What is pacing? Pacing is a self-management strategy that people with Myalgic Encephalomyelitis (ME) use to prevent or lessen the symptoms of post-exertional malaise (PEM ). Pacing involves reviewing each type of exertion throughout a day (or set of days), including physical, cognitive, social and emotional aspects, to determine how much activity can be done without increasing symptoms. Pacing needs may fluctuate day to day; it is important for ME patients to understand their limitations. Pacing is not the same as graded exercise therapy (GET ). GET is not recommended for ME patients. GET is a treatment approach where physical activity is gradually increased over time, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms. Learning to pace yourself is challenging, as ME symptoms are multiple and varied. Pacing is about doing what you can, within your energy limits. ​ Learn about our free "Living with ME/Long-COVID" email series here Pacing resources Sign up for our "Living with ME/Long-COVID " email series to get simple pacing instructions and other helpful tools and information such as: ​ dispelling myths, how to talk to your doctor, learning to live with ME/Long-COVID, mental, emotional and personal identity, and symptom, medication and other tracking toolkits. Introductions and Guides Introductory overview ​ ME Action’s guide to PEM and pacing ​ HealthLink BC - Pacing technique Paediatric ME/CFS and Long-COVID ​ Research paper on pacing: ME and "long-COVID ​ ​ ME Action's Pacing and Management Guide for Paediatric ME/CFS and Long-COVID ​ Basic tutorial ​ ​ CCDP post viral fatigue resources ​ ​ ​ ​ ​ ​ For additional tools and techniques to help manage your illness, sign up for our "Living with ME/Long-COVID" email series . Topics include: ​ Module 1 - easy instructions for how to apply pacing Module 2 - a practical activity and symptom tracking toolkit Module 6 - biometrics you can measure and track to help with pacing, and the devices and apps that can help. ​ ​ ​ ​ Learn about our free Social Support Groups Pacing videos Videos on pacing in ME/CFS: Pacing tutorial videos: Pacing basics Devices and strategies Special events and relapses ​ ​ Activity intolerance and pacing (Dr. Bateman, Bateman Horne Center) ​ Rocks, pebbles, and sand metaphor ​ Workwell Foundation Pacing Video

Our free support groups Social Support for people living with ME, FM and/or Long-COVID The details The details Our professionally facilitated social support groups are scheduled on the 1st and 3rd Monday of every month (at 1 pm Pacific Time), the 2nd and 4th Wednesday (at 2 pm Pacific Time) and the 4th Thursday of every month (at 5 or 5:30 pm Pacific Time). Our counselors also have private practices that you are welcome to access - private consultations are outside the scope of the ME|FM Society of BC. ​ We also have peer-led social hangouts and facilitated Art Therapy in the month. We aim to create at least one opportunity a week for you to connect with others in the community. These are social support groups, not intended to replace professional medical or mental health care and advice. There is no fee to attend. Registration is open to members and non-members. Group size may fluctuate and is dependent on registration numbers. You can help us plan ME|FM Society of BC Social Support Group offerings through this short 12 question survey . Art Therapy session feedback is collected here . Your comments will be kept confidential and used only for internal planning purposes within the Society. ​ Advanced registration for each session is required. Registration capped at 20. Register / See our schedule What people are saying about our Social Support Groups "It was so moving for me to be a part of this group today, I've been looking for people like me, feeling so alone in my wheelchair, trapped in bed sometimes, and with my struggles." ​ ​ "I couldn't believe there was a meeting full of people who were also housebound much of the time, using mobility aids to get around, trying to live and find meaning with so many limits just like me. I really needed that." ​ See our free "Living with ME/Long-COVID" email series Socal Support Groups Social Support Groups, Hangouts and Art Therapy Social Hangout See calendar below for dates, details and registration. ​ If you are unable to attend a session for which you have registered, please advise us at humanresources@mefm.bc.ca . This will open a space for someone else to attend. Calendar of Events Our Calendar of Events includes Social Support