Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Total Update: #MEAction Network Research Funding Equality Petition

Discussion in 'General ME/CFS News' started by aimossy, Jul 21, 2015.

  1. aimossy

    aimossy Senior Member

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    The #MEAction Network Research Funding Equality Petition has cracked the 3,000 mark and is at 3,036. The USA signatory total is 985. The Global Solidarity signatory total is 2,051.

    Myalgic Encephalomyelitis (often referred to as Chronic Fatigue Syndrome or ME/CFS) is a severe neurological disease that affects at least 1 million Americans and leaves half of its victims disabled and unable to work. Many patients are considered at a greater functional impairment than those with congestive heart failure, multiple sclerosis, and end-stage renal disease.
    The disease’s annual impact to the US economy is an estimated $24 billion in health care costs, lost wages, and lost productivity. However, at present the U.S. government does not have a research plan in place to mitigate this profound cost to society.
    Currently, the U.S. National Institutes of Health (NIH) funds only $5 million per year for research into this disease.
    As the only moral response to more than thirty years of official and medical neglect of this illness, we demand that Congress increase NIH research funding to $250 million per year, a level proportionate to the disease’s severity, prevalence and impact.
    We, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies, demand full and immediate funding equality for ME.

    Why is this important?

    In order to fuel the research necessary to uncover causes and find effective treatments, we need Congress to fund ME/CFS at a level equivalent to that of other similarly disabling neurological diseases.

    With an estimated 17 million patients worldwide, the longstanding neglect of this disease is a global issue. The US has a leading role to play in the hunt for a cure. With this petition we say, the whole world is watching.

    As the only moral response to more than thirty years of official and medical neglect of this illness, we demand that Congress increase NIH research funding to $250 million per year, a level proportionate to the disease’s severity, prevalence and impact.

    The goal is 50,000 signatures in total and at least 500 signatures from every state.
    In order to accomplish this, we will need to recruit the help of able patients and healthy #MEAllies to bring the petition and its message out into the world and into our schools, churches, workplaces; into our local communities.

    If you agree with this petition follow this link to sign, there is one for USA people to sign and one for everyone else to sign in solidarity of this.

    http://www.meaction.net/funding-equality-petition/
     
    Hutan, Mary, rosie26 and 7 others like this.
  2. aimossy

    aimossy Senior Member

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    Posting this petition on new articles on or about ME/CFS will help increase the reach. If there are any healthy willing #MEAllies out there who would go physically collecting with their good old WiFi devices that would be brilliant as well. I'm sure MEAction would be keen to hear from people who would want to do this.
     
    Simon, Sasha and Scarecrow like this.
  3. Sasha

    Sasha Fine, thank you

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    That would make a great news story!

    A great thing to do for someone standing outside the NIH (while filming it!).
     
    aimossy and Scarecrow like this.
  4. Sasha

    Sasha Fine, thank you

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    States could compete to be the first to get 500 signatures!
     
    aimossy and Scarecrow like this.
  5. SOC

    SOC Senior Member

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    Five people reported to me today that they signed the petition, but only one name shows up in the Last Signed By section and the signatures count only went up by two. Does anyone know if this is normal? I'd hate to think people are signing (or think they signed) and not actually getting the signatures on the petition. We need every signature we can get. We can't afford to lose any.
     
    aimossy likes this.
  6. aimossy

    aimossy Senior Member

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    SOC likes this.
  7. *GG*

    *GG* Senior Member

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    How can we tell if it worked or not? Think I signed this some time ago. Site says Beta on it, so does that mean it is a work in progress?

    GG
     
  8. Bob

    Bob

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    I asked a friend to sign the international petition a moment ago and it definitely added a single signature to the count, immediately. Just letting you know in case helpful.

    Edit: And we received a confirmation email.
     
    Last edited: Aug 20, 2015
    Sasha likes this.
  9. searcher

    searcher

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    @SOC - Do you know if they signed the international petition or an individual state petition? The counter only goes up for the individual petition that gets signed so it's possible they signed different petitions. We combine all the petition signatures when we speak with Congress. If you wouldn't mind IMing me a name or names of people who signed, I will look into this ASAP.

    @ggingues- We should remove "beta" from the site. We put it there early on because things were changing rapidly, but the petition software is a third party app that is very stable and used on a lot of sites for collecting petition signatures. Have you gotten any emails from MEAction since you signed the ptition?
     
    Sasha and Bob like this.
  10. searcher

    searcher

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    @SOC and I exchanged messages today so I could look into the five names. Two newly signed the Illinois petition today, one had signed in May, and one signed the global petition (which often happens and is not a problem as we then add those signatures to the appropriate states.) The fifth may have signed with a different first name.

    Please let me know if anyone comes across potential issues as I am happy to investigate.

    A general update: we are at 1987 US signatures and 2790 global signatures (some of which are US signatures) for a total of 4777 signatures. 5000 here we come!
     
    Bob, Sasha, Snookum96 and 1 other person like this.

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