IMHA Online Resource Library

IMHA’s Online Resource Library is intended as a portal to relevant information on conditions that fall within the purview of IMHA. Each topic contains links to organizations, websites, articles, videos, books and journals. We thank our IMHA Research Ambassadors who contributed their valuable time and insight to complete this project.

CIHR

Overview Documents, Videos, Infographics

IMHA

IMHA Facts & Figures

CIHR-IMHA is one of thirteen institutes at the Canadian Institutes of Health Research, Canada’s federal funding agency for health research. CIHR-IMHA’s mandate is to support ethical and impactful research to enhance active living, mobility and oral health, and to address the wide range of conditions related to bones, joints, muscles, connective tissue, skin and teeth.

Disclaimer: The IMHA Online Resource Library is offered for general information purposes only and does not constitute medical or professional advice. Links to other sites are provided as a reference to assist you in identifying and locating other resources that may be of interest and do not constitute an endorsement of any viewpoints expressed. Content on this site or through any link is provided on an "as is" basis. IMHA and by the Canadian Institutes of Health Research (CIHR) do not warrant or guarantee the quality, accuracy or completeness of any information on this web site or on other sites - nor do we recommend or endorse any organization, work, product, service identified on this site or any other. IMHA, CIHR, as well as their respective employees and agents shall not be liable for any damages, claims, liabilities, costs or obligations arising from the use or misuse of the material contained in this website or a linked site.

Please note: The following links point to websites of organizations not subject to the Official Languages Act, and, as such, information contained therein is available in the language in which it was written.

  • Arthritis

    Organizations:

    • Arthritis Society
      The Arthritis Society is a national health charity, fueled by donors and volunteers, with a vision to live in a world where people are free from the devastating effects that arthritis has on lives.
    • Arthritis Types A-Z
    • Navigation Guide: Information to help navigate through arthritis
    • Arthritis Society Facebook
    • Participate in Arthritis Research
    • Arthritis Alliance of Canada
      Formed in 2002, the AAC's goal is to improve the lives of Canadians with arthritis. With more than 35 member organizations, the AAC brings together arthritis health care professionals, researchers, funding agencies, governments, voluntary sector agencies, industry and, most importantly, representatives from arthritis consumer organizations across Canada.
    • Canadian Arthritis Patient Alliance (CAPA)
      The Canadian Arthritis Patient Alliance (CAPA) is a grass-root, patient-driven, independent, national advocacy organization with members across Canada and supporters both Canadian and International.
    • Arthritis Research Centre of Canada
      Arthritis Research Canada (ARC) was created in 2000 in recognition of the tremendous potential that research can bring to arthritis treatment in Canada, and the world. ARC has earned international attention as a leading arthritis research environment, building a strong multi-disciplinary research team of outstanding medical doctors and research scientists.
    • Canadian Spondylitis Association (CSA)
      The Canadian Spondylitis Association is a national, non-profit, patient association formed in April 2006 to support and to advocate for those suffering from spondyloarthritis diseases including: ankylosing spondylitis, psoriatic arthritis, undifferentiated spondyloarthritis, enteropathic arthritis, reactive arthritis, and juvenile onset arthritis.
    • JointHealth
      Arthritis Consumer Experts (ACE) is Canada’s largest national patient-led arthritis organization and leading provider of evidence-based education and strategic, sustained government advocacy. Through the JointHealth™ family of programs and the Arthritis Broadcast Network, ACE has served a broad arthritis community – young, middle-aged and old – whose needs can change within a week or even a day. ACE provides Canadians with arthritis breaking news, research and policy recommendations to help take control of their experience with this disease.
    • Arthritis Foundation

    Websites:

    Articles:

    Videos:

    • Inflammatory Arthritis Medications Simplified (Arthritis Society)
      “Whiteboard” video provides a high-level explanation of what inflammatory arthritis is, and how the different medications that are used to manage inflammatory arthritis work.
    • Yoga for Rheumatoid Arthritis (Arthritis Society)
      "People Getting a Grip on Arthritis" provides practical information and strategies for people with living with arthritis to help to better manage their condition.

