The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Canadian advocacy (may be useful for other countries too) 1MP at a time

Discussion in 'Millions Missing Campaign' started by Kati, Jun 17, 2016.

  1. Kati

    Kati Patient in training

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    Hi,

    i wanted to share that I met my MP today (member of parliament) to talk about the needs of 411,000 of patients with ME. I had a presentation which we reviewed together, and we discussed how he could help. He wll discuss this issue with his party's health critic.

    You can view the presentation here. (The presentation format was optimized for ipad, better than what you see on this link)


    All Canadians can request a meeting with their MP and in fact it would be helpful if everyone did. MIne belongs to the opposition. It can be useful but members of the Liberal party should be briefed too.

    I give permission for people to use my slides, and to amend them, delete and add as desired.

    It is time Canada gets involved in efforts to find cause, biomarkers, and treatments for this illness.

    Let's keep the momentum going.

    P.S. I used photos available in the public domaine (other than my own). @ballard your cartoon on slide 2 was most useful in showing the current state of affairs. Thank you so much, and keep on drawing!
    For those who worry about the tombstone photo, I receved permission from Charmaine's husband to use it, and he said this is what she would have wanted. It was another powerful one.
     
    Last edited: Jun 17, 2016
  2. duncan

    duncan Senior Member

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    You met with your MP...I think that is inspiring. Well done.

    My brain would have froze solid.

    How long did it last? How did it go? (my computer can't read your presentation)

    I would have had to have it all on note cards. I could not have winged anything. My brain would not have cooperated.

    So, serious kudos!
     
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  3. Kati

    Kati Patient in training

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    My presentation above is how I got things started. Carefully preparing the presentation was all i needed to do. I also had a few people reviewing it with me for edit and making it stronger and I am very thankful for these people.

    I told him that due to my cognitive dysfunction I needed to refer to that, so I gave him my ipad for his to see the slide and I also had a paper copy for me to read from my side. It lasted 30 minutes. He asked very pertinent questions. He was very compassionate and made sure I could return to my car safely!

    It was truly the best case scenario, but man will I ever pay for this. My current functioning is very slim, maybe 22-23 hours in bed these days. Talking is a great effort, and causes a crash. Especially when I need to be intelligent and coherent.

    Again, if we want out of where we are now, we need to reach out, wherever you are.
     
  4. shannah

    shannah Senior Member

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    @Kati

    Wonderful! Congrats! I'm not sure I can access your entire presentation but the first few slides look good. I hope that it's alright to say that I recognize @Justin30 's Mom and Dad in Seattle there with Scott's slogan.

    I agree we need to keep the momentum that we've managed to generate over the last couple of months going. I would encourage ALL Canadians to follow Kati's example and reach out to their parliamentarians in whatever way they are able. More and more these politicians are at least coming to recognize the name Myalgic Encephalomyelitis.

    I reached out during April and May in letters and emails and am thinking on what further I can do this month. I'm mostly bedbound and speak very little so it has to be via the methods I mentioned.

    There are a number of big issues to be tackled but the lack of available treatments are a source of irritation with me right now. It's just plain not fair that some have access to them and others don't. Treatments that others are getting should be available as an option to ALL!
     
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  5. Kati

    Kati Patient in training

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    Hi Shannah, Great comments, thank you so much!

    I also don't talk a lot and this meeting took every ounce of me, as talking causes crashes and i have a bad headache now. But this was a golden opportunity, I believe the staffers reached out to me after I sent them the millions missing email (which I discovered I did not send them the carefully prepared poster due to cognitive troubles on protest day)

    I focused a lot on the stigma, on the fact that physicians were biased, that we didn't belong in a medical specialty,, which causes problem, that we deserve funding for research and compassionate access to off-label drugs. I also ask for a national strategy.

    Things will not happen in a few hours, but our voice will become stronger and stronger.

    Emailing your MP can also be very powerful. Oftentimes you deal with staffers but that's ok too because all it takes is one compelling human experience.

    There might be plans for using this presentation as a base for others to use for their MP's. Stay tune.
     
  6. mango

    mango Senior Member

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    @Kati, you're an absolute superhero! this is amazing beyond words,... wow... just, wow... super inspiring and amazing on so many levels. brilliant brilliant job, well done! :thumbsup: :hug:
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member

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  8. Kati

    Kati Patient in training

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    Thank you @mango and @Tom Kindlon
    It was well worth it.

    I have thanked him on twitter, if people wouldn't mind liking and retweeting, my twitter account is @katiissick. Sometimes it goes a long way to give social recognition, you know?
     
    Last edited: Jun 17, 2016
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  9. Vasha

    Vasha Senior Member

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    @Kati - this is a terrifically informative and effective presentation! Really well done indeed. Thank you so much from those of us who are not Canadians too!

    Sending you all best wishes for as soft a landing and rapid a recovery as possible after this huge effort.

    Vasha
     
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  10. panckage

    panckage Senior Member

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    @Kati thanks so much for leading the way and posting the slides for us. I'm happy you shared how the meeting went and I hope I will be able to do the same with my own local MP :hug:
     
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  11. helen1

    helen1 Senior Member

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    I'm inspired, too @Kati. I will look into doing the same. Thanks for the huge effort and hope you're recovering...
     
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  12. Kati

    Kati Patient in training

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    Pretty banged up but all worthy.
     
  13. Comet

    Comet I'm Not Imaginary

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    Wow! What a fabulous presentation. You are very brave to have arranged this. Congrats! :star: :star: :star:

    Hope your health doesn't suffer too badly. :ill:. Please take extra care with yourself - you deserve it!
     
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  14. BurnA

    BurnA Senior Member

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    @Kati amazing work !
     
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  15. Gemini

    Gemini Senior Member

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    "Excellent" presentation @Kati!

    Clear, concise, covers all bases. It says it all.

    Thank you for your outstanding advocacy!
     
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  16. Kati

    Kati Patient in training

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  17. meadowlark

    meadowlark Senior Member

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    My MP is the Minister of Finance, which rather discourages me when I think of getting any time with him, but you have inspired me, Kati.
     
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  18. Kati

    Kati Patient in training

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    @meadowlark you never know who will take our concerns seriously. Do you remember Trudeau telling each of his MP to serve their constituents because they are the ones voting them in power?
     
  19. meadowlark

    meadowlark Senior Member

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    Point taken, Kati!
     
  20. ballard

    ballard Senior Member

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    @Kati Thanks so much for your wonderful presentation and your advocacy. I am happy that you could use one of my cartoons to make a point. And yes, I plan to keep on drawing until there is a cure!

    There is a new cartoon on my website honoring @RivkaRivka (pioneering protester) and all of the people who made the #MillionsMissing campaign such an amazing, uplifting success.
     
    Last edited: Jun 21, 2016
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