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  1. Graham

    Funding of ME/CFS research in the UK

    I have data in the form of spreadsheets and a database that covers from the 90s with reliability, and the 80s with less reliability, up to around 2012. I have extracted all the studies funded by the MRC or NIHR, but not those funded by charities. My summary works on studies rather than authors...
  2. Graham

    Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

    Fair comment @Barry , but I wasn't pitching my complaint at Carol's efforts, more the fact that even after a Chief Medical Officer's report in 2002, the Gibson Report in 2006, the EDM in 2010, the numerous meetings held by the ME group in parliament, the debate on the recovery figures led by the...
  3. Graham

    #MEACTION: URGE YOUR MP TO ATTEND PARLIAMENTARY DEBATE ON PACE TRIAL - TUESDAY 20 FEB

    I wrote to mine, but let's just say that the chances are somewhat slim.
  4. Graham

    Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

    90 minutes on basketball, and 30 minutes on PACE. Fine! Move on folks.
  5. Graham

    Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

    (This may seem to be off-topic, but I'm hoping it relates to the discussion on NICE guidelines and ME centres!) I used to teach in the 70s, and yes, there was too much variation, and there were staff who got away with blue murder. But the variation was due to the government allowing different...
  6. Graham

    Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

    I went through a lot of changes in schools over the years, and my general observation would be that restructuring and external assessment puts great stress on professionals who are really committed to doing things in the best interests of their pupils/patients, and much less stress on those who...
  7. Graham

    Protest song about ME & Angel on the Water

    Hi @Robert 1973 - have you seen that Bill Clayton, who runs the Leeds ME group, is looking for singers as well? You can see his requests on Facebook on some of the ME groups, such as the ME Chatroom.
  8. Graham

    A Life Hidden - Blog posts by Naomi Whittingham

    When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their...
  9. Graham

    Protest song about ME & Angel on the Water

    Well, @Robert 1973 , I had a real problem getting men to sing. Sadly, Hunter, who had a beautiful voice, is no longer with us. Nick too had died but prior to our recording, so I created his voice by filtering his friend Leela's voice as a tribute to him. Dez is the only male singer left, and he...
  10. Graham

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

    The PACE trial analyzed their step test in two ways: one effectively measured energy expended against increase in heart-rate, and the other used the Borg perceived scale of effort. Both clearly showed no difference between the groups with CBT or GET and the group without.
  11. Graham

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

    I was chewing this over while meandering over a boggy field with our dog this afternoon. I think I would settle for a two-stage assessment. One would be a before and after activity monitor, carried out over a sensible period of time. I know they have their problems, but we are talking about...
  12. Graham

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

    This has made me think of the roosting display of starlings in various parts of the country. (www.youtube.com/watch?v=V4f_1_r80RY) If you were to focus on one or two starlings in particular, you would just get a busy, chaotic flightpath. But zoom out at the vast flock and the picture is...
  13. Graham

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

    Perhaps then we need to move away from "fatigue" altogether and focus on physical consequences. If psychs want to claim that they have cured a patient's perception of fatigue, should our argument simply be that this is irrelevant: the physical consequence needs to have been changed? After all...
  14. Graham

    Proposed Letter to NICE

    My overall feeling is that I need to reply along the lines of - you followed your normal procedures when choosing the committee to set up the guidelines, and when deciding whether the guidelines needed revision. In the first situation, the evidence for CBT and GET was subjective and weak, and...
  15. Graham

    Proposed Letter to NICE

    I don't normally have much trouble sleeping now that I have found the trick that works for me: a couple of stronger co-codamols, an all-night electric blanket, a hot water bottle, thick pyjamas, thick socks, long johns. I actually manage to stay, well not warm, but the right side of cold, and...
  16. Graham

    Proposed Letter to NICE

    I'm intending to reply, so any thoughts or comments would be welcome. I need a good night's sleep first!
  17. Graham

    Disability News Service: "Civil servant sparks fresh concerns over ideological basis of jobs strategy" [BPS discussed]

    Hi @MEMarge . It is the 12 minute one. The 0.2 is a decimal, i.e. a decimal fraction, two-tenths of an hour, and one-tenth of an hour is 6 minutes. If that's the maximum amount that the person is expected to work, could they argue that that is the maximum time that they could spend applying for...
  18. Graham

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    Sorry Inara, but I disagree. If they accept Oxford, then they have to accept that the studies using it are unable to show any objective improvements. Mind you, I am assuming the new committee can think logically. I know it's pushing our luck.
  19. Graham

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

    I think my postings display both intelligence and fatigue - an excess of one and a lack of the other. I wish I could think clearly enough to work out which way round that is. All I really meant was that, even if I accept the psychiatrists' concepts, decreasing my fatigue would surely be...
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