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    Interventions that manipulate how patients report symptoms as a separate form of bias

    I think we start with things like pain and me/cfs But stay right out of things where that argument about ‘but it could be good for x,y,z’ type conditions ends up getting thrown back However it is useful to anticipate the arguments - even if I don’t agree with most and there’s some...
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    Interventions that manipulate how patients report symptoms as a separate form of bias

    Is it almost like ‘planting’ ? And not far off the old scandal of when people were going to therapists and being persuaded into false memories of abuse - which was fully acknowledged and the big issue in 2000s much as it is belittled now as if it was a blip and in doubt the debates were of the...
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    Interventions that manipulate how patients report symptoms as a separate form of bias

    Spoonfeeding bias comes to mind as the issue seems to involve teaching to the test But in a way that isn’t like teaching someone maths just telling them their pain of 10 isn’t socially acceptable ‘could the phrase it more positively’ then it’s brow-beating or social pressure but in a more...
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    Interventions that manipulate how patients report symptoms as a separate form of bias

    I get the ideal But I think we’ve a chicken and egg issue Even those who are good probably get forced by this culture to conform so good is seen as bad (not using the tools) and vice versa. Up and comers get taught this lesson of what good looks like and so on Maybe there is some hybrid...
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    The causal status of pain catastrophizing: an experimental test with healthy participants, 2005, Severeijns et al

    Stupid test just showing lack of understanding in both the concept and basic observation of humans And of research basics. For a start they are just doing a childish poorly designed game on expectations with added play acting to pretend it’s a concept they are testing And even if expectations...
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    Diagnostic labels in functional disorders 2026 Novak

    A very important article to be keeping hold of the reference to given some who doubt the intention of certain individuals and Certain words and how they are used deliberately as double-speak Given the list of authors here which I think also deserve some highlighting
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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I'm not up to thinking out the best way/place to post this and interact it all in but I note that on facebook the following came up recently: I have no idea whether it focuses on eg those with severe peanut allergy or extends out. But I thought I'd link to it here but note could it perhaps...
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    Scottish ME/CFS clinical service provision

    And where has she suddenly come from and how has she suddenly landed in this spot where she will develop a service? I’m not following closely but it seems the announcement has come out of nowhere but, like when we had some of the app and other plans, that doesn’t mean it’s not because it hasn’t...
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    2025-2026 Norwegian chronic fatigue guidelines - draft published

    Indeed … and thereby separate cognitive exertion from eg long admin conversations being labelled as not due to something related to exhaustion and illness but ‘a cognitive dysfunction’ type misdirection
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    New Zealand: Dr Matthew Phillips, neurologist

    Have you looked at the website? He has a long section about his personal internal journey where he references a book “why greatness cannot be planned” for many paragraphs. I wonder if others on reading that website are thinking what I’m thinking but can’t find a way to say here…
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    New Zealand: Dr Matthew Phillips, neurologist

    Can you call it a “fellowship” and actually get away with it from a mid-selling and medical board point of view? I mean I know these people feel they have the right to their own ‘beliefs’ but I’m not sure those who also do but actually slogged a non-gap 3yrs real fellowship mightn’t be so happy...
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    A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial, 2025, Hayes et al

    Quite a drop out rate too including nearly 50% in control which shows what an obligation writing the equivalent of diary entries is. I agree with @Sean that whilst I guess it’s the pr culture at the moment it’s all very only inside their own bubble and shows their industry up as pointless when...
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    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Interesting- I had an incredibly rude and unpleasant by ‘people I’ve seen over a lifetime now’ standards tutor at uni once so out it down to how vile she was (every time it was some made up reason to say she hated me that seemed to be for no reason to do with me) One time I was trying to...
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    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Ha! But useful for this audience. Wine is the alcohol I’ve been most obviously ‘sensitive to’ so never been ok with it ever, even when at certain points some other types I could manage as long as I could live with the aftermath etc (wine makes me incredibly drunkfrom just sips so I can’t even...
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    Action for ME: "How can we manage our wellbeing when interacting with others online"

    I sort of have less of an issue with this once I’ve realised it’s part of their magazine so is intended to be discussion ‘within the community’ and maybe there is also a variety of ages and familiarity with tech and social media and its drawbacks (and risks in the worst cases) etc before being...
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    British Association for Counselling and Psychotherapy 'Letter to the Ed' by Emma Hampson

    Agreed. It's interesting if it is the case that Emma's letter is in the BCAP magazine but the original was the Big Issue ie more 'general press' - was it also published or linked to from BCAP or 'the industry'? (scrap that one as an ME moment - I can see the original was in the BACP but was...
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    Built Me/Cfs safe room in the bush at the back of a house. Design help/suggestions.

    you are making me think of a grand designs episode (or something similar) where a building was built either into the earth or with grass on top of it and at least one side for climate control reasons of some sort - no memory of what it was material-wise underneath all of that
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    Built Me/Cfs safe room in the bush at the back of a house. Design help/suggestions.

    Sounds fantastic. I feel silly as a mere brit suggesting that focusing funds on blinds etc that you could ideally control pretty individually but that don't break, but in the current winter sun I've got the main one pulled down almost permanently atm so I don't have to drag myself up when I'm...
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