    Other Resources:

  • Bone Health

    Organizations:

    • Osteoporosis Canada
      Osteoporosis Canada is the only national organization serving people who have, or are at risk for, osteoporosis. The organization works to educate, empower and support individuals and communities in the risk-reduction and treatment of osteoporosis.
    • National Osteoporosis Foundation (NOF)
      Established in 1984, NOF is the United States only health organization dedicated to osteoporosis and bone health.
    • 4 Bone Health
      General information related to bone health or for more specific guidance on issues related to osteoporosis or osteopenia. Insights on osteoporosis for people of all ages.
    • The International Osteoporosis Foundation (IOF)
      The International Osteoporosis Foundation (IOF) is a registered not-for-profit, non-governmental foundation based in Switzerland. It functions as a global alliance of patient societies, research organizations, healthcare professionals and international companies working to promote bone, muscle and joint health.
  • Connective Tissue Health

    Organizations:

    Websites:

    Articles:

  • Myalgic Encephalomyelitis (ME)

    National Organizations:

    • Action CIND
      Action CIND is a Canadian charitable organization that is dedicated to myalgic encephalomyelitis (ME), fibromyalgia (FM), chronic fatigue syndrome (CFS) and multiple chemical sensitivity/environmental sensitivities (MCS/ES) through research, education, support and services.
    • National ME/FM Action Network
      The National ME/FM Action Network became a Canadian charitable organization in 1993 and is dedicated to myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) through support, advocacy, education and research.
    • Millions Missing Canada
      Millions Missing Canada (MMC) is a non-profit organization that advocates for Canadians living with myalgic encephalomyelitis (ME). MMC works to stop medical harm, fund biological myalgic encephalomyelitis research, and start access to appropriate testing and treatment.

    Provincial Organizations:

    • Alberta
      M.E. Society of Edmonton
      The M.E. Society of Edmonton is a charitable organization founded in 1991 with a vision to promote an understanding of the diseases myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Operated by a volunteer Board, the Society educates medical and legal professionals, advocates for better treatment and services for those with ME and/or CFS and supports patients, families and caregivers.
    • British Columbia
      ME/FM Society of BC
      The ME/FM Society of BC is a charity, run by patients, carers and their families, formed to help and support patients with myalgic encephalomyelitis (ME) and/or fibromyalgia (FM).
    • Ontario
      Waterloo Wellington Myalgic Encephalomyelitis Association (WWMEA)
      The Waterloo Wellington Myalgic Encephalomyelitis Association (WWMEA) is a registered charitable organization (not-for-profit) that provides support and information for those affected by myalgic encephalomyelitis.
    • Québec
      Association québécoise de l’encéphalomyélite myalgique (AQEM) (only in French)
      Notre mission est de faire connaitre et reconnaitre l’encéphalomyélite myalgique (maladie aussi connue sous le nom de syndrome de fatigue chronique), d’aider les personnes atteintes ainsi que de contribuer à promouvoir la recherche.

    International Organizations:

    • Open Medicine Foundation (OMF)
      The mission of the Open Medicine Foundation (OMF) is to fund and initiate collaborative and ground-breaking research into chronic complex diseases so that patients will be able to live life more fully.
    • EUROMENE
      EUROMENE is the acronym for European Network on ME/CFS, which is a COST Action project. The EUROMENE aims to assess current knowledge and deliver information on the burden of disease in Europe, potential biomarkers, clinical diagnosis and management, and potential treatments to care providers, patients, and other stakeholders.
    • IACFSME (International Association for CFS/ME)
      The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and fibromyalgia (FM) research, patient care and treatment. In addition, the IACFS/ME periodically reviews current research, treatment literature and media reports for the benefit of scientists, clinicians and patients.
    • Solve ME/CFS Initiative
      The Solve ME/CFS Initiative (SMCI) seeks to actively engage the entire myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.
    • Invest in ME (UK)
      An independent UK charity dedicated to find funding and facilitate a strategy of biomedical research into myalgic encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3 and promoting better education about this condition.
    • ME Research (UK)
      ME Research UK is a charity with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).
    • ME Association (UK)
      The ME Association aims to support people with myalgic encephalomyelitis and chronic fatigue through all stages of their illness.

    Websites:

    • Chronic Fatigue Syndrome (Myalgic Encephalomyelitis)
      Government of Canada (2017) website listing symptoms, causes, diagnosis, treatment, risk factors and useful links regarding chronic fatigue syndrome and myalgic encephalomyelitis.
    • MEPedia - Myalgic Encephalomyelitis
      MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. It is a crowd-sourced knowledge base on the history, science and medicine of myalgic encephalomyelitis, chronic fatigue syndrome and related diseases.
    • MEPedia Primer for Doctors and Researchers
      A wiki resource for health care professionals on myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), including onset and course of the illness, epidemiology, evidence of disease, history, treatments and notable studies.

