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.
Discuss the article on the Forums.

Canadians needed.

Discussion in 'Action Alerts and Advocacy' started by Kati, Sep 16, 2016.

  1. Kati

    Kati Patient in training

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    #MIllionsMissing virtual protest is coming quickly. To participate and keep up to date, please join the Facebook event. Simply look up MillionsMissing Canada on your facebook search box or try this link:https://www.facebook.com/events/619297384893996/?__mref=message . Join us!

    We need the strength of numbers. We need things to change in Canada. Let's do this!

    image.jpeg
     
    Last edited: Sep 16, 2016
    Comet, Glycon, AndyPR and 4 others like this.
  2. concepcion

    concepcion Senior Member

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    [​IMG]

    Canadian ME patients, families and friends:
    This is a Call To Action.


    WHAT ARE WE DOING?
    Organising virtual AND live protests for a National Strategy for ME.

    Whether you are busy or housebound, you can help get that message to Minister Philpott by participating in Millions Missing Canada events in the coming weeks:
    1. Virtual Demonstration on Sept 27th as part of the global #MillionsMissing campaign
    1. Live Protest on October 6th at the Health Canada building in Toronto
    See below for details for both events.


    WHY ARE WE PROTESTING?
    We’re mad as hell and not going to take it any more!
    1. Reason #1 for Protest: CIHR’s Disease Denial:
    No doubt you’ve heard by now about the Canadian Institute of Health’s (CIHR) recent rejection of a grant application for ME research funds (click here for details). In their review of the grant, the CIHR reviewers claimed that there is no evidence that ME is a disease. Thanks to this, Canada is now referred to as The Dark North.

    The information that the CIHR reviewers used was so biased and out-of-date, that they failed to even mention or cite the Canadian Clinical Criteria or the Institute of Medicine’s 2015 Report. Both of these documents are the gold standard in the ME field, and both clearly and unambiguously state that ME is real, is serious, and can be devastating for patients.

    The absurdity of the CIHR reasoning, is magnified by the recent ground-breaking studyby Dr. Robert Naviaux’s which found clear evidence of hypometabolism in ME patients.

    The CIHR’s profound and unforgivable ignorance does, however, explain the severe neglect of ME patients, as illustrated by the table below:

    [​IMG]
    So, just to recap: Disease denial leads to Millions of Dollars Missing from research funding for ME patients.

    1. Reason #2 for Protest: Silence From The Hill
    Minister Philpott ignored our Millions Missing letter in May seeking a meeting. Not even an acknowledgement of the more than 400,000 Canadians suffering with ME with lack of research funding and access to appropriate testing and treatment.

    We deserve better from our healthcare system and this Minister of Health.
    We deserve an apology.
    We deserve equal research funding and access to treatment.
    We deserve a national strategy for ME.


    HOW ARE WE PROTESTING?
    Virtually AND Live


    Change starts with us, the ME community, and the power of our collective voices. We have created protest opportunities in which as many ME patients, friends and families as possible can participate.

    Millions Missing Canada volunteers are working hard to develop and roll out a public relations plan and we need your help to make our demands come to reality.
    So read these details and SHARE, SHARE, SHARE!
    ____________________________________________________________

    SEPTEMBER 27: VIRTUAL ONLINE PROTEST
    Our fully Canadian protest which is part of the Global #MillionsMissing demonstration:
    • Canadians from across the country will email Minister Philpott and other politicians at the same time on Sept 27 (11am Pacific / 2pm Eastern)
    • We will have a link available to our template letter, which will make sending your emails much easier than in May.
    To join our September 27 Virtual Protest, we need you to do 2 things today:
    1. SIGN UP for Sept 27 virtual event by either:
    2. Sending an email to MillionsMissingCanada@gmail.com, OR
    3. Registering as “going” on our Facebook event page for Round 2:https://www.facebook.com/events/619297384893996/
    1. SHARE THIS POST WIDELY and encourage family and friends to participate and share. The more people signing up, the louder our virtual voices will be heard by politicians, press and the public.
    ____________________________________________________________

    OCTOBER 6TH - LIVE PROTEST
    Downtown Toronto.

    The Live Protest:
    • WHEN: October 6, from 12 - 2pm EDT
    • WHERE: On the street at 180 Queen Street West
    • VIEW: Live stream on Facebook Live for a portion of that time.
    • RSVP: Let us know if you think you can attend.
    • SEND YOUR SHOES: If you can't make it in person, send shoes which we can use to represent you at the protest. Add a short note attached to your shoes telling us a bit about you and your shoes.
    Send shoes to –
    c/o Aleksandar Vasiljevic
    51 Stoneton Drive
    Scarborough M1H 2P6
    Ontario

    Please note, shoes will not be returned. Our plan is to hold on to them all to use
    in future protests.

    To join our October 6 Live Protest, we need you to do 2 things today:
    1. SIGN UP For October 6th event by either:
    2. sending an email to MillionsMissingCanada@gmail.com, OR
    3. Registering as “going” on our Facebook event page for Live Protest Toronto:https://www.facebook.com/events/1120173071406359/
    1. SHARE THIS POST WIDELY and encourage family and friends to participate and share. The more people signing up, the louder our virtual voices will be heard by politicians, press and the public.
    ____________________________________________________________

    Stop the harm.
    Start the research.
    Start the treatment.
     
    AndyPR, Dechi, rosie26 and 2 others like this.
  3. Kati

    Kati Patient in training

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  4. Kati

    Kati Patient in training

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  5. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    The link to the letter is only in french. Is there not an English option?
     
