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

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 ​

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 ​

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.

Healthcare provider education: ME Symptom management & referral Caring for patients with ME/CFS DONATE NOW Bateman Horne Centre Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Centres for Disease Control (US) While there is no cure or approved treatment, some ME/CFS symptoms can be treated or managed (2021) ME Association (UK) Dysfunctional ANS in ME/CFS (2018) ​ ME Association (UK) Assessing Post Exertional Malaise in ME/CFS (2019) ​ ​ ​ ME Association (UK) What Naltrexone is, how it works, what it’s used for and why it might be useful as a treatment for ME/CFS.(2019) ME Association (UK) ​ Abnormal cardiac changes in ME/CFS not due to deconditioning (2018) View: Our free "Living with ME/Long-COVID" email series ME/CFS Crash Survival Guidebook: The Art of Living with ME/CFS The guidebook can be viewed online, downloaded, or printed – in color or black and white. Designed for patients, allies supporting patients and for medical providers, this guidebook aims to help the individual prepare in advance for a crash/PEM episode, ensuring their critical needs are met. It offers guidance in carrying out everyday living activities that support energy conservation with ME/CFS. Learn about our free Social Support Groups Harm of exercise in ME/CFS Workwell Foundation's letter to healthcare providers Opposition to Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) for ME/CFS Editorial Studies and surveys implicate potential iatrogenic harm of CBT and GET for ME/CFS patients Apply to participate in our Interdisciplinary Advisory Committee Pacing management Pacing and Management Guide for ME/CFS Pacing Tutorial (aimed for patients, intro for clinicians to support patients) Pacing Resources ME Action's Pacing and Management Guide for Paediatric ME/CFS and Long COVID Receive our News Updates Surgical considerations for ME patients Anesthesia or surgery Patients with POTS ​ ​ Dental procedures Anecdotally, many with ME are sensitive to epinephrine in dental freezing, causing reactions and occasionally, relapses. Provincial referral support* Complex Chronic Disease Program (BC Women’s and Children’s Hospital, Vancouver) *Please consider waitlists are lengthy for patients to be seen. Physician to physician consultations may be available to support family physicians. ​ The CCDP also publishes a Community and Financial Resources in BC Guide (updated June 2022). Join us in making a difference - Become a member Education opportunities Learning Module from Dr Nina Muirhead for Healthcare Professionals on ME/CFS and Long Covid | The ME Association Medical Education Webinar: Myalgic Encephalomyelitis - Diagnosis, Management and Current Research Donate now CPD Module 1hr - Case Studies on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD ​ ​ ME in BC: How the healthcare system for ME impacts clinicians and patients A Physiotherapist's Guide to Understanding and Managing ME/CFS The book’s primary audience is all physiotherapists, not just those who work in ME services, as it contains information relevant to any physiotherapy practice that must be adapted to work safely with people with 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). ​ ​ Other considerations Specialist referrals for co-morbities POTS/Orthostatic Intolerance Mast Cell Activation Syndrome (MCAS) Gastrointestinal symptoms, IBS Referrals for in-home visits OT home assessment/support In-home lab services Easy ways to support the ME, Long-COVID and FM communities

How we are funded The ME|FM Society of BC finances its activities through membership fees, tax deductible donations, grants, fundraising events and bequests. While the majority of the activities of the Society are undertaken by a small, dedicated group of volunteers, we rely on all our funding sources to increase our support programs, hire consultants and meet administrative expenses. Sponsors We are profoundly grateful to the Ko family and Opera Mariposa for gifting us the proceeds of annual fundraising events, and to The Wickerson Foundation for their ongoing support of our work. ​ We also acknowledge the generous partnership between RBC and the Prince George Hospice Palliative Care Society. With this support, the ME|FM Society of BC is piloting a series of social support groups including individuals impacted by what is commonly known as Long-COVID, and meeting the diagnostic criteria for Myalgic Encephalomyelitis (ME). Inquire about becoming a sponsor ​Recent accomplishments The Convene Project A preliminary project examining the unmet needs of British Columbians living with Myalgic Encephalomyelitis. The My MLA and ME outreach campaign Click here for resources . ​ Support Groups The implementation and expansion of support groups for Patients, and Allies and Loved Ones. Our updated website New logo, branding, navigation and layout. Updated content. ​ Donate now Most recently, we have used funding from membership, donations and grants to accomplish the following. For up-to-date news on these and other initiatives, click here . Membership We are always seeking to grow our membership and we encourage everyone to join. Choose the membership type most suitable for you. Membership types and voting rights are explained here . Our membership year is from October 1 to September 30 of the following year. ​​​​ We manage our membership database and donations through a program called MemberPlanet. Membership types and annual fees Individual $30 Sponsored $0* Non-Profit $100 Affiliate $10 Professional $50 Corporate $250 Join us now Grants Learn about our free Social Support Groups In the last several years, the ME|FM Society of BC has received research grants from the BC Women's Hospital , The Vancouver Foundation , and the BC SUPPORT Unit Fraser Centre . In addition, program funds were received from BC Gaming . 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 social support groups and other community engagement efforts.

Ways to donate Donations The Society is a registered charity and all donations are gratefully accepted, regardless of the amount; however, tax receipts are provided for all donations over $20. When you give a gift, your generosity impacts the lives of those living in BC with ME and/or FM. Donate Now because patients have waited long enough. Donate Now Your donations may be used to: Support continuing research projects and collaborations. ​ ​ ​ Continue to provide and enhance our existing patient support programs. ​ ​ Develop education directed to our BC clinical communities, people living with ME|FM and their families. Donate now Legacy Why leave legac y funds? ​ ​ A planned gift to ME|FM Society of BC is an effective way to honour yourself and loved ones, and to help us pursue our goals. A charitable receipt can lower estate taxes. ​ ​ How to leave legacy funds Consider leaving a dollar amount or a percentage of your residual estate (what is left when all debts are paid and gifts are made). Consider altering your will or adding a codicil. ​ Contact your lawyer or notary to facilitate your wishes. ​ ​ If you choose to leave a legacy to us, please note ​ Legal name: ME|FM Myalgic Encephalomyelitis and Fibromyalgia Society of BC Mailing address: PO Box 46879 Stn D, Vancouver, BC V6J 5M4 Registered BC Charity number: 893185173RR0001. Suggested language for your legacy ​ "I, ______(your full name)_____, give to ME|FM Myalgic Encephalomyelitis and Fibromyalgia Society of BC, Registered BC Charity number 893185173RR0001, _____________ (enter a lump sum or % of the residue of my estate), to be used at the discretion of the society." ​ For more information on leaving a legacy click here

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