Manitoba Resources
DISCLAIMER:
This site is for information purposes only, and is not a substitute for the advice of a qualified health care professional. Unfortunately, most health professionals do not yet understand the complexities of this disease and patients run the risk of re-traumatization with every visit. We urge caution and strongly advise members to choose health professionals with some understanding of ME/CFS OR who are willing to learn about it to provide you with the best care & recommendations possible.
In Manitoba, 21,000 individuals (Stats Canada) are estimated to suffer the debilitating effects of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). However, the majority remain undiagnosed.
ME/CFS is a severe, life-altering illness affecting multiple body systems. Examples of symptoms include profound fatigue (that is more than the task at hand and substantially reduces activity levels), pain, unrefreshing sleep and sleep dysfunction, neurological and cognitive issues, endocrine, autonomic nervous system disturbances (including, but not limited to, orthostatic intolerance), and immune manifestations.
However, the cardinal symptom of ME/CFS is “post-exertional malaise (PEM),” which involves the worsening of or development of symptoms from minimal amounts of activity (physical, cognitive, orthostatic, sensory or emotional), which would not cause symptoms in healthy individuals.
The cause(s) of ME/CFS are not yet known, but there are studies that have uncovered definite physiological issues in the body of individuals with ME/CFS. There are not yet any specific diagnostic tests, approved treatments, or cures. In most cases, it is a lifelong condition that the person with ME/CFS must learn to manage to reduce or minimize flares (PEM) to achieve some level of quality of life.
Although research is ongoing, it has continued to be underfunded for years despite the millions of people affected worldwide. The advent of Long Covid, related to infection with the SARS-CoV-2 virus, has renewed interest by researchers in how viral infections (also known to play a role in ME/CFS development) can wreak havoc on people’s bodies. ME/CFS advocates (including healthcare professionals with previous ME/CFS diagnoses) have been instrumental in educating those suffering from Long Covid, and it appears that there are a number of people who were infected with COVID who now meet the criteria for a ME/CFS diagnosis (but are still getting missed). Others who previously were getting along (with support from others) in the “milder” categories of the illness, who got infected, then went on to experience worsening of their ME/CFS symptoms. Milder is put in quotes, because mild ME/CFS is still very disabling and not even close to the functioning of a healthy individual without ME/CFS.
The World Health Organization recognizes ME/CFS. It is also included as an invisible disability by Manitoba Possible and in the Government of Manitoba Accessibility Legislation. Yet, sadly those with the condition are often ignored and gaslit by family, friends, medical professionals and the community at large, who simply do not understand the complexities of this illness and its devastating impacts on daily life.
A support group can ease the isolation and emotional roller coaster of this disabling illness. We get it. All are welcome. The Manitoba ME/CFS Support Group meets online the last Saturday of the month at 6:30 p.m. Please email us at mbmecfs@gmail.com to register. There is no cost.
ART THERAPY SESSIONS – led by Natalie Tremblay, Masters of Art Therapy, CIIAT. Art therapy meets the 3rd Thursday of the month , 6:30pm CST. Please email us at mbmecfs@gmail.com to register. There is no cost.
SUPPORTIVE MANITOBA ORGANIZATIONS
Manitoba Possible
Manitoba Possible (formerly Society for Manitobans with Disabilities) provides programs and services throughout the province – explore the site to see what’s available in your community.
Manitoba Possible Financial Empowerment
Can help you apply for government benefit programs and tax credits, etc.
Manitoba Wheelchair Services
If you require a wheelchair, you will need to be assessed by an occupational therapist, physiotherapist, or your doctor.
Other Manitoba Possible Programs
Start living better with health issues through a free Get Better Together Program.
Get Better Together Programs through:
Winnipeg Regional Health Authority
The Wellness Institute Clinic
Canadian Mental Health Centre
The Canadian Mental Health Association, Manitoba and Winnipeg is part of a nation-wide, charitable organization that promotes the mental health
Winnipeg Services Comprehensive Guide
Klinic Community Health
Provides mental health support by telephone 24/7 through various helplines including the Crisis line, Manitoba Suicide Line, and the Manitoba Farm, Rural and Northern Support Services, among others.
