The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Outcome of Meeting in Ottawa to Discuss the ME Crisis in Canada: March 23, 2017

Discussion in 'Action Alerts and Advocacy' started by shannah, Mar 24, 2017.

  1. shannah

    shannah Senior Member

    A Productive, Successful & Memorable Meeting in Ottawa: March 23, 2017
    As Narrated by the One and Only Scott Simpson

    The day started with a bit of a hiccup: MP Nathaniel Erskine-Smith had an opportunity to speak in the House about yesterday's federal budget - that was scheduled for 11:15 and our meeting was at 11:30 - in spite of still writing his speech, Nate gave us some time at 10:30 to plan for the meeting.

    Then Elizabeth, Jeff and I, with David the filmmaker in tow, headed to meet with the Health Ministry folks. Nate's assistant Alexis also arrived to support us in the meeting. Then, half way through the meeting, Nate came in for 2 minutes to share his thoughts about the need for research funding and reaching out to Ron Davis.

    Incredibly, Nate left the House, came rushing over for our meeting and then rushed back for a parliamentary vote. I cannot fully express how impressed I was by Nate's commitment to support the ME community as his actions attest. Thank you Nate!

    The meeting itself went very well: We knew we were meeting with Caroline Pitfield, Policy Director, and Ashleigh White, Special Assistant, but they had also invited Marilyn Desrosiers, Manager from CIHR, a positive sign. They also mentioned that Minister Philpott was planning on dropping into the meeting - another positive sign - but she had to go for the same vote that drew Nate away.

    Elizabeth, Jeff and I quickly shared our experiences with ME and the health care system before unpacking the lack of testing / treatment and lack of research funding, as well as the collaborative research opportunities.

    We made clear that the three challenges facing our community were finding ways to stop the harm of contraindicated treatment and health care system-induced PTSD; start the equitable research funding; and start the access to testing / treatment and we used Rituximab and Ampligen as examples. They were genuinely interested in our compelling narratives, as well as the recent ME research and in spite of their packed schedule, they allowed our meeting to run over time.

    The next step is to follow up with our new CIHR contact to determine a meeting date soon after March 30, when the decisions about the two ME grants will be released.

    We all left the meeting feeling better about the future of ME in Canada. Still lots and lots of work to be done, but this was a very good first step forward.

    We then quickly drove to record an interview with a ME patient for the documentary, and then rushed to the airport to just barely make it onto the flight. Whew!

    Big thanks to:

    - Jeff for sacrificing his health to make it to this crucial meeting and importantly sharing his 20 years of living with ME,

    - and to Elizabeth for flying across the country and speaking so passionately and convincingly

    - and to David for donating his time and talent to record this event, and all the other ME activism and patient interviews he's done in the last 9 months

    - and to Barb for all the incredible work she does behind the scenes that so few know about, and on social media with the team of Jill, Brent, Jasmine, Sue, Larissa and Hélène that keeps our community engaged so that our collective voices can be heard.

    These are our community’s often hidden heroes. It is my pleasure and honour to work with such talented, passionate and committed people.

    And an extra large thank you to the ME community - your well wishes and supportive comments help keep us going, pushing, striving for what we all deserve: equitable health care.

    Scott Simpson, Elizabeth Sanchez, Barbara Fifield, Jeffery Smith, Hélène Côté, Jill Thompson, Brent Forman, Jasmine Sanchez Ziller, Sue Armstrong, Larissa Fan, film maker David Cruz Pedraza, and Allison Haynes May, ME patient.

    Nathaniel Erskine-Smith, Alexis Bouchard, Jane Philpott, Carolyn Pitfield, Ashleigh White and Marilyn Derosiers.

    Last edited: Mar 24, 2017
    TiredSam, Dechi, Alvin2 and 36 others like this.
  2. ahimsa

    ahimsa Rarely on PR now

    Thanks for posting the update! And thanks to everyone who participated!

    I hope it leads to some results. :)
    Comet, *GG*, ScottTriGuy and 3 others like this.
  3. shannah

    shannah Senior Member

    Elizabeth Sanchez is a tenacious advocate for the ME cause - a no-nonsense, committed and tireless worker whose own life has very much been put on hold by the severe affect that ME has had on her daughter.

    This is Elizabeth's detailed account of the day in Ottawa. Thank you Elizabeth for your dedication that helps each one of us with ME!

    by Elizabeth Sanchez

    As I was flying from Vancouver across this vast and frigid country on Wednesday, heading towards Ottawa, I was thinking, in between chapters of "War and Peace", about the meeting scheduled for Thursday with the Ministry of Health (MOH). Scott Simpson, Jeffery Smith, Barbara Fifield and I had spent a lot of time planning, plotting and preparing for this meeting. We sought advice from experts; researched, wrote and re-wrote and re-wrote our Briefing Notes. We did all this while trying to put ourselves in the shoes of the civil servants in whose hands the future for our community rests. The same civil servants who are bombarded with requests from Canadians, from people like us who feel underserved, who feel their needs are critical yet unmet. We debated how to distinguish ourselves. (Well, that’s obvious, we are TOTALLY neglected!)

