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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Things are heating up in Canada!

Discussion in 'Action Alerts and Advocacy' started by Kati, Jan 14, 2017.

  1. Kati

    Kati Patient in training

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    Thanks to @ScottTriGuy and a group of patients and supporters, Dr Phillpott, our health minister has agreed to meet with Scott after some persuasion.

    Here is an article, please share widely on social media. http://m.yorkregion.com/news-story/...lth-minister-jane-philpott-s-event-in-markham

    Television network CTV was on scene and it sounds like there will be a newsclip later tonight


    Stay tune for more. It is time Canada does its share of the work and starts caring for all diseases, not the most popular ones.

    Here is how it happened:



    ME patients, family and friends met at Tim Horton's to pass out t-shirts and go over our plan. CTV News was already on site and interviewed Jeff and Scott prior to the ‘Meet and Greet’. They put microphones on both so they could hear their conversation with Minister Philpott.

    After waiting in a receiving line and greeting Minister Philpott, we asked her to:

    - commit to a public announcement in the very near future that ME is biological and not psychological
    - ensure that physicians start using the CCC
    - commit to developing a National Strategy

    We explained that these small gestures would have a profound effect on the lives of those with ME. Her assistant Julie tried to move her on to the next person.

    Minister Philpott said she receives a lot of requests for National Strategies every week. She would not commit to a public announcement that ME is biological.


    After speaking with Minister Philpott in the receiving line, the group decided that her response was not nearly good enough and so these brave souls all gathered behind Minister Philpott to start a protest.

    As you can see from the photo, Scott stood on a chair and began speaking very loudly!

    After a few minutes, Minister Philpott agreed to meet after the event was over to talk further. While waiting patiently and respectfully, the group made good use of the time by chatting with people, passing out flyers and increasing awareness of ME.

    At the end of the day, Minister Philpott agreed to a meeting in Ottawa with Scott and her assistant will contact him to set up this meeting.

    Yay!!!

    So to Minister Jane Philpott we say,

    "Thank you Minister Philpott for meeting with ME patients, listening to our concerns, and inviting us to meet with you in Ottawa!"



    Narrative by @ScottTriGuy and Jeffery Smith
     
    Last edited: Jan 14, 2017
  2. shannah

    shannah Senior Member

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    Three Cheers for @ScottTriGuy !
    Three Cheers for the team at Millions Missing Canada!
     
    Marky90, merylg, Binkie4 and 26 others like this.
  3. Kati

    Kati Patient in training

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    I think it is outrageous that dr Philpott could not say that ME is biological in origin, but it is also quite telling .
     
    Marky90, Izola, merylg and 20 others like this.
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I think we need to start calling you ShoutingChairGuy! You made me laugh with that move! Really, way to go!
     
    Marky90, merylg, Riley and 18 others like this.
  7. Kati

    Kati Patient in training

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    Great strategy. Well done @ScottTriGuy you may just have written history.
     
    merylg, Binkie4, meadowlark and 16 others like this.
  8. Comet

    Comet I'm Not Imaginary

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    This was so brave of you @ScottTriGuy! Big thanks to all of you! :angel:
     
    merylg, Binkie4, Mary and 12 others like this.
  9. Cohen2

    Cohen2 Senior Member

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    merylg, Binkie4, meadowlark and 17 others like this.
  10. concepcion

    concepcion Senior Member

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    Agreed! It was appalling.
     
    merylg, meadowlark, perrier and 7 others like this.
  11. Helen

    Helen Senior Member

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    @ScottTriGuy , thanks.

    I think the Canadian research by Wilfred de Vega et.al. is very interesting.
    https://www.researchgate.net/public...ions_Associated_with_Chronic_Fatigue_Syndrome

    He presented their latest research at the IAMECFS conference in October, 2016, although not yet published.
    http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Agenda/Professional-Agenda.aspx

    Epigenetic modifications and glucocorticoid sensitivity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
    Wilfred de Vega, Ph.D. Can.
    University of Toronto

    Hopefully this group can get more money thanks to your initiative.
     
    Chris, merylg, actup and 8 others like this.
  12. TiredSam

    TiredSam The wise nematode hibernates

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  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Indeed. Will gave us an interview at our October Sick-in. He asked us not to publish the video interview until after his paper had been accepted and published in a journal (can't remember which journal he'd submitted to) but I can share that his recent epigenetic findings discerned 2 subgroups in his (female?) ME samples and are mutually validating with Naviaux's.
     
    Marky90, merylg, dangermouse and 36 others like this.
  14. Dechi

    Dechi Senior Member

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    Thank you @ScottTriGuy for being so persuasive and determined and managing to get Minister Philpott's attention ! Not an easy task as she must be very in demand. Also, there is no way she could have agreed to commit about anything regarding the disease, in my view, before validating with her experts on the matter. Now that she is meeting you, hopefully she will have done her homework before hand and she will be more open.

    This is all great news !
     
    merylg, Binkie4, L'engle and 14 others like this.
  15. Old Bones

    Old Bones Senior Member

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    It may also be telling that although the news reporters referred to ME as an "illness" and a "disease", Philpott referred only to the group's "concerns". Her statement, in my opinion, was typical of the generic political response many Canadians are getting from this federal government -- lots of comforting words, but without saying very much about each cause.

    But way to go, @ScottTriGuy . Thanks for your advocacy on behalf of ME. I'm looking forward to hearing about your long-overdue meeting with Philpott.
     
    Marky90, merylg, Binkie4 and 16 others like this.
  16. Chris

    Chris Senior Member

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    @Scott, and all those who helped or participated--great job well done! Will be very interested to follow what happens now; seems the relevant head of the dept. into which we have been deposited in the CIMR has been converted--if now you guys can convert the Minister, things should begin to slowly improve... congratulations again!
     
    merylg, actup, Cohen2 and 9 others like this.
  17. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for all the kind and encouraging words, they really are for the folks who were (just) well enough to attend, and for the ME patients too severely ill to come but contributed significantly online from their homes.

    I just feel fortunate to be functional enough currently to take on the loud mouth role.
     
    Marky90, Somer, Izola and 34 others like this.
  18. Molly98

    Molly98 Senior Member

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    Brilliant work our Canadian comrades
    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:
     
    merylg, Binkie4, shannah and 10 others like this.
  19. slysaint

    slysaint Senior Member

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    why did the news people refer to ME as a 'mysterious disease'............it's been around long enough!
    idiots
     
    Marky90, merylg, *GG* and 5 others like this.
  20. Ben Howell

    Ben Howell OMF Correspondent

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    Amazing job guys. Way to say no to the bullshit and stand up for the cause. Thanks to @ScottTriGuy and all the supporters that went.


    B
     
    Marky90, merylg, Binkie4 and 10 others like this.

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