Our research The ME|FM Society of BC has a Research Committee that works to engage in research projects in various capacities. We have partnered with other research entities to co-lead our own projects and we are patient partners on externally led projects. For more information about our projects, or with interest to partner in research, please contact research@mefm.bc.ca . Unmet Needs of British Columbians living with ME (Unmet Needs) Unmet Needs is a preliminary project sponsored by the following organizations. The project explored both clinician and patient perspectives. Short Report Long Report Summary Graphic Webinar: ME in BC: How the healthcare system for ME impacts clinicians and patients ​ ​ Examining the Unmet Needs of British Columbians living with ME: Clinician Perspective ​ Patients' view of the unmet needs of living with Myalgic Encephalomyelitis in British Columbia ​ An exploration of unmet needs of British Columbians living with Myalgic Encephalomyelitis (ME) MRI project In 2019 a collaboration between neuroscientist Dr Xiaowei Song at Surrey Memorial Hospital (BC), Dr Luis Nacul at BC Women’s and ME|FM Society of BC received a small grant to study brain functioning for patients living with ME. This research project, while slowed down by COVID-19, is still ongoing. It involved performing brain MRI and magnetic resonance spectroscopy on nearly 20 patients and 5 controls, which constitutes a pilot project. We hope this research represents the beginning of a bigger partnership. Read more about the project findings . Register for our News Updates ICanCME research network In August 2019, a $1.4M catalyst grant from the Canadian Institute for Health Research (CIHR) funding the development of the ICanCME Research Network. ICanCME brings together researchers and patients within its governance and working group activities. ME|FM Society of BC remains closely connected to the activities of ICanCME. ​ CIHR news release, Aug 2019 Update from CIHR, Feb 2020 Website

"Sounds Like ME" journey Register for our free "Living with ME/Long COVID" email series here Learn about our free Social Support Groups What you can expect Register here Add a Title Add a Title Add a Title Add a Title Add a Title Add a Title What others are saying about this course I wish Register here

For FM research links, click here . FM Treatment and management Getting started HealthLink BC Fibromyalgia Treatments ​ Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Self management support and programing Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Treatment Protocol ​ Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Living with Fibromyalgia Learn about: Symptom management & referral Steps you can take Becoming educated about FM and learning to self-manage the conditions seems, so far, to be the most successful way of dealing with its many effects. ​ If you have FM (not ME and FM), there are relevant resources available at PainBC and the Arthritis Society Canada . ​ It is important to find a helpful and supportive medical professional who understands the myriad of issues that an FM patient deals with and can help with the appropriate prescription and monitoring of medications and their effects. It is also important to seek professional help for any reactive depression that may result from dealing with a debilitating chronic illness. Lifestyle modifications are helpful to conserve energy and minimize pain. Facets of pacing may be helpful. Relaxation exercise can reduce physical and emotional stress. Balancing rest with activity may reduce fluctuations in degree of symptoms. Implementing dietary changes may also help to regulate bodily functions and support various systems in the body. Learn about our free "Living with ME/Long-COVID" email series FM Comorbidities Fibromyalgia often coexists with other medical conditions. These comorbidities can complicate the management and treatment of fibromyalgia. Common comorbidities and conditions frequently associated with fibromyalgia include : ME/CFS, Myofascial Pain Syndrome, chronic migraines, sleep disturbances, multiple chemical sensitivities, digestive problems/irritable bowel syndrome, and/or menstrual disorders. It's essential to note that the relationship between fibromyalgia and these comorbid conditions is complex and not fully understood. Other sources of support Support from family, friends and other people is extremely valuable to those who have FM. Professional counselling may help some people to cope with the losses associated with this chronic condition and to assist with developing new coping strategies. Self-help groups can plan important role in assisting people with FM to discover local resources that can access to help them manage their condition. Contact us for more information on finding a support group in your area. Contact us

