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  1. adambeyoncelowe

    #MEAction: Next steps: a letter to our community [from Jen Brea]

    It's a very helpful and honest letter. I hope it's read widely.
  2. adambeyoncelowe

    (Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

    This is local to me. It looks so ghastly I wouldn't even want to go to argue with them.
  3. adambeyoncelowe

    Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

    I could try. If you have his email address, please inbox me.
  4. adambeyoncelowe

    Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

    To be fair, yes, I was asking Ponting something that should be asked of Harrison. It probably should be put to him too, though it is always good for the vice chair to be under a little bit of pressure in regards to this, because then he's more likely to do something about it. Basically, there...
  5. adambeyoncelowe

    PACE style CBT for CFS/ME - should it be scrapped?

    I agree. 'Supportive counselling' is far better than 'supportive CBT'. It also allows for flexibility. Though, I have to say, all my friends who've had such services on the NHS find it terrible. Charities seem to offer better, more targeted services anyway. My friend with serious PTSD and...
  6. adambeyoncelowe

    Waking up in the night and hearing a brain-generated sound

    Tinnitus coinciding with popping ears maybe? My ears pop all the time and I get tinnitus. It's not quite as you describe though.
  7. adambeyoncelowe

    Briefing paper for parliamentary debate.

    It seemed to me she 'resigned' primarily because we didn't all support her idea to report AfME as an organisation. I said it was inappropriate and petty for one charity to complain about another, but that she was free to do so as an individual. Now she has.
  8. adambeyoncelowe

    PACE style CBT for CFS/ME - should it be scrapped?

    So when I say 'activity management', I'm intentionally meaning both pacing and GET, because that's what the clinics do. The clinics intentionally use fluid terms. So sometimes the CBT is pacing advice, sometimes it's about embedding the sort of activity management principles that underline GET...
  9. adambeyoncelowe

    Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

    I think Chris is obviously a good egg, which means I'm feeling more patient with the CMRC than I would have been. Really, the people I want to ask questions of are Harrison and the (non-board member) Mark Edwards. On hype: I understand that feeling. There's a lot being promised, it feels like...
  10. adambeyoncelowe

    Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

    I don't feel this question has been answered. The other Mark Edwards isn't on the board but has been involved with the CMRC. And whether Harrison refutes that he sees ME as an FND, the paper he's involved with explicitly says ME is FND/hysteria. He can refute it all he wants, but the paper has...
  11. adambeyoncelowe

    PACE style CBT for CFS/ME - should it be scrapped?

    But this isn't really CBT. It's pacing. Part of the problem of CBT is that it means everything to everyone. It was very clear on both tables I sat on at NICE that people in clinics use CBT mean a variety of different things, but usually 'activity management'. Asking for continued CBT of any...
  12. adambeyoncelowe

    ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter - Geraghty et al. 2018

    It means time to be ill, but also things like accessing benefits and support, if I'm understanding it properly.
  13. adambeyoncelowe

    PACE style CBT for CFS/ME - should it be scrapped?

    Here's the rub though: NHS-led CBT of any kind doesn't seem to work. Even the supportive stuff. If it did, why is IAPT showing only a 9.2% recovery rate? So do we argue for supportive CBT (which may still be useless) and expend valuable energy explaining the differences between the two kinds...
  14. adambeyoncelowe

    NICE looking for lay members to join the ME/ CFS guideline committee, 2018

    Not a bad suggestion, though an unlikely thing to happen. They were taking suggestions for how to include severe patients, so I would recommend that people submit ideas directly.
  15. adambeyoncelowe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    I think it's a good idea. A few Scottish publications ran articles in the run-up. The more organisations providing press releases, the more likely something is to stick. Also, as with the Parliamentary briefings, it at least means journalists can see a variety of views. That way they'd be less...
  16. adambeyoncelowe

    NICE looking for lay members to join the ME/ CFS guideline committee, 2018

    They did discuss severe patients taking part via Skype etc. That's not clear from this, but I expect this will form a separate group that checks in with and provides evidence to the main group? I suspect they're still figuring that bit out.
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