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ME Analysis - Patient created Web document relating to the PACE study

Discussion in 'Latest ME/CFS Research' started by alex3619, May 14, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Thanks for doing that. I'll look forward to seeing it, and highlighting it.
    WillowJ and ukxmrv like this.
  2. Graham

    Graham Senior Moment

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    Well, here it is, the Youtube video. I've tested it on a few people and they managed to watch it without throwing up (or throwing something at the screen.)

    WillowJ, oceanblue and Dolphin like this.
  3. Enid

    Enid Senior Member

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    It's a hard battle still in the UK Graham (despite international research findings) - bury their heads in the sand UK medical establishment who ply their wares through to the thinking of GP's and the newly trained upcoming Docs - and we know misinformed. Science/Medical research on our side now - fill the airwaves with science so the nattering totally ignorant self important medics may learn medical understanding like all others moves on.
  4. Graham

    Graham Senior Moment

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    Well I'm going for the silly route! Proper scientific facts seem to go over their heads.
  5. Enid

    Enid Senior Member

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    Yes it will do - the old guard Graham - not the free thinking new ones on the block now.
  6. oceanblue

    oceanblue Senior Member

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    Love the Blofeld-esque intro. And with this video, world domination really is an inevitability. Great work.
    Enid likes this.
  7. Graham

    Graham Senior Moment

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    The first one we did had me dressed in white, with my back to the camera, then spinning round the chair and doing the chat. But we decided that the Blofeld image was too feeble, so went for the blue pieman in the rocking chair. So far two people have picked up the Blofeld bit, and nobody spotted the blue pie man.

    Thanks oceanblue. I'm planning a series of them, each focusing on one different aspect. Have you worked out what the next one will be?
    Enid likes this.
  8. Enid

    Enid Senior Member

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    Small query Graham in your presentation - what exactly is SMC (standard medical care) in the PACE trial - any meds ? if so what for one wonders. This should be something they should specify. But please keep going.:balloons: ..... standard anything here seems non existant ......still trying to find it. Disclosure by the authors would be interesting.....something more than a sticking plaster ???
  9. Graham

    Graham Senior Moment

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    Standard Medical Care was described as being more than you would get from your standard visit to a GP, although a couple of my friends get excellent treatment. Most of them were conducted by a psychiatrist (who of course is also medically qualified) and most of the others by a GP. All had, I understand, some reasonable experience of patients with ME. It included pain and sleep medication where appropriate, and, I believe, possible antidepressants. They also advised them about the illness in general terms.

    All of this is off the top of my head (where nothing much else resides), so don't be surprised if the actual details are not quite right.
  10. Enid

    Enid Senior Member

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    That's good to hear Graham. Reasonable in the absence of more knowledge.
  11. oceanblue

    oceanblue Senior Member

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    Er, are you going to have a set of menacing steel teeth for the next vid?
  12. Dolphin

    Dolphin Senior Member

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    (Off-topic, a little)

    Is there a character, the blue pieman, or are you being self-deprecating? (straight question)
  13. Graham

    Graham Senior Moment

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    Straight answer, haven't you noticed the "avatar" of the ME Analysis page of a blue pie chart man sitting in a rocking chair? Why do you think he hasn't got any hair?

    Well, to be honest, that's a coincidence. Ian had a space in one of the pages, and used the idea of the Newcastle piechart to create this piechart character, then Mark thought it would be a good avatar for the site. I've already got Ian thinking about how to create the next animation.
  14. Dolphin

    Dolphin Senior Member

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    Ok, thanks. I don't know how I missed that - I have a poster of it up on my wall. ;)
  15. Graham

    Graham Senior Moment

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    I have now written to the Australian Broadcasting Corporation, where Richard Horton issued his challenge, pointing out that we have tried to engage him, but have been ignored. I asked them what sort of a discussion he had in mind, and as the challenges went out through them, what suggestions they had. Details on the campaign page.
    ukxmrv and WillowJ like this.
  16. Dolphin

    Dolphin Senior Member

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    Best of luck to Janelle Wiley who will be giving her oral CFSAC testimony tomorrow (Wednesday), sometime between 3:30pm and 4:30pm (Eastern Time).

    She will talk about the ME Analysis project which she was heavily involved with: http://evaluatingpace.phoenixrising.me/homepageanim.html .

    She will also talk about the paper:

    ukxmrv, Bob, WillowJ and 1 other person like this.
  17. oceanblue

    oceanblue Senior Member

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    Wow, great stuff from Janelle, Graham and Tom Kindlon to get high profile opportunityto put the informed patient perspective.
    ukxmrv, Bob, WillowJ and 1 other person like this.
  18. Graham

    Graham Senior Moment

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    If you are in the UK, then add 5 hours to the time - 8:30 to 9:30 for Janelle. And yes, she is a major player in the project! She only has 5 minutes though, so wants to pack a lot in to that spot. Also both Cort and Marly Silverman will be mentioning the project as well.

    Good luck all. I know you'll do well.
    oceanblue, WillowJ, Bob and 1 other person like this.
  19. Graham

    Graham Senior Moment

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  20. Dolphin

    Dolphin Senior Member

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