Support - MAY 12

Many Patients Need Assistance

 Like all illnesses, the severity varies from patient to patient.  Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world”.

The National ME/FM Action Network would like to thank all family members and other caregivers for the assistance they give those with ME/CFS and FMS.

The World may think you are only one person -
But to one person, you may be their world.

Author Unknown


Whether you are a caregiver by occupation or by circumstances, you must also take care of your own needs.  All too often caregivers are so focused on looking after others, they neglect themselves.  If there is a need for oxygen masks during a flight, the rule is to put the oxygen mask on yourself before assisting others.  You must nurture yourself in order to be strong and supportive to others.

While some of the following articles are directed to caregivers of other medical conditions, their underlying principles may be of assistance.

Caregiving Articles

For additional Assistance

There are many sources for support for Caregivers.  In additions to the ones listed, many hospitals and churches have resources for caregivers.

National & International

Canadian Coalition for Family Supportive Policy

Canadian Healthcare Association

CFS Caregivers

Family Caregiver Alliance

Caregiving National Center

For Parents of Sick and Worn-Out Children

National Quality Caregiving Coalition

Well Spouse Association


Several provinces have caregiver networks/associations that provide information on local caregiver supports and services. In provinces/ territories without such networks, government departments and certain community agencies can direct caregivers to local supports and services.  We have tried to provide links to the organizations most likely to know about caregiver services and supports in each province/territory.


Newfoundland and Labrador

Nova Scotia

Nova Scotia Department of Health Continuing Care

Caregivers of Nova Scotia

Prince Edward Island


PEI Health Programs and Services

New Brunswick


Human Development Council Community Services Database




Info-Sante CLSC

Les Cercles de Fermieres du Quebec




Ontario Association of Community Care Access Centres Locator

Caregivers Support Network - Muskoka/Parry Sound

Champlain Community Care Access Centre

City of Ottawa Caregiver Support Program



Manitoba Health Home Care

Winnipeg Regional Health Home Care Intake



Saskatchewan Health Home Care and Long Term Care Services




Alberta Caregivers Association

The Family Caregiver Centre, Calgary Regional Health


British Columbia


Caregivers Association of BC




Department of Health and Social Services - Community Social Services




Department of Health and Social Services

Other Government Links


Canada Revenue Agency

Employment Insurance Compassionate Care Benefits

Human Resources and Skills Development Canada