Siobhan was once a ballet dancer and is now helping others with ME. She was born in South Africa and immigrated to Canada with her family in the 90s. From a young age she knew she was destined for a life on the stage. She began dance lessons at three and had landed her first major role in a ballet at ten. From then on, she dedicated her life to making it as a ballet dancer and by sixteen she was dancing professionally! Unfortunately, just a few years later she’d have to quit her dream job as her body seemingly shut down.  Continue reading...

Sue loved her life! At 58, she had the job of her dreams, administering a small non-profit agency, enjoyed living on a small hobby farm with her husband and loved travelling the world. She had an active social life and was looking forward the retirement she and her husband had planned and saved for over many years. But gradually, and insidiously, illness overcame her. Gradually she was able to do less and less. Her daily dog walks, once the highlight of her day, became a chore. Eventually she could only sit in the car and watch the dogs play as others walked them. Headaches, nausea, sore bones, dizziness, and a profound and overwhelming fatigue became her constant experience. Work was no longer possible, and she was forced to resign the job she loved. Within months of leaving work, she was bedridden, no longer able to tolerate bright lights or loud sounds. Movements in the room would overwhelm her. Her symptoms became worse. Her husband became her caregiver. Despite a sympathetic physician, there were no medical answers. Weeks turned into months. Finally, she was referred to one of the only physicians in BC knowledgeable about ME, who began to turn things around for her. Slowly, with appropriate care, she improved. Now, 8 years later, she is still primarily homebound, but with aggressive management of her disease, able to participate in family life, and contribute to the work of the ME/FM Society of BC.

In November 2019, after working for 11 years as a manager of an independent seniors' residential building, I had to finally succumb to my illness and my limitations. The five years prior leading up to this decision was the most difficult as I tried to gain support and understanding from my GP and specialists, all the while seeing the quality of my life and abilities go from working almost full time and running our 18-year tax business. I was reduced to working one day a week just months prior to resigning and closing my tax business. I was devastated to lose my accomplishments and quality of life. In May 2017, I was finally accepted into the CCDP at BC Woman's hospital and given the diagnosis of ME/CFS and Fibromyalgia. They over the next 2 years gave me all the support I needed, but please keep in mind their sole purpose is to diagnose with a lengthy report and explanation of treatment recommendations that are to be carried out and supported by our GP. Even though my GP sent in the referral he was not willing to accept or support the recommendations. I was forced to leave my GP and find a new one who would help me. The CCDP in the meantime were gracious enough to help with my application for disability benefits. I was able to find a new GP that accepted and supported my care. Unfortunately, this year she needed to close her practice for personal reasons but did give her patients another doctor that was willing to take us. My new doctor has been supportive; however, in our first meet and greet based on the information I provided her, she wanted to first make clear that if I was looking for narcotics for pain, she would not be able to help me. I do not need that for pain, but what if I did? We are in desperate need of a medical system that acknowledges and supports patients with a diagnosis process and once confirmed, continuing to provide that support.

I was a driven, positive, mother, wife and management consultant, Chair of the Board of a biotech, and strategy consultant for developing businesses. I was strong, healthy, happy and focused. I had a socially engaged, smart, exuberant girl of 11 who did Ninja Warrior, gymnastics, soccer, circus classes, swimming, leadership group, knitting club, “little buddies” with younger kids, and was said by all teachers and coaches to be kind, positive, tough, and a real leader. My daughter and I canoed, camped, did art projects and ropes courses together, and climbed trees. Our mother/daughter saying was “push it – always push it,” and we loved it. Then ME hit us. We all (my daughter, my husband and I) caught a nasty virus on December 27, 2019 and my daughter never recovered. She lost the infection, the sore throat and the fever, but she never regained her energy. She would get exhausted with the smallest amount of physical or mental effort. She was calling to be picked up from school after an hour every day and we finally had to just keep her home. She missed almost all of her final year in elementary school and could not keep up with the work. Her friends started to drift away. Our GP was insulting and accused her of being lazy. I was told to push her back to school and activities. We tried a pediatrician who accused me of being a bad mother and told me it must be a mental problem. Why, I asked? Do you see anything in her that suggests that? “No, but all the “real” tests came back negative, so it’s obvious she is just not opening up to me and she simply needs a psychiatrist and pressure to get back to school.” We were dismissed. And hurt. And angry. And alone. And we both knew they were wrong. Dead, dangerously wrong. We still do not have any support form the medical community – there are few to no resources for children (or anyone!) with ME. My daughter can rarely leave the house and will not be able to enter high school with her friends. We work together to keep positive and see the light and life in small things. But the pain, fear, loss, mourning, lack of contact with other kids, nausea, body spasms, sometimes difficulty breathing and thinking straight is exhausting and hard to handle for us both. I have lost much of my career, a lot of my joy, and my vision for my daughter’s future. My daughter has lost almost everything. This is ME.