Independent Living Resource Centre
A organization that promotes and supports citizens with disabilities to make choices and take responsibility for the development and management of personal and community resources.
Community Therapy Services
A private, non-profit agency that provides consultant occupational therapy and/or physiotherapy services. Referral can be made by your home care office, a medical professional, or you can self-refer to determine if you meet eligibility criteria.
Fibromyalgia Support
Fibromyalgia Support Group of Winnipeg Inc.
Taking Charge of Fibromyalgia: Self Help education Program for Fibromyalgia.
Long Covid Support
Long Covid Support - Manitoba Shared Health
Long Covid Support - University of Manitoba
Lyme Disease Support
Manitoba Lyme Disease Facebook Group
https://www.facebook.com/groups/ManitobaLymeDiseaseGroup/
Manitoba Lyme & Tick-borne illnesses page
https://www.gov.mb.ca/health/publichealth/cdc/protocol/lyme.pdf
Dysautonomia Support
Dysautonomia Manitoba Support
GOVERNMENT SUPPORTS
WRHA HOME CARE
Manitoba Home Care Guide
Referral can be from your doctor or you can call the Home Care intake yourself.
EMPLOYMENT & INCOME ASSISTANCE (MANITOBA)
Employment and Income Assistance (EIA) list of services covered: referral requirements vary depending on specific need.
Disability and Health Supports Unit
A subsection of EIA responsible for approving medical equipment and supply needs. Referral by Doctor (through EIA), or by Home Care.
Materials Distribution Agency: Responsible for procuring and shipping medical devices/supplies for Home Care, EIA, and Community Living Disability Service.
https://engagemb.ca/manitoba-disability-community
Services to Seniors: Often able to help young disabled people as well, at least in rural areas. Meals on Wheels, transportation to appointments (including by Handi-Van if needed), often able to work with EIA to cover/reduce costs when needed. Usually accept self-referrals.
Here is the Manitoba Government’s Accessibility Plan
Manitoban Home Nutrition Program:
Provides IV and Tube feeding services and support, need to be referred by a doctor.
Your local food back/Christmas Cheer Board: usually accept self-referral.
Professional Cleaning Services
(various names in each community): These people do DEEP cleaning, such as if you wanted to sell your home. If you just want help with more typical housekeeping tasks (i.e. daily sweeping, tidying, etc.), consider hiring a private Home Care worker/company. Services to Seniors will often have lists of which people/companies are active in local areas.
Manitoba Public Insurance OT assessment
An occupational therapist assesses you at a clinic in Winnipeg to see if you need any vehicle modifications in order to drive safely and/or comfortably. People who need hand controls to be installed can be assessed for safety & appropriateness. The outcome of this appointment will decide what kind of restrictions you may have on your driver's license.
Manitoba Government Counselling:
https://www.manitoba.ca/covid19/bewell/index.html
Community Mental Health Services:
Provide limited, free, short-term counselling. Referral by Doctor or Home Care: https://www.gov.mb.ca/mh/mh/
Short Term Assessment & Treatment (STAT) Program
https://umanitoba.ca/medicine/department-psychiatry
PATIENT EMPOWERMENT IN MANITOBA
https://www.ratemds.com/mb/winnipeg/
https://wrha.mb.ca/files/request-to-access-personal-health-information-e.pdf
https://echartmanitoba.ca/manitobans/forms/
http://www.cpsm.mb.ca/uploads/weeklyreports/physiciandirectory.pdf
Virtual doctors covered by Province of Manitoba:
The Manitoba Accessibility Act allows you to have the right to a telephone appointment with your doctor if you request it as a reasonable disability accommodation because you're too disabled to travel.
https://www.mdconnected.ca/#healthcare_made_simple
https://gotodoctor.ca/coverage-pricing/ &
https://www.medicineshoppe.ca/en/telemedicine-services
https://cannawayclinic.com/locations/winnipeg/
https://healthplusmedical.ca/telemedicine
Canada Pension Plan & Disability Tax Credits
Canadian Pension Plan Disability Benefits