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    Myopathy as a cause of fatigue in long-term post-COVID-19 symptoms: Evidence of skeletal muscle histopathology, 2022, Hejbøl et al

    Thank you for the correction. So there's a possibility that this is relevant to ME/CFS - population overlap (Nath has stated that in many cases Long Covid looks like ME/CFS & most people have now been infected with Covid); interesting spot re these proteins, I'd pretty much given up on these...
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    Myopathy as a cause of fatigue in long-term post-COVID-19 symptoms: Evidence of skeletal muscle histopathology, 2022, Hejbøl et al

    EDIT - see Hutan's post below this text is inaccurate --- I hadn't read Hutan's post when I wrote it! Seems to be separation of test and control groups (plots below). However, as you point out, need to consider if the controls have similar activity levels etc. Still interesting though.
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    Yip I personally think they should be treated as looper pursuing their own agenda - but then I'm biased!
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    You're entitled to hold unfounded beliefs - we all do it. However, it is e.g.: when they are funded (using public money) to carry out flawed research aimed at propagating those beliefs; when these unevidenced views form part of public policy e.g. old NICE guideline; or when these unevidenced...
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    Thanks. My memory was that they dropped actimetry half way through the study (proffering a range of apparently conflicting "explanations"); to me the study was pretty much a waste, of £5 million of taxpayers money, at that point. I would have liked to see the study carried out as designed i.e...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    Neatly gets around quoting that the overwhelming majority of the estimated 250K people with ME/CFS in the UK [2 million in Europe], and their families, believe I'm talking complete and utter crap and don't understand the basics of scientific methodology ---- presented like that it might just get...
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    DecodeME - UK ME/CFS DNA study underway

    Excellent presentation by Chris & Shona Kerr - OK I'm a bit disappointed by the timescale 2.5 years before final data will be out - maybe the preliminary data (2023 - year ish?) will turn up some leads. https://www.decodeme.org.uk/webinar-recording-and-transcript-the-science-behind-decodeme/
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    What is the evidence base for non-infectious precipitating factors?

    OMF published (check out their annual symposium presentations) data on metal toxicity which didn't appear to show any link. There's some interesting stuff here* by Jonathan "They haven't actually found a route in GWI, although the link to genes involved in cholinergic effects is interesting."...
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    Open Medicine Foundation (OMF)

    [EDIT - hadn't read Jonathan's post when I wrote this!] The cell is in a dilute saline solution [but more salty than the cell] so the cells is basically less "concentrated" than the surrounding salty solution - so the cell has to pump salt out -- stressor/work. I think the cell is intact so...
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    What is the evidence base for non-infectious precipitating factors?

    I've only read a couple of posts above but GWAS comes to mind - GWAS may provide a clue to the underlying cause(s). Anyone heard when Chris Ponting's GWAS study is due to start - enrolling, sampling ---- whatever?
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    Open Medicine Foundation (OMF)

    Actually came to mind that there are comments on this thread* (from Jonathan) that e.g. if TPPP gene is relevant then you may not be able to develop a biomarker based on that (primary/disease causing) change. Genetic (GWAS) studies in Alzheimer's have demonstrated that it is an inflammatory...
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    Long winded as usual! I seem to recall that Crawley recently made a statement* [post Savid Javid!] along the lines that the Government funding wasn't enough to include objective outcome criteria --- erto the previous research was crap - but it wasn't us, it was the lack of Government funding...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I've been wondering if e.g. Chris Ponting could use some more funding and with Sajid in post --- might be a good time to ask! Anyone in touch with Chris? I'm no expert but DecodeME is about identifying the genetic basis - genes that increase risk and/or protect. I'm hoping that DecodeME will...
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    Yea (as someone who didn't follow this i.e. NICE guideline development closely) wasn't the complaint that the NICE guideline panel was weighted towards patients - yet those selling a product (exercise & CBT) were on the panel --- seems like asking for a standard but not wanting it to apply to you.
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    The biopsychosocial model is lost in translation: from misrepresentation to an enactive modernization, 2022, Stilwell et al

    A few court cases might get the system on track - if you treat someone then, if harm occurs/is alleged, you need to be able to explain why you treated the patient and that there was some (defensible) logic to the treatment. E.g. the inability to explain the basis for a treatment involving...
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    Dutch long covid study with muscle biopsies after exercise challenge

    Again I know nothing but if your daily activity wasn't typical [activity of people with ME/CFS is much lower (EDIT & presumably for people with long covid?)] then perhaps that would explain the (EDIT - difference)?
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    Open Medicine Foundation (OMF)

    Chris Ponting's genetic (Google "GWAS") study might provide evidence of the underlying cause(s) of ME/CFS; e.g. this* very small study indicate the TPPP gene might be implicated. If the underlying cause can be identified then that should help in the identification of biomarker(s). I have very...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    Can someone post on social media re the claim about "fraud" - Hansard is the official record but I'm not sure if you can e.g. check for "PACE" & "fraud" - used together. Or simply ask her when this occurred? Might be interesting if it turned out they were self identifying!
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