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  1. Graham

    United Kingdom: Sussex & Kent ME/CFS Society News

    Both Bob and I were members of the S&K Society a long while back. It's how we met, and how I met a number of other good folk, so it can't all be bad. But Bob and I crossed swords with the "society" over the promotion of the Lightning Therapy, and the bullying that was going on when members...
  2. Graham

    S4ME is looking for another representative for the NICE ME/CFS Guidelines review process

    I'd like to support ME Marge's offer to be a member. I know you aren't looking for votes or anything yet, but I know her well enough to value her contributions: as a carer she has the understanding, but also doesn't get brainfog: and she is a determined lady!
  3. Graham

    United Kingdom: National Health Service (NHS) news

    Perhaps we could use PACE to widen the attack and include MUS by highlighting the weak standards of "proof" required of psychiatrists and psychologists.
  4. Graham

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Actually, I forgot to add, the original MRC committee was set up in 2002 following a critical Chief Medical Officer's report. It was reorganized in 2006 after the Gibson report, and that was when Holgate took over the reins, so in that sense he has been running the show for 11 years. There's not...
  5. Graham

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    But there is one aspect of MRC funding that is relevant: their attitude towards biomedical research. It's fine to claim that the applications were of poor quality, but remember that the Gibson enquiry named three experienced researchers that had had applications rejected (it is impossible to get...
  6. Graham

    PIP Tribunal

    So sorry to hear this Wonko. If only the same firm and principles applied to each MP when they tried to claim expenses.
  7. Graham

    Nature Correspondence: response to Sharpe and Chalder

    Don't worry about that. On the one hand we have people with a handful of degrees unable to accept that their errors in lowering the targets would have shamed an A-level student, and on the other, a several of the key figures in analyzing their faults and bringing them to book, like you, do not...
  8. Graham

    House built on old golf course - yes or no ?

    I live in the south-east of the UK: but we are the highest point for miles around, so if there is snow, we get it. We do have a garage, but it has never been empty enough to get a car in, and anyway, it was built for the small UK cars of the 60s - in a medium-sized modern car I'd probably have...
  9. Graham

    House built on old golf course - yes or no ?

    There are three of us in our bungalow, so things aren't really the same, but with two of us having ME and one having fibro, it isn't vastly better. We too have got to the stage of considering whether to stay or repair, and went for the repair option. Each major job was exhausting, but we...
  10. Graham

    MUST Fight MUS

    That's exactly what I meant about them being sociopaths. I came across a few in teaching - I think the giveaway is the way in which they treat "juniors" who disagree with them: that's when they lash out, rather than in public, where they risk a loss of face. What has this to do with MUS? Well...
  11. Graham

    MUST Fight MUS

    My inner nature makes me very suspicious of highly ambitious folk. But trying to think rationally about it all, I think the truth is that many of the senior figures in all of this feel quite inadequate when it comes to statistics and analysis, and are easily led either by others or by their...
  12. Graham

    MUST Fight MUS

    Whenever I have read anything of Simon Wessely's, I have always been struck by the clarity with which he avoids saying anything too specific. It always sounds as though he is saying one thing, but it seldom seems to pan out. I find it impossible to trust people who are so difficult to pin down...
  13. Graham

    How to keep a steady temperature at night in bed?

    My legs ache with cold at night, particularly around 3:00 when our natural body temperature drops. Besides wearing lots of warm stuff, I find an all-night electric underblanket is the solution. It is low voltage, and has given me no trouble for years. Mine has settings 0 to 6, and I find 3 or 4...
  14. Graham

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    I like your percentages, @pteropus ! I look at the standard scales for activity, and their percentages, or their number scale, and get frustrated that in no way do these match reality, unless the scale is logarithmic, like decibels. But of course, the decibel scale represents the way that sound...
  15. Graham

    Children's education

    Yes, the pressure is immoral: I remember it only too well - at one time we thought we were starting to go down the route of getting in social services. There was no online option available then (it was the 90s), so he had, at best, 3 hours of tuition a week, organized each half-term, but always...
  16. Graham

    Children's education

    Hi @Amw66 . I can't offer you any other suggestions unfortunately: it's well outside my zone. But as an ex-Head of Maths who has ME, and whose son also went down with it when he was 8, can I just say that state education is unbelievably inefficient. It is relatively easy to catch up on things...
  17. Graham

    Children's education

    Would it be worth contacting Jane Colby of Tymes Trust, who has a long history of campaigning for children's educational needs?
  18. Graham

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    It sounds to me as if the original committee had a majority of people pushing for CBT/GET, but a vocal minority unable to support them. So they came up with a compromise of putting it down and making it subject to patients agreeing to it. Little did the minority realize that 120 lines on CBT and...
  19. Graham

    " Archers fans in tears over sepsis death storyline"

    Actually, last year, the wife of a cousin (in her 60s) died suddenly of sepsis following a short spell of gardening. They live in a small village, and she was a keen gardener.
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