    But the main question for us was about expectations: what is a realistic expectation for a half hour meeting with these folks? How do we set things up for success, push as hard as we can without pushing them off-side? How do we get what our community desperately needs?

    While waiting for the overpriced, flavourless food to be served on the plane, I was thinking, wouldn’t it be great for the meeting to end by being given a commitment for the tens of millions of dollars that are missing from research? This was an unrealistic expectation, I know. Then I thought, what if the Ministry simply agreed to a meeting to shut us up, with no intention to do anything at all? Imagine all this effort, all this air travel for that?

    These thoughts kept flirting with me while I settled, quite late, into a cosy, kitsch, very friendly B&B in the lively French Byward Market area of Ottawa. Walking around, looking for something to eat, it was sooooooo cold!!

    Come Wednesday, there was hardly time to think, let alone time to worry. We had a packed schedule, thanks to the very ambitious Scott Simpson. I drove to the airport for 9.30 to pick up Jeff, Scott, and filmmaker David Cruz Pedraza, who has been documenting Millions Missing Canada since September. I was in awe of my guys, Jeff and Scott, both sick, but fiercely committed. Jeff in particular was pushing himself for this meeting, not really well enough to travel, but determined to represent the community.

    From the airport we raced to Parliament Hill for a 10.30 appointment to film an interview with Liberal MP, Nathaniel Erskine-Smith, who was to join us in the meeting. The interview went well, but as luck would have it, Nathaniel was tasked with speaking to the budget in Parliament just before our meeting with MOH. As he would be running very late, he lent us his Legislative Assistant, Alexis.

    We had an hour to film Nathaniel and make it to our main meeting for 11.30, a 12 minute drive away. My Google research did not indicate that it is next to impossible to find parking near the office where our meeting was to take place! Let’s just say luck was on our side and we didn’t get towed.

    Caroline Pitfield, Policy Director for Jane Philpott, and Ashleigh White, Special Assistant, gave us a very warm welcome. Any doubts we had about their taking the meeting seriously were put to bed when we were introduced to Marilyn Desrosiers, Manager Business Development and Analysis at Canadian Institutes of Health Research (CIHR). As Caroline made clear, the CIHR are the ones with the big money for research, and Caroline had arranged it so all of us could meet.

    We now had a substantial group for this first meeting. Part way through the meeting, Nathaniel heroically arrived, wiping sweat off his brow, having raced over from Parliament Hill, with just a few minutes to spare. He wanted to ensure that the MOH folks understood the seriousness of the ME situation, and the importance of investing in the research. He managed to pitch the idea of partnering with researchers around the world who are way ahead of us, in order to speed up the development of treatments and biomarkers, then quickly ran back to participate in a vote in the House. Nate’s effort was truly appreciated. Caroline had also planned for the Minister of Health herself to come join us, but, as it turned out, she too had to rush off for the vote.

    Jeff, Scott and I told our stories, what led us to be at that meeting. Everyone listened. Our brief, titled “The ME Crisis”, was on the table, and we reminded them that the need was tremendous in the ME community, the suffering is overwhelming, and the science is tantalizingly close to finding a biomarker, and possibly a treatment. We told them of the treatments that are currently being used in other parts of the world, with some definite success, but which are not available here. Caroline was particularly interested in learning more about ME, the issues and the research. She mentioned the Special Access Program, a Health Canada program for considering requests to access for drugs not available in Canada, and that this may be a possibility for getting access to treatments for ME. Marilyn agreed to a digital conference with stake holders, to develop an effective plan for research funding and disseminating the Canadian Consensus Criteria. And invited us to join in discussions about the Catalyst Grant results in April.

    Our meeting was booked for half an hour, and they gave us almost twice that. We didn’t walk away with a promise of millions, but we walked away feeling there is much hope; that these people believe us and want to help; that, if we push and guide and lead, we will find partners in the Ministry and the CIHR to help us with this ME Crisis. But it won’t necessarily be fast.

    We came out of the meeting on a high, but with no time to waste. Jeff headed to the airport early as he was beat. It was 12.30 and the rest of us had 30 minutes to drive 35 minutes across town to the home of Allison, a house-bound patient. Scott had arranged for David to film his interview with her. From Allison’s, we had a 40 minute drive to the airport, and needed to get there by 2.30 for Scott and David to make their flight. Not a lot of time for the interview. But Scott was great as usual, David very professional, and Allison was wonderful. I was moved to tears listening to the sadness of a mother struck down with ME for over 25 years, unable to be the parent she longed to be. The interview revealed an articulate, sensitive, caring mother, wife and person, capable of immense joy, whose life has been marked by too much suffering because of this wretched illness.

    We all wished we had more time, but we had to get to the airport. Despite complaints from the front about slow driving (just over the speed limit apparently wasn’t fast enough!), we made it, a little late, but with enough time. They caught their plane, and, after a very short visit with friends, I eventually got on to the train to Toronto, slowly making my way back to Vancouver.

    With us in spirit at the meeting was MillionsMissing Canada's brilliant, dedicated and determined Barb, whose amazing work with social media - creating all the messaging, timing when and where to post, and developing a group of volunteers to grow the Canadian ME network – has helped to shape our community and pump up the volume on our collective voice.

    With me also in spirit, was my gorgeous and ever-inspiring daughter, Jasmine.

    Thanks to everyone who has been on this journey with us, in particular, Hélène Côté, Jill Thompson, Brent Forman, Jasmine Sanchez Ziller, Sue Armstrong, Larissa Fan, film maker David Cruz and Allison Haynes May, ME patient.

    Thanks so much to everyone who has donated to our fundraiser for this trip. Thanks to the wonderful Nathaniel Erskine-Smith, and to Alexis Bouchard, Carolyn Pitfield, Ashleigh White and Marilyn Derosiers, and to Minister of Health, Jane Philpott, who arranged for this meeting, and who we almost met.

    I don’t doubt that trying to solve the ME crisis won't be easy, but it’s onward and upward from here!

    Dechi, Comet, Alvin2 and 9 others like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Dechi, Comet, ScottTriGuy and 2 others like this.
  5. Molly98

    Molly98 Senior Member

    This is wonderful news and fantastic work, well done to all involved and all my brother and sister ME patients and their carers and advocates in Canada. It is great to hear. :):hug::thumbsup:
    Comet, Jo Best, ScottTriGuy and 4 others like this.
  6. Jo Best

    Jo Best Senior Member

    I'm so pleased for you all and thank you for doing us proud :)
  7. helen1

    helen1 Senior Member

    You are all heroic in your efforts and talents! Thank you...
    Comet and shannah like this.
  8. Alvin2

    Alvin2 If humans were rational...

    Glad to hear it went well!
    Your going to have to keep on them, they might be very nice to you now but something will come along and grab their attention, followup thank you messages and future questions and "reminders" should be on your itinerary.
    Tunguska and shannah like this.
  9. shannah

    shannah Senior Member

    For those who don't go to Facebook for updates, this message was posted yesterday, along with a brief video clip.

    The Day After: A New Day for ME in Canada!

    We are so thankful for the positive, productive and promising outcome of yesterday’s meeting in Ottawa for the ME community in Canada.

    What affects one of us, affects all of us!

    As you enjoy this brief glimpse into this significant day, we’re hoping that you’ll also join us in properly thanking those members that were instrumental in bringing about this meeting and contributing to the successful outcome.

    All of these people were welcoming to those representing our community, receptive to hearing our stories and issues about Myalgic Encephalomyelitis and open to including us to meet again soon.

    Please join us in offering sincere thanks to officials from Health Canada, CIHR as well as one very energetic MP and his assistant.

    Minister of Health Jane Philpott
    Caroline Pitfield, Health Canada, Director of Policy
    Ashleigh White, Health Canada, Special Assistant
    Marilyn Desrosiers, CIHR, Manager
    MP Nathaniel Erskine-Smith
    Alexis Bouchard, Assistant to MP

    Send your own message of appreciation or share one of our short outlines below.

    On Facebook:

    Go directly to the page of:

    1. Minister Jane Philpott, tag her and post your message.

    2. MP Nathaniel Erskine-Smith, tag him and tag Alexis Bouchard and post your message.

    Thank you so much for accommodating the meeting with patients and advocates about the Myalgic Encephalomyelitis crisis in Canada.
    We’re looking forward to having real solutions developed for our community and are looking ahead to future productive meetings.

    On Twitter:

    Send a message from your own page or look for one of ours. Make sure the handles are activated or the message won't be received.

    Thx for meeting about ME Crisis @JanePhilpott @beynate @HealthCanada Caroline Pitfield, Ashleigh White, @CIHR_IRSC Marilyn Desrosiers #pwME


    Send an email to each of the people below responsible for arranging the meeting. (Email addresses need activated below.)

    Dear ____________,

    We are so grateful for the meeting that took place with ME patients and advocates to discuss the ME crisis in Canada.

    The meeting was very productive and promising and has energized our entire community. We look forward to future discussions that will find real solutions for ME.


    Thanks to David Cruz Pedraza, film maker, for contributing his time, energy and expertise to our cause.

    Last edited: Mar 26, 2017
    ahimsa, Jo Best, AndyPR and 2 others like this.

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