?
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    Sound sensitivity

    (Not really sure where to post this, sorry if it's off topic) I was half-listening to the BBC 6 Music breakfast show as usual today. Someone who'd called in to suggest a song started talking about his partner who has Long Covid, and how they can't listen to music together the way they used to...
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    The Guardian. Series of articles about people’s lives with long Covid

    or maybe she's just getting better.
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    : TV casting call for people living with ME/CFS

    This. All the well-meaning friends and relatives saying "But that person on that TV show said it made them feel so much better! Are you sure you couldn't just try...?"
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    Adam Mastroianni - blogs on research methodology

    Unserious Science The first section of this article by Adam Mastroianni made me think of quite a few studies that show up in the psychosomatic subforums... https://www.experimental-history.com/p/surely-you-can-be-serious
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    UK: University College London hospitals (NHS)

    Also https://www.ipsea.org.uk/ is a great source of advice on statutory rights for young people with medical issues.
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    Comparison of measures of functional capacity and the way the questions are worded to take into account ME/CFS limitations

    Thinking about this a bit more: the consequences of doing an activity are the direct result of how ill you are. Your decisions on how to adapt that activity or avoid it (if you can) are based on the consequences you've experienced and/or can predict from doing it, but also affected by other...
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    Comparison of measures of functional capacity and the way the questions are worded to take into account ME/CFS limitations

    What I find deeply confusing about the MEAQ is that it has so many overlaps. 'Adaptations' are factored into some of the activities listed, but are also included in one of the answer options. eg 'Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)' and there's an...
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    ‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with long Covid

    "Lucy’s GP diagnosed her with long Covid and referred her to a specialist clinic. The help she got was limited. “Every medic I saw did their best, but it was all so new; nobody knew anything. I got introduced to graded exercise therapy, to try to improve my fitness, but that just set off a...
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    and if you're a parent researching the condition because your child is suffering with it, face having that used against you in an accusation of FII that could tear your family apart.
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    Dr Karl Morten - UK researcher based at Oxford University

    Seems extraordinary that a research group at one of the flagship research universities in the country is having to beg for £10 donations on the internet (from a patient population which almost by definition has little spare cash). edited to add: I don't mean this as a reflection on the...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    That makes no sense. You can't tell how well a questionnaire is picking up changes unless you have another way of measuring the changes. It's like sticking a thermometer into water at different times and saying 'this will tell us the temperature of the water, and also whether our thermometer is...
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    Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

    That reminded me of this: https://www.newscientist.com/article/dn17064-quack-remedies-spread-by-virtue-of-being-useless/
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    UK:NHS: Feel Good Tennis for Long Covid

    Week 1: 'Understanding Long Covid' and 'Symptom Recognition'. As long as those symptoms don't include 'being too ill to play tennis'.
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    OpenAi's new ChatGPT

    Text generators in a nutshell. Great if you want a squishily averaged synthesis of general opinion. Not great if you want factual accuracy - though it can look like it if you're asking about a topic where fact and general opinion happen to more or less overlap.
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