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  1. M

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    I would say yes. Just an outline summary of the major harms maybe. The person I was discussing it with last week, was keen to get evidence of PACE impacts in other countries. She had something from USA. Even though this is a debate only lasting 30 mins, the MP is able to get a lot of info over...
  2. M

    PACE trial data

    Maybe this information re their inadequacies re data storage/retrieval should be passed on to the relevant grant awards people. It is obvious from my previous sentence that I do not have enough grasp of the terminology to pursue this. Anyone else who could follow this up?
  3. M

    Psychosomatic jaw dysfunction

    Is a delusional middle-aged female the exception that proves the rule?
  4. M

    Royal College of Paediatrics and Child Health conference, 13-15th March 2018, "Children First – Ethics, Morality and Advocacy in Childhood"

    Interesting though, will she fly back to Bristol for the next day meeting on Trial design at which she was scheduled to speak for 10 mins? If imy memory is correct. What are the odds that she'll ditch that, delegate it to a colleague and sty up in Scotland for the dinner on Wed and other...
  5. M

    Royal College of Paediatrics and Child Health conference, 13-15th March 2018, "Children First – Ethics, Morality and Advocacy in Childhood"

    At least she is not a keynote speaker, merely doing an early morning practise session on the first day. Hopefully the turn out won't be huge. Probably not worth crowdfunding Dr Rowe to come over. We should leave that to next year when he and Dr Speight can take centre stage with a keynote...
  6. M

    You make me tired: An experimental test of the role of interpersonal operant conditioning in fatigue 2018 Bert Lenaert et al

    Loving this thread for the comments. Not for the tripe aka psych "research". Shame that we need to know about all this. Anyone with time to review these papers for the rubbish they are?
  7. M

    Daily Mail: Royal Wedding harpist on her diagnosis of ME/CFS

    See #11 @Sly Saint for refs. New article seems probably timed to coincide with new album! @Adrian
  8. M

    Daily Mail: Royal Wedding harpist on her diagnosis of ME/CFS

    Yes I thought Charles' comments about people who (are lucky enough to) improve, often do not fully recover to their previous levels of health and activity. NB My version of what he said. I think the article mentioned that she is off on tour soon, or at least back to public performance. I hope...
  9. M

    PACE trial data

    Maybe Robin Callender Smith (QMUL) has an opinion, I think he and his wife signed the Raciannello letter to Arch Dis in Childhood re EC's SMILE trial. If someone has contact details maybe he would consider relaying info to Carol Monaghan for the 20 Feb debate.
  10. M

    PACE trial data

    I would think that in the current climate, they would not really want to continue this study, or at least be very selective with their results.. From another angle, yes PDW has retired but AFAIK, is still alive and well. He appears to have the capacity to give lectures/advise insurance...
  11. M

    Daily Mail: Royal Wedding harpist on her diagnosis of ME/CFS

    Overall it's not a bad article. My daughter read it out earlier, but did not look at the comments. When I spent 12 weeks in hospital, mainly on my back (late 70s) I could only read The Express or the Mail. The others were too large and awkward when horizontal! I guess in those days there was...
  12. M

    PACE trial data

    I wonder if NICE have the teeth to extract the data. PACE is pivotal, not only to ME, but many of the MUS stuff. it was one of the final points raised at our table. PACE needed to be looked at again in light of reanalysis of data released following FOI tribunal.
  13. M

    PACE Trial application to MRC for funding in 2002

    May be worth contacting the Chair of Trustees direct, rather than SC or general AfME email. Have sent Graham info on this @JohnTheJack as I know you two have worked on previous stuff.
  14. M

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    Thanks for this extra info re Camelford, always good to get the 'inside story'. As you can tell from the post my recollection was somewhat hazy and also disjointed. I really should stop posting that late! I mentioned it only because it has been raised before re Wessely. Can't remember who or...
  15. M

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    There is the GP Sarah Wollaston (Cons). Obviously, not currently working as a GP due to being an MP. From memory (not always reliable, especially past 10pm) her constituency is in the SW, possibly even Cornwall. This is relevant because of Camelford. A town where pollutants from a factory...
  16. M

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    The recent debate re PIP, led by Laura Pidcock (Durham) was excellent. I watched most of it. There were a handful of personal stories mentioned by other MPs. The main points of the debate came from Laura and was peppered with info from others and Yes, quoted the no of responses she had got on...
  17. M

    Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

    Excellent suggestions @Amw66. Mary Dimmock has just written a paper on this. She is involved with ME Action and advocacy and co-authored the US report on cost of ME to the US economy. She could provide excellent succinct input.
  18. M

    Forward ME Group minutes from meeting 10th January 2018

    Anyone know if their next mtg was yesterday or next Wed?
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