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    United Kingdom: Sussex & Kent ME/CFS Society News

    Yes that is a good point that even if he does believe in it helping some that is a world away from dismissing all of these issues and the observable pathways of those it doesn't for all of those reasons. And that is unacceptable. And to layer on the gaslighting and other aspects is...
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    United Kingdom: Sussex & Kent ME/CFS Society News

    Indeed. I'd be intrigued to know what is going on with him, as it is one thing many living with hope and deluding themselves for a certain amount of time that they are going to get themselves better by forcing their way through the illness - I'm unaware of anyone who has succeeded longer term...
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    UK - NHS Recovery College - information on ME/CFS

    It shouldn't be anywhere near that directorate. And if it is being forced there that is the very centre of the issue
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    UK - NHS Recovery College - information on ME/CFS

    are we allowed to 'hard copy' the whole thing for posterity or archive/cache this somehow? I think it is an important 'piece of history'. Remembering the sudden change to claims of 'it was never fixed increments' and 'was just rehab' rebrand of GET around the time of the guidelines I'm conscious...
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    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    The rest of the post has moved but it had more detail of what it related to as a comment. I meant that 'false belief CBT' or in fact CBT that has any biopsychosocial or tendency to 'stick' personality suggestions on people isn't far from the false memory implanting issue that constituted a...
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    UK - NHS Recovery College - information on ME/CFS

    I meant a proper investigation into whether this type of CBT should ever have been offered and is harmful - doubly bad that the cause is biological. The rest of it notes about false memory scandal - which was huge at the time for the psych world, because it talked of people having false memories...
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    The utter stupidity of questionnaires as tools for diagnosis. A lighthearted look at some questionnaires misused in ME/CFS research

    That's awful I'm so sorry you went through this and second the comments from @Trish There is a very important point you've made in here - regarding the repetitious use of certain surveys and how these in themselves should be being assessed (by any sensible system that actually assessed the...
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    UK - NHS Recovery College - information on ME/CFS

    It is bigotry. Plain old. And really nasty level stuff too, incorporating misogyny and cliches and disability troping (not ablism, worse than that). The sort of trope someone really unpleasant would do in a close relationship to get someone to blame themselves for harm that happened to them. Not...
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    UK - NHS Recovery College - information on ME/CFS

    First and foremost it is about someone who must have engaged in an entirely now banned therapy. Which says a lot about the quality of this place if they think CBT is CBT and can't spot the difference. Which leads me onto the second issue - what situation was this individual in when they wrote...
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    Cognitive fatigue due to exercise under normobaric hypoxia is related to hypoxemia during exercise, 2022, Genta Ochi et al

    I'm interested in this but don't have the brainpower currently to do the 'put it together thoughts' it probably deserves. My gut is that in the past sometimes my cognitive symptoms have seemed like this (and I have enough CO detectors around my home to prove this, particularly in the past). I'm...
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    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    Many have muscle wastage, what is the term for 'muscle gone but not necessarily due to lack of use' or does it all have that cause and is deconditioning? I'm sure I got it when I was still having to walk about including significant vs the condition regular ones for things like commutes (which...
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    UK: Energy-limiting conditions and Human Rights: The Chronic Illness Inclusion's submission to the UN as part of a 'shadow report'

    No you are not alone. The way the situation has been over the last few decades has made me unsafe (not 'feel' unsafe, but actually unsafe) and have to wake up and think each day how doI protect myself e.g. freedom and all things that come with the issues the system and myths caused then allowed...
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    UK - NHS Recovery College - information on ME/CFS

    I don't just suspect. I'd want evidence it was anything other than a choice because of how website updating works (sign-off processes - which can by the way be FOI'd, to see who chose to include it) Case studies are chosen, edited, briefed to fit a specific purpose. And to convey information...
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    UK - NHS Recovery College - information on ME/CFS

    That 'case study' is outrageous, these should always relate, rather than pull against the main message so their choice to include this is suspicious. It is clearly very old with regards treatment or diagnoses so it just a red herring: "There are times I thought I was going mad. The term...
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    Immunotherapy with subcutaneous immunoglobulin or plasmapheresis in patients with [POTS], Blitshteyn et al, 2022

    The author's access states that 'unfortunately due to financial reasons' on these not happenning to provide objective data. I wonder whether they maybe hoped that providing the case studies could in itself be a bid to fund 7 tests along these lines. I don't know whether the NASA Lean test even...
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    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    In fact the whole online checkout algorithm could be a good starting point for all of this. I'm thinking they've have the 'you usually buy', 'incomplete offers' (where these symptoms tend to come together), 'have you thought about' (which could be 'popular items' at that time e.g. heat-related...
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    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    To be fair there are probably some examples from e.g. research in business about using such scales vs 'global estimates' and accuracy. There is a lot to be said for (and confirmed in past literature) people's ability to get a concept and be able to assess that instinctively more directly than...
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    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    I suspect that phone-data level is the only effective way (goodness knows how you encapsulate all the elements as cogntive/looking at things etc) because I know from having to spend so many years working whilst really ill that it 'collects' e.g. the classic weekend in bed radically resting (I...
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    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    Like vertigo? By which I can't tell whether it is balance-related or stimulation-related (ie like watching a fly whizz round the room is like a normal person being at a strobe-light disco) but it obviously has nothing to do with heights
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