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 ressources ​ ​ ​ ​ ​ ​ 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

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

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.

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

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.

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. 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 . ​

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

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.

"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

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

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