    Articles:

    Videos:

    • Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Symdrome
      (With Dr. David Kaufman)
      This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership withMEAction. US medical providers can visit Unrest to register to watch Unrest online for free and receive Continuing Education credit.
    • Bateman Horne Centre - Online Educational Series
      A six-part educational video series designed to empower patients and their advocates with the tools to communicate with their healthcare providers.
      • Video 1: Getting the Right Diagnosis
        Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) present as complicated illnesses and getting the right diagnosis can be challenging or seem like an impossibility. Learn how to recognize these diseases and other conditions that may play a role in illness presentation.
      • Video 2: Activity Intolerance & Post-Exertional Malaise
        Activity intolerance and post-exertional malaise (PEM) are often misunderstood aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.
      • Video 3: Restorative Sleep
        Poor sleep is a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Not getting a good night’s sleep can worsen symptoms. Dive into the mechanics of good sleep with Dr. Bateman and learn why sleep disturbances occur and how to implement strategies that improve them.
      • Video 4: Chronic Widespread Pain
        Pain is one of the most troubling and hard-to-manage symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Dr. Bateman teaches about the various types of pain, how pain is amplified, and treatment strategies to improve your own pain management.
      • Video 5: Cognitive Impairment
        People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) often suffer from cognitive impairment that can lead to brain fog, trouble word finding and more debilitating symptoms. In this class, you will understand the types of cognitive issues that commonly occur, possible causes, and how to implement strategies to improve cognitive function.
      • Video 6: Orthostatic Intolerance
        Orthostatic intolerance (OI), postural orthostatic tachycardia syndrome (POTS), neurally mediated hypotension (NMH), and orthostatic hypotension can all be manifestations of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). In this class you will learn to access orthostatic intolerance objectively, how to differentiate between these syndromes and strategies to manage the symptoms they present.
    • Unrest – Netflix
      In this heart-wrenching documentary, a 28-year-old PhD student turns the camera on herself to capture her struggles with chronic fatigue syndrome
    • Forgotten Plague
      Ryan Prior’s life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat. Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery. Prior is shocked that millions globally remain sidelined by the same disease, many bedridden for decades.
    • Patient Stories: In Their Own Words
      Patients describe in their own words what their life is like as they deal with myalgic encephalomyelitis and chronic fatigue syndrome.
    • Living with ME
      These videos, created by patients for patients, were developed for the Alberta Health Services for a course on myalgic encephalomyelitis and chronic fatigue syndrome with the assistance of Dr. Eleanor Stein.
  • MSK Rehabilitation

    Websites:

    • Health Management – YMCA LiveWell Programs
      Dealing with health challenges can be difficult. YMCA LiveWell are supervised exercise and information programs delivered in partnership with Hamilton Health Sciences and McMaster University in Canada. LiveWell can help enhance your health while managing specific chronic health conditions.

    Articles:

  • Oral Health

    Organizations:

    Videos:

  • Pain

    National Organizations:

    • Chronic Pain Association of Canada (CPAC)
      The mission of The Chronic Pain Association of Canada is to prevent and relieve unnecessary pain and to improve the quality of life and daily function of people who suffer from pain through education and awareness.
    • The Canadian Pain Society
      As a chapter of the International Association for the Study of Pain, the Canadian Pain Society supports the treatment of pain as a basic human right.
    • PAIN+ CPN
      PAIN+ CPN is a knowledge translation initiative of the Chronic Pain Network (CPN) and was created by the Health Information Research Unit at McMaster University, as part of the McMaster Premium Literature Service, McMasterPLUSTM. All citations are rated, by both health care professionals and patients living with chronic pain, to determine clinical relevance and general interest.
    • It Doesn’t Have to Hurt Campaign
      This organization’s innovative knowledge translation activities bring together researchers, parents, digital media experts, and other stakeholders to develop, implement, and evaluate branded social media campaigns to bring research to parents.

    Provincial Organizations:

    • The Multidisciplinary Pain Clinic
      The Multidisciplinary Pain Clinic is a facility of the Faculty of Medicine & Dentistry - University of Alberta, dedicated to the care of people with chronic pain, and its research and education.
    • Pain BC
      Pain BC is a collaborative non-profit organization comprised of people in pain, clinicians, researchers, and other supporters. Founded in 2008, their mission is to improve the lives of people in pain through empowerment, education, and innovation. Partnerships are the cornerstone of their work – collaborating with health authorities, regulatory bodies, the Ministry of Health, other NGOs, health professional associations, and businesses to achieve their mission.
    • The Quebec Association for Chronic Pain (AQDC)
      AQDC is dedicated to improving the condition and reducing the isolation of people with chronic pain in Quebec.