Groups, Social Hangouts, Art Therapy and other society activities. The calendar will be populated one month at a time. Click on each event for its details; scroll down to click on the registration link. Event legend: Social Support Groups Social Hangouts Art Therapy Society Events Calendar of Events Calendar of Events Acknowledgements We acknowledge the financial support of the Province of British Columbia. The ME|FM Society of BC is receiving funding from the community Gaming Grants program to assist the delivery of ME|FM social support groups and other community engagement efforts. ​ ​ We also acknowledge the generous partnership between RBC and the Prince George Hospice Palliative Care Society , the ME|FM Society of BC is providing social support groups for individuals impacted by what is commonly known as Long-COVID, and meeting the diagnostic criteria for Myalgic Encephalomyelitis (ME). Not a Member? Join us! ​After entering in your registration request, you will receive a confirmation email with instructions on how to join the online event. ​ Group size may be limited to facilitate participation. We will keep a waitlist. Dates, structure and format may change over time to suit the community’s needs. Group details Please review our Shared Understandings document prior to the session. We are collecting feedback on our social support offerings here . For any questions about this program, please email support@mefm.bc.ca . ​

Navigating Nutrition with ME/CFS and Long-COVID For those of us living with ME/CFS or Long-COVID, managing nutrition can be a real challenge in multiple ways. There is a lot of confusing or contradictory advice out there, weak scientific evidence for most advice, and some advice that works for healthy individuals that may make our symptoms worse. ​ To make it more difficult, nutrition can be a fraught and personal topic for many people. As one Long-COVID patient in Vancouver says: “There are lots of differing and strong opinions on diet. Low histamine, anti-inflammatory, keto, gluten and dairy free diets. Intermittent and multi day fasting. All so confusing and of course there's no data on any of it for [these illnesses].” There are no clear, proven nutrition answers that work for everyone with ME/CFS or Long-COVID. However, there IS credible evidence for the harms or benefits of certain dietary choices to help with specific issues or symptoms. It is this experience- and evidence-based information we share on this page. If there is something that works for you (or doesn’t!) that we have not covered here, let us know at feedback@mefm.bc.ca . Nutritional Deficiencies and Supplementation There are no supplements that experts agree must be taken by everyone with ME/CFS or Long-COVID. Many experts suggest that most people with these illnesses (unless they have specific, identified deficiencies) should be able to get proper nutrition through diet. See here for an overview discussion of evidence for vitamin use in ME by Dr. Charles Shepherd, ME Association, UK. ​ “With the exception of folic acid, there is little in the way of reliable published evidence to show that people with ME/CFS are deficient in any specific vitamin – provided they are not on a restrictive diet. Much of the ‘evidence’ which supports the use of vitamin supplements in ME/CFS is based on anecdotal reports from vitamin-enthusiast doctors and alternative practitioners. It’s not hard scientific fact.” ​ - Dr. Charles Shepherd, ME Association, UK Challenges with Eating There are a few general challenges some people with ME/CFS or Long-COVID face that it might help to be aware of as you plan how to best stay nourished, eat in ways that help avoid symptoms and crashes, and continue to enjoy food and the preparation of food as often as possible. ​ See here for information and some personal experiences of: ​ Smell, Taste and Texture Sensitivities Difficulty Swallowing or Digesting Caloric Intake Emotional Eating ​ ​ IMPORTANT: ​ Individual responses to diet and supplements can vary greatly among those with ME/CFS or Long-COVID. Make changes slowly, add or eliminate one thing at a time to understand if there is an effect. Only you can be sure what works for you. ​ Consulting with healthcare professionals, such as a registered dietitian or a doctor, is crucial to tailor dietary plans and supplementation to individual needs, and to ensure they do not exacerbate other conditions or interfere with any existing treatments or medications. Challenges with eating Nutritional Deficiencies