working to improve care for people living with:
working to improve care for people living with:
Centers for Disease Control and Prevention (CDC) — Myalgic Encephalomyelitis/Chronic Fatigue Syndrome web pages. The CDC has a large informational site for the public and for healthcare providers including toolkits that can be downloaded and links to educational resources. We have referred to some of this material in our ME webpage.
Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (IMHA) Online Resource Library
Scroll down to the section on Myalgic Encephalomyelitis (ME). It lists international, national, provincial and local organizations dedicated to supporting people with ME. As well it contains links to useful websites, articles, videos and other resources.
None of the references in this link are from post 2017 and it does not include mention of the 2015 IOM/NAM report on ME/CFS.
Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (ICanCME) – (website under development)
A CIHR-funded national network of researchers, clinicians and patient partners dedicated to advance the understanding of myalgic encephalomyelitis.
See A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead, a CIHR-IMHA webinar, March 16, 2021 – ICanCME Research Network Youtube channel.
Open Medicine Foundation funds research within five ME/CFS Collaborative Research Centres (CRCs) at:
https://med.stanford.edu/chronicfatiguesyndrome/about.html
https://www.omf.ngo/ronald-tompkins-collaboration
Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (ICanCME) was established in September 2019 through a Catalyst Network grant funded by the Institute of Musculoskeletal Health and Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR).
Nova Southeastern University – Florida, Institute for NeuroImmune Medicine (INIM) Research and treatment center for neuro-immune disorders including chronic fatigue syndrome and Gulf War Illness.
Simmaron Research ‘Scientifically redefining ME/CFS’ – Non-profit ME/CFS research organization building on the 40-year biobank of Dr. Daniel Peterson
Stanford ME/CFS Initiative – Clinical research to improve diagnosis and treatment of ME/CFS
University of Alabama At Birmingham — Neuroinflammation, Pain and Fatigue Laboratory – Jarred Younger
Each of these clinics has a waiting list, in some cases it is well over a year in length. None of these clinics provide ongoing care al all are geared to the adult population.
British Columbia – The Complex Chronic Diseases Program (CCDP) was established in 2013 at the BC Women’s Hospital in Vancouver as a referral centre for the province of BC.
Referrals to this program are for people over 19 and resident in BC and are made by primary healthcare professionals. The program has “a mandate for care, education/knowledge transfer, and quality improvement/research for complex chronic diseases, including ME/CFS, FM and Alternately Diagnosed Chronic Lyme Syndrome.”
Nova Scotia – Integrated Chronic Care Service – Nova Scotia Health Authority (ICCS, formerly known as the Nova Scotia Environmental Health Centre) has roots that go back to 1996 and is located at Fall River, Nova Scotia.
As a result of service demand, this service is only available by referral from primary care providers from within Nova Scotia. “The ICCS is an interdisciplinary team that provides short term support for individuals diagnosed with or presenting with symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia (FM) and/or Multiple Chemical Sensitivity/Environmental Illnesses. (The) team provides comprehensive assessment recommendations and short-term interventions focused on self-management.”
Ontario – Environmental Health Clinic – (EHC) was established by the provincial government,ent in 1996 and is located at Women’s College Hospital in Toronto.
Referrals to the clinic are from primary healthcare providers. The clinic was established as “a provincial resource in promoting environmental health and to promote health care for people with chronic environmentally-linked conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia Syndrome (FM) and Environmental Sensitivities (ES/MCS) and Electromagnetic Hypersensitivity.”
Open Medicine Foundation Canada has a large resource Information section, called: “for your doctor“.
Bateman Horne Center — Is a non-profit Center of Excellence for research, clinical care and education for patients with multi-system complex diseases (msCCD). Many resources, including video, are available for patients and clinicians. We have referred to many of these on our ME webpage. It is home to a Medical Education Resource Center. It Has a full video library on their Youtube channel
Educational videos from Dr. Eleanor Stein (Calgary, Alberta). Three short educational videos explaining i) What ME is, ii) How to diagnose it, and finally iii) helpful management strategies. The videos are based on material prepared for educating medical students at the University of Calgary.
U.S. ME/CFS Clinician Coalition — Website contains a wealth of information on diagnosis and treatment, including a translation of their 2019 handout on the Basics of Diagnosis and Treatment in French, Italian, Spanish, German, Portuguese and Danish. We will be or have referred to some of this information in our ME webpage.
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society: Physician and Clinic Database – “a compilation of clinicians in the United States who have treated patients with ME and CFS.” As a note, although data can quickly get out of date, this may provide a helpful starting point for people in the United States or for those able to travel.
Drs with ME — Doctors with ME is the global professional association for medical practitioners and scientists with backgrounds developed in hospitals, surgeries, universities, financial services and think-tanks and with lived experience with ME or who stand with Doctors with ME. The website provides information and position papers related to ME and to long COVID.
IACFSME – International organization dedicated to the care and research of people affected by ME/CFS and related disorders.
Open Medicine Foundation Canada – A Canadian charity “driving research of ME/CFS, Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID.” The charity focuses on chronic complex disease research, collaborating with leading scientists and clinicians from around the world.
A US charity, Open Medicine Foundation, exists for the same purposes.
Physios for M.E. is a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME) who aim to educate and advocate. Website has educational material.
Solve M.E. (Solve ME/CFS initiative) — “The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.”
25% M.E. Group is a U.K. based charity raising awareness about severe ME. Its webpage has links to a number of resources for people with severe myalgic encephalomyelitis and for their carers.
Centers for Disease Control and Prevention (CDC) — Myalgic Encephalomyelitis/Chronic Fatigue Syndrome web pages. The CDC has a large informational site for the public and for healthcare providers including toolkits that can be downloaded and links to educational resources. We have referred to some of this material in our ME webpage.
Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (IMHA) Online Resource Library
Scroll down to the section on Myalgic Encephalomyelitis (ME). It lists international, national, provincial and local organizations dedicated to supporting people with ME. As well it contains links to useful websites, articles, videos and other resources.
None of the references in this link are from post 2017 and it does not include mention of the 2015 IOM/NAM report on ME/CFS.
Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (ICanCME) – (website under development)
A CIHR-funded national network of researchers, clinicians and patient partners dedicated to advance the understanding of myalgic encephalomyelitis.
See A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead, a CIHR-IMHA webinar, March 16, 2021 – ICanCME Research Network Youtube channel.