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  1. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    sorry if i've missed something but Is this RCP the royal college of physicians, royal college of psychs, or something else? if the former why are they writing a guideline NICE are supposed to be writing?
  2. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    I think it really would have been worth it, imo there is no contest in terms of which is more important - his vote or his voice in the media/social media. It matters not what he says in the media in the meantime, if we end up with a guideline that favours the BPS BS the same way or worse than...
  3. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    I'm with you @large donner, it's one rule for one & another for another. How convenient.
  4. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Having said all that, there may be a way to use Dr Shepherd's example to add weight to our request for Burton etc's influence to be curtailed due to CoI? see here https://www.s4me.info/threads/draft-letter-to-nice-about-conflicts-of-interest-in-the-guideline-appointments.6519/page-4
  5. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Oh dear :( I hold Dr S in very high regard and can see he has been put in a very difficult position with this, but i think it's a terrible mistake. I dont think anyone else who has a 'strong opinion' will remove themselves from discussions, oh no. And really, who cares if he wouldnt be able...
  6. JemPD

    The Triumph of Eminence-Based Medicine - Brian Hughes

    @Brian Hughes I'd like to use this marvellous except in my S4ME signature.... would that be ok? So it would read "We should not see ME/CFS as resulting from mass cognitive hysteria among a quarter of a million UK citizens. Rather, we could see the biopsychosocial theory of ME/CFS as a grand...
  7. JemPD

    Who said: don't bother testing patients?

    It's actually the smiling, placatory, patronising bit that i find most offensive about the whole thing. I have also come across several people saying they have FND, talking about it as if their Drs believed it was organic. As you say, the triumph of blurring.
  8. JemPD

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Oh thank God!!! at least there will be one non-lay sensible voice being heard!
  9. JemPD

    Who said: don't bother testing patients?

    What is most disturbing about this is that it is clearly taking shape in the GP surgery. Not just in our own experiences, but i recently watched a couple of episodes of GPs Behind Closed Doors. I'm often not well enough for tv & this wouldn't be my top choice for viewing, but recently for...
  10. JemPD

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    I read Sharpe's tweet about patients being too ill to do FOIs etc, as a sly way of suggesting that they cant be that ill if they're going to all this trouble - a la Rod Liddle. We need to be careful that we dont play into it. The unaware will not understand that a bedbound person spending an hr...
  11. JemPD

    The challenges and implementations of exercise therapy for patients with chronic fatigue syndrome

    I skimmed it, it's grim. But it's exactly what you would expect of a competent & compassionate med student who trusts cochrane... as he's been taught to.
  12. JemPD

    ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

    Me too. A 'care' plan for someone with ME can soon turn sinister. Better to fly under the radar at the moment iyam. Dont want them thinking 'if it's that bad we'd better do something".... knowing that the only things they can do are more ineffective & harmful CBT/GET......... so i'd rather...
  13. JemPD

    Is being pushed in a wheelchair humiliating? BBC: Disabled man drags himself on floor through airport

    Abuse for the guy is not ok :emoji_angry: I hope nothing i've said could be construed as such. For me it was as much a discussion about whether society/people in general think it's humiliating to not be independent, as it was about his specific actions. I agree it's disgraceful that they were...
  14. JemPD

    Is being pushed in a wheelchair humiliating? BBC: Disabled man drags himself on floor through airport

    No doubt the **** who yelled at me from the other side of the street a while back to "get out of that chair you lazy bitch" will find this disabled chap's dragging choice laudable :rolleyes: :bored:
  15. JemPD

    Is being pushed in a wheelchair humiliating? BBC: Disabled man drags himself on floor through airport

    This is a good point. But nobody took hold of him & pushed him into the chair, he was given the option. Similar to somebody saying to me "I'm sorry but i need to get past would it be ok if i pushed you to one side a bit." Exactly. I obviously don't know this person, but i think this reflects a...
  16. JemPD

    Is being pushed in a wheelchair humiliating? BBC: Disabled man drags himself on floor through airport

    https://www.bbc.co.uk/news/uk-45765767 After the airport forgot to load his self propel wheelchair, this paraplegic man chose to drag himself along the floor through the airport rather than be pushed in a 'push only' wheelchair. His reasons are that it would be humiliating & degrading to have...
  17. JemPD

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    If it were up to me we'd not bother to publicise it at all. Linking to it on twitter so it gets loads of views will only encourage the guardian that this is a newsworthy & well 'read' piece, that loads of people are interested in. And MS will simply adore the controversy & drama of it. I'm...
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