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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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May 12, 2013

Discussion in 'Action Alerts and Advocacy' started by Valentijn, Feb 12, 2013.

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Where are you willing to go to an ME demonstration on or near May 12, 2013

  1. Nowhere

    1 vote(s)
    33.3%
  2. London

    1 vote(s)
    33.3%
  3. Eastern Europe

    0 vote(s)
    0.0%
  4. Scandinavia

    0 vote(s)
    0.0%
  5. SW Europe

    0 vote(s)
    0.0%
  6. Central Europe

    1 vote(s)
    33.3%
  7. Eastern Australia

    0 vote(s)
    0.0%
  8. Central Australia

    0 vote(s)
    0.0%
  9. Western Australia

    0 vote(s)
    0.0%
  10. Eastern Canada

    0 vote(s)
    0.0%
  11. Central Canada

    0 vote(s)
    0.0%
  12. Western Canada

    0 vote(s)
    0.0%
  13. NE USA

    1 vote(s)
    33.3%
  14. Southern USA

    0 vote(s)
    0.0%
  15. Central USA

    0 vote(s)
    0.0%
  16. NW USA

    0 vote(s)
    0.0%
  17. SW USA

    0 vote(s)
    0.0%
  18. South America

    0 vote(s)
    0.0%
  19. Asia

    0 vote(s)
    0.0%
  20. Africa

    0 vote(s)
    0.0%
Multiple votes are allowed.
  1. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    It's getting to be that time of year again, and I think it would be nice if we could organize some sort of demonstration/protest regarding the treatment of ME patients and various issues such as research funding, etc. May 12 also happens to be on a Sunday, which should be very convenient even for working ME patients (though maybe worse for getting attention?).

    The DSM-V is coming out in the middle of May, so the timing would be ideal if we wanted to protest the over-psychologization of physiological medical disorders in a more general manner as well. The new "Somatic Symptom Disorder" is particularly relevant, both because the BPS school's theories about ME would mean we definitely have SSD, and because it is such a broad diagnosis that a large proportion of all medically ill people would have it, as well as a huge chunk of the healthy population.

    I think London would be one highly desirable place to have a demonstration, due to the dense population of poorly treated ME patients in the area. But maybe people would also like to have demonstrations elsewhere, if interested. A poll is attached to assess interest - multiple answers are allowed, in case there's multiple locations anyone would be willing to demonstrate at. And yes, the answers are more specific for English-speaking areas, since that's where most forum members are and the number of poll options are limited!

    Oh, and I know absolutely nothing about organizing protests or the laws governing them, so is anyone more experienced in that area that could contribute?
     
    Little Bluestem and Kati like this.
  2. Kati

    Kati Patient in training

    Messages:
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    Likes:
    1,788
    Valentijn also in May ( May 31st) is Invest in ME, worth keeping in mind.
     
    Valentijn likes this.

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