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#MillionsMissing Canadian Press Request

Discussion in 'Action Alerts and Advocacy' started by Old Bones, May 23, 2016.

  1. Old Bones

    Old Bones Senior Member

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    The following is the text of an email I sent to various Canadian news media outlets (Metro News - all individual city sites, PostMedia, The Globe and Mail (including their health reporter and columnist, Andre Picard):

    "ME/CFS - Canadian #MillionsMissing Event - Please provide news coverage

    Recently, the federal government has made several announcements to report the commitment of hundreds of millions of Canadian taxpayer dollars to support the medical needs of people around the globe. Meanwhile, Canadian Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients have been neglected by Health Canada and the Canadian medical system for decades.

    ME/CFS is a complex, acquired, organic, multi-systemic disease that is classified by the World Health Organization as neurological. Canadian patients will be participating in an awareness campaign by means of a virtual protest on May 25, 2016 as described on the following website:

    http://millionsmissing.meaction.net/locations/canada-virtual/

    Regrettably, this illness is seldom reported on in the Canadian news media. (The most recent column I recall from a mainstream Canadian newspaper was yours entitled "Time to take chronic fatigue seriously" dated February 17, 2015 -- Andre Picard only).

    Perhaps you would be willing to provide coverage of the #MillionsMissing event.

    Thank you for your consideration."


    Any other suggestions on where this email could be sent?

    Edited to include additional recipients:

    Pamela Fayerman, Vancouver Sun (thanks, @Kati )
    Elizabeth Payne, Ottawa Citizen (thanks, @ScottTriGuy )
    Tom Blackwell, National Post - Health care reporter
    Jake Kivanc - Vice media (thanks, @ScottTriGuy )
    Huffington Post (thanks, @Kati )
    CBC - The National
    CTV - five email addresses (including Medical Report)
    Global National (plus all local/regional stations)
     
    Last edited: May 23, 2016
  2. Kati

    Kati Patient in training

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    Pamela Fayerman, Vancouver Sun
     
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  4. Kati

    Kati Patient in training

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    concepcion, ahimsa and Old Bones like this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    panckage, concepcion and Old Bones like this.
  6. Kati

    Kati Patient in training

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    One more: the Canadian Press, @cdnpress on twitter
     
    concepcion likes this.
  7. Kati

    Kati Patient in training

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    Huff Post Canada
     
    concepcion likes this.
  8. Old Bones

    Old Bones Senior Member

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    @Kati I have absolutely no experience with twitter, nor do I wish to get involved with it. I tried the email address on the Canadian Press website, but received an error message that the address isn't valid.
     
    concepcion likes this.
  9. Kati

    Kati Patient in training

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    Perhaps you-or someone else could post something for Canada on ME action and I can take care of all of these journalists / news outlets on twitter - I just need a link to a page.
     
    concepcion likes this.
  10. concepcion

    concepcion Senior Member

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    FYI, the organizers of the Canadian #MillionsMissing have created/maintained the following on #MEAction:
    http://millionsmissing.meaction.net/locations/canada-virtual/

    on Facebook:
    https://www.facebook.com/events/242819009412913/

    and will be sending out an official press release tonight and tomorrow to a large number of reporters, news agencies, bloggers. We've added a couple we didn't have which were posted here, and welcome more.

    It's great that everyone who feels up to it also pressures the media to cover the story.
     
    Sasha, JaimeS, AndyPandy and 3 others like this.
  11. JaimeS

    JaimeS Senior Member

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    @Old Bones , thank you so much for amplifying the voice! It's really hard to get press to pay attention, so if they get it from multiple voices it's more likely to make a difference.

    For anyone else who feels like trying this out, we were given one piece of very good advice:

    "Disability stories" aren't sexy. "Injustice stories" are VERY sexy.

    Paraphrasing, of course.

    Focus on the social injustice, and the press's ears are most likely to perk up.

    -J
     
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  12. JaimeS

    JaimeS Senior Member

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    Disappointed. So far as I can see, no Canadian press has covered this, still. For shame!

