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New ME and CFS Advocacy Website is launched

Discussion in 'Institute of Medicine (IOM) Government Contract' started by caledonia, Mar 17, 2014.

  1. caledonia

    caledonia

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    Cincinnati, OH, USA
    Hi folks,

    We are launching the new advocacy website that I've been hinting about today. I invite you to check it out, and if you like what you see, join:

    If you ever wished that ME and CFS patients had a place or organization where they could speak in a united way about advocacy issues such as the egregious actions of the Department of Health and Human Services, adopting the Canadian Consensus Criteria case definition, or the lack of biomedical funding - this is it.

    The purpose of this site is to promote and support the advocacy efforts of M.E. expert researchers, clinicians and patient advocates. This can mean anything from sharing and spreading information with patients, the general public, the press and our Congressional representatives, to protesting in various ways, either online or in real life.

    Your source for advocacy information and actions for ME and CFS - http://meadvocacy.org - a project of May12.org. Join today.
    Soporificat, Ember, Wendi C and 3 others like this.
  2. caledonia

    caledonia

    Messages:
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    Cincinnati, OH, USA
    I'm also asking people to start sharing the site on message boards, social media, in your signature, etc.

    Here are some ideas for what to say:

    Twitter

    http://meadvocacy.org - Your source for advocacy information and actions for ME and CFS #mecfs #cfs #myalgic

    Facebook, email, messageboards (longer version)
    If you ever wished that ME and CFS patients had a place or organization where they could speak in a united way about advocacy issues such as the egregious actions of the Department of Health and Human Services, adopting the Canadian Consensus Criteria case definition, or the lack of biomedical funding - this is it.

    The purpose of this site is to promote and support the advocacy efforts of M.E. expert researchers, clinicians and patient advocates. This can mean anything from sharing and spreading information with patients, the general public, the press and our Congressional representatives, to protesting in various ways, either online or in real life.

    Your source for advocacy information and actions for ME and CFS - http://meadvocacy.org - a project of May12.org. Join today.

    Facebook, email, messageboards (shorter version)

    If you ever wished that ME and CFS patients had a place or organization where they could speak in a united way about advocacy issues- this is it.

    Through this site we will be able to share and spread information with patients, the general public, the press and our Congressional representatives, and also protest in various ways, either online or in real life.

    Your source for advocacy information and actions for ME and CFS - http://meadvocacy.org - a project of May12.org. Join today.

    Signature line on messageboards (longer)

    Your source for advocacy information and actions for ME and CFS - http://meadvocacy.org - a project of May12.org. Join today.

    Signature line on messageboards (shorter)

    Your source for advocacy information and actions for ME and CFS - http://meadvocacy.org
    justinreilly, Roy S and Nielk like this.
  3. Nielk

    Nielk

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    Queens, NY
    Joined, tweeted and posted on facebook.
    Last edited: May 1, 2014
    justinreilly likes this.
  4. Sasha

    Sasha Fine, thank you

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    UK
    Looks v. interesting, @caledonia!

    Just having a little look - if someone joins to get email alerts, is it possible to unsubscribe if they get a bit much?
  5. caledonia

    caledonia

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    Cincinnati, OH, USA
    I'm still trying to learn all the ins and outs of the Nationbuilder platform (what the site is built on), but I would think so, since that's the standard for the web.

    My intention is to go for quality and not quantity. So if you got something, it should be important and actionable.
    justinreilly and Sasha like this.

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