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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Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

Discussion in 'General ME/CFS News' started by Sasha, Apr 26, 2016.

  1. Sasha

    Sasha Fine, thank you

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    This is astonishing - I don't even recall this being launched!

    https://www.change.org/p/increase-funding-so-we-can-find-a-cure

     
    gabriella17, ivorin, Mary and 25 others like this.
  2. Hilary

    Hilary Senior Member

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    Well that says it all really - research into male-pattern baldness getting twice as much...:confused::aghhh: -
    Signed :)
     
    markielock, Joh, marygelpi and 3 others like this.
  3. TiredSam

    TiredSam The wise nematode hibernates

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    Germany
    @Sasha I've just noticed your Tell US govt: Investigate PACE! signature. If they can bring FIFA and Volkswagen to account, why not? Should be easy enough to demonstrate how much harm PACE has caused US ME sufferers.
     
    Joh, marygelpi, Jennifer J and 2 others like this.
  4. *GG*

    *GG* Senior Member

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    Concord, NH
    Lots of Signatures, I had already signed it at some point and time :)

    GG
     
    Joh and marygelpi like this.
  5. Bob

    Bob

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    England (south coast)
    Great petition, and great result! :star::star::star::rocket::rocket::rocket:

    This must be our community's most successful petition to date?

    I was vaguely aware of it but it pretty much flew under my radar as well.
     
    Joh, Sasha, Jennifer J and 1 other person like this.
  6. *GG*

    *GG* Senior Member

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    Concord, NH
    yes, nearly 25,000 signatures is a lot for us, like herding cats :)

    GG
     
    Snow Leopard, Jennifer J and Bob like this.
  7. panckage

    panckage Senior Member

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    Vancouver, BC
    Interesting. It looks like its missing the justification for the $100 million a year. I think if it was added it would help with wider support!
     
    Izola likes this.
  8. Justin30

    Justin30 Senior Member

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    This is absolutely fantastic I have sent this to many people already....
     
    Joh likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    this petition needs only something like another 130 people to sign it before they have the total they are after before its sent, so really think about signing it if you havent done so. (I had missed this one too).
     
  10. Jennifer J

    Jennifer J Senior Member

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    Southern California
    Does anyone know what they really do with our street address? They want my street address and full name. I don't mind full name, but street address I'm not comfortable giving this to any website. I tried to read the privacy and other click on, but couldn't read through it all. I'm concerned because as it is my street address keeps coming up on the internet and I have to keep trying to get it taken off. Thank you.
     
    Comet likes this.
  11. Justin30

    Justin30 Senior Member

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    I wish they would allow more than 25,000 signatures....i bet you we could get another 15,000 on there buy maube I have high hopes...
     
    Jennifer J likes this.
  12. medfeb

    medfeb Senior Member

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    This petition was launched just 4 weeks ago. On Sunday morning, it had 10K signatures and by Sunday night, it had 16K or so. Remarkable. Not sure what made it take off except I saw someone on twitter with many followers endorse it.

    @Jennifer J - I don't blame you about your address. If it requires an address, maybe just put in a dummy address. If you could include at least your state, that would allow the petitioner to show legislative leaders for the different states that their constituents are interested.

    Mary Gelpi, the petitioner, changed the last line to match the letter so it now says NIH, instead of CDC.
    With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the NIH’s research budget to $100 million for ME/CFS funding.
     
    Joh, marygelpi, Jennifer J and 3 others like this.
  13. dannybex

    dannybex Senior Member

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    It's all over Facebook. When one signs it, as many of us have, then one has the option to post it to Facebook, or twitter, etc., to ask others to sign as well and help spread the word.
     
    Joh, marygelpi, *GG* and 1 other person like this.
  14. AndyPR

    AndyPR Senior Member

    Signed. It is now over 25k :)
     
    Joh, marygelpi, Jennifer J and 3 others like this.
  15. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    Same!
     
    Joh, marygelpi, Jennifer J and 3 others like this.
  16. *GG*

    *GG* Senior Member

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    Concord, NH
    How about just giving them the Post Office address or some other place? Former work address? etc..

    GG
     
    Jennifer J likes this.
  17. BurnA

    BurnA Senior Member

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    Does anyone know what happens with this petition ? Who does it get presented to and is there any significance placed on the no. of signatories ?
    The reason I ask is because it seems that congress are the main players in determining funding, if so they are the ones that should be targeted.
     
    Justin30, dannybex and Jennifer J like this.
  18. Sasha

    Sasha Fine, thank you

    Messages:
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    UK
    A lot of these petitions have an ever-receding goal - it adjusts upwards as soon as it reaches the next 1,000 or whatever.
     
    Joh and taniaaust1 like this.
  19. *GG*

    *GG* Senior Member

    Messages:
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    Concord, NH
    They do, the goal post has now been moved to 35K signatures. It has about 25.5 now :)

    GG
     
  20. dannybex

    dannybex Senior Member

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    Seattle
    In small print below the main copy it says it'll be delivered to Francis Collins (head of NIH) and Sylvia Burell, the Secretary of Health and Human Services. I agree it should be sent to Congress, but not sure how that is done (to each member?) via these 'change.org'-type online petitions.

    Screen Shot 2016-04-30 at 6.08.55 PM.png
     
    marygelpi, BurnA, panckage and 2 others like this.

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