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  1. adambeyoncelowe

    Recent update of NICE Committee Member list

    Or maybe they just uploaded the same document again to make sure it was the most recent version?
  2. adambeyoncelowe

    Recent update of NICE Committee Member list

    Maybe the dietitian? But I thought she'd already been announced.
  3. adambeyoncelowe

    Recent update of NICE Committee Member list

    No. This list has been out for a while, I think.
  4. adambeyoncelowe

    Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

    I should add, there are carers on the committee already, and I believe that there is a guideline already for social care for children. Not having acquainted myself with those guidelines, I couldn't say if they're useful to LEAs, for instance.
  5. adambeyoncelowe

    Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

    So I could be wrong here, but it doesn't look like something NICE, in general, is specifically focussed on, because the focus is all on clinical treatment/management and care. If it can be referred to in those other settings, then great. But I don't think NICE would consider it a good use of its...
  6. adambeyoncelowe

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    The wait between is 30 seconds. This is pretty much how I did it, although I wasn't sure how much of a right-angle I was able to get just by looking down. I don't trust my own coordination! ETA: I had my hand at my side, so I didn't rest it on my leg.
  7. adambeyoncelowe

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    I think one might eliminate the clear drop in results if they repeated the protocol too closely together. That first test has to be after enough of a rest for your muscle strength to have returned, I imagine? I tried to let my muscles properly recover between each attempt (not between each of...
  8. adambeyoncelowe

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    So I've just received a dynamometer through the post. Out of curiosity, I tried this. I got 28.5, 20.9 and 20.3. If you keep doing it several times in a row, there does appear to be a training effect on that first result only (i.e., that first reading goes up slightly, although there's still a...
  9. adambeyoncelowe

    Action for M.E.'s big survey, 2019

    Thanks. Yes, I remember looking at these. I'm not sure how good they are for the reasons you mention, but also because they overlap significantly. For example, both mention work, so which category do you score work in? Do you separate physical and mental 'work'? How? Is teaching physical...
  10. adambeyoncelowe

    Action for M.E.'s big survey, 2019

    The idea of creating a new scale is a sensible one. I considered doing separate ones for cognitive and physical function, but that might be too complex.
  11. adambeyoncelowe

    Action for M.E.'s big survey, 2019

    I think so too. The categories don't make much sense to me. 30% to me means you can just about mobilise in your own home, if at all. That's not taking a very short stroll outside.
  12. adambeyoncelowe

    Action for M.E.'s big survey, 2019

    Here it is, for reference.
  13. adambeyoncelowe

    Action for M.E.'s big survey, 2019

    I was concerned by @Action for M.E.'s version of the Functional Ability Scale. They suggest that people at 30% functional capacity might be able to go for a short walk outdoors and that at 70% you might find a walk or swimming helpful. Where is the evidence for this?
  14. adambeyoncelowe

    Illness perceptions in adolescents with CFS (2019) Cara Haines, Maria Loades, Cara Davis

    Their response is frustrating. Do they not understand what subjective improvements are and why they may be problematic alone?
  15. adambeyoncelowe

    ME is not a functional disorder: ME Association 13,000+ petition sent to NICE

    It does say: 'People with CFS/ME should be referred according to local pathways (see CG53)'. That means the final ME guideline will trump this, and presumably there will be a link to those guidelines.
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