Despite the lack of “hard scientific fact,” there is some evidence to support the value of certain dietary add-ons for certain deficiencies and symptoms, and taking a good daily multivitamin (with no more than the daily recommended intake for each element) is always an option. Following is a list of some of the vitamins and supplements that have some degree of evidence or strong anecdotal support suggesting they may help for ME/CFS or Long-COVID. You can also ask your doctor if they think you should take a blood test to identify any specific deficiencies. General sources for this section include: ​ National Center for Biotechnology Information: U.S. National Library of Medicine: National Institutes of Health , Everyday Health , Healthline , National Center for Biotechnology Information: U.S. National Library of Medicine: National Institutes of Health , WebMD , National Center for Biotechnology Information: U.S. National Library of Medicine: National Institutes of Health . And special thanks to PainScale.com for some excellent research and recommendation summaries. REMEMBER: Nothing we present here is medical advice. Always discuss with your healthcare provider(s) before making any dietary decisions or changes. Some of the most recommended and well-reviewed (anecdotal by patients, doctors and/or organizations) supplements for ME/CFS and Long-COVID include the following: Vitamin D3 Folic Acid, B6 and B12 (sometimes B1) Magnesium Omega-3 fatty acids and zinc Coenzyme Q10 (CoQ10) D-Ribose Carnitine Iron ​ See here for descriptions, details, and references for this list of supplements. Supplements List Food Sensitivities Food Sensitivities with ME/CFS and Long-COVID In the previous section, we looked at some supplements that might help. In the section below, we will be looking at dietary considerations to help with a few common comorbidities of ME/CFS and Long-COVID (like Irritable Bowel Syndrome and orthostatic intolerance). ​ In this section, we present a quick overview look at some general and common food sensitivities some people with ME/CFS or Long-COVID may be experiencing. As always, you may have to experiment to understand how food affects your symptoms, and you should always work with your healthcare provider(s) when making dietary decisions. ​ The section below includes both anecdotal and research-based information, and is meant only to help you and your doctor work through what will work best for you.​ ​ A Few General Notes on Food Sensitivities It is common not to know you have food sensitivities because they can produce such a wide array of symptoms – restlessness, anxiety and panic attacks, migraine, joint pain, fatigue, brain fog, insomnia, nightmares, rashes, and malaise – that they might not be recognized in a person with the usual broad spectrum of ME/CFS or Long-COVID symptoms. You may want to avoid commercially available tests that claim to diagnose food hypersensitivity, as these often have no scientific basis. You may decide to remove certain foods from your diet (often called an “exclusion diet”). But, overly restricting your diet may make you vulnerable to malnutrition and worsen your symptoms. The key is to find a balanced diet that maximizes nutrients while minimizing adverse food reactions. Get guidance from your healthcare worker(s) and listen to your own body if you think certain foods make your symptoms better or worse. Food sensitivities are more likely to be intolerances rather than allergies , which means that they do not involve the immune system. You may be able to have small amounts of the food without triggering a reaction. (citation ) ​ ​ ​ It is always important to stay hydrated and focus your diet, as much as possible, on whole (unrefined) foods. One BC specialist noted to an ME patient in Langley that you should maintain variety in your diet for general nutrition but also because people with ME have a tendency to become sensitive to foods that they eat repetitively. Some Common Food Sensitivities Some common food sensitivities with ME/CFS and Long-COVID To see extra details, explanations and references for each item in the lists below, see here . Some types of foods and ingredients that many ME/CFS and Long-COVID patients with sensitivities find particularly problematic include: ​ Stimulants coffee, tea, caffeinated sodas, cola, some herb teas, including mate, and ma huang Alocohol wine, beer, hard liquor Sweeteners sugar, corn syrup, sucrose, glucose, dextrose, brown sugar, fructose, aspartame, saccharin Additives