    International Organizations:

    • International Association for the Study of Pain (IASP)
      Founded in 1973, IASP is the leading professional forum for science, practice, and education in the field of pain. Membership is open to all professionals involved in research, diagnosis, or treatment of pain. IASP has more than 7,000 members in 133 countries, 90 national chapters, and 20 Special Interest Groups (SIGs).
    • IASP Portal
      A listing of organizations which relate to pain research, treatment, clinical practice and education not directly affiliated with the International Association for the Study of Pain (IASP).
    • International Myopain Society (IMS)
      The International Myopain Society [IMS] is a non-profit, international, interdisciplinary medical organization for research scientists, physicians, other health care professionals, individuals in training toward a health-related career, institutions, foundations, and commercial companies interested in exchanging ideas, conducting research, or learning more about soft tissue pain syndromes like myofascial pain syndrome and fibromyalgia syndrome.
    • Retrain Pain Foundation
      A science-based approach to overcome chronic pain. Website provides online courses, free instruction and professional certificates. Available in multiple languages.

    Clinical Guidelines:

    • Chronic Fatigue Syndrome
      Assessment and Treatment of Patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS): Clinical Guideline for Psychiatrists.

    Videos:

    • How Does Your Brain Respond to Pain
      TED-Ed video. Everyone experiences pain - but why do some people react to the same painful stimulus in different ways? And what exactly is pain, anyway? Karen D. Davis walks you through your brain on pain, illuminating why the “pain experience” differs from person to person.
    • The Stigma and Social Consequences of Chronic Pain: A Patient's Story
      Pain Management. Youtube, February, 2017
    • Introduction to Good Brain Bad Brain Chronic Pain
      Michael Coupland, IMCS Chief Psychologist, narrates a white board animated video about how chronic pain develops and how Cognitive Behavioral Therapy (CBT) techniques can assist patients to cope with Pain. Youtube, March, 2016
    • Wisdom from a Chronic Pain Patient Presentation
      University of New England student Samantha Shephard offers a few simple suggestions for working with chronic pain patients. Recorded at the Maine Chronic Pain Collaborative learning session. Youtube, May, 2015
    • The Problem of Chronic Pain
      Thousands of Ontarians suffer every day from chronic pain - persistent pain that can last for months or even longer. Some take powerful drugs simply to get by. As Ontario moves to curb the use of opioids, The Agenda explores how chronic pain is understood and its impact on society. Steve Paikin. Youtube, January, 2016
    • Managing Stress – Brainsmart
      Animated video by BBC. Youtube, July, 2010
    • Chronic Pain Management Lecture Series
      This is a series of videos providing general information about the nature of pain and the ways that the body’s systems are affected by pain. Consists of 10 lectures.
  • Fibromyalgia (FM)

    National Organizations:

    • National ME/FM Action Network
      The National ME/FM Action Network became a Canadian charitable organization in 1993 and is dedicated to myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) through support, advocacy, education and research.
    • Canadian Women’s Health Network: Fibromyalgia
      Created in 1993, The CWHN is a voluntary national organization dedicated to improving the health and lives of girls and women in Canada and the world by collecting, producing, distributing and sharing knowledge, ideas, education, information, resources, strategies and inspirations.
    • Action CIND
      Action CIND is a Canadian charitable organization that is dedicated to myalgic encephalomyelitis (ME), fibromyalgia (FM), chronic fatigue syndrome (CFS) and multiple chemical sensitivity/environmental sensitivities (MCS/ES) through research, education, support and services.

    Provincial Organizations:

    • Alberta
      • Alberta Rheumatology.com
        Website launched in 2010 by rheumatologists in Edmonton and Calgary as a resource for patients, medical students, residents and physicians on all aspects related to rheumatology - including fibromyalgia.
    • British Columbia
      • ME/FM Society of BC
        The ME/FM Society of BC is a charity, run by patients, carers and their families, formed to help and support patients with myalgic encephalomyelitis (ME) and/or fibromyalgia (FM).
      • The BC Women’s Hospital Complex Chronic Diseases Program
        A provincial referral centre that aims to provide comprehensive and evidence-based care to adults with complex chronic diseases, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia and alternatively diagnosed chronic Lyme syndrome. The program participates in clinical care, education/knowledge transfer and quality improvement/research.
      • Fibromyalgia Well Spring Foundation, British Columbia
        Fibromyalgia Well Spring Foundation’s intent is to create public awareness of fibromyalgia (FM), to give fellow FM suffers hope that their life is worth living, and to provide subsidized housing that accommodates energy levels of FM sufferers.
    • Québec
      • The Québec Fibromyalgia Society
        The Québec Society of Fibromyalgia's mission is to bring together and support Québec fibromyalgia associations, to help these associations better meet the needs of people living with fibromyalgia and their families. The do this by sharing information and acting as a reference organization on fibromyalgia.

