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    Well-known, famous people with Covid-19 and Long Covid

    Hard to read about this guy repeatedly pushing himself into crashes, and reinfections giving him new problems. "“Every time I’ve had Covid, my long Covid has changed,” he said. Since his most recent infection, in January, he pauses more when speaking, he said, and is more halting when writing...
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    Differentiation of Prior SARS-CoV-2 Infection and [PASC] by Standard Clinical Laboratory Measurements in the RECOVER Cohort, 2024, Erlandson+

    The Guardian's story on this was subtitled "Four-year study of patients finds ‘markedly few’ differences between people who have long Covid and those who do not” :banghead: I emailed the readers' editor and it's now been changed to "...'markedly few' differences in test results between people...
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    Trial design for drug trials for ME/CFS - discussion thread

    I'm another one who does seem to get a minor benefit from LDN and had that overstimulation-overexertion issue when first going up to a higher dose. I also wonder about what the dosage recommendation is based on, whether bigger studies could look at different doses and ways of taking it.
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    Review Long COVID: a clinical update, 2024, Greenhalgh et al.

    I would love to know whether Prof Greenhalgh avoids crowded indoor spaces and wears a well-fitting mask when she can't avoid them. I mean I would genuinely be interested to know. There's such a lot of do-as-I-say-not-as-I-do among the scientific community about Covid precautions.
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    Resonant breathing improves self-reported symptoms and wellbeing in people with Long COVID 2024 Putrino et al

    The physiotherapist at my LC clinic suggested I try this technique. I found it really difficult and unpleasant: almost immediately I would feel lightheaded and see stars, then would come a point where I'd automatically have to take big gulping breaths until I felt relatively normal again. I told...
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    'Systems Generated Trauma' research

    https://cerebra.org.uk/research/systems-generated-trauma-survey/
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    Deciphering Alveolo-Capillary Gas Transfer Disturbances in Patients Recovering from COVID-19 Lung Disease, 2024, Hua-Huy et al.

    Interesting stuff. Looking at tags, there seem to be a few papers that have found the same sort of thing, but it doesn't come up much in general discussions of Long Covid.
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    Maeve Boothby O'Neill - articles about her life, death and inquest

    If he really wants people to 'put aside polarising narratives' and engage in productive conversations, I'd suggest that a positive first step would be for him to stop employing the glaringly obvious strawmen and false equivalences which make it very clear that he's engaged in a spin operation.
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    Well-known, famous people with Covid-19 and Long Covid

    Ah thank you, that's not a thread I normally look at!
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    Well-known, famous people with Covid-19 and Long Covid

    https://mastodon.social/@_slotek_/112847835155852556
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    Changes in fatigue symptoms following an exercise-based rehabilitation programme for patients with long COVID 2024 Daynes et al

    To save anyone time if you were thinking of going to read the paper: it's just as weak and dishonestly slanted as you might be imagining.
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    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    Seen on social media, not an ME case but relevant to eating difficulties being treated as a mental problem not physical: https://www.justgiving.com/crowdfunding/Help-Megan-debs-wood
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    Maeve Boothby O'Neill - articles about her life, death and inquest

    It's interesting to see journalists being unafraid to present the psychological view of ME as a causal factor in the failings of care. I wonder if we'll see any pushback from the BPS guys (via the SMC?)
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    Open I am looking for people in the UK who could share their insights and experiences of education

    There's a group called Not Fine in School for parents of children experiencing exclusion from education for a range of reasons, including health conditions - they might be able to give you some contacts. They have a Facebook group just for parents and carers which has 60,000 members, but their...
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    National Autistic Society says media reports on an autism cure study are ‘deeply insulting’

    Postscript: sometimes the amazing improvements reported in case studies of toddlers turn out to be mainly that they got a couple of years older (but their parents spent a massive amount of money so we have to do a write-up).
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    National Autistic Society says media reports on an autism cure study are ‘deeply insulting’

    My perspective on this is that I'm autistic and I have an autistic child who would fit the 'severe' categorisation (at a specialist school, may never live independently, etc) except for being verbally fluent - the concept of 'severe' autism normally includes being non-verbal or just speaking a...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    PIP consultation closes at the end of today. It's a stupidly long form that you can't save - but there's no requirement to answer all the questions. I just picked one box and wrote a couple of sentences...
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    Website - Long Covid: The Answers

    I found it hard to navigate - it's cluttered and visually overwhelming with a lot of irrelevant pictures and repetitions. Might be more useful for people who don't get brain fog! Relatives and friends of patients maybe.
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