My name is Jana and I was the sole caregiver to my husband who was bedbound with ME. He was first diagnosed in about 2007 after experiencing symptoms that ranged from shortness of breath to extreme exhaustion to body pain. The first few years he was sick, he was still able to work and live almost normally. Then one day, a couple of years after he was first diagnosed, he felt better, back to normal. He likened it to a switch being flipped and we both forgot all about ME. Then at the beginning of 2018, he was feeling tired, achy, dizzy and nauseous all the time. He went to the doctor and she gave him very strong anti-nausea medication. It didn't do anything. He was experiencing abdominal pain so he went back to the doctor and she didn't have any explanation so she ordered some tests. They all came back negative. The dizziness continued so she sent him to an ENT doctor. He finally got to see an internal medicine specialist and had even more tests that came back negative. While still undergoing tests with the specialist, he was still experiencing seemingly unrelated symptoms and his primary care doctor was not helping. In fact, she began to cancel his appointments and he was basically left without a doctor. This actually turned out to be a good thing since I was able to get him into a new doctor who knew a little about ME and suggested it might be a resurgence. By the end of 2018, my formerly active husband was housebound and increasingly bedbound. His official diagnosis came after countless blood tests, CT scans and an MRI ruled out diseases like Addison’s and MS and his (new) doctor and two specialists said that the only remaining diagnosis was ME. The diagnosis took more than a year to get but we consider this fast. Many ME patients suffer for years without a proper diagnosis. He lived in bed until his passing in 2023.

Office renovations in 2010 brought on the end of my “used-to-be” when I began to develop an overwhelming list of symptoms with fluctuating severity, some of them “mainstream” and some rather strange. After numerous fruitless tests, my doctor’s advice was reduced to “Don’t feel like you have to be sick”, and a subtle hint at my aging. My doctor did refer me to specialists for some of my symptoms. I patiently waited, usually for months, to see them: respirologists, gastroenterologists, rheumatologists, an allergist, a dermatologist, a physiotherapist, ENT specialists, a neuro-ophthalmologist, psychologists etc. – each focusing on their area of expertise through the lens of their specialized knowledge - dots that didn’t get connected. For years I was left looking for answers to questions no one else seemed to be asking. Sometimes people around me thought I was going crazy; sometimes I myself was sure I had. Until a nurse-friend of mine handed me an article she had received from a patient with similar symptomatology. Through it I found out about the Complex Chronic Diseases Program at the Women’s Hospital. With a hopeful heart I initiated a referral, earning myself a spot on their … drumroll … two year plus waitlist! My doctor had never heard of the Program. I eventually wrote her a letter, attaching the Canadian Consensus Criteria for ME as well as the Central Sensitization Model. In our follow-up conversation, she told me she had not been the only one who didn’t believe me, something I had sensed all along. But then again … how could she? Nobody, it seemed, had taught her about Myalgic Encephalomyelitis in medical school. Seven years after the 2010 incident I finally received the correct diagnosis of ME/CFS. But because ME is lacking so much equality compared to other diseases, I had by then lost not just my ability to work, but also a big chunk of my trust in the medical profession, any illusion about certain insurance provider’s “fair processes” as well as too much of my mental health. What I have gained however; is an unbreakable determination to rebuild the level of wellbeing I once had the luxury to take for granted. I have fine-tuned my self-awareness. I have developed deep gratitude for my friends and family, my chosen care providers, nature, and the many little things which make life the big deal that it is. Plus, I have gained insight into our medical-political system with its oh-so-much room for improvement. Therefore, this “My MLA and ME” advocacy initiative caught my attention, because – as Jon Bon Jovi would say: “When you can’t do what you do, you do what you can.”