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    Symptom attribution to a [MUS] is associated with greater perceived severity and bothersomeness of symptoms in US military veterans, 2021, Phillips et

    The illnesses that counted as MUS in this study were: Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Gulf War Illness, Fibromyalgia, and/or Chronic Multisymptom Illness. So the veterans were asked if they attributed their symptoms to one of those illnesses. This study obviously has so...
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    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    The pacing study is interesting but I'm pretty skeptical of how useful it'll be. Whether you trigger PEM is dependent on cognitive and physical activities, and I think trying to quantify exertion with a fitbit is probably sufficiently inaccurate that it probably isn't the best way to pace. It...
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    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    I don't really understand exactly what the LOCOMOTION study is doing. Will it be collecting data from long covid clinics and other clinics in order to put together a treatment guide for long covid? It doesn't strike me as especially methodologically rigorous, especially given that some of the...
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    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    His name isn't on this list of funded projects at least. I don't really see why he would be awarded funding for a study as the only thing he and his group seem to do is evidence synthesis
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    “Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans .. with GWI, 2021, Bloeser

    I find what Wessely did with Gulf War Syndrome substantially worse than what he did with ME, in my opinion. He argued a lot more explicitly that GWS was a kind of mass hysteria based on poor quality evidence and sketchy reasoning...
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    Voices of Recovery website (Lightning Process promotion)

    It says "no posts in the last month". So not a particularly active one
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    Bridget Mildon - patient advocate for Functional Neurological Disorders

    The argument people seem to be making when they say stuff like that seems to be "This is possible, therefore you should treat this as true". A lot of things are possible. ME/CFS could be psychogenic or psychoperpetuating, or it could be due to aliens poisoning the water supply (or plenty of...
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    Influence of Priming on Patient-Reported Outcome Measures: A Randomized Controlled Trial, 2016, Claessen et al.

    The primary outcome of this study didn't seem to reach the level of statistical significance. In the discussion it says: "In this 3-arm, single-blind, random-ized (1:1:1), controlled trial we found evidence of priming in patients with musculoskeletal illness. Patients assessed themselves as more...
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    Science magazine, Landmark research integrity survey finds questionable practices are surprisingly common, 2021

    Doing good research is hard, and almost involves setting yourself up to fail, and the incentives to publish research and pressure of the environment make this not particularly surprising. In the context of ME/CFS, designing a good trial of unblinded treatments would be very difficult, involve...
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    Trisha Greenhalgh on ME/CFS and Long Covid

    Earlier in the pandemic Trish Greenhalgh was one of the most outspoken people on twitter about long covid. She tweeted about it constantly, and she seemed genuinely sympathetic towards the patients and angry they weren't being recognized. Then she defended PACE and talked about a small vocal...
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    [Blog] Beyond the NICE guideline: MEComms© and the case for a public inquiry

    I think this is an interesting piece with some possibly good ideas. In my opinion though, the main problem isn't that people with ME have had their reputations tarnished, and therefore that needs to fixed with PR. I suspect such stereotypes of people with ME as crazy activists and harassers etc...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Tovey's response here seems to reflect this common idea that since ME/CFS is diagnosed based on subjective criteria (it's a "private experience"), that means subjective outcomes are the most appropriate outcomes to rely on. Never mind that you can't equate fatigue with anxiety and pain, as...
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    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    Fibromyalgia is usually triggered by something, such as physical trauma, and the combination and pattern and frequency of symptoms in fibromyalgia helps distinguish it - the score on the widespread pain index, light sensitivity, exacerbation of pain after exertion or relatively light pressure...
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    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    It seems to me that it's difficult to assess what the impact of the fairly loose fibromyalgia diagnostic criteria has on identifying patients that all have a single condition. I think it's plausible that once you exlude other conditions, and choose patients that have symptoms characteristic of...
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    BPS attempts at psychologizing Long Covid

    Many people with long covid develop POTS, and that can present like a panic attack or anxiety, and also feel like a panic attack or inspire a panic attack. That may be an explanation
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I'm honestly not in a position to really fully understand how systematic reviews and GRADE work, and what's acceptable, hence why I was/am trying to start a discussion. I think your response here partially answers what I was thinking about. NICE says in this document...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    So I think there's a bit of miscommunication going on here, where my specific points and query may not be being completely understood. My basic question is, assuming that cochrane doesn't completely discount unblinded trials with subjective outcomes, how can those two key related problems with...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Perhaps cochrane will significantly downgrade unblinded trials that rely on subjective outcomes. Based on NICE, that does seem like a possibility. However that's not the point I'm trying to discuss here.
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    As far as I can tell the current standard is that subjective outcomes in unblinded trials are basically accepted, although they get marked down a bit or a moderate amount to take account of possible bias, and if the patient reported outcome measures aren't good quality either (like the chalder...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    So, I'm not an expert on this, so hopefully someone can help me with this. The general idea of systematic reviews, like what cochrane does, is that the evidence is reviewed using explicit, systematic methods that minimise bias in the reviewing process. So that someone could follow the same...
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