Networks, groups and organizations
MEFM Society of BC — The ME/FM Society is a charitable organization aimed to educate, raise awareness, advocate for and provide support to the ME and FM community in BC.
The National ME/FM Action Network — The National ME/FM Action Network is a charitable organization dedicated to ME and FM through support, advocacy, education and research.
Millions Missing Canada — Advocating for ME research funding and treatment access in Canada
ActionCIND — A registered charity dedicated to advancing awareness, research, education, support services for CIND (Chronic Immunological and Neurological Diseases).
Solve ME/CFS Initiative (formerly CFIDS Association of America)
The ME Association (UK)
Local Service Agencies
Victoria Disability Resource Centre
CRA Free Tax Clinics (help with filling out tax forms)
Local Medical Information
Victoria area doctors accepting new patients
Walk-in clinics in the Victoria area
Medimap | Walk-in Clinic Wait Times
RateMDs – Doctor reviews and ratings
Complex Chronic Diseases Program (CCDP) — BC’s only provincially funded program receiving referrals for ME education and care. This program’s website hosts both patient, referral and practitioner resources. Program offers group medical visits for self-management education and 1:1: medical consultation appointments for a 1 year enrollment.
Clinical Information
Canadian Consensus Criteria for ME (CCC) (PDF) — The CCC is generally accepted as the diagnostic criteria for ME in Canada. This 164-paged document outlines in-depth clinical aspects of ME diagnosis (pg 22-23 for diagnostic protocol). BC’s Complex Chronic Disease’s Program (CCDP) uses a 1 page summary of the CCC to support ME diagnosis before referral or during enrollment.
Introduction to Diagnosis and Management of ME/CFS — A 12-minute video introducing the diagnosis and management of ME. It was developed as part of a (USA) continuing medical education module.
ME/CFS Clinician Coalition Resources — A web-based resource supporting clinicians to improve clinical care for patients for ME. Best clinical practices and evidence-based recommendations are presented (USA).
Pacing and Management Guide for ME — This 4-paged handout defines post-exertional malaise (PEM) and pacing. These concepts are specific to supportive clinical management of ME.
Post-exertional malaise (PEM) — This web resource outlines PEM characteristics, physiology, assessment and management (pacing).
A Conversation About Myalgic Encephalomyelitis with Dr. Nina Muirhead — A 1-hour CIHR-IMHA webinar discussing: 1) Diagnosis and Management of ME, 2) Connection between ME and Long COVID, 3) Current and Upcoming Research. (Dr. Muirhead is a surgeon, researcher, medical educator, Oxford graduate and patient from the UK. She is an Internationally recognized expert on Myalgic Encephalomyelitis and a member of the Canada’s ICanCME’s Working Group on Trainee Development/Medical Education.). Article of content also available from CIHR.
Index of ME/CFS Published Research — Comprehensive reference list of all published research on ME/CFS (Nov 2020). Topics cover nomenclature, epidemiology, biomedical sub-topics, clinical and management topics, prognosis and quality of life, etc. References only, no synthesis or summaries (142 pages).
iCanCME — The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network is a national research network of researchers, clinicians, and patient partners working to advance the understanding of ME and its biomedical research.
Medical information and health resources
Open Medicine Foundation — Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .
International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
Very Well: Fibromyalgia and Chronic Fatigue
US Centers for Disease Control: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Online Groups
Archives of the Co-Cure ME/CFS & Fibromyalgia Information Exchange Forum
Disability Information
Accessibility – Province of British Columbia
Disability Benefits and Discounts
Government of Canada Disability Benefits
Canada Pension Plan Disability Benefit
Tax credits and deductions for persons with disabilities – Government of Canada
Registered Disability Savings Plan (RDSP) – Government of Canada
Planned Lifetime Advocacy Network: RDSP
Services for People with Disabilities – Province of British Columbia
Camping Fees for Persons with Disabilities – BC Parks – Province of British Columbia
Disability Discount and Accessibility at BC Ferries
Transportation
Fuel Tax Refund for Persons with Disabilities – Province of British Columbia
ICBC Disability Discount (Also check out the Low-Kilometre Discount)
Parking Permit Program – Victoria Disability Resource Centre
Parking for People with Disabilities | City of Victoria
BC Transit – handyDART & Taxi Saver
Emergency Preparedness
Emergency Preparedness Guide for People with Disabilities/Special Needs – Government of Canada
People with Additional Preparedness Needs – Province of British Columbia
Personal websites and blogs
Occupy CFS | Occupying CFS since 1994
Thoughts About M.E. | Myalgic Encephalomyelitis (M.E.) Advocacy
Finding Answers for Chronic Fatigue Syndrome and Fibromyalgia | Health Rising