    International Organizations:

    • International Organizations for Fibromyalgia
      A resource listing International organizations by country that provide patient support and advocacy, as well as promoting fibromyalgia awareness to politicians, physicians, scientists and the general public.
    • European Network of Fibromyalgia Associations (ENFA)
      ENFA promotes fibromyalgia awareness to politicians, physicians, scientists and the general public throughout countries across Europe.
    • Fibromyalgia Action UK (FMA UK)
      FMA UK provides information and resources for people who are affected by fibromyalgia. It aims to improve lives by increasing awareness of this condition throughout the UK and elsewhere, and improve access to treatments for fibromyalgia.
    • National Fibromyalgia Association (NFA)
      US based organization providing extensive fibromyalgia-related information and education through its website, monthly e-Newsletter, quarterly e-Magazine (Fibromyalgia AWARE - available free on-line) and medical conferences for both patients and physicians.
    • National Fibromyalgia & Chronic Pain Association (NFMCPA)
      US based organization supporting people with chronic pain illnesses, and their families and friends by contributing to caring, professional, and community relationships.
    • The National Fibromyalgia Partnership, Inc. (NFP)
      The National Fibromyalgia Partnership (NFP) is a US based non-profit, educational organization, established in 1992. Its membership includes patients and their families as well as medical professionals (both research and clinical) from across North America and around the world.
    • Fibromyalgia Coalition International
      US based organization giving hope to everyone suffering with fibromyalgia and chronic fatigue syndrome through extensive research and reporting of natural, proven, and effective therapies that focus on root causes.
    • The American Fibromyalgia Syndrome Association (AFSA)
      The leading American non-profit organization dedicated to funding research that accelerates the pace of medical discoveries to improve the quality of life for patients with fibromyalgia.

    Websites:

    • Fibromyalgia Community Guide
      There are many organizations and online resources created to help individuals cope with the chronic pain of fibromyalgia. The links found on this page have been collected to help readers connect with the fibromyalgia community.
    • MEPedia - Fibromyalgia
      MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), fibromyalgia (FM) and related diseases.
    • Fibromyalgia: What You Need to Know
      The MediResource Medical Review Faculty includes a dedicated staff of in-house health care professionals, editors and medical writers, along with a team of medical advisors. All have extensive experience in their medical specialty and in producing medical information for the public.

    Articles:

    Videos

    • What is Chronic Pain
      White board video presenting new evidence based approaches to chronic pain management
    • Bateman Horne Centre - Online Educational Series
      A six-part educational video series designed to empower patients and their advocates with the tools to communicate with their healthcare providers.
      • Video 1: Getting the Right Diagnosis
        Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) present as complicated illnesses and getting the right diagnosis can be challenging or seem like an impossibility. Learn how to recognize these diseases and other conditions that may play a role in illness presentation.
      • Video 2: Activity Intolerance & Post-Exertional Malaise
        Activity intolerance and post-exertional malaise (PEM) are often misunderstood aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.
      • Video 3: Restorative Sleep
        Poor sleep is a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Not getting a good night’s sleep can worsen symptoms. Dive into the mechanics of good sleep with Dr. Bateman and learn why sleep disturbances occur and how to implement strategies that improve them.
      • Video 4: Chronic Widespread Pain
        Pain is one of the most troubling and hard-to-manage symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Dr. Bateman teaches about the various types of pain, how pain is amplified, and treatment strategies to improve your own pain management.
      • Video 5: Cognitive Impairment
        People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) often suffer from cognitive impairment that can lead to brain fog, trouble word finding and more debilitating symptoms. In this class, you will understand the types of cognitive issues that commonly occur, possible causes, and how to implement strategies to improve cognitive function.
      • Video 6: Orthostatic Intolerance
        Orthostatic intolerance (OI), postural orthostatic tachycardia syndrome (POTS), neurally mediated hypotension (NMH), and orthostatic hypotension can all be manifestations of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). In this class you will learn to access orthostatic intolerance objectively, how to differentiate between these syndromes and strategies to manage the symptoms they present.

