Millions Missing Canada is staffed by dedicated volunteers. Here are the four members of our core team.
As a long term survivor of severe ME as well as a caregiver to a son with severe ME, I am intimately familiar with the physical, emotional and social ravages of this cruel and relentless disease. Equally cruel, is the current dismal research and health care landscape for ME in Canada, a direct result of the compounded biases and failures of our government, health officials and medical personnel in facing the challenges of this disease.
I look forward to the entire backdrop for ME changing in Canada with a new and healthy foundation built on the latest sound research and offering effective interventions. I look forward to the myths and misconceptions about this illness quickly being dispelled and corrected. I look forward to our officials and physicians being educated and well informed about the serious nature of this disease and partnering with us in delivering equitable health care, resulting in patients being treated with care, dignity and respect on par with any other disease.
For those who once led full and vibrant lives and are now suffering endlessly, all of this cannot happen fast enough. Inaction from our government is no longer acceptable. Not to speak is to speak. Not to act is to act. Change begins with a choice and a single step in the right direction. Let’s step up together!
I have been living well with HIV since 1998, and suffering a lot with ME since August 9, 2012. I am a medal winning triathlete and 3 time member of the national triathlon team in my age group. Now, on good days, I can walk for 10 minutes on flat ground. I can accept the ME diagnosis, and I can accept the bleak prognosis, but I cannot accept the harm our health care system perpetuates on Canadians suffering with ME. I have experienced both ends of our health care spectrum, from the very best research and treatment in HIV, to non-existent research funding and either no or harmful treatments with ME.
Mother/carer/advocate for my inspirational 26 year-old daughter, who has been housebound since 2009 and bedbound since 2013. My goal is to work with others to create a safer and more hopeful environment for my daughter, an environment where she will not be left unprotected and vulnerable should anything happen to me or her father. Through advocacy, I am hoping we achieve: equitable funding for ME research in order to provide hope for a healthy future for all ME patients; education of health care professionals so that no ME patient has to suffer this illness alone and without guidance; appropriate supports and services for severe ME patients, so they can manage their illness with dignity and without fear; and a platform for patients to have a voice, no matter how severely this wretched illness affects them.
I have been significantly ill with ME since I contracted a flu in Sept 1996. Like many people, it took me years to get a proper diagnosis, including six job and two career changes of lower capabilities to meet my continual physical and mental decline. Over the past 5 years I have become more severely ill but even at this level I know I am better off than so many others. I can still work part-time at home, being mostly house-bound. It cost me $8000 and a trip to Stanford University in Palo Alto California to get a diagnosis, an apology from the medical community for the abuse ME patients suffer and some hope and treatment. It was at that point I realized that even in my limited capacity, I need to speak out since I still have the ability and so many others are too ill to do so themselves. In Canada, we need and deserve the kind of acknowledgement, treatment and research that is found in other countries. We need and deserve to be seen.