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Closing BC's ME Knowledge Gap, One Doctor at a Time
"I need a doctor who believes in it. This is where the support starts." That's what one BC resident told us in our 2021 provincial study on ME care. It's a simple sentence, but it points at something bigger: what if the biggest lever for improving ME care in this province is as simple as information reaching the people making diagnosis and treatment decisions? The gap, in numbers In our 2021 province-wide survey of 173 BC clinicians: 80% rated their own knowledge of ME as mod
info519251
1 day ago3 min read
New Ways to Connect
Sometimes you want to hear how other people get through the day, or share a little of what yours has been like. Maybe you have a question, a frustration or a small win. And sometimes you just want a little company and a reason to laugh. Living with ME, FM or Long COVID can leave fewer chances for these ordinary moments. Work, hobbies, outings and casual conversations may become limited or disappear altogether. Our earlier article on isolation and the power of peer support exp
info519251
Sep 292 min read
The Pain is Real: Fibromyalgia in Our Genes
“We are not drug seeking. Trust me, I would not be there if my pain wasn’t approaching critical levels.” That is what one BC patient told us in our 2025 community survey about seeking care for severe pain. People living with fibromyalgia know this kind of disbelief all too well: pain dismissed as exaggeration, symptoms blamed on anxiety or weight, patients treated as “drug seeking” when they ask for help. September is Pain Awareness Month, and this year there is important new
info519251
Sep 172 min read
Evaluating Research and Treatments — Guidance from our Interdisciplinary Advisory Committee
People living with ME and Long COVID that meets the diagnostic criteria for ME (Long COVID/ME) are often desperate for answers, and understandably so. The absence of curative treatments and the history of medical dismissal our community has endured means that when something promises relief, people listen. In our community, we live with profound, disabling illness. We are not naïve. We are in need, and our openness to hope can make us vulnerable to unproven treatments and pote
info519251
Aug 285 min read
Learn More About Being a Patient Partner
Helping individuals connect with meaningful research opportunities and encouraging research teams to collaborate with patient partners, CanTrain (Canadian Consortium of Clinical Trial Training) plays a pivotal role in enhancing the landscape of clinical research in Canada. CanTrain offers self-paced, free courses for patients and community partners, designed to empower participants with the knowledge and skills necessary to engage effectively in clinical trials. By emphasiz
ME|FM Society of BC
Aug 101 min read
New Resource: Clinician Education and Training Now Available
Access to knowledgeable, well-informed healthcare providers remains one of the biggest challenges facing people living with ME/CFS, Long COVID and Fibromyalgia. Our own survey data backs this up starkly: most patients report that healthcare workers have little, outdated, or incorrect knowledge of these conditions, and "more knowledgeable providers" is patients' top priority for better care. On the clinician side, past BC surveys have found that most physicians feel only moder
info519251
Jul 302 min read
Our Response to the BC Patient Experience Survey
The BC Ministry of Health is inviting British Columbians to take part in a new Patient Experience Survey. In response to an earlier version of this survey, the ME|FM Society of BC prepared a written submission grounded in our own research: the BC Patient Experience Survey Report (October 2025), conducted in partnership with the National ME Action Network, BC Lyme Society, and ME Victoria Association. It's the largest survey of ME/CFS, fibromyalgia, Long COVID and Lyme patient
info519251
Jul 301 min read
Take the #Plank4ME Challenge, Support ME Research
We're inviting our community, and yours, to join the #Plank4ME challenge in support of the Open Medicine Foundation's current research campaign. How it works: Take a photo or record a short video (no more than 15 seconds and 100 MB) of yourself planking in support of Myalgic Encephalomyelitis research. You can see a video example here. If a plank isn't accessible to you, that's completely fine. You're welcome to lie down on the floor, a couch, or a bed instead, and simply say
info519251
Jul 181 min read
Why Defining Long COVID Matters for Research and Care
As we've explored in previous posts (blog, think piece), academics and clinicians need to understand the different types of Long COVID to deliver safe, effective care and produce meaningful research. A new peer-reviewed article puts the same issue front and centre: "Rethinking measurement of health outcomes in Long COVID: Complexities, challenges and considerations." The authors note that many studies use only partial definitions or conflate Long COVID/ME with a lengthened re
info519251
Jul 181 min read
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