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

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

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 are likely 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, everyone still has 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

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 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

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

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.

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

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

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) Understanding and applying for the Disability Tax Credit The ME|FM Society of BC is pleased to have partnered with Disability Alliance BC to prepare introductory information on applying for the Disability Tax Credit (DTC). This recording reviews eligibility criteria, helpful tips and what to expect, as well as examples for ME|FM. Also introduced is an online tool the Disability Alliance of BC developed to support completing the DTC form. ​ The purpose of this recording is to provide introductory information for you to watch, rewind and rewatch, or send to someone who is helping you with the paperwork. The Complex Chronic Diseases Program hosts live information sessions with Disability Alliance BC on the DTC. Our recording may be a helpful complement to this session, or support those who can’t attend a live session. ​ Disability Alliance BC also provides 1:1 consultations for application support. Our recording may be a helpful complement to watch prior to your consultation. For more information about the DABC, please visit their website . We gratefully acknowledge the support from the Wickerson Foundation for the continuation of our educational sessions and webinars. ​ Rogers Communications Services ​ Rogers Communications lists a number of accessibility services and solutions to try to better support communication in the community. A number of offerings are listed on their website. Additionally, Rogers customers with an accessibility need or a disability, may be eligible for a discounted Wireless plan ($20/month discount). For more information, visit: Accessibility – Services, Products & Solutions | Rogers Good news from Telus! TELUS is expanding its "Internet for Good" program to people living with disabilities who receive financial disability assistance from the provincial governments in British Columbia and Alberta. TELUS’ "Internet for Good" program provides high speed broadband Internet at home for only $9.95 per month. Since 2016, the program has been available to families receiving the Canada Child Benefit from the federal government. To support more Canadians, TELUS has expanded the program’s eligibility to also include more than 110,000 British Columbians and 69,000 Albertans living with a disability and receiving provincial disability benefits. This program expansion comes at a particularly critical time as the evolving COVID-19 pandemic has demonstrated how important it is to have a safe and reliable connection at home. Read more ... Other resources Bateman Horne Centre Medical considerations when treating urgently ill patients with underlying ME/CFS ​ Government of Canada Disability Benefits Listing of various federal government disability benefit programs and plans. MS Resource Manual 2020 BC & Yukon Division Many resources are applicable for ME and FM patients. ​ Human Rights in British Columbia Fact sheet on discrimination against people with physical or mental disabilities. ​ Human Rights 101 The law and particular cases relevant to people with ME and FM. Recorded 2018 . Disability Alliance of BC Disability Law Clinic Summary Advice and Referral Service which is a free, confidential legal service.

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

Board of Directors Hilary Robertson, Co-Chair Bio Amy Andreasen Bio Kirsten Boomer Bio Barb Ruscheinski, Co-Chair Bio Gavin Chung 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.

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