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    Independent: Father attempted suicide and family almost lost home after GP missed common genetic condition for six years

    Going by the experience of a friend who has had a delayed diagnosis of haemochromatosis - as a woman of childbearing age, you get fobbed off with "of course you're tired, everyone's tired these days [eyeroll]", "have you tried yoga" and "do you want antidepressants?"
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    Preprint Virus Genome Sequences in the Blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients, 2025, Davis et al

    So none of the healthy controls has signs of a really common human herpes virus, but nearly half of them have a bat virus? Were they recruited from a superhero lair under Gotham City?
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    What Can We Learn Four Years On? A Multi-Centre Service Evaluation Exploring Symptoms, Functional Impact, Recovery and Care Pathways…, 2025, Lee+

    Noteworthy that on their radar chart of symptoms the 'slight', 'moderate' and 'severe functional limitations' groups all make more or less the same shape, while the 'negligible' one has a very different shape (fatigue plus lung/cardio problems but not much else). It would be interesting to see...
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    Opinion The Evolution of the British Society of Physical and Rehabilitation Medicine, 2025, Sivan & Haider

    Their speaker on 14 October 2025 was Lyndsey Woodman, a 'Health Qigong instructor, Breathwork instructor, Clinical Hypnotherapist, Master NLP practitioner and coach, as well as an EFT [Emotional Freedom Technique] and BWRT [BrainWorking Recursive Therapy] practitioner'. It's such a mystery why...
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    Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with [ME/CFS] and Post-Acute Sequelae of COVID-19, 2025, Berardi et al

    Is this one of those where scores out of 10 on a questionnaire are assumed to have a linear, mathematical reality across individuals and groups? So e.g. if a control says their fatigue went from 1 to 3 and a pwME says theirs went from 5 to 7, that's interpreted as showing "no difference" because...
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    Sociosomatics and illness in CFS, 1999, Bohr

    Meanwhile the first letter makes several points which haven't dated at all: The only part that is out of date is his suggested definition of "Functional disorder: an illness for which the clinician has not found an explanation using his/her own frame of reference", since for some clinicians...
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    I really hope she doesn't end up in a long-lasting crash from trying to "challenge" herself to complete something that's beyond her current limits.
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    What they're actually asking is can you do these things "safely and without difficulty", or "reliably, repeatedly, safely and in a reasonable time" (the exact wording varies between forms) - those criteria apply for every question. If the process was designed more fairly, the form would repeat...
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    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    Plus the new crop (numbers unknown) of people who meet the criteria for an ME/CFS diagnosis but have 'Long Covid' or 'FND' on their records instead.
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    About a year ago according to https://www.benefitsandwork.co.uk/news/beware-latest-pip-review-form The new one is much more restricted in the kinds of questions that are asked and what answers you can give, with less scope to accurately describe the impact of a disability like MECFS. So the...
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    UK House of Lords/ House of Commons - relevant people and questions

    Nice to see a question relating to a specific aim and a specific timescale, rather than the usual 'what plans does the government have to help...?' which get the vague reply of 'we are committed to helping,' from which nobody learns anything.
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    Clare Gerada: influence on UK medical practice and ME/CFS management

    It will be interesting to see how many people will turn out to have always disagreed strongly with him, once he's no longer in a position to hear them saying so.
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    Language in COVID-19, 2025, Cummings

    Cummings acknowledged in her earlier work that her subjects were drawn from the milder end of the Long Covid spectrum and that her findings don't cover the needs of more severely affected people. I can't see a similar acknowledgement here, although I might have missed it.
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    Language in COVID-19, 2025, Cummings

    Some of the chapter is about difficulties that might result from stroke, intubation in hospital, etc. Most of the 'post Covid condition' section looks largely the same as author's previous paper...
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    From the UCL link: More definition creep around PEM...
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    The AI "summary" is longer than the original text and its version of the 'Aims of the Event' includes things which aren't in the original. I do appreciate the effort and intention in posting it but these AI things often just introduce confusion (and we get enough confusion already).
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