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The Fable known as The PACE Trial

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 1, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...

    [​IMG]
    Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….

    Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...

    Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.

    A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and bravely to produce an analysis of the faults of the trial and, hosted by Phoenix Rising, published their report.

    Inevitably, the medical world ignored us.

    Thankfully, in addition to our analysis, many others sent letters to a variety of medical journals, containing scathing scientific analysis, creating havoc in their wake.

    But, lacking their linguistic expertise, Graham decided to take a different, satirical approach, and calling on the support of friends and colleagues, and on the graphical skills of his son, Ian, created a series of videos illustrating some of the absurdities of the PACE trial and its subsequent series of papers.

    You can access these videos from http://www.youtube.com/user/MEAnalysis/videos

    The latest two offerings focus on the claims that CBT promotes recovery from ME/CFS:

    Video Six: ME 'Recovery' Song


    Video Seven: How's THAT Recovery?!


    The song, a hillbilly sunflower animation, showcases the talents of people with ME/CFS from around the world: friends, friends of friends, and online volunteers.

    The song came first and was written by Graham, Leela and Ahimsa, with the theme tune to the Beverley Hillbillies in mind, and it was very fortunate that GarageBand (Apple music creation software) had a banjo jingle that really suited it. The music is pure GarageBand, blended, along with the singing, by Dez.

    Video 7, like the ones before, put together a lot of work by many friends here, trying to simplify a very complex and muddled situation.

    Graham, Janelle, and Bob

    (Some of the earlier videos have been translated into German, Norwegian and Czech, so if anyone out there wants to translate any of them into other languages, we'd be happy to help.)


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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    Ninan, Bob, aimossy and 16 others like this.
  2. Firestormm

    Firestormm Senior Member

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    Thanks - as ever - to the work of Graham, Janelle, and Bob - and the others - for putting this series together and keeping us so well informed. I sincerely hope the song will become a sensation at least among our community. Brilliant! :balloons::balloons:
  3. alex3619

    alex3619 Senior Member

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    Where is a Grimm when you need one? ;)

    When I first saw the song clip I listened to it three times. :) I never do that.
    Ninan, Bob, aimossy and 4 others like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I cant wait to be able to listen to this (I wonder if it will play on a friends ipod?), shows how little I know about technology. Thanks to those who did this.
    Min likes this.
  5. Nielk

    Nielk

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    Terrific work, Graham, Bob and Janelle! Thank you.
    Bob and peggy-sue like this.
  6. Simon

    Simon

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    Thanks to Graham, Janelle and Bob for making such a dull and dire subject entertaining. Great work - do hope this goes viral on ME Awareness day.
    Bob, peggy-sue, Min and 4 others like this.
  7. ahimsa

    ahimsa Senior Member

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    I love the latest videos!

    Graham, Bob and Janelle are truly geniuses! ( or is it genii? ;) )

    However, I have no idea how I got a credit for helping with video six. Yes, I do remember reviewing an early version of the lyrics. But my recollection is that the few *very minor* suggestions that I made on on those lyrics did not work and so they were not added.

    So, I don't feel like I really did anything. Other than maybe some encouragement?

    But thanks, anyway, for the shout out!
    Bob, peggy-sue, Min and 2 others like this.
  8. leela

    leela Slow But Hopeful

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    Yeah, I don't deserve a writing credit either (Graham is as generous as he is clever!) All I really did was cheerlead:balloons:
    Bob, peggy-sue, CallieAndToby and 2 others like this.
  9. alex3619

    alex3619 Senior Member

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    I think that might be a good goal for ME day .. spread the video!
    Bob, peggy-sue, Min and 2 others like this.
  10. ukxmrv

    ukxmrv Senior Member

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    I congratulate all the team for their incredible work and the videos.

    Would also like to mention all the ME and CFS campaigners who have also worked against the PACE since it first raised it's ugly head. I'm not sure how many of them belong to PR and also who would want their name mentioned.

    Professor Hooper and Margaret Williams spring to mind. Also the people who have been putting in the FOI requests. The patients who demonstrated outside the MRC years ago. All the people who have written to the medical journals over the years. The patients who obtained all the research information in the early years before the trial started and kept it safe for later. The poor patients who actually did the PACE trial and who wrote about it later.

    Better stop now before it sounds like a academy award win (and I've done nothing to deserve it!)

    Thanks to everyone who has been fighting against PACE and for so long now.
    Bob, Wildcat, peggy-sue and 7 others like this.
  11. CallieAndToby

    CallieAndToby Senior Member

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    Thanks for including me Graham, you've done a wonderful job here. Great job Leela, you sounded awesome!
    My friend listened to it and said, "everyone sounds so tired" - ironically funny.
    Bob, WillowJ, peggy-sue and 3 others like this.
  12. Graham

    Graham Senior Moment

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    Hi Ahimsa: I've only just found this thread, so sorry about the delay. You put in a lot of amendments to make the words fit, but most importantly of all, you wrote verse 2, with the butt-kicking "Fantastic…."
    peggy-sue likes this.
  13. Graham

    Graham Senior Moment

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    Not you too, Leela! Not only did you keep plugging at me to get the right words in the right place, and rephrasing several bits, but you starred in the singing"
    ahimsa and peggy-sue like this.
  14. Graham

    Graham Senior Moment

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    It's been fun, and your contribution was great!

    1000+ watches of the banjo song so far (I don't know if Youtube tracks all the linked viewings as well), and 1400 on the explanatory video 7. The only odd comment that I have had is from someone hoping that I wasn't mocking hillbillies! I pointed out that the hillbilly sunflowers had actually done a good job in spotting the analytic flaws in the PACE study. I guess I can see where she is coming from, but here in the UK we rather like our wide variety of regional dialects, tastes and styles. Adge Cutler and the Wurzels spring to mind.
    Last edited: May 4, 2014
  15. peggy-sue

    peggy-sue

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    You were a wonderful team! Every single one of you.:balloons:

    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
    Bob and ahimsa like this.
  16. leela

    leela Slow But Hopeful

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    Well, @Graham, everyone was just so great, I can't stop listening to it! And I must send a special shout-out to Chloe, Ruby and Isabel, who just tie the whole thing up in a bright, shiny, incredulous ribbon :)
    Bob, WillowJ and ahimsa like this.
  17. Graham

    Graham Senior Moment

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    Chloe, Ruby and Isabel have a dad (a friend) who went down with ME just a few years ago. Another ME friend, Dez, worked with me and made all the extra suggestions and bits that really made it work as a song.
    Bob likes this.
  18. Bob

    Bob

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    Graham will be cross with me for saying this, but I'd also like to add that my role in this project was limited to assisting Graham with the wording of the second video, and some other general cooperation. The videos are, in essence, Graham's creation. At least, he directed them and brought everyone together to work on them. I just helped. Graham absolutely insisted on including my name, so there it is. We often work on projects together, and Graham is always great to work with, as many of you will know.
    Simon, Firestormm, Valentijn and 2 others like this.
  19. ahimsa

    ahimsa Senior Member

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    I have to laugh because I wasn't being modest earlier. I honestly have no memory of doing this! o_O

    :rofl: That's par for the course, I guess! :rofl:

    At least I didn't sing and then forget about it. Right? RIGHT?! :eek::D
    Valentijn, Firestormm, leela and 2 others like this.
  20. WillowJ

    WillowJ Senior Member

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    That line is truly fabulous. :)

    I really enjoy the whole video.

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