    Support Groups by Province:

    • Alberta
    • British Columbia
      • The ME/FM Society of BC
        Charity run by patients, carers and their families, formed to help and support patients with myalgic encephalomyelitis (ME) and /or fibromyalgia (FM).
      • Fibromyalgia Well Spring Foundation
        Works to reduce the physical suffering and mental anguish of people suffering from fibromyalgia. They have support groups in Chilliwack, Abbotsford, Langley, Aldergrove, Surrey and Maple Ridge British Columbia.
    • Manitoba
      • Fibromyalgia Support Group of Winnipeg Inc.
        Offers education, supports the development of coping skills, and provides up-to-date information on fibromyalgia. It aims to facilitate awareness and acceptance of fibromyalgia within the medical community and the general public.
    • Ontario
      • Toronto Fibro Support Group
        A group of people who are living with fibromyalgia and are interested in supporting others who are learning to manage their fibromyalgia symptoms.
      • North Toronto Fibromyalgia Support Group
        Helps people suffering with fibromyalgia by talking, sharing experiences and bringing in professionals to speak about this illness/disease.
      • Scarborough Fibromyalgia Support Group
        Provides meetings for members to provide information, emotional support and offer coping strategies.
      • Fibromyalgia & Chronic Fatigue Syndrome Support of York Region
        Peer support group where various obstacles and strategies are discussed related to the conditions of fibromyalgia (FM), chronic fatigue syndrome (CFS) and multiple chemical sensitivities (MCS).
      • Brampton Fibromyalgia Support
        A community supported group. The webpage is administered by people who suffer from fibromyalgia (FM). They provide unbiased information to people who are affected by FM, chronic fatigue syndrome (CFS) and any other diseases related to fibromyalgia.
      • Mississauga Support Group
        Mission is to provide an informative, safe, and a supportive network for individuals diagnosed with fibromyalgia.
      • Fibromyalgia London Group
        Provides persons with fibromyalgia and/or chronic fatigue syndrome access to a safe, scent, fragrance and latex free environment, which is a supportive, inclusive space where individuals, their families and care supporters can, without judgement, listen to and learn from each other.
      • Ottawa West – Fibromyalgia Support (FMSOW)
        Goal is to provide accuracy in medical content, links to other resources, alternative treatment options, and meetings to educate ourselves and others living with fibromyalgia.
      • Ottawa Fibromyalgia Support Group (OFSG)
        Community-based volunteer led Support and Self-help Group which meets monthly to offer support and information for those affected by Fibromyalgia and related syndromes.
    • Quebec
      • ABITIBI-TÉMISCAMINGUE
        The Fibromyalgia Association of Abitibi-Temiscamingue (AFAT)'s mission is to contribute to improving the quality of life of people with fibromyalgia through support, information, awareness and the promotion of rights and interests.
      • CAPITALE-NATIONALE
        Quebec Association of Fibromyalgia
        Mission is to help, support and promote the interests of people with fibromyalgia
      • CENTRE-DU-QUÉBEC
        Arthabaska-Maple Association of Fibromyalgia
        A non-profit organization that has been working in the Victoriaville area since 1993. It is a member of the Société québécoise de la fibromyalgie, which allows for greater visibility and a considerable weight vis-à-vis professionals working in the field of health and in front of the governmental authorities.
      • CHAUDIÈRE-APPALACHES
        Association de la Fibromyalgie Region Chaudiére-Appalaches
        The mission of this Association is to contribute to improving the quality of life of people with fibromyalgia and raise the awareness to the general public, and health and social services professionals.
      • ESTRIE
        The Estrie Fibromyalgia Association was founded in 1993 by a small group of people with fibromyalgia. The mission of this organization is to help people with fibromyalgia develop tools to achieve individual well-being, while providing them with a place to belong where they feel recognized and welcomed.
      • LAURENTIDES
        Association de la Fibromyalgie des Laurentides
        The Mission of this organization is to defend and promote the interests of people with fibromyalgia in the Laurentian region. They provide information and support on the multiple aspects of the disease (physiological, psychological and social) as well as resources. They work to raise awareness of fibromyalgia to the general public, health professionals and social services.
      • LAVAL
        Association de la Fibromyalgie de Laval is a registered charity recognized by the city of Laval and funded by the Laval Integrated Health and Social Services Center. Its role is to support people with fibromyalgia in their search for a better quality of life, by informing them about the disease, existing resources, offering them professional activities and providing services adapted to their limitations.
      • MAURICIE
        The Association de la Fibromyalgie Mauricie / Centre-du-Québec is a non-profit community organization working in the Mauricie and Center-du-Québec territories since its incorporation in 1993. The primary goal of this association is to improve the quality of life for people with fibromyalgia and their families. Their goal is to raise awareness among health and community stakeholders and the general public and contribute to the recognition of the disease by government and the public.
      • MONTÉRÉGIE
        Association de la Fibromyalgie Région Montérégie (AFRM’s) mission is to help and support people with fibromyalgia. Through support, information and encouragement, the Association promotes self-care for the person affected by this chronic illness.
      • Association de fibromyalgie et du syndrome de fatigue chronique de Vaudreuil-Soulanges is a non-profit association whose mission is to inform, reassure, support, persons living with fibromyalgia, as well as to educate and enlighten the general public and health professionals about this condition.
      • MONTRÉAL
        L'association de la Fibromyalgie région Île-De-Montréal (AFIM) services are intended primarily for the population of Île-de-Montréal.
      • SAGUENAY-LAC-SAINT-JEAN
        The Fibromyalgia Association of Saguenay-Lac-St-Jean is a non-profit organization founded in 1991. Their mission is to create a self-help group for people living in the Saguenay-Lac-St-Jean area with this disease, and also to share, listen, and motivate its members; conduct social and physical activities to break isolation and improve the abilities of members; and be heard and recognized by all levels of government, with the collaboration of the Quebec Federation of Fibromyalgia
    • Saskatchewan
  • Skin Health