artificial colors, artificial flavors, preservatives, MSG Some food groups you might consider thinking about if you still feel you have a food sensitivity you have not identified among the ones at the left (always work with your doctor!): ​ Nightshade family eggplant, pepper, tomato, potato Milk products Gas-producing food onions, cabbage, brussel sprouts, broccoli Spicy foods black pepper, curry, garlic Raw foods Yeast-containing foods brewer’s yeast, fermented products, mushrooms, aged cheese, some B vitamins Acid foods fruits, tomatoes, vinegar Soy products Animal fats ​ Comorbidities and Diet Comorbidities such as POTS (or other orthostatic intolerances), and Fibromyalgia (FM) are common among those with ME/CFS or Long-COVID. Sometimes, special diets (or adding/limiting certain foods/supplements) can help to manage these conditions. If you decide you want to try out some changes to your current diet: Work with your healthcare providers (and dietitians, if you like) to identify any comorbidities and develop a relevant personalized diet. ​ ​ Be aware of all your health issues. You may need to adjust your diet to address more than one requirement (ex: a diet to help with both type 2 diabetes and gastrointestinal sensitivities). ​ ​ Supplements should only be taken under the guidance of a healthcare professional to ensure they are necessary, used safely and at the appropriate dosage, and do not interact negatively with other medications. ​ ​ ​ Previous sections of this module have discussed general challenges with eating , nutritional deficits and supplements , and food sensitivities with ME/CFS and Long-COVID. Here we provide some information and ideas on nutrition and diet for some common comorbidities: ​IBS (Irritable Bowel Syndrome) and Diet Fibromyalgia (FM) and Inflammation Migraines and Headaches OI/POTS (Orthostatic Intolerance/Postural Orthostatic Tachycardia Syndrome) Multiple Chemical Sensitivities (MCS) Comorbidities and Diet Food Prep Food Preparation Shopping for groceries and preparing meals can be a challenge with ME/CFS and Long-COVID. If you have specific food sensitivities or dietary restrictions, it can be even harder. See HERE ... ...for some strategies that can help with shopping, meal prep, and working in and around your kitchen. ​ For some fun food ideas from one of our friends in Langley with ME, as well as some excellent low-FODMAP recipes and links: ​ See HERE

Volunteer/advocate We are always looking for people with a variety of skill sets to help our Society. Sign up for general volunteer opportunities or contact us at humanresources@mefm.bc.ca . Current opportunities: Fundraising Coordinator My MLA and ME campaign advocates How we operate and why we need volunteers Our Society is driven by volunteers. Your actions, whether big or small, have a significant impact in furthering our cause to improve the quality of life for those living with Myalgic Encephalomyelitis. Long-COVID or Fibromyalgia . We work with volunteers who have all sorts of talents, capabilities, and may also be patients with various levels of ability or time commitment. That's ok! We need everyone! Contact us to let us know you're interested in volunteering. We'll get back to you to talk about where you might fit best! If you have ideas about how you might like to contribute, feel free to let us know! Our volunteers also assist in various committees. Currently, we have the following committees: Finance Advocacy Fundraising Human Resources Research/Special Projects Become a volunteer Advocacy Our MLA and ME outreach campaign relies on advocates to assist in raising awareness among our province's MLAs. ​ Learn more about becoming an advocate and making a difference for our ME/Long-COVID community.

Board of Directors Hilary Robertson, Co-Chair Bio Amy Andreasen Bio Kirsten Boomer Bio Barb Ruscheinski, Co-Chair Bio Gavin Chung Bio Sheri Li Bio Sue Khazaie Bio Kelly Lautt Bio Apply to become a Director Our team Board of Directors Our staff Alana Newton Social Support Group Host Shannon Gold Social Support Group Host Jessie Hebert Social Hangout Host Need support? Our Staff Society committees Advocacy Finance Exec Team Research Human Resources Fundraising ​Our wonderful volunteers Volunteer Now Many thanks to the volunteers who make our work possible. Most are living with ME or FM, donating not just their time, but also their precious energy "spoons" to help improve the lives of others. Our volunteers are not only the fuel of our Society, but our inspiration.

