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Tell US Congress to Increase Funding for ME Research and More - with one click easy app.

Discussion in 'Action Alerts and Advocacy' started by Nielk, Apr 22, 2015.

  1. Nielk

    Nielk

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    One of MEadvocacy.org’s aims is to empower ME patients and their supporters with a strong voice. For the past three decades, these voices have been ignored. The Department of Health and Human Services (HHS) has continuously neglected and marginalized this disease, by using overly broad definitions, trivializing disease names, and consistently underfunding research.

    This has resulted in substandard care for ME patients by the medical community, leaving a generation of ME patients suffering with little hope for the future. Unconscionably, the upcoming generation of patients are facing the same issues as 30 years ago.

    We must go over HHS' heads directly to Congress. Tell your Congressional representatives - we have had enough of this abuse. NO MORE!

    Click here to participate:

    http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research
     
  2. DiamondEye

    DiamondEye

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    Signed.
     
    Nielk likes this.
  3. Valentijn

    Valentijn The Diabolic Logic

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    This sounds like another dig at IOM. While there have been multiple broad definitions pre-IOM, there has only been one trivializing name for it: CFS. Hence by pluralizing "names" it would seem that SEID and it's definition are being included as "overly broad" and "trivializing".

    I'm not going to agree with, sign, or support any action which explicitly or implicitly aims to undermine the IOM report.
     
    SOC likes this.
  4. Nielk

    Nielk

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    This initiative is only for U.S. residents to reach their own congressional representatives.

    It is a chance to tell congress how you feel about the lack of funding and the need for only expert authored ME criteria and the historical name Myalgic Encephalomyelitis. We need congress to put pressure on HHS, NIH and the CDC to stop the neglect of patients, the overly broad definitions and the marginalized names.

    If you agree that this is an important message that you would like congress to hear, please take the time (about one minute) to sign and it will automatically send the letter out to your senators and congressional representatives based on your zip code.
     
  5. Denise

    Denise Senior Member

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    Question @Nielk - do you mean just for U.S. voters/citizens or all U.S. residents whether or not they are citizens/voters?




    I am wondering if @Valentijn is concerned about the statement in the letter that the sender (signer) is a support of MEAdvocacy.
    "I am writing to you as a constituent and supporter of MEadvocacy.org which represents patients suffering from the chronic, debilitating neuro-immune disease Myalgic Encephalomyelitis (ME), also known in the U.S. as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)."
     
    SOC likes this.
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    USA
    Signed, thanks.
     
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  7. Nielk

    Nielk

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    It is for anyone who is a resident of the U.S.
    Edit - this is wrong. One needs to be a voting citizen.

    By stating that one is a supporter of MEadvocacy, it just means that one agrees with the policy of MEadvocacy such as the fact that we want HHS to adopt an ME, expert authored, criteria and the name Myalgic encephalomyelitis.
    The letter states the following:

     
    Last edited: Apr 22, 2015
  8. Nielk

    Nielk

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    @Denise

    It seems like I got it wrong. One needs to be a citizen voter in order to mail their representatives.
     
  9. Denise

    Denise Senior Member

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    Thanks for clarifying.
     
    Nielk likes this.
  10. Nielk

    Nielk

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    The letter to congress campaign has been extended for another month with a new and improved letter to be sent with a 'one click" easy method that will simultaneously reach all your congressional representatives in the U.S.


    http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research

    The letter states:
    Please take the time to send this important message to Congress now by using the easy one click letter here.
     

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