Updated: Jun 24
00:00:30 Opening speech: Hilary Robertson, ME│FM Society of BC Board Co-Chair
00:09:11 Opera Mariposa’s Jacqueline and Stephanie Ko
00:15:45 ME Community speaker: Liz Tevaarwerk
00:24:11 ME Community speaker: Juan Garzon
00:31:37 ME Community speaker: Melissa Wade
00:35:22 Spotlight on rally signs
00:41:55 Group photo
00:45:17 Video message from Dr. Luis Nacul, Medical Director, CCDP
00:59:37 Linda Reid, Liberal, MLA Richmond South Centre
01:10:36 Community speaks
01:42:42 Closing remarks - Hilary Robertson
For those of you who made it to the rally, THANK YOU! It was truly awesome and felt like a real rally, only way more comfortable!
For those of you who couldn't make it, we know you were there in spirit and look forward to seeing and hearing you at future events.
To everyone in our community, help us keep our Millions Missing BC 2020 campaign going all year. You will find a number of ways to continue participating on the campaign pages of our website HERE. You'll also find images and videos from the community and a page for MLAs.
Dr. Nacul's video message for the rally has been subtitled for those of you who prefer to read: you'll find it here. Many thanks to Senior Audio Producer, Doug Paterson of Big World Sound for cleaning up the audio! For those of you who can't handle video or audio, a transcript of the message is available here.
You can watch the opening speech by Hilary Robertson, our Society's Co-Chair, here.
Following is the transcript of Hilary's speech, who did an absolutely wonderful job moderating the event.
Good afternoon Everyone.
My name is Hilary Robertson and I am the Co-Chair of the ME/FM Society of BC. I am a person living with Myalgic Encephalomyelitis – commonly called ME. I welcome all of you to this first virtual rally initiated by the ME/FM Society and look forward to hearing from many of you over the next two hours.
This year’s ME May Awareness Canadian theme, devised by Millions Missing Canada, is “Leave No One Behind”. It is our goal to ensure that here in British Columbia we ensure that we leave no one behind and that our voices rise as one to educate, inform, advise and work with our legislature and ensure people living with ME are heard, cared for, and visible.
I am one of the estimated 578,000 Canadians and 78,000 British Columbians living with this disease. For those not living with ME or caring for a partner or family member with ME there are always questions.
78,000 you ask? Where are they, why don’t I know this? Why don’t I hear about ME? Why have I never heard of the disease?
ME is a complex multi-system disease that robs people of their health, their lives, their community. One of the hallmarks of our disease is something called PEM – post exertional malaise. For an ME patient, simply eating, showering and talking is all they can do in a day. For others, it might also include a walk around the block and for others even all of this is too much and they spend most of their lives in bed, on the couch, or in a chair.
You don’t see this disease because we are missing….missing from all aspects of life.
There is no cure, there is no treatment, there is limited research funding and most importantly there is limited medical education and knowledge.
It is time to change this dire situation.
In a time where the chronically ill, the immunocompromised, and the elderly have been on the front line, targeted by a deadly pandemic, the government is now talking of slowly going back to a new normal.
But this isolation has been our normal for a long time.
In light of COVID-19, we are witnessing a changing world where collective action is being taken in an efficient and swift manner with unprecedented co-operation between various levels and branches of government. The same needs to happen for those living with ME.
We’re calling for our policy makers to take action right now to leave no one with ME behind in the very same intolerable setting the rest of the world finds unbearable right now.
Like many other diseases, there is no cure for ME or even an effective treatment approved at this time, but there is much that can be done right now to bring health care equity, alleviate the suffering, and offer needed support that will change the future for 580,000 Canadians living with ME.
We’re calling on our decision makers to meet with advocates and stakeholders to learn more and begin implementing those critical steps that will offer solutions right now!
This is our first virtual BC Missing Millions Event. We promise it will not be the last. Millions Missing Canada was first started by Liz Tavaawerrk – and she led the very first virtual campaign of Missing Millions and we are so pleased to have her with us today. That event, modelled on the International Missing Millions efforts, allowed people right across Canada to become involved and from this, Missing Millions Canada was created. Last year was our Society’s first Missing Millions event held on the lawns of the legislature….this year, due to COVID-19, we have embraced the opportunity to hold this virtual event…and plan to continue to do so from here on.
Today you will hear from patients, you will hear their stories. There will be an opportunity for you to speak, to ask questions to tell your story. You will hear about our Society’s work on your behalf. You will hear from one of the very few medical experts – Dr. Luis Nacul. Dr. Nacul is the Medical Director of the Complex Chronic Diseases Program out of BC Women’s Hospital. You will also hear from an MLA who has become educated on this disease and is a friend to our Society. Linda Reid, MLA for Richmond South Centre is the longest serving woman in BC history. She is here today to offer support and guidance on ways our community can have our voice heard, to engage with the legislature and ideally ways to ensure people with ME are ensured equitable health services.
Before we move on - we need to acknowledge and give our heartfelt thanks to our very special Major Donors, the Wickerson Foundation, Opera Mariposa and the talented Jacqueline Ko and Stefanie Ko for their very generous support over several years. In combination with our many, many individual donors, their generosity has allowed our Society to push for education, lobby for better services and most recently move forward with research collaborations related to ME.
I am so proud of our Society moving forward into research and this year marks a new beginning. Our Research and Special Projects team (Lana LeBlanc, Kati Debelic, and I) have successfully collaborated with BC Women’s Hospital, the Complex Chronic Disease Program. Dr. Luis Nacul is one of our lead medical partners on these projects and we offer our gratitude to him for his passion and clear sightedness in engaging in collaborative patient oriented research. We have three – think about that - three research projects underway at this time. The pursuit of excellence and furthering research related to this underserved population is paramount for our Society.
Throughout this past year our Society has worked diligently on your behalf. Our volunteers have been extraordinary. Our phone line volunteers take your calls, answer questions and find resources for you when you reach out. Our Advocacy Committee has liaised with government at all levels and has been persistent and diligent in ensuring that those with ME are heard, recognized and are not left behind. Our Campaign Manager, Elizabeth Sanchez, my co-chair, has worked tirelessly and along with our Marketing Manager, Christina Wiebe; they have ensured that this month has truly been a vibrant Missing Millions BC event. And remember, most of these volunteers – over 90% of us – are living with ME.
So the question for today and in these times is, "How do we find a voice???" How do we, as a community, challenged with disease on a daily basis….how do we ensure we are not left behind?
Well, let’s explore that question. Let’s hear from the people who have come today, let’s hear from you. Thank you.