FM Symptoms & diagnosis Common FM symptoms 1/1 ​Widespread pain The widespread pain of FM is often described as aching, burning, throbbing, gnawing, shooting and tingling. It can be localized, generalized, can feel like muscle spasms and can be scattered throughout the body. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Fatigue The fatigue of FM is much more than just being tired. People with FM have described it as feeling like all their energy has been drained away. It can be so profound that it interferes with even the simplest of daily tasks and activities. Sometimes the fatigue can come on suddenly for no apparent reason and be very debilitating. After short periods of exertion, a person may require long periods of rest to recuperate. Non - restorative sleep Sleep difficulties may be described as not being able to fall asleep, frequent night awakenings, unrefreshing sleep or waking up feeling as if you haven’t sleep at all. Sleep studies show a deep-sleep anomaly in patients with FM. Learn about our free Social Support Groups Other common symptoms Cognitive and memory problems Includes memory lapses, problems with concentration and comprehension, brain fog. Irritable bowel syndrome Frequent diarrhea and/or constipation, abdominal pain, gas and nausea. Morning stiffness Often lasts for hours. Chronic headaches and jaw and head pain Related to the muscles and ligaments surrounding the Temporomandibular Joint (TMJ). Join us in making a difference - Become a Member now Some other symptoms that are often reported include Muscle spasms and weakness, restless legs, disequilibrium, sensitivity to noise or other stimuli, light cold and drafts; itching skin, numbness or tingling in the hands or feet, irritable bladder, clumsiness, non-cardiac chest pains and multiple chemical sensitivities. ​ What worsens symptoms? Symptoms may be aggravated by changes in the weather, stress and either too much or too little activity. Flare-ups frequently occur a day or two after an activity and may take several weeks to settle down again. It is often difficult to determine what causes the symptoms to flare, which makes the condition so unpredictable and difficult to regulate. Diagnosis Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Diagnosis (2 pages) ​ Canadian Rheumatology Association Fibromyalgia Guidelines for Diagnosis Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Basic work-up recommendations ​

Assistive Devices and Activity Modifications Practical tools, devices and strategies for easier living with ME/CFS and Long-COVID With ME/CFS and Long-COVID, simply making it through the day can be a challenge. You may be limited by fatigue, weakness, brain fog, pain, dizziness and/or a limited amount of available energy for the day. But, even with a concerted effort to control and limit “must-do” activities, many of us still have work, chores or basic responsibilities to tackle. ​ Each task or activity uses some of our limited energy and may also risk triggering specific symptoms (such as pain) or even a general crash. Here, we take a look at devices and strategies that can help: reduce the energy required for specific activities make certain tasks or chores easier decrease the likelihood of triggering individual symptoms or a general crash help you stay within your daily energy envelope. Using the tools and tips here may help you to stabilize symptoms, regain some sense of control over your illness’s limitations, or even preserve some energy for priorities like hobbies or family. Devices and Strategies to Make Living with ME/CFS and Long-COVID a Little Easier General Illness Management Tracking your health Energy management Symptom management ​ Daily Chores Cooking Cleaning Laundry ​ ​ Hobbies and Socializing Hobbies Socializing Illness-related groups Rest Position (sit/recline) Sensory stimulation ​ ​ Mobility Walking Car rides Outings ​ ​ Managing Severe Illness Environment Comfort Self care Self Care Washing/showering Bathroom Hair and shaving Products Organization Note and reminders Scheduling Organization Brain fog management Devices and Strategies

