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"PACE and a plea for timely strategic action in the ME community" (ANGLIA ME ACTION 10 October 2016)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Oct 10, 2016.

  1. Dolphin

    Dolphin Senior Member

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    slysaint, Chrisb, Woolie and 8 others like this.
  2. trishrhymes

    trishrhymes Senior Member

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    I've never heard of Anglia ME action. I've just glanced through their website to see what's there, and it looks like someone has put a lot of work into collating info. on the political aspects of ME in the UK. It's kind of disconcerting not being given any idea of who is behind it, but then a lot of bloggers use pseudonyms I guess. The name suggests it's a group rather than an individual.

    While I heartily agree that we need a peer reviewed journal article of the type described, I can't see how simply expressing a wish for something to happen will make it happen. I think I understand that Mathees, Kindlon et al are putting together a more detailed analysis of the PACE data aiming for publication. I must admit I'm pinning my hopes on that.

    I don't like to sound critical, it looks like a splendid website, I just wonder whether it will be able to exert any influence, and if so, who it's trying to influence - politicians won't read it. The headline suggests they are asking us ('the ME community') to act. From what I've seen people are trying hard to make effective protests and to inform politicians. I'm not sure what more can be done, given how ill we all are.
     
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  3. AndyPR

    AndyPR Senior Member

    Well said @trishrhymes , you've basically put into words my thoughts about this.
     
    trishrhymes likes this.
  4. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    ON, Canada
    Well, they are plugging Plague by Heckenlively & Mikovits, if that helps...

    I guess no CBT for you, then! ;)

    =====

    Good website, however. It's a bit like what ME Association's would be like if it'd toned down the crazy. :p
     
    Last edited: Oct 10, 2016
    trishrhymes likes this.
  5. BurnA

    BurnA Senior Member

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    That's what i was thinking!
    I didn't want to say anything in case someone thought i was being critical, but... was there anything in that we weren't all thinking anyway ?
     
    trishrhymes likes this.
  6. Woolie

    Woolie Senior Member

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    Yes, I'm sure those working on the data have already thought of this!

    Maybe someone new out there with the right background and qualifications will read that public request from Anglia ME Action and will be suddenly called to arms: "Hey, I've never thought about this before, but what you wrote inspired me - I will now publish a critique on PACE, for the betterment of all mankind". :rolleyes:
     
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  7. trishrhymes

    trishrhymes Senior Member

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    I'm feeling a bit guilty about being critical of this person/ people. They have clearly put a lot of work into gathering together useful information for anyone wanting to learn more of the background of the PACE fiasco, and potentially to use it for positive action.

    And I'm sure we all agree that it would be great to have a peer reviewed paper covering this and reanalyzing the data. I share the sense of powerlessness to make this happen myself, and longing for it to happen.

    It is just the probably unintended tone of criticism of others for not taking action on this that feels unfair.

    We all want the same ends, and do what we can. I celebrate what such sick people have been able to achieve and am hugely thankful to, for example Alem Mathees and his co-workers, the people who run PR, and the good patient organisations, and everyone who in a large or small way advocates on our behalf.
     
    Daisymay, Comet, Dolphin and 2 others like this.
  8. Woolie

    Woolie Senior Member

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    Absolutely true, @trishrhymes. Doing something positive is always good, even if its just trying to inspire others.
     
  9. Sidereal

    Sidereal Senior Member

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    The tone of this is somewhat offensive. How quickly does this person think a manuscript can be produced for a peer-reviewed journal?
     
    Valentijn likes this.

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