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One petition, one thank you, & one voting competition - get involved

Discussion in 'General ME/CFS News' started by Bob, Oct 4, 2013.

  1. Bob

    Bob

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    England, UK
    There's quite a lot of info being posted on the forum at the moment, and I thought that some folks might have missed some easy activities to get involved with...


    Key:
    ME/CFS = Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
    FM = Fybromyalgia
    DHHS or HHS = Department of Health & Human Services (USA)
    IOM = Institute of Medicine
    CCC = Canadian Consensus Criteria



    Petition:
    Tell DHHS: We have suffered long enough.
    "On May 12th, 9 ME patient organizations and 26 advocates sent a joint letter to the Department of Health and Human Services (DHHS) calling on them to stop using the term “chronic fatigue syndrome” with its vague case definitions and start using the Canadian Consensus Criteria, which requires the hallmark symptom of post-exertional malaise seen in ME.
    If you do one thing this month, join us and sign this petition to DHHS to change the definition - and the name!"

    http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/
    http://forums.phoenixrising.me/index.php?threads/petition-to-stop-the-iom-contract.25604/


    New Petition:
    Stop the HHS-IOM contract and accept the CCC definition of M.E.
    "We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."
    https://secure.avaaz.org/en/petitio...act_and_accept_the_CCC_definition_of_ME/?copy


    Thank you:
    Thank you to our ME/CFS experts.
    "We applaud these experts for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients. Please join us in sending them a note to thank them and show them our support."
    http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/
    http://forums.phoenixrising.me/inde...me-cfs-experts-for-their-letter-to-hhs.25632/


    -------------------------------------------------------------------------------------------

    Voting competition (paused):

    Congratulations to everyone who got involved in the voting competition.
    We were successful in the first round!
    'May12th Awareness Day for ME/CFS and FM' is a semi-finalist.
    The first round for this competition has finished, and the competition is currently paused until it is re-opened for the next round.

    May 12th Awareness Day for ME/CFS and FM
    "This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day."
    http://www.avivacommunityfund.org/ideas/acf17388
    http://forums.phoenixrising.me/inde...nd-a-year-of-me-fm-awareness-in-canada.25603/


    .
    Last edited: Oct 28, 2013
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    bump
    Bob likes this.
  3. beaker

    beaker CFS/ME 1986

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    bump

    It's important ! Please get involved.
    Bob likes this.
  4. Keela Too

    Keela Too Senior Member

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    Done, done & daily done! :)
    Bob likes this.
  5. peggy-sue

    peggy-sue

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    Thank you so much for doing this Bob - I've been desperate to get involved - didn't know how or even if I could from this corner of the planet.:)
    I've done it now.
    readyforlife, beaker and Bob like this.
  6. Bob

    Bob

    Messages:
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    England, UK
    New Petition:
    Stop the HHS-IOM contract and accept the CCC definition of M.E.

    Details added to the opening post.
    Last edited: Oct 28, 2013
    Izola, Waverunner, beaker and 6 others like this.
  7. Shell

    Shell Senior Member

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    Signed.
    Izola, beaker and Bob like this.
  8. peggy-sue

    peggy-sue

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    Scotland
    Avaaz hasn't sent me that yet, but it's signed.:thumbsup:
    beaker and Bob like this.
  9. Keela Too

    Keela Too Senior Member

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    N.Ireland
    Great to have these all in one place :)
    Izola, beaker and Bob like this.
  10. Ecoclimber

    Ecoclimber Senior Member

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    Mercer Island Wa
  11. Ecoclimber

    Ecoclimber Senior Member

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    Mercer Island Wa
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    @Ecoclimber is your signature a joke or are you serious?

    GG
  13. Ecoclimber

    Ecoclimber Senior Member

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    Mercer Island Wa
    Not sure what you mean? I was bumping the thread to get it back to the top. I signed the advocates letter with my full name. Please clarify!
    Last edited: Feb 10, 2014
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    I think @ggingues means your Obama quote!
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Yes, I mean the Obama quote.

    GG

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