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    Editorial: A special issue of The BMJ, led by patients [welcomes proposals for patient led articles, deadline 30th April 2024]

    Partly replying because agree this is important and also agree timescale typically screws us. The biggest ‘sitter’ going by the three things they’ve enphasised (good, bad/issues and other) is perhaps using how decodeME actually properly started by building in proper adjustments that meant...
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    Protocol Efficacy of patient education and duloxetine, alone and in combination, for patients with multisystem functional somatic disorder:... 2024 Jespersen+

    Symptom (to doctor and society) simplified as ‘moaning’? Treatment = what ‘deals with’ making them go away?
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    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    When we compare this item to the PROMs I'm curious whether they have gone out of their way to fix this (ie whether this happens to coincidentally justify changes, or whether they've done the same thing with the PROMs measure replacing it anyway)?
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    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    accurate narratives rather than accurate information, science, prognosis, diagnosis, the list is endless on the important things they don't mention. says it all really about an area if the most important bit is the sales spiel that even a marketer would - in any other area due to legal...
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    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    I wonder that, and note the references people make to Meyers-Briggs are probably more generally but the one job interview I’ve ever had where someone had added something like that in I was intrigued that it seemed to be more about asking the same questions (about who you are and you personality...
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    The disappearance of ME/CFS

    @Tal_lula might be able to confirm whether she is happy with this summary but the original post from here (which included the letter) detailed her fuller experience, which notes reasonable indications that the individual she saw was potentially using terms more consistent with 'FND' these days...
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    Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

    Wow, so the GP actually wrote back - I'm guessing there would have been another letter in your records if they had responded to the GP with any concern/offer of help/thanks for being informed etc? Interesting that the GP didn't mention this to you at the time, if I have read that correctly? Be...
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    Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

    Thank you for sharing. I'm sorry to hear of your illness and experiences. The letter is particularly insightful and can be taken a number of ways reading between lines. However on clear message comes through to me which is that they very much have an eye on the data when they are thinking...
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