How to read information and research evidence Note for those seeking information and research evidence It can be a challenge to find credible, reliable information on ME and FM . When looking at information, here are a few key points to consider. Determine what kind of information it is. Is it unscientific or scientific? Unscientific Unscientific information would be any material not published in an academic setting. This information would be published as a blog post, personal website, newspaper articles, or discussion board posts. Individual patient experiences are also unscientific and are considered anecdotal evidence. This information can be helpful, but it requires critical consideration of any conclusions made from it. ​ ​ Some questions to ask ​ Who is presenting this information? Is it a credible opinion? Why? Are there any biases or limitations? Is this consistent or different from other information on this topic? What is known about the author? Does the author financially benefit in any way? What are other articles by the author? Are there links/references to research findings? Scientific ​ Scientific information would be materials published in an academic journal or presentations by researcher(s). This information can be helpful, but not all science is created equal and reading one article/study is often not enough. ​ ​ ​ ​ ​ Some questions to ask ​ What is the sample size of the study? Are the methods used described very clearly? Was there a control group (i.e., a comparison group that didn’t receive the intervention)? Are there stated biases or limitations? Does the author financially benefit in any way? What do other studies conclude about this topic? Are they aligned or different? Not yet a Member? Join us in making a difference. ​Evidence Hierarchy Consider this hierarchy when reviewing your next source of information. It may help in critiquing the level of evidence (image: www.researchgate.net ) A few additional resources to assist reading scientific articles Reading scientific article s (Trent University) Infographic: How to read a scientific paper (Elsevier publisher) Video: How to read an academic journal article (7mins, University of Kansas)

What is ME? What is Long-COVID? What are Myalgic Encephalomyelitis (ME) and Long-COVID (LC)? ME and Long-COVID are both complex, chronic, multi-system illnesses that can seriously impact quality of life. Both are considered part of a larger family of post-viral illnesses: ​ 80% of ME cases clearly came after a viral illness; for 20% of patients, the trigger is uncertain and may have followed some other type of trauma or simply come on gradually. Long-COVID is defined as symptoms and conditions that continue or develop after a probable or confirmed case of COVID-19. The main hallmark symptom of both illnesses is post exertional malaise (PEM), an immediate or delayed worsening of symptoms that may occur even after minimal physical, emotional, cognitive or sensory exertion. ​ ​ Along with PEM, the other main symptom of both ME and LC are: ​ extreme fatigue that is not improved by rest Cognitive impairment, such as problems with memory, concentration, thinking or speaking Unrefreshing sleep and disturbed sleep ​ ​ Orthostatic intolerance such as lightheadedness, dizziness, and passing out Some with Long-COVID have experienced permanent organ damage and many also have chronic coughs, shortness of breath, and chest pain, not usually experienced by those with ME ​ ​ Both illnesses can have a long list of other symptoms , including pain, gastrointestinal issues and others, and both have several common comorbidities (including Fibromyalgia). ​ ​ ​ Livng With ME...... Living with ME/Long-COVID While ME and Long-COVID are not the same, they have heavily overlapping triggers, symptoms, illness management strategies (care and treatments), and impacts on life. In fact, nearly half of patients with Long-COVID meet the diagnostic criteria for ME. ​ ​ ​ ​ For both illnesses, even a mild case can result in a substantial loss of physical and/or cognitive function . Mild disease can result in a reduction of 50% of pre-illness function. Severe patients can be bedridden for months or years, struggling to perform basic daily living tasks. ​ Both ME and Long-COVID symptoms often fluctuate from day to day, or across weeks and months. While some people do experience worsening symptoms over time, illness management strategies, and especially Pacing , can stabilize symptoms and even improve general function and overall quality of life. ​ While there is no known cure for either illness. It is estimated that up to 5% of people with ME and 8% of those with Long-COVID for at least a year fully recover. ​ Sign up for our free "Living with ME/Long-COVID" email series Who gets ME/Long-COVID? In BC, there are an estimated 87,000 people with ME and 118,000 people with Long-COVID that has lasted over a year . Onset of both illnesses can occur in children and adults, with the prevalence being in women and the average age of onset being middle age. Check out our recent News Diagnosis Despite the high prevalence and disabling nature of these illnesses, medical education programs rarely cover these illnesses and guidance for practicing clinicians is often outdated and inappropriate. Standard tests typically return normal results , and some clinicians are wholly unaware of or question the legitimacy of ME and Long-COVID. ​ Consequently, up to 91% of affected people are undiagnosed or misdiagnosed with other conditions, such as depression. ​ To obtain a diagnosis, patients frequently have had to see multiple clinicians over a number of years. Videos Unrest - Jennifer Brea's award winning feature documentary What is ME/CFS? A 6 minute informative introduction from the Bateman Horne Centre After Unrest - ME documentary by Ketra Wooding Understanding ME: Context and Lived Experiences Pain BC Podcast

