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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
2 days ago1 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 Our own survey data backs this up starkly: most patients report that healthcare workers have little, outdated, or incorrect knowledge of these conditions, and "more knowledgeable providers" is patients' top priority for better care.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
New Research Points to a Possible Mechanism Behind Post-Exertional Malaise
Dr. Alain Moreau, who directs OMF's Collaborative Research Center in Montreal, and his team have published new findings that may help explain why exertion triggers post-exertional malaise (PEM) in people with ME/CFS. The research centers on irisin, a protein released by muscles during exercise, and its relationship with thrombospondin-1 (TSP-1), a protein involved in immune response and wound healing. Comparing 92 people with ME/CFS to 44 sedentary healthy controls, the team
info519251
Jun 261 min read
A Quiet Signal: How the Sunflower Program Supports ME Travellers
If you live with ME, Long COVID, or another energy-limiting illness, you know the particular exhaustion of explaining your condition to a stranger, again and again, just to get through a day that already takes everything you have. Travel can make this worse: lineups, unfamiliar staff, no time to rest between steps. The Hidden Disabilities Sunflower Program offers a small but meaningful way to skip that explanation. The Sunflower is a discreet lanyard, pin, or sticker that sig
info519251
Jun 252 min read
You Are Not Alone: Isolation, Seniors, and the Power of Peer Support
For many people living with ME and Long COVID, one of the hardest parts of the illness isn’t a symptom you can point to on a chart. It’s the silence of a world that has stopped including you, where contact fades, and life can become something you watch from a distance. These illnesses can shrink a person’s world. Post-exertional malaise, profound fatigue, and unpredictable energy strip away work, friendships, family gatherings, hobbies, and community. What’s left for many is
info519251
Jun 253 min read
The True Cost of Long COVID and ME
A joint analysis by Risklayer and the ME Research Foundation, updated in April 2026, has put a price tag on what patients, caregivers, and advocates have long known: these are serious, debilitating conditions with massive consequences not just for individuals, but for all of society. What the Report Found The report, which covers the six-year period from 2020 to 2025, concludes that Long COVID and ME cost German society €318.8 billion over six years. In 2025 alone, the combin
info519251
May 123 min read
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