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    MEA are updating their Disability Rating Scale - they are asking for comments on current version

    It would be an awful thing to do for many reasons, but putting other conditions at their various stages onto said scale would provide anchor points/comparators that ballpark the different levels. I agree that when I say 80% disabled it can sound like 'I'm almost disabled' rather than so...
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    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    I saw that post. She almost replied to every comment (even though the article was nothing to do with either her or her area) I've just edited this because her and Garner's reply was mentioned - I think it is worth noting many won't have known who this person was when it was originally up. It...
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    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    oops lacking insight a bit there is it not? But is this lightening process type thing related in which case I guess that is the brain 'retrain' of that isn't it ? On a general note, I'm always curious about people who claim things like this when it might be themselves they think might be...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    We also need people to underline that we aren't 'unfit'. Which seems to have been turned into a dirty word (ambiguous meanings used again) and mis-applied due to people being allowed to make their own assumptions (diagnoses they aren't qualified to make) based on how people look or sound...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    Exactly. I think that whether there are clinics that are ME-specific or some sort of other format (that provides a conduit to EDIT: and brings up to speed, local services like social services and GPs and hospitals) the Physios for ME information was transformative because it simply and...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    @Trish and many others And yes, we do seem to have an issue that is well-encapsulated in the reading of this paragraph. Ironically the sentence that I have boldened seems to present the 'divide' "It covers multidisciplinary, person-centred care involving: family/carers; joint decision-making...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    I agree. And reading it I find the order in which the sentences were composed into that paragraph insightful. I don't understand why the lines I have placed in bold - which relate to 'patient voice' - were placed where they were. They may have had a place as an important relevance as an 'and...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    No indeed. Which sort of should make things more fixable. I note you posted in the MEA PROMS research and agree that it is important that we all perhaps are pushed to take some time to look at that one afresh, because it is one of the things that will directly affect treatment EDIT: most...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    And @Trish Im a bit divided on this. I absolutely agree that those just wanting to plonk the same orthodoxy on it all need shifting out completely. It’s all smelling so so old fashioned and unfixable the way they are unable to hear or respect. On the other hand @PhysiosforME habe been...
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    News from Australia

    To ask the obvious question - and this applies to UK as much too: of the professions that we've ended up being landed dealing with, which of them are actually taught this compulsorily at the start and then throughout their courses and vocational training? Is the issue that they are some of...
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    News from Australia

    Yep they've made it seem like a country-based comparison rather than a condition-based one. And of course that is the classic reframe the set technique - look there are those who have the same thinking issue in the UK too rather than 'compared to what you'd expect from something that calls...
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    News from Australia

    Interesting. So does Gerrard have the same worries when he is giving out Public Health information about eg STDs or heart problems or .. what else is it that he does as part of his job as a campaign area? I'd be interested to see someone posting a comparison of what he says on another area vs...
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    News from Australia

    Are they that stupid that they don't realise the fact that their very first word was 'Some' [health services contact covid patients] makes the rest of what they say laughable BS unless they are citing a study proving that 'all the rest who didn't contact them had no long covid patients' Even...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    I guess I just feel that this paper could have been an appeal for attitude-change. A rousing call to action for people to begin realising this could be an interesting area for them to develop science, instead of the same old 'patients just need our advice'. Based on the fact that: we aren't...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    Here is the thing. I was one of those who probably still deep down doesn't want to think that it is just about never exercising again. And who as someone who was pretty athletic before never just cut it out, and would certainly be happy to add bits in. There were big differences between when my...
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    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    Unless the person feels ready to progress? I find the idea people think these things and say them in such a way so weird what do others think is the correct term on this ‘issue’? the idea there will be patients who ‘need help to progrsss’ ? Does this exist? I suspect it shows people who...
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    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I like it. I slightly think of the Bechdel test too where it looks in films at whether they actually contain a female character that fulfils certain criteria rather than being a flunky. I wonder whether there is some inverted type of ‘score’ that could be given where papers get points for...
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    Making a 'Charter for Ethical ME/CFS Research'

    thank you :) I shall :bookworm:
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    Making a 'Charter for Ethical ME/CFS Research'

    Sadly the ethics issues have happened and ended up occuring under these stages. like retrospective studies taking cherry-picked 'records' from patients at their clinics. or studies that part-way through decided to drop the primary outcome that subjects' consented to, but carry-on regardless with...
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    Making a 'Charter for Ethical ME/CFS Research'

    I get why you think that but sadly when you think about how markets work it is actually the opposite way around. Doing research badly is both cheaper and quicker. At first the majority might be able to sit with their integrity and feel better about being better researchers until they find that...
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