1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Vote for Bio-medical research for ME

Discussion in 'Action Alerts and Advocacy' started by Nielk, Aug 10, 2011.

  1. Nielk

    Nielk

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  2. eric_s

    eric_s Senior Member

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    Just gave them 3 votes. I don't know what this page actually is about, though. What will the winner get?
  3. Nielk

    Nielk

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    I'm not sure either. I got this link from Mary Schweitzer.
  4. Battery Muncher

    Battery Muncher Senior Member

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    I've voted. I'm not sure what it's about either. I saw a post by eric suggesting he would welcome private investment in ME. And I have to say, I probably agree.

    Having said that, I voted anyway.
  5. Sasha

    Sasha Fine, thank you

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    38 degrees is a UK petition site. It's not a contest voting site.
  6. Battery Muncher

    Battery Muncher Senior Member

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    Oh OK. How much influence does it have?
  7. Sasha

    Sasha Fine, thank you

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    Good question! I usually assume petitions in general have no influence.

    However, I had heard of 38 degrees because a friend sent me a link to add my name to a petition about an environmental issue so the site itself may be moderately well known.
  8. Battery Muncher

    Battery Muncher Senior Member

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    Ah Ok. Thanks for answering.

    I too usually assume online petitions have no influence, so I was slightly relieved to hear you say that 38degrees may be moderately well known.

    But, having said that, the UK government has now set up an official petition site. Is it worth our time to drum up support for 38 degrees? Or would it be more effective to set an attempt to reach the UK Gov through an official petition?

    We could try get the wider ME/CFS community involved. It would be fantastic if we could get someone like Professor Hooper to do this.
  9. Sasha

    Sasha Fine, thank you

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    I think there was a petition for biomedical research for ME on the govt's earlier official petition site. I think the deal was that if you got over a certain number of votes, you got a spot raising a question in the house.

    I don't want to sound pessimistic but we've had petitions on this before (and I don't think petitions work in general, not just on ME issues) and we've had questions in the house before that just get fobbed off. I don't feel that they get us any progress.
  10. Battery Muncher

    Battery Muncher Senior Member

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    Fair enough. I don't think that's pessimistic at all - if that's your experience, then it seems realistic rather than pessimistic. You clearly know more about this than me. I'm new to this advocacy biz, and still quite naive I'm afraid.
  11. Sasha

    Sasha Fine, thank you

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    Hi Battery Muncher - I don't think I do know more than you! It's just my view but others might have had other experiences and feel differently about it. I wouldn't want to discourage people from trying stuff even though I might not join in - sometimes just doing something keeps people's hopes up, which is no bad thing.

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