What is Fibromyalgia (FM)? See our FAQs Introduction What is FM? Fibromyalgia, FM, is a chronic illness that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping. People with FM do not experience post-exertional malaise (PEM), as seen in ME and Long-COVID. Fibro = Fibrous tissue My = Muscle Algia = Pain Who can get FM? FM can affect children and adults. However, most people are diagnosed mid-life. FM often occurs after a significant event, such as severe illness or infection, physical trauma (such as surgery or a car accident), or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Impact of FM FM symptoms, such as chronic pain, sleep and/or cognitive dysfunction, can result in disability from work-life and/or activities of daily living. Also, like ME and Long-COVID, FM greatly impacts quality of life. ​ FM pain can vary from person to person. Pain can also vary in location and intensity on a daily or hourly basis. Learn about our free Social Support Groups Overlap of FM, ME and Long-Covid There is some overlap and similarity in symptoms between Myalgic Encephalomyelitis (ME), Long-COVID, and Fibromyalgia (FM), but these are distinct conditions with different diagnostic criteria. FM is also the most common comorbidity of ME, with an estimate of over 35% of Canadians with ME also having FM. ​ While ME, Long-COVID and FM can all include symptoms of fatigue, cognitive impairment and pain, FM does not usually manifest with post-exertional malaise (PEM, or worsening of symptoms with physical, cognitive or emotional exertion), one of the hallmark symptoms of ME and Long-COVID. Register for our News Updates General information Healthlink BC Tender points diagram ​ Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital ​ Bateman Horne Centre (USA) ​Fibro-”flare” Frequently asked questions ​ Arthritis Society of Canada ​ Become a member Learn about our free Social Support Groups Treatments and resources PainBC Self management support and programing HealthLink BC Fibromyalgia Treatments ​ Complex Chronic Diseases Program (CCDP), BC Womens and Childrens Hospital Patient resources ​

ME/Long-COVID Symptoms & diagnosis Symptoms of ME and Long-COVID Hallmark Symptoms for ME and Long-COVID ​Additional symptoms that may occur with both Joint and general body pain; headache ​ ​ Light, sound, smell, vibration, touch, chemical, and food sensitivities ​ ​ Fever-like symptoms, sore or swollen glands, sore throat, tinnitus ​ ​ Cardiovascular symptoms, like rhythm irregularities ​ ​ ​ Feeling of lack of oxygen (air hunger) ​ ​ Digestive issues (bloating, abdominal pain, nausea, diarrhea, or constipation) ​ ​ Sweating, chills, trouble with heat or cold ​ ​ Rashes and swelling ​ ​ ​ Effective functions (emotions) can be altered, and anxiety and mood changes may range from mild to severe. Depression may also occur, as a reaction to, rather than as a cause of ME. View printable version of Symptoms of ME and Long-COVID For diagnosis, must have all of: Extreme Fatigue that is not improved by rest and interferes with daily activities ​ ​ Post-exertional malaise (PEM) - a worsening of symptoms after physical, mental, or emotional effort ​ ​ Unrefreshing or disturbed sleep Must also have at least one of: Cognitive impairment (brain fog), such as problems with memory, concentration, thinking, or speaking ​ ​ Orthostatic intolerance - a feeling of lightheadedness, dizziness, imbalance, or fainting when standing or sitting up ​ Additional symptoms that are common with Long-COVID Cough, chest pain, trouble breathing ​ ​ Persistent loss of taste or smell ​ ​ ​ ​ ​ Hallmark Symptoms for ME..... Challenges with diagnosis It often takes years or decades to get an ME diagnosis and the CDC estimates that over 90% of people with ME in the US remain undiagnosed or misdiagnosed, and this is likely similar in Canada. “The path to an ME diagnosis is often lengthy and challenging… with few practitioners knowledgeable or confident to diagnose” (p.15 ). In a 2021 report , 83% of healthcare workers in BC reported no to moderate knowledge of ME. They also had very low confidence in their ability to diagnose ME, with 76% stating they had no confidence to diagnose. With the increased awareness around Long-COVID, diagnosis for both illnesses may become less challenging. CAUTION! Functional Capacity Evaluations or FCEs are not recommended for people with ME/CFS. The test may not work The results of FCEs are likely incorrect or invalid (will significantly overestimate functioning) in people with ME/CFS. The test may cause a crash The test itself poses a serious risk of triggering PEM (post