shannah
Senior Member
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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.
https://www.facebook.com/MillionsMissingCanada/posts/406334719728256:0
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.
https://www.facebook.com/MillionsMissingCanada/posts/406334719728256:0
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