  6. Kati

    Kati Patient in training

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    That's weird, mine is bilingual, the first part in english, then in french
     
  7. Kati

    Kati Patient in training

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    I have many tweets in need of retweeting, if anybody is looking for quick actions (open the link, click on my name)
     
  8. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    That is strange because all I can get is the french version.
     
  9. Kati

    Kati Patient in training

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    To all Canadians and to those all around the world wishing to support us:

    There was a #MillionsMissingCanada protest today in Toronto. Look for tweets to retweet, using the hashtag, I also tweeted every 5minutes of the duration of the protest, you can view and retweet for more impact here

    @katiissick

    Example:









    There are many more and there are others tweeting too.



    https://twitter.com/notafreebird/status/784087500650319873

    https://twitter.com/brfifield/status/784091815259545605
     
    ScottTriGuy, shannah, mango and 2 others like this.
  10. Kati

    Kati Patient in training

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    More tweets, the first one being a tv journalist:









     
    ScottTriGuy, Comet and shannah like this.
  11. Kati

    Kati Patient in training

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    Some photos from the MillionsMissingCanada protest:

    Aleks and the helpful Toronto Police helping to protect our protest.
    IMG_1201.JPG IMG_1199.JPG IMG_1200.JPG IMG_1198.JPG
     
  12. Kati

    Kati Patient in training

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    ScottTriGuy and shannah like this.
  13. shannah

    shannah Senior Member

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    Great idea to ask for support from the larger community @Kati #MillionsMissing Norway and Australia were supporting us during our protest today but continued support is needed. We all benefit from it.

    @Kati did an amazing job at Tweeting today as you can see by some of her samples above. She has become a 'Tweet Master' with a fresh one coming every 5 minutes for 2 solid hours today. It is definitely worthwhile to check out her Twitter feed @katiissick

    The protest was officially from 12-2 but my feed went non stop from shortly before noon until after 4:00. I could hardly 'get a tweet in edgewise' so to speak because I was so busy retweeting and posting pictures. It was a draining yet exhilarating experience.

    Our @ScottTriGuy has written a wonderful report on the day at https://www.facebook.com/events/1120173071406359/permalink/1142256845864648/
     
  14. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    ON, Canada
    sp_1204_06.jpg
     
  15. Kati

    Kati Patient in training

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    From what I understood is they were on lockdown, in case the protests went more physical. Little do they know, we don't have much more energy than sitting there and holding a placard...
     
  16. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    ON, Canada
    What some people lack in energy they make up for in ingenuity. :smug: Or madness. :mad:
     
    ScottTriGuy likes this.
  17. Kati

    Kati Patient in training

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    From @ScottTriGuy organizator extraordinaire:

    Scott SimpsontoMillionsMissing Canada Live Toronto Protest
    3 hrs
    · Toronto, ON ·
    An absolutely wonderful experience - it was a beautiful day for a protest!! Only one minor glitch - we had a great wifi connection for the Facebook Live stream but 2 minutes before 1pm the Starbuck's free wifi became locked, grrrr - nevertheless David and Claudia did a great job recording interviews with ME specialist Dr. Alison Bested, ME researcher Will de Vega, and ME patients Jeffery Smith and Jen - there were also 2 other film makers (there names escape me!) who got some interviews and great footage they will share soon too.

    The building security guards tried to limit our space and said that if we encroached on it and refused to move we'd be arrested - I was weighing that option when the wonderful police officers intervened and told him to go check with his boss, as far as the police were concerned we had the right to protest in the space, so big shout outs to Toronto Police for their support and ensuring we weren't harassed!

    And big shout outs to all the volunteers for setting up and engaging the public - we ran out of info sheets in the first hour! People were captivated by the signs, shoes, shirts, posters, and patient profiles and willing to chat and find out more - a total success in raising public awareness.

    Thank you to all who came out to raise our voices - I hope the effort didn't take too much out of you and are spending the rest of the day practicing self-care - you deserve it!

    Perhaps the most interesting signal that we are making inroads: Health Canada knew we were coming because we got word that they were under "lock down" - evidently they were scared severely sick patients were going to knock down doors (ha!) so we must be getting their attention!

    Good job to all that were on the street and online sharing the pics and messages. None of this would have happened without your passion and efforts - thank you for making the Sick-in Protest a huge success!!!!
     
    Snowdrop, shannah, BurnA and 4 others like this.
  18. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    ON, Canada
    I couldn't have made it even if I'd tried. I tried to buy some jeans yesterday. My symptoms began to flare up about a quarter of the way to the mall, so I had to turn back. I blame the warm weather.

    I NEED TO BUY JEANS GODDAMMIT!!! :mad:
     
  19. Cheryl Benson

    Cheryl Benson

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    Ontario, Canada
    Twitter Moment: #MillionsMissingCanada, Health Canada Toronto Protest #pwme #MyaglicE
    [​IMG]Cheryl Benson@cherylbenson October 8, 2016
    #MyaglicEncephlamyities & #CFS sufferers protest for funding, research and treatments Oct 6, 2016 & worldwide Sept 27, 2016 from their beds & few who could be there. Shoes represent house confined. Check #millionsmissing & #millionsmissingcanada


    https://twitter.com/i/moments/784477942277476352
     
  20. Kati

    Kati Patient in training

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    Well done Cheryl! I retweeted a few today.
     

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