Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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#MillionsMissingDublin

Discussion in 'Upcoming ME/CFS Events' started by Noirin08, Apr 6, 2017.

  1. Noirin08

    Noirin08

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    Hi to all in Ireland,

    We're having a #MillionsMissing demonstration outside of the Dáil on Thursday May 11th from 11am to 3pm. Please consider coming along to support this awareness campaign.

    If you can't come, you can send a pair of shoes to show to represent your inability to attend and the life that you're missing because of M.E.
     
  2. AndyPR

    AndyPR Senior Member

    In case people want to take advantage of this, can you provide the information on where to send shoes, or link to where people can see this information already?
     
  3. Noirin08

    Noirin08

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  4. JoanDublin

    JoanDublin Senior Member

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    Dublin, Ireland
    Hi Andy,
    If people want the address to post shoes just ask on the FB event page or, if they are not on FB, just send a message to either noreen or myself and we can pass the address on. Just don't want to put a patients address on a public forum
     
  5. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    dangermouse and AndyPR like this.
  6. Noirin08

    Noirin08

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  7. slysaint

    slysaint Senior Member

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    I posted this on another thread and have sent it to other #MM organisers:

    As you will be aware there has been increasing pressure to get the PACE trial retracted. This has managed to attract NO PUBLICITY or recognition in the mainstream UK Media so far.

    If there is one thing that has detrimentally affected how ME is 'viewed' and 'treated' across the world it is this scandalous piece of 'research' (along with the name change to CFS).

    Outside our community, very few people are even aware of what it was or how it has influenced policy by Health Depts everywhere, stifled proper biomedical research, and could now be leading us to be confined to obscurity and added to the list of MUS by the WHO.

    I understand that #MillionsMissing aim is to raise ME awareness, but is this enough?

    Is there anyway that a message of Retract PACE now be included in the protests? It might make people who are unaware of our plight find out more. It could also be the only way the real issues get to be exposed if the media were to investigate what the PACE trial represents.

    This could be the foundation stone on which the whole ignorant BPS approach to ME is built, which once destroyed , will bring the whole lot down. This would be some achievement.

    Please consider it.

    I was thinking maybe a couple of placards/signs with 'Retract PACE' on it ??
     
    AndyPR likes this.
  8. Noirin08

    Noirin08

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    Hi @slysaint, you are probably aware that there have been numerous, and so far failed, attempts to have the PACE trail retracted.

    There was also a petition in the U.K. to get signatures to have this brought to your government's attention but it didn't get enough signatures (afaik).

    So, they're trying again here: https://www.facebook.com/UKPARLIAMENTDEBATEME/?pnref=story.unseen-section

    100,000 signatures from the U.K. or British citizens are required. Here's the link to the petition:
    https://petition.parliament.uk/petitions/190618

    As regards the PACE trial in Ireland, I doubt they know anything about it even though I have informed them, as have others. If I were in the U.K., I would definitely have a placard stating "Retract PACE" on it. As you say, its debunking got little U.K. media. There is a reason for that, of course. Some of us here have asked some media outlets to cover the PACE scandal but didn't succeed. Even if it were covered here, it would not probably amount to anything.

    You're right, raising awareness is not enough and we are pushing our government to *do* something for M.E. patients here - and not for the first time. But this is the first time a group of us have come together, I think.
     
    slysaint and AndyPR like this.

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