    Rivka mentioned that personal essays can be sent at any time. Maybe someone could tell their illness story like Rivka has done in brief, and then add information about the protest to send to Canadian journalists. There is no time limit on this, and since it's a 'human interest story', it may gain more traction.

    Rivka's story was picked up by three national publications, one after the other, so it's a good template / how-to:

    Tethered to my bed, I'm still fighting the stigma around "chronic fatigue", STAT, a national publication of Boston Globe Media

    Also picked up by The Week, entitled, I got mono in college. Decades later, I still haven't recovered.

    Also picked up by Business Insider, entitled, A disease that causes debilitating exhaustion affects more than a million Americans, and no one's addressing it

    Jaime
     
  13. Old Bones

    Old Bones Senior Member

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    @JaimeS For shame, indeed! I, too, have looked, and found nothing. I guess ME is just not news-worthy compared with the terminal brain cancer diagnosis of a member of one of Canada's best-known rock bands -- a story that captured the media's attention last week.

    The timing of #MillionsMissing was also unfortunate for Canadians in another way. Our Members of Parliament (MPs) were not sitting in the House of Commons the entire week of May 23 - 27. Perhaps many of them chose to go on vacation. I'd like to think this explains why I got such a poor response to my protest emails -- only three of 18 recipients acknowledged (two automated, one personal from the Constituency Advocate in my MP's office). Not one of the provincial contacts acknowledged. They had no excuse, since the legislature was sitting last week.
     
    Justin30, Chezboo, concepcion and 2 others like this.
  14. JaimeS

    JaimeS Senior Member

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    I hope that the next protest will be more in line in terms of good timing. Keep your ears open, we've started discussing the next one!

    Jaime
     
    Justin30, ScottTriGuy and Sasha like this.
  15. Kati

    Kati Patient in training

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    We are facing disdain, sigma and misinformation. The health minister mandate is to support evidence-based medicine, and if you look at the evidence, it's CBT & GET that comes first and foremost on Cochrane review. It's been like that for decades, why would the government choose to fund research for a disease that is not in dr's or researchers' priorities, when there are diseases/risk factors that are supposedly more deserving than us, like poverty, addiction, health on indian reserves, HIV, Zika, concussions in sport, and yes, brain tumors with the renewed interest now that a canadian celebrity has it and now that a physician publicly asked for more research for brain tumors?

    I suggest that now is the time to continue campaigning, perhaps with each one of us requesting visits with our MP and MLA. Perhaps with an in-person MillionsMissing in all cities across Canada. Perhaps sending our shoes to the health minister. (Say the health minister receives 300 pairs of shoes? )
     
    Last edited: May 30, 2016
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  16. JaimeS

    JaimeS Senior Member

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    We WILL keep fighting. And that is a very powerful idea, @Kati ! That's definitely something you should discuss with the Canada group. The email campaign was a brilliant idea, and incredibly successful, but as a few Canadians mentioned on our wrap-up call, maybe it needs to be more visual next time.

    That certainly is very visual!

    I wonder about the fact, however, that it's not visible in the public sphere. I'd want it to be somewhere the average person will see it, IMO. Not speaking for #MEAction, just my 2 cents.

    -J
     
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  17. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Justin30 and shannah like this.
  18. JaimeS

    JaimeS Senior Member

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    ....maybe. But I would be worried about nuance. We would be saying that we need the same devotion to funding as other illnesses with similar disease burden... but others might be hearing or feeling a kind of competitive vibe.

    It's a great opportunity for exposure, but I'd think about it very carefully as a group!

    -J
     
  19. Kati

    Kati Patient in training

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    I think you have a great idea: medical conferences. That particular one is huge and will attract people from all over the world but people who already are busy and well funded in other diseases. I would be afraid not much impact but I am absolutely ready to be wrong! I am not sure if it would impact Canada so much and I suspect that security would be heightened.
     
    JaimeS likes this.
  20. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Not sure what you mean? That global HIV activists would be pissed at ME activists?
     

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