exertional malaise, or a worsening of symptoms immediately or 12-48 hours after exertion), that may not be evident for a day or more. The test may contribute to permanent worsening of your illness Triggering PEM can cause an immediate crash and triggering PEM too hard or often may lead to a permanent or long-term worsening of your illness. These conclusions should apply equally to those with Long-COVID who exhibit exercise intolerance and PEM. Path to diagnosis Both ME and Long-COVID have no single test or biomarker to confirm diagnosis. This means that both illnesses are diagnosed: 1. by a list of symptoms, that may be very different day to day and person to person (see above ). ​ ​ 2. by excluding other illnesses that have common or overlapping symptoms. There are tests that can help. Note: Diagnosis requires persistence of symptoms for several weeks 6 months for adults for ME 3 months for children for ME 3 months for everyone with Long-COVID). ​ There are available tools for your doctor, such as the symptom list above , a summary on the healthlinkbc website adapted from a National Academies clinician’s guide (previously IOM, 2015) , the Canadian Consensus Criteria for ME, the National Institute for Care and Excellence, (NICE, 2021) and the WHO Clinical Case Definition for Long-COVID . ​ If they are comfortable to do so, your GP can give you a diagnosis. Learn about our free “Living with ME/Long-COVID” email series Forgotten Plague Informative documentaries What happens when you have a disease doctors can't diagnose​ Unrest

Our goals Introduction Our purpose is to educate, raise awareness, advocate for and provide support to the ME and FM community in BC; the need is great. There is a severe shortage of knowledgeable doctors and health care professionals resulting in very little patient access to care, treatment and management tools. Patients are confronted by stigma at all levels of the health care system, waiting years to receive a proper diagnosis and experiencing barriers to receiving disability benefits. Join us in making a difference - Become a Member! The Society's primary goals are to: Educate, inform and increase awareness of Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM) . ​ Build an inclusive organization which will reasonably accommodate and allow the participation of ME and FM patients, as well as their carergivers and families, to the extent they are willing and able. Provide information and education for physicians, other medical professionals and the community at large, to increase public awareness of Myalgic Encephalomyelitis and Fibromyalgia. Promote and fundraise for ongoing medical research to encourage early, accurate diagnosis and effective treatments for ME and Fibromyalgia. Champion issues impacting the lives of people with ME and FM through community partnerships and advocacy with local, provincial and federal stakeholders and decision-makers. Liaise with other individuals, groups and organizations to achieve the goals of our Society. Donate now

Long-COVID & ME Is there a connection between Myalgic Encephalomyelitis and Long-COVID? Researchers have estimated that approximately 80% of ME/CFS cases are infectious in origin, often following a virus such as Epstein Barr, West Nile or Influenza. Some now believe that the SARS-CoV-2 virus, which causes Coronavirus disease (COVID-19), could also contribute to the development of Myalgic Encephalomyelitis . ​ Many individuals living with Long COVID report symptoms that resemble ME/CFS, most notably post-exertional malaise, cognitive dysfunction and persistent exhaustion. Five studies (below) have estimated the prevalence of ME/CFS within Long COVID to be over 40%. A 2021 study estimates that up to 400,000 Canadians (or 80,000 British Columbians) may have newly developed ME/CFS from Long-COVID in 2022/23 alone, almost doubling the number of people with ME/CFS in Canada. See the research on the ME/Long-COVID Connection 1 Similar biomarkers 2 ½ of LC patients meet ME criteria 3 Overlap in diagnosis 4 Overlapping symptoms 5 Some people with LC also have ME Learn about our free "Living with ME/Long-COVID" email series Support for those living with Long-COVID The ME|FM Society of BC supports those living with ME, Long-COVID and other post-infectious illnesses. - Sign up for our free "Living with ME/Long-COVID " email series - See our Pacing and energy management resources - Join our online support groups that welcome Long-COVID patients suffering from chronic exhaustion, worsening symptoms after mental or physical activity, cognitive dysfunction ("brain fog"), sleep troubles, pain and other symptoms. Register for our News Updates What are experts and researchers saying? Dr. Anthony Fauci (US National Institute of Allergy and Infectious Diseases Director and US Coronavirus Task Force member) described in several interviews that people who are not recovering after contracting COVID-19 are showing symptoms “that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome”. Dr. Alain Moreau, the Director of ICanCME (a CIHR funded research network for ME/CFS in Canada), discussed in The Scientist that “with this very severe COVID-19 disease, where we’re now dealing with millions of people suffering from it worldwide, the question is not if [some] will develop ME/CFS—it’s how many.” Canadian Institutes for Health Research (CIHR) hosted a webinar on ME/CFS and Long COVID with Dr. Nina Muirhead (UK). Dr. Muirhead comments that “ME clinicians who have been seeing ME patients for a long time can see the similarities in the Long-COVID patients coming in” and that “we do expect a subset of long COVID patients to develop post viral ME”. The NIH’s National Institute on Neurological Disorders and Stroke (NINDS) published an article outlining the overlapping symptoms between Post Acute Covid Syndrome (PACS) and ME/CFS, and the connection on its COVID-19 webpage. ​ In the Media Excellent articles about COVID “long haulers” developing ME/CFS in: ​ CTV The Scientist TIME magazine New York Times Vox Magazine Globe and Mail Maclean's Scientific American Selected published research Here is a sample of the research linking ME/CFS with Long-COVID. For more research, please follow this search string to the NIH Pubmed Database: myalgic encephalomyelitis AND covid - Search Results - PubMed (nih.gov) ​ ​ Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-A Systemic Review and Comparison of Clinical Presentation and Symptomatology - PubMed (nih.gov) ​Frontiers | Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? | Medicine (frontiersin.org) ​ ​ ​Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov) ​Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome - PubMed (nih.gov) ​ ​Pediatric Long COVID and Myalgic Encephalomyelitis /Chronic Fatigue Syndrome: The Pediatric Infectious Disease Journal (lww.com) Learn about our free "Living with ME/Long-COVID" series International advocacy Long COVID & ME: Understanding the Connection - #MEAction Network ME/CFS Clinician Coalition letter to US clinicians urging them to consider ME/CFS as a differential diagnosis for long haulers.

MLA resources BC MLAs are giving voice to ME patients and their issues - we thank you! Helpful resources Briefing note: Need for Early Diagnosis (May 1, 2023) ME|FM Society of BC Board letter to Adrian Dix (October 1, 2021) Backgrounder: a four-page summary of the provincial issues (April 2021) ​ ​ ME - A Clinical Case Definition and Guidelines for Medical Practitioners: An overview of the Canadian Consensus Document (2005) ME|FM Society of BC letter to Adrian Dix (June 22, 2022) Briefing Note: Diagnosis and Billing Codes for ME (Sept. 15, 2021) Briefing Note: a two-page synopsis of the issues (April 13, 2021) ​ Ministry of Health response to October 1, 2021 letter (Nov. 5, 2021) Briefing Note: Physician CME for ME (Sept. 15, 2021) "Unrest" movie: Jennifer Brea's Academy Award-Nominated movie documenting her journey with ME (January, 2017) Contact us Our research M.E. in BC: How the Healthcare System for M.E. Impacts Clinicians and Patients : Report on a preliminary project examining the unmet needs of British Columbians living with Myalgic Encephalomyelitis (ME) (2021) Short Report Long Report Summary Graphic My MLA and ME advocates Some of our My MLA and ME volunteers Siobhan B 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 K 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. Janice B 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. Kelly L 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. Jana S 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. Claudia K 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.” Contact our Advocacy Committee