Ways to Support People with Chronic, Complex Diseases in Canada

Canada has several outstanding advocacy groups for people with chronic, complex diseases. Without them, we would not be where we are. These groups have lobbied tirelessly to get the ear of the government, lawyers, researchers, and the medical profession to provide:

• more research;
• more infrastructure;
• better medical and home care; and
• better disability supports for Canadians with chronic, complex diseases.

We still have a long way to go but are much further ahead than we were when I became ill in 1989 thanks to these skilled, creative, devote volunteers.

These groups rely on donations to fund their activities. All the Canadian groups mentioned below are registered nonprofit organizations for tax purposes and are listed on the charitable giving CanadaHelps website. CanadaHelps is one of the easiest ways to support the Canadian charities important to you.

NOTE: This is a guide and not an endorsement. Please do your own due diligence before contributing to any organization.

National ME/FM Action Network

The National ME/FM Action Network spearheaded the development of the influential Canadian Consensus Criteria for Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM). It developed guides for accommodation in educational institutions and for the application process for CPP-D. The network produces a quarterly newsletter with great advocacy and support information.

Action CIND

 Action CIND has a vision to advance research, education, and support for Chronic Immunological and Neurological Diseases (CIND) such as ME, FM, and Multiple Chemical Sensitivity/Environmental Sensitivities (MCS/ES). It spearheads the annual May 12th awareness day, offers two support groups (one for youth) and webinars, and collaborates with other organizations in Canada and internationally.

 Environmental Health Association of Québec

 The Environmental Health Association of Québec (EHAQ) actively advocates for people with chemical sensitivities. It has many projects underway, including finding and building an affordable, healthy housing project for people who suffer from environmental sensitivities. ASEQ-EHAQ offers a wide variety of different workshops and webinars at no cost for health-care workers, lawyers, and communities. It is a fully bilingual organization.

Canadian Lyme Disease Foundation (CanLyme)

 CanLyme provides accurate information to the public, medical community, and government agencies about Lyme Disease and other tick-borne diseases and their potentially serious effects on our health and quality of life. It has held conferences that I’ve attended to teach professionals about Lyme Disease.

Health Rising

In the Health Rising blog, Cort Johnson and his team post 2 to 3 times weekly about all matters relevant to ME, FM, long COVID, and related diseases. