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    Co-morbidities - prevalence in people with ME/CFS

    Agreed. If there was any way of making it possible (and I think the ambiguity of individual's different personal threshold levels being unconfirmed would be an issue) this is one where it would be useful to have a 'what have you almost certainly got' (with the only catch to that being that it...
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    Adapt or die: how the pandemic made the shift from EBM to EBM+ more urgent, Greenhalgh et al, 2021

    The issue actually is when basic sense and science contradict their pet nonsense they write some pseudophilosophy-code to claim it doesn't, or just order people to stop asking questions on things that could cause such 'awkwardness' and treat people like objects (by using personality research and...
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    It has turned into a political gadget (there is a better word I can't reach right now), if it wasn't always intended that way. Seems that dragging up poor evidence as 'something to cite' and banging on about nonsense personality ideas based on lame correlations as if they are fact without...
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    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    I've cut down to just this quote because I LOVE it as a point to be made. You've also made me think - why is an impact section (given it is now the one most commonly read and picked up by marketers, journos etc, and has its own weighting re: funding and credit in the workplace) given free-rein...
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    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    Yes. There was another thread somewhere that I was noting the issue seems to be a lack of education in the sector with regards research. We had drilled into us things like phenomenology vs grounded theory and ontology vs epistemology. These guys think 'they know' when just as 'the message is the...
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    Who Hijacked ME?

    Could that basically mean a test that is less damaging, and certainly more safe esp for those who are mild, is actually possible from this? I say mild because imagine how powerful it would be for those who (and many have been there) do the pushing through etc. I know workwell use the example in...
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    United Kingdom: Leeds and York Partnership - CFS centre

    Two big reasons: 1. the CFS description was such a weird hypochondria mixed with 'exercise avoidance anxiety' along with actually prescribed in the guidelines orders to 'not investigate' I'd suspect many think they have something else that simply has never been 'gotten to the bottom of'. 2. the...
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    United Kingdom: Leeds and York Partnership - CFS centre

    Ohhh so naughty. And sinister having the biopsychosocial screenshot crowbarred in so many times. It feels like an obvious PR to try and cover for 'why are we still offering the same old thing, and how can we rebrand it as 'no, it's not that old thing''. Just try and come across like gentle...
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    LTSE - Long Term Symptom Exacerbation - Type 2 ME or New Diagnosis?

    I think that all this terminology needs clarifying but in a 'process list' type format (diagram or something). We've got PEM, and rolling PEM (which is effectively the state in which most with ME probably have to live in), and those in rolling PEM can have 'PEM' on top of that. Then there is...
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    United Kingdom: ME Association news

    Worth a read of this report. I found it so frustrating. Basically confirms the same crux of the issue. Forward ME have got a big job because it looks like denial re: BPS approach whilst claiming they don't see the illness as psychological lurks large in this report. And so difficult to post a...
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    United Kingdom: ME Association news

    United Kingdom: ME Association RCGP Meeting – General Practice and the new NICE guideline on ME/CFS Report on a meeting held on Thursday 16th June between Forward-ME (FME) and the Royal College of General Practitioners (RCGP) to discuss implementation of the new NICE guideline on ME/CFS in...
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    ME/CFS services in the United Kingdom

    "ACTIVATE adopts a primarily hands off approach to treatment aimed at motivating and educating service users to manage their condition more effectively and utilises both individual and group-based interventions" There isn't an emoticon for my shock at this. I can't think of anything more...
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    United Kingdom: Cornwall ME/CFS services

    Interesting. I've had a poke around old fb posts to see further. It maybe is a more mixed picture of recent times (I found a post as far back as 2012 when Pinching left when it seemed that was v biomed led, then more mixed since then) I've found this which was the MEA post about needing a new...
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    United Kingdom: Cornwall ME/CFS services

    It is Cornwall I'm thinking of specifically with this because I believe that the service until very recently was seen as a very good one that was safe. I know that the person running that left but I don't know how many years ago, just remember the job description being discussed on somewhere...
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    United Kingdom: Cornwall ME/CFS services

    happy to pee money up the wall on something not in the guidelines whilst claiming they are short of both cash and staff in implementing the necessary care for patients who might be at risk of dying, and unable to provide basics to mean someone can live independently safely. All I can think is...
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    The Future Challenges: Replenish-ME

    Sicko stuff really isn't it. How can conversion therapy for certain things be rightly getting outlawed and slated and yet this type of awfulness is sliding in under the radar and being funded by taxpayers and done by people claiming to 'help' or care about physical or mental health...
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    Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction, 2022, Friedberg et al

    I don't know why those interested in mental health or psychology can't just be happy/see it as sufficient part for them to play to point out that those with autonomic dysfunction should be treated better ie the lack of psychological uplifts is a harm in itself. If mental health matters, and...
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    Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with [CFS], 2021, Crawley et al

    More sophism then. Bring in psychological therapy based on the claim it 'recovers' people by using false-beliefs CBT then when that is debunked as being a type of conversion therapy for an illness that is real claim that psychological therapy is still due based on the terrible, damaging therapy...
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    Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Model, 2022,Baxter

    Important start to flag this. So worrying (and the fact that noone really knows or notices this issue beyond ME community) that severe ME aren't included in clinics or research. Out of sight out of mind. The methodology acting as a filter effectively is an issue that needs to be flagged up in...
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    UK : South Coast fatigue service

    Agreed. It feels like there is a story behind that one given it would seem obvious some severe ME have ended up in certain situations. It 'seems' like the artificial divide to the extent of separate services has little justification and would hinder understanding of the fuller picture of the...
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