1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Please sign this petition!

Discussion in 'Petitions' started by Kati, Feb 21, 2012.

  1. Kati

    Kati Patient in training

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    i am bumping this thread up with an update.

    We are nearing 1450 signatures and at least a hundred of personal comments. I am pleased and thankful for each and every signature we have so far.
    There is still time for you to participate if you haven't signed yet. You so not have to give your full address but city and postal code are sufficient.
    You may choose to not have your name showing up on the list.
    You do not have to be canadian to sign.
    Share widely!

    Thanks!
     
  2. Clodomir

    Clodomir In hibernation mood

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    Belgium
    Done

    Have a good day


    Clodomir
     
    Kati likes this.
  3. Kati

    Kati Patient in training

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    Thx! And you too!
     
  4. K2 for Hope

    K2 for Hope ALways Hoping

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    I just signed. I assume we still have "the goal is 5000 signature by May 12th! "

    Thanks Kati.
     
  5. Kati

    Kati Patient in training

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    Hi K-2 for hope, each signture is a bonus for me. I do not expect to reach 5000 but it would be nice. It could still happen if each people who signed fanned it out to their contacts.

    Thank you so much for signing.

    Kati
     
  6. Ember

    Ember Senior Member

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    Time to remove stigma

    By David Mann, The Ottawa Citizen May 1, 2012

    http://www.ottawacitizen.com/health/Time remove stigma/6544422/story.html

     
  7. elbosque

    elbosque

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    I am doing a push on the petition with friends and family as well as spamming my Facebook with articles on FM, ME / CFS. Also posted it on Dr Hyam's Facebook page. But now noticed that someone else had already done it. I still don't understand why there are so few signatures with so many people impacted by this illness???
     
  8. Kati

    Kati Patient in training

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    elbosque, i a totally happy for each and everyone who hae signed this petition. It is making noise around and the silence from Mrs Aglukkaq and Health Canada is deafening.

    Add that with advocacy demonstration in Ottawa later this week, an advocacy letter I have sent along with a few paper midFebruary, social media advocacy aimed at canadian politicians, the heath minister, the canadian doctors, and I have just been interviewed for a canadian radio show called DisRespect, promoted the petition, things are happening.

    The change may not happen tomorrow, but I believe we are making strides. We need to be consistent and keep on asking questions- for instance why is ME not mention in their 100 million $ Brain research fund announcement?

    Please introduce yourself to your MLA. tell him/her what's important to you, and why. Tell them about the burden to the government and how neglected this disease is- and how this could bea mtter of human rights.

    And yes, I will take more signtures, please!!! But most importantly, thank you.
     
  9. peggy-sue

    peggy-sue

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    It won't let me sign because I'm not in the states.
     
  10. Kati

    Kati Patient in training

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  11. peggy-sue

    peggy-sue

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    We're a one pc couple - (and it runs on steam. )
    We have not progressed to laptops or mobile phoney things.

    I tried clicking on the "outside the US" button after I'd entered my info, and all my info vanished.
    So I tried it the other way round, but it wouldn't let me put my info in.

    I'm even already signed up to change.org - have been for years!
     
  12. Patrick*

    Patrick* Formerly PWCalvin

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    California
    Done.
     
    Kati likes this.
  13. elbosque

    elbosque

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    I've just done another Facebook push on this Kati proceeded by posting the stories of the deaths of Emily Collingridge and Patrick Kelly in the US. Too many people just think ME/CFS is you are just a bit more tired. I don't know how many times people have told me that they feel tired too. It makes it even more aggravating that many doctors don't have a clue about ME/CFS.

    If people want to post the same stories I used to wake up your firends and family on Facebook, here are the links. I think it is what these two victims of ME/CFS would hope for us to do.

    http://www.guardian.co.uk/commentis...-fatigue-syndrome?fb=native&CMP=FBCNETTXT9038

    http://phoenixrising.me/archives/9932
     
  14. Kati

    Kati Patient in training

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    Thank you Elbosque. I really appreciate that. We are very invisible in Canada, and rare are the opportunities to be heard as patients. Every little effort counts in changing people's perception of our illness.

    Today in the House of Commons (Canada), a MP who also happens to be a MD spoke about ME Awareness day. She had only 1 minute to do so, and it was not perfect, but it was something. (Still I hate to be mentioned in the same sentence as "chronic tiredness")

    We need everyone to get onto social media, beyond our closed groups- and participate in general discussions- and how it applies to our illness. A good example of this is Twitter with Tweet Chats, and ReTweeting others' tweets. Facebook government groups are also a great example. Tell the CDC, HHS, Health Canada, etc how neglected our disease is- when given the opportunity.

    That's my take.
     
  15. Ember

    Ember Senior Member

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  16. K2 for Hope

    K2 for Hope ALways Hoping

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    I just posted again to my FB page and had a signature within 7 seconds...:thumbsup:
     
    Kati likes this.
  17. Sasha

    Sasha Fine, thank you

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    Thanks, Kati. Done.
     
    Kati likes this.
  18. elbosque

    elbosque

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    People might try adding a link to a short video that clearly and quickly explains what is ME/CFS. This video done by ME/CFS suffers is excellent for that.

     

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