Caregiver resources A caregiver’s story My name is Jana and I provided care to a person with Myalgic Encephalomyelitis (pwME) for several years. My pwME was my husband and the journey from partner to caregiver wasn't easy. I had to learn new ways to cope with shifting responsibilities and priorities, while dealing with what seemed like the loss of a relationship. One of the first things anyone said to me when they found out that I cared for someone who was chronically ill and bed-bound, whether they were a health care provider, friend, stranger, even my own husband, was that self-care is important. But that is often easier said than done. So I had to find resources that could help me manage it all better. ​ ​ I'd like to say that I figured it out but I didn't. However, I did find some useful resources that are shared here. Everything has been collected based on how it helped me, or other caregivers like me, and I hope you find some of it helpful, too.This page is here to try to help you in your caregiving. Some of the references are to ME-specific caregiver resources or information but many are not. It’s important to note that none of these links are endorsed by the ME|FM Society of BC . If you have questions, recommendations for sources for this page, or you would like to share your own story, please contact support@mefm.bc.ca . ​ Learn about our free Social Support Groups ME caregiving resources Many caregivers also find books, websites, blogs and podcasts about living with ME can also be helpful when trying to understand what it’s like to live with ME. Non-ME caregiving resources Family Caregivers of BC ​ Supports British Columbians who provide physical and/or emotional care to others. Caring.com Geared to people caring for the elderly; some less specific resources are available. Doctors of BC List of community resources for family caregivers, including financial aid. The Caregiver Space ​ Where you can ask questions and share experiences about being a caregiver. Other caregivers have found books, podcasts and blogs on the following topics helpful: ​ General caregiving Caregiver burnout Meditation and mindfulness for caregivers Setting boundaries Relaxation and stress relief techniques You may also want to consider: ​ Some form of regular physical activity, acupuncture, massage therapy, etc. Guided breathing and meditation Apps that help with time management, organization, health and wellbeing Become a Society Member Open Medicine Foundation Resource for parents of children with ME ME/CFS and FM Self-Help page US CDC Document for parents of children with ME MEAction’s Guide to caregiving MEAction’s Caregiver Facebook support group SolveME resources General Caregiver Learn about our free "Living with ME/Long-COVID" email series here

Our free "Living with ME/Long-COVID" email series Register for our free "Living with ME/Long-COVID" series Get up-to-date, fact-based information developed by experts, patients and caregivers, straight to your inbox. Includes friendly, easy-to use info sheets, tips, and practical tools. First Name Last name Email Register Receive 12+ helpful, informative series modules, sent to you personally by email. • Understand your symptoms • Know your options • Sift through misinformation • Practical health and living tips • Tools to manage your illness • Feel understood and supported • Help for diagnosis • Help talking to doctors, family & friends If you do not receive a confirmation email upon registration, contact techsupport@mefm.bc.ca . What others are saying about this series Christina Wiebe "I feel like this series is a life-line for people with ME or Long-COVID who are faced with healthcare and social support systems that provide so little access to knowledgeable help and meaningful support. It’s making valuable information and tools available to us from within the safety of our own homes, empowering us to learn how to cope with and manage living with these chronic illnesses. If I’d had access to this information when I first got sick, I would’ve felt less lost and more supported."

Medical info FAQs FAQs are reviewed and up to date as of March 2024. These FAQs will be reviewed periodically and updated accordingly. Do you have more questions? Please email us at support@mefm.bc.ca. Medical info 1. I'm looking for a doctor who knows about ME and/or FM. 3. My doctor doesn’t believe me or my symptoms. 5. Is there a cure for ME? ​ 2. I don’t have a family doctor. ​ 4. Who can help determine a diagnosis for ME? 6. What treatments are available for ME? Sign up: our free Social Support Groups FAQ 1-6 Support info Managing 7. What is pacing and how do I do it? ​ 8. What type of home support is available for people with ME and FM? See our free "Living with ME/Long-COVID" email series FAQ 7-8 Legal, financial and other resources 9. I have to complete disability forms. How do I start? ​ 10. Where can I find a list of community and financial resources? Get free support here FAQ 9 - 10 Relationships 11. How do I explain ME to family members? ​ 12. How can I connect with others living with ME and FM? FAQ 11-12

ME/Long-COVID Treatment & management Introduction There is, as yet, no cure or universal treatment for ME; there is only individual treatment for specific symptoms. However, there are some steps that you can take which may help: Aggressive rest, especially in the early stages and during relapses, is the one therapy universally agreed upon as key in the management of ME. ​ ​ Work with your medical professional to obtain appropriate medical support for sleep disturbances, unmanageable pain, reactive depression, any nutritional and hormonal deficiencies, and/or to assist you with lifestyle changes needed to manage a chronic illness; ​ ​ Pacing , which means staying within your ‘energy envelope’ by managing your activities as best you can to avoid the push-crash cycle of relapsing symptoms. Join a Myalgic Encephalomyelitis support group to relieve the isolation and loneliness which ME can create, and to learn more about the illness and how others cope with it. ​ A healthy diet seems to help some patients. Since some people develop food sensitivities, it may be helpful to experiment with diet in consultation with your health care team to discover which are better tolerated and which should be avoided. Above all, when you are feeling a bit better, avoid the temptation to catch up with unfinished tasks as this is likely to cause a relapse. Slowly build up your activity levels gradually and listen to your body when it tells you to rest. It is crucial to recognize your limits and not push beyond them. ​ Heading 6 Sign up for our free "Living with ME/Long-COVID" email series Videos on Symptoms and Management The Bateman Horne Centre (USA) has developed a six-part educational video series describing symptoms, diagnosis and illness management tips for Myalgic Encephalomyelitis (ME) and Fibromyalgia. Video 1: Getting the Right Diagnosis Video 2: Activity Intolerance & Post-Exertional Malaise Video 3: Restorative Sleep Video 4: Chronic Widespread Pain Video 5: Cognitive Impairment Video 6: Orthostatic Intolerance Tools for ME Management ME/CFS Crash Survival Guidebook: The Art of Living with ME/CFS. This guidebook is designed for patients, for those allies supporting patients, and for medical providers. Pacing Resources: We have reviewed and collected available Pacing resources , guides and tools. Facets of ME: This is an educational series produced by ME Action (US) guiding patients and community through a number of ME related symptoms . ​ Facets of ME - #MEAction Network Sign up for our free Social Support Groups If you are having surgery/anaesthesia Recommendations for persons with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you are considering physiotherapy While this book's primary audience is physiotherapists, it includes comments from people with ME and case studies of how physiotherapy may assist different presentations of ME. The book is available in print and ebook formats through online sellers such as Amazon. You can also ask your local bookstore to stock it from the publisher (Jessica Kingsley Publishers). If you have no family doctor If you have no family doctor Register with HealthLink BC’s Find a Doctor service, which helps connect people who are looking for a family doctor with one who is accepting new patients. You can register online here or by calling 8-1-1. With upcoming changes to the system, where there are wait lists for primary care givers, there is a chance that people calling in with complex chronic illnesses will be placed higher on wait lists. ​ ​ Contact your local Division of Family Practice, which is a group of family doctors who work together to improve primary care in their communities. They may have programs or resources to help you find a family doctor or access other health services. You can find your local division here . ​ You can also try “Find a Family Doctor ” from the BC College of Family Physicians or “Find a Doctor ” from Doctors of BC. ​ Fully utilize support groups or organizations for people with ME, Long-COVID, other post-viral illnesses and their comorbidities, such as the ME|FM Society of BC. As well as offering information and toolkits for self-care and illness-management through our “Living with ME/Long-COVID” email series and on our website, we also offer online support groups to help you learn, share ideas and experiences, and cope with your illness. ​ ​ If you have no family doctor or access to other healthcare workers, no specialist referral, and no access to the CCDP (due to geography, age or wait list, for example), you may feel you have to fall back on walk-in clinics or urgent and primary care centres (UPCCs) for diagnosis or care. However, these are unlikely to provide you with comprehensive care for your complex chronic illness. You may also have to wait for a long time to see a doctor or nurse at these places. If you find yourself in this situation, there is no fast, easy way out. BC has a shortage of primary care doctors and finding a new one taking patients, especially one that is knowledgeable about post viral illnesses and is willing to take on patients with complex chronic illnesses, can be challenging. ​ There are some steps you can take that might help improve your situation:

Legal, financial & other resources Community and Financial Resources in BC guide Compiled from the Complex Chronic Diseases Program, this resource contains contact information to gain assistance on various financial assistance options (e.g., income tax help, government assistance programs, credit counseling), daily living support (e.g., public transportation, parking passes), accessing care (e.g., low cost dental and therapeutic treatments) and other supportive home services. Information contained in this guide is up-to-date as of June 2022. Here are some specific sections from within the larger guide Counselling ​ ​ Coverage for Prescriptions and Basic Medical Services ​ ​ Finding a Family Doctor ​ ​ Government Income Assistance Programs (when you can't work) ​ Home and Personal Care Services ​ ​ Housing (advocacy, financial supports, accessibility, listings) ​Legal ​ ​ Self-Advocacy Support (help with applications) ​ ​ Support with Private Insurance (Disability, Life, Health) Disability Alliance of BC The DABC supports people, with all disabilities, in numerous ways including free legal advice, affordable housing, tax filing, Disability Tax Credit, income supports and other benefits. See a list of their programs here . Contact them here . PainBC PainBC ​ Pain Management ​ Pain Support and Wellness Groups ​ Pain Support Line:1-844-880-PAIN Find Healthcare Providers ​ Contact ​ Understanding and applying for the Disability Tax Credit The ME|FM Society of BC is pleased to have partnered with Disability Alliance BC to prepare introductory information on applying for the Disability Tax Credit (DTC). This recording reviews eligibility criteria, helpful tips and what to expect, as well as examples for ME|FM. Also introduced is an online tool the Disability Alliance of BC developed to support completing the DTC form. ​ The purpose of this recording is to provide introductory information for you to watch, rewind and rewatch, or send to someone who is helping you with the paperwork. The Complex Chronic Diseases Program hosts live information sessions with Disability Alliance BC on the DTC. Our recording may be a helpful complement to this session, or support those who can’t attend a live session. ​ Disability Alliance BC also provides 1:1 consultations for application support. Our recording may be a helpful complement to watch prior to your consultation. For more information about the DABC, please visit their website . We gratefully acknowledge the support from the Wickerson Foundation for the continuation of our educational sessions and webinars. ​ Rogers Communications Services ​ Rogers Communications lists a number of accessibility services and solutions to try to better support communication in the community. A number of offerings are listed on their website. Additionally, Rogers customers with an accessibility need or a disability, may be eligible for a discounted Wireless plan ($20/month discount). For more information, visit: Accessibility – Services, Products & Solutions | Rogers Good news from Telus! TELUS is expanding its "Internet for Good" program to people living with disabilities who receive financial disability assistance from the provincial governments in British Columbia and Alberta. TELUS’ "Internet for Good" program provides high speed broadband Internet at home for only $9.95 per month. Since 2016, the program has been available to families receiving the Canada Child Benefit from the federal government. To support more Canadians, TELUS has expanded the program’s eligibility to also include more than 110,000 British Columbians and 69,000 Albertans living with a disability and receiving provincial disability benefits. This program expansion comes at a particularly critical time as the evolving COVID-19 pandemic has demonstrated how important it is to have a safe and reliable connection at home. Read more ... Other resources Bateman Horne Centre Medical considerations when treating urgently ill patients with underlying ME/CFS ​ Government of Canada Disability Benefits Listing of various federal government disability benefit programs and plans. MS Resource Manual 2020 BC & Yukon Division Many resources are applicable for ME and FM patients. ​ Human Rights in British Columbia Fact sheet on discrimination against people with physical or mental disabilities. ​ Human Rights 101 The law and particular cases relevant to people with ME and FM. Recorded 2018 . Disability Alliance of BC Disability Law Clinic Summary Advice and Referral Service which is a free, confidential legal service.

Healthcare providers: Easy ways to support the ME, Long-COVID and FM communities Refer patients and caregivers to our free Social Support Groups Sign up for our News Updates Donate Refer patients and caregivers to our free "Living with ME/Long-COVID" email education series Refer patients and caregivers to our My MLA and ME Campaign Apply to participate in our Interdisciplinary Advisory Committee Refer patients, caregivers and colleagues to our website Become a Professional Member Volunteer Looking for more info? Contact us