    Organizations:

    • Canadian Skin Patient Alliance (CSPA)
      The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians living with skin diseases, conditions and traumas. CSPA also supports members of Affiliate Member organizations who work specifically on various disease areas such as acne, scleroderma, melanoma and psoriasis.
    • Canadian Dermatology Association
      A reliable source of medical knowledge on skin, hair, and nails from certified dermatologists.
    • Canadian Dermatology Foundation (CDF)
      The research supported by CDF is giving dermatologists tools they need to relieve suffering and change the lives of patients forever. CDF backs dermatology-focused educational and scientific activities with the potential to grow basic and applied dermatology research in Canada.
    • Canadian Association of Psoriasis Patients
      The Canadian Association of Psoriasis Patients was formed to better serve the needs of psoriasis patients across the country. Works in partnership with the Canadian Skin Patient Alliance to improve the quality of life for all Canadian psoriasis patients.
    • Canadian Psoriasis Network (CPN)
      The goal of the Canadian Psoriasis Network is to improve the quality of life of all Canadians who are living with psoriasis and psoriatic arthritis while vigorously pursuing a cure. Their mission is to provide all current information on treatment and continuing care through education, outreach, research and leading by example.
    • Debra Canada
      DEBRA Canada is the only organizational body in Canada exclusively committed to the care and support of families affected by epidermolysis bullosa (EB) and to improving their quality of life.
    • Debra International
      DEBRA International is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB).
    • Skin Research Group of Canada
      The Skin Research Group is represented by a consortium of new and established investigators in basic and clinical research disciplines, based at McGill University.
    • Skin Inflammation & Psoriasis International Network (SPIN)
      SPIN’s mission is to improve the quality of healthcare for patients suffering from chronic inflammatory skin diseases, in particular from psoriasis and atopic dermatitis, while developing national and international collaborations in the field of skin inflammation. SPIN also collaborates with 70 patient associations and 107 national representatives for psoriasis and atopic dermatitis.

    Websites:

    • My Skin & Bones
      Highlights the connection between psoriasis and a form of arthritis called psoriatic arthritis (PsA).
    • Pso Serious
      Having psoriasis may increase the risk of developing other chronic systemic diseases, including heart attack, stroke, diabetes, cancer and liver disease. This website advocates for and supports people impacted by psoriasis.
    • DermWeb
      DermWeb, maintained by the Department of Dermatology and Skin Science at the University of British Columbia, is for informational and educational purposes only. The aim is to provide quality dermatology links and resources to both the professional community and the public.

    Reports:

    Articles:

    Videos:

  • Patient Engagement

    Organizations:

    • Canadian Arthritis Patient Alliance (CAPA)
      The Canadian Arthritis Patient Alliance (CAPA) is a grass-root, patient-driven, independent, national advocacy organization with members across Canada and supporters both Canadian and International.
    • Strategy for Patient-Oriented Research (SPOR)
      Canadian national Strategy for Patient-Oriented Research, founded in 2011.
    • Patients Canada
      Patients Canada is a national, independent organization that champions change that matters to patients. As the culture within health care continues to evolve, there is increasing demand for patients to partner in guiding improvement in many areas of health care and across care settings.
    • Alberta SPOR
      Patient Engagement in Health Research: A How-to Guide for Researchers
    • INVOLVE
      INVOLVE, part of the National Institute for Health Research, is a UK national advisory group that brings together expertise, insight and experience in the field of public involvement in research.
    • Patient-Centered Outcomes Research Institute (PCORI)
      PCORI is a non-profit, non-governmental organization located in Washington, DC. Congress authorized the establishment of PCORI in the Patient Protection and Affordable Care Act of 2010.
    • Patient Advisors Network (PAN)
      The Patient Advisors Network (PAN) is a community of people who have received health services or cared for those who have, and who are committed to improving healthcare as advisors for the good of all across Canada. Together, we can create a greater, collective impact.

    Websites:

    • Experience-Based Co-Design Toolkit: Patient partnership
      This Co-Designed Toolkit is an approach that enables health care professionals and patients (or other service users) to co-design services and/or care pathways, together in partnership. The approach is different to other service improvement techniques. It includes downloadable resources including template forms, letters, presentations, and other materials that support successful implementation of this approach.
    • Citizen Engagement – Canadian Institutes of Health Research
      CIHR has adopted the term citizen engagement because the essence of "engagement" is far more active than traditionally passive public consultation in its recognition of the capacity of citizens to discuss and generate options independently.

    Articles:

    Videos:

    • The Power of Conversation. Breslin, M., Mayo Clinic (2013).
      “Addresses the essential character of satisfying conversations between patients and providers. Conversation is not a soft skill. It is the essence of Health Care Delivery”
  • Training Tools
    • Health Research Training at CIHR
      Developing the next generation of leaders within and beyond the health research enterprise.
      CIHR defines successful research training outcomes as the development of scientific, professional, and organizational leaders within and beyond the health research enterprise. We are actively working to achieve this vision by staying abreast of training best practices and innovations, and integrating these into initiatives, programs, policies, and other activities.
    • National Collaborating Centre for Methods and Tools (NCCMT): Learning Centre
      The NCCMT supports public health organizations in using innovative, high quality, up-to-date methods and tools to put what works into practice and policy across all domains of public health. Online learning resources have been developed to support the process of evidence-informed public health.
    • Strategy for Patient-Oriented Research (SPOR): Patient Engagement Framework
      Patient engagement is about meaningful collaboration. Patients become patient partners in the project and can be actively engaged in governance, priority setting, developing the research questions, and even performing certain parts of the research itself. This type of participation helps to ensure that the research being conducted is relevant and valuable to the patients that it affects. The SPOR Patient Engagement Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners.
    • INVOLVE
      INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research (UK), to support active public involvement in NHS, public health and social care research by bringing together expertise, insight and experience in the field of public involvement in research. Resources include briefing notes for researchers, plain English summaries, evidence, publications and research libraries, examples and how to get involved.
  • Other Websites / Resources of Interest

    Websites:

    • Plain Language Medical Dictionary
      This website, hosted by the University of Michigan, is a great resource for health professionals. Type in a word and provides a simplified clear language option to use when communicating with patients.
    • CIHR Jargon Buster
      This glossary provides lay language definitions for frequently used health research terms.

    Articles:

    • AI (Artificial Intelligence) in medicine
      Ethical considerations: A role for researchers and physicians in artificial intelligence in healthcare
      Implementing Machine Learning in Health Care – Addressing Ethical Challenges. 2018. Char, D.S., Shah, N.H. and Magnus, D. New England Journal of Medicine; 378:981-983. doi: 10.1056/NEJMp1714229.
    • Artificial intelligence in healthcare: past, present and future
      Intelligence (AI) aims to mimic human cognitive functions. t is bringing a paradigm shift to healthcare, powered by increasing availability of healthcare data and rapid progress of analytics techniques. We survey the current status of AI applications in healthcare and discuss its future.
      Jiang F, Jiang Y, Zhi H, Dong Y, Li H, Ma S, Wang Y, Dong Q, Shen H, Wang Y. Stroke Vasc Neurol. 2017 Jun 21;2(4):230-243. doi: 10.1136/svn-2017-000101. eCollection 2017 Dec.Artificial
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