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    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Box ticking then. The thing is that 'any money' for 'no effectiveness' is just 'a waste'. I know it is CCGs that they've been going through one-by-one to sell IAPT into different parts of the country and 'build it up'. I've heard people say that for GPs it at least gives them a short-term...
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    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Side note: why would one keep IAPT alive? As a genuine question - and this will cover probably the different areas it now does inc mental health only and then increasing long-term condition (if they do anything much different given the note of it not having 'physical' or anything in there) -...
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    Medical Research Council funding to 2025

    For a start the money going to money for old rope in other areas, normally into the same hands (AKA 'the gravy train'), needs to be reassigned.
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    United Kingdom: Science Media Centre (including Fiona Fox)

    Yep and 'peer-reviewed' seems to be their latest buzzword, but given the current state of it means very little (with regards quality) in certain subject areas currently - as well of course as said criticism from a review never being in their articles anyway. The fact that PACE was debunked and...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    Agreed. Just because an assistant helped and certain individuals were encouraging for it to be written doesn't confirm that all the individuals got the opportunity to read the book pre-publication. It sounds like they approved this, but we do not know the process as to whether they've been 'done...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    An obvious concern is that they are 'all roads lead to' either because they are closed-minded on treatment options and/or have very few that they just adapt the narrative to fit the condition to it being useful for, rather than the other way around of observation--> ideas of what would help. I...
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    Hyper-connectivity between the left motor cortex and prefrontal cortex is associated with the severity of dysfunction ... in FM, 2022, Oliveira Franco

    OK I'm only a tiny way through this and there is a lot to get up to speed with in here. So the test (Conditioned Pain Modulation Test - CPM) they used to identify responders vs non-responders was to have thermode on the left forearm (all are right handed) which heats up to 52 degrees and back...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I have a concern that who is located in clinics directly influences this also. If you have a load of people offering CBT on the sly and just therapists then you don't have the on-the-ground training up and insight for clinicians and scientists to actually meet those with ME. And of course if...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    To me this is a very complex idea/question/concept that also probably could do with its own discussion at this stage. Really focusing on where we are now and trying to unbundle the 'maths' of it to see if that really is true/the case or we've just been conditioned by their own PR etc. I'd like...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    And, speaking mainly only from recent few years noticing it particularly, even with MPs' interest there is always a 'big general news' that most see as 'vital' and 'more important', as if we are supposed to understand (rather than them realising nothing will ever be done if that is how they...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Yes and Javid telling the story we saw the 2min clip of I wondered was whether him realising that there needed to be 'more' around just 'we launch the report'. It's difficult to know because I didn't see the rest and we'd all be sensitive to privacy needs of someone etc
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Agree, the whole thing has intrigued me for a while about the BBC. I think in the more general too it is a worthy discussion to have (with this as an example within that) - but probably as a new thread and maybe a members only one as well/at first if only because it gives muggy brains the...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I agree on the BBC and have found their seemingly implicit attitude obvious. I have just done a check though and it seems that basically none of the big papers other than the times covered this. A few more covered the bit on 13th May when he promised radical action. I half feel silly for...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    What she says contradicts at every turn. In the video interview above (I think it was) she talks about the wonderful thing being that science still operates based on journals as a source of news bla bla, [whereas sports etc get news from twitter - NB I might be merging inadvertently a few...
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    Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

    It seems the equivalent to if a Starbucks were to do research claiming that the names on its cups put into a database mean something (as a made up example "10% of our customers are called tall guy or Karen") about the customers rather than the staff.
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    ME/CFS services in the United Kingdom

    Peter on here, who was asking about 25% stat?
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    ME/CFS services in the United Kingdom

    Didn't the person running the service change in the last few years? If so I'd assume they got in someone who has no idea what they are doing and are ignorant. What is happening? Is it just deliberate subversion? the CFs/ME is even new to them so I suspect so - and that should be enough to lead...
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    Help with Advocating - responding to claims that ME is a psychological illness

    Who made it? If a person you are able to respond with in this way, given it is a law class, then I'd demand that they show you it. At least that way they can prove what they are referring to and you can answer on that exact 'proof' directly.
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    Help with Advocating - responding to claims that ME is a psychological illness

    I have no background in law at all. But have just looked up the case summary here: https://www.lawteacher.net/cases/page-v-smith.php It is interesting that it isn't until the latter paragraphs that psych words came in (so it feels like these were terms more to describe the 'mechanism' via which...
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    Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

    Indeed - I had it and GP misdiagnosed several times and then when accurately diagnosed by seeing the right person who had ENT experience (that's EBV, are you sure shouldn't I have a test? NO.. it's DEFINTELY EBV you can have a test but that is just for the sake of it when you are already so ill)...
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