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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Speak Up About ME, INVISIBLE NO MORE! Young People with ME/CFS

Discussion in 'Action Alerts and Advocacy' started by *GG*, Mar 21, 2011.

  1. *GG*

    *GG* Senior Member

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    Concord, NH
    It is time to YANK (not tug) the nation's heartstrings.

    Young People with ME/CFS -- JOIN US in Speaking Up About ME!


    How will we yank people's heartstrings?
    Through the attendance of a record number of young people and their families at the 2011 Chronic Fatigue Syndrome Advisory Committee meeting (CFSAC) in Washington D.C. Date coming soon!

    Historically, few young people have attended this event. Speak Up About ME will change that, as those who became sick as children or in their teens proclaim themselves to be INVISIBLE NO MORE!

    Parents, guardians, and representatives from organizations supporting this project will accompany the young patients who go to Washington.

    The project will also represent young patients who cannot attend due to health, finances or the distance of the travel by delivering their testimonials via video, telephone, e-mails and letters.

    Speak Up About ME T-Shirts, Young Patient Luncheon
    All of the young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle.

    In addition, each shirt will be customized with a slogan that shows how much of the patient's life has already been ruined by the illness. (For example, my son Matthew's shirt will announce "sick 6 of 18 years.")

    As well as attending the meeting, young people who come to Washington will get together for lunch. This will be a great opportunity to meet and bond with other patients.

    Congressional Visit & Thank You for Remembering ME "Trading Cards
    In addition, as many of the group as possible will visit their congressmen/women and senators, taking taxis to minimize loss of energy. The cost of the cards, taxis and lunch is being covered by donors.

    They will also hand out cards to their elected representatives. These will resemble trading cards, with the young persons name and photo on the front, along with the phrase "Thank You for Remembering ME." ME, of course, will refer not only to the patient but to Myalgic Encephalomyelitis. The back of the card will have bullet points about ME/CFS, including its negative economic impact.

    Through these actions, Speak Up About ME will highlight the faces of young people with ME/CFS and encourage more funding for biomedical ME/CFS research.

    Contact information:
    The young patients and their families can contact me, Denise Lopez-Majano, mother of two teens with ME/CFS who are SICK of being sick and tired. To use the contact form, click here or send email to SpeakUpAboutME@gmail.com.

    http://www.speakupaboutme.org/

    Donations link (can be found on Home page):

    http://www.speakupaboutme.org/donations
     
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    I think this is a good idea, and I donated a few dollars. Please donate what you can, I know not everyone will be able, so do not worry!

    GG
     
  3. Marty

    Marty Senior Member

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    I think this is the best idea to hit the CFSAC in years! I hope every one of those kids meet the CDC reps personally and shake hands with their virally-infected little hands. I've contributed money and forwarded the link to other sources. It's a tough project, with kids sick or in school and parents working, but it is well thought out and it would surely provide a startle response at CFSAC - particularly CDC - and it would be a great experience for the kids. Yes, they would pay, but that is what life is like for us; we could sit comfortably on the forums or we could Act Up and pay the price. I'm rooting for you, Denise.
     
  4. Denise

    Denise Senior Member

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    Hi and THANK YOU!
    I cannot put into words how moved I am by your support ggingues and Marty.
    Young people with ME/CFS are the next wave of ME/CFS advocates. One of the goals of Speak Up About ME is to empower them and perhaps give them an additional sense of purpose.
    Thank you very much for the support, for the kind words, for rooting for me.
    Please be sure to root for each of the young people who participate (in person or at a distance).
     
  5. Dolphin

    Dolphin Senior Member

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    I'm old enough to remember when Rebecca Moore used to lead a lot of CAA campaigns - during the time she was in school (or of school age) and/or in college.
    The CAA used to (in the 1990s) have a youth group, CFIDS Youth Alliance, and they had their own magazine. They used to collect photos to use in lobbying. Seeing young people with the illness has the power to move people.
    Best of luck.
     
  6. Denise

    Denise Senior Member

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    I was really glad to be able to speak with Rebecca last fall. I learned alot about the CFIDS Youth Alliance among other things.
    It was a great conversation.


    Speak Up About ME, Invisible No More! - Let's Make This HAPPEN!
     
  7. *GG*

    *GG* Senior Member

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    Concord, NH
    Not a problem, I hope putting a (young) face to this disease, will help all of us!

    If you could keep us updated on the funding need, it would be appreciated, perhaps I could donate a little more in the near future!

    GG
     
  8. Denise

    Denise Senior Member

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    I too, hope that putting young faces to ME/CFS will help the entire ME/CFS community!
    As you can imagine, every project can use more funding. That said, I know that the majority of the ME/CFS community is short on funds themselves.
    Please donate ONLY if you are able to do so.
    We have many ideas, but also realize that we won't be able to put all of them into effect on May 11th because of time and funding constraints.
    Could this mean that Speak Up About ME will have to have an encore in October? We shall see.. ....
    Again, many thanks for moral support - as well as financial.
    Denise
     

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