ME Patients and Advocates Meet with Health Canada, 23 March

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!

See Elizabeth's photos from the trip here.

#ME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #MillionsMissingCanada #millionsmissing #MinisterJanePhilpot #2017

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