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    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    https://innovationlibrarynenc.org.uk/result/elaros-tracking-long-covid-app/ Under 'Plans for the Future / spread and adoption':
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    Structured Exercise after Adjuvant Chemotherapy for Colon Cancer 2025 Courneya et al

    So the treatment group got not only exercise training but lots of personal contact with HCPs (and "behavioural support"); did the control group get anything to match that?
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    Post-COVID-19 syndrome in children and young people: awareness among paediatric trainees in South Wales, 2025, Ahmed et al

    = no authorisation for school absence, and if your parents keep you off school when you're exhausted they get reported to social services.
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Successful de-escalations often involve giving one party a way to withdraw from their position without losing face. Maybe, as and when new evidence arrives, the BPS advocates will feel readier to cede some influence if they can say "oh yes, your 'neural hypervigilance' is what we were driving at...
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    Preprint A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Grach et al

    More so looking at the numbers in the referenced paper (in which 'Long Covid' is defined as 'still experiencing respiratory symptoms and/or increased fatigue at least 28 days post diagnosis'): https://pmc.ncbi.nlm.nih.gov/articles/PMC8906430/ Edited to add: 40% of the participants had been...
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    Notice about a forthcoming paper: A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma

    Gamma Interferon Regulated Disorder of Excitatory Receptors Syndrome. To be treated by drinking Irn-Bru.
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    Long Covid Clinic, Dr Binita Kane YouTube videos

    Binita Kane seems to sign up to an awful lot of unsubstantiated ideas, which is a problem since she's also a go-to quote source for various journalists. Contributes to the impression in some quarters that Long Covid is basically imaginary.
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    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    The insinuation is that both pwME and trans people are mentally deranged, and that those who recover/detransition and return to healthy normality then face being "silenced" by activists who supposedly want to prevent other sufferers from realising that recovery is possible.
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    UK House of Lords/ House of Commons Questions

    This marketing line has been used a couple of times now by govt spokespeople, it's obviously the party line. I'm trying to compose an email to the Long Covid APPG group pointing out the correction in the BMJ about the results only being applicable to hospitalised patients. Hoping maybe some MP...
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    Trial Report [RCT] Evaluating the efficacy of repetitive anodal transcranial direct current stimulation on cognitive fatigue in long COVID. Mischke and Zaehle

    It's ridiculous. This paragraph in particular: How anyone can think these three sentences make sense together in any context, let alone in relation to the findings of this 'study'...
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    Trial Report [RCT] Evaluating the efficacy of repetitive anodal transcranial direct current stimulation on cognitive fatigue in long COVID. Mischke and Zaehle

    I don't think it even tells us that. I think it just tells us that using questionnaire scores as a primary outcome measure is a waste of everyone's time. Their only vaguely objective measure is the EEG, and that only showed significant changes in the sham group. LOL.
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    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    I know somebody who swears she was cured of Long Covid overnight by drinking nettle tea, so maybe that's the charm after all! (Except I also drank the nettle tea which she was kind enough to give me, and it did not cure me :rofl: )
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    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    It's a fluctuating and unpredictable illness from which a percentage of people recover with no intervention at all. Anecdotes of recovery attributed to any one particular method deserve to be afforded just as much belief as anecdotes of recovery by any other method (graded exercise, experimental...
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    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    It's the same kind of style you see from any Youtube crank ranting about how the earth is flat or vaccines cause autism or whatever. But because he has some past professional eminence he gets treated as a non-crank.
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    That reminds me (though I can't remember the specifics) of some politician or other who wanted league tables for hospitals, including rating surgeons on how many of their patients survived their operations. Until someone pointed out that the best surgeons often have rather high death rates...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    They've got figures showing that a lot of people who claim sickness benefits for six months or less return to work, but people who claim for longer than a year are less likely to ever work again, and yes, they're spinning this as meaning that long-term support makes you sick. The analogy would...
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    Internal tremors and vibrations in long COVID: a cross-sectional study, 2023, Zhou, Iwasaki et al.

    I'd love to get this guy into a conversation with the FND guys who insist that you mustn't test patients for anything at all because that will make them ill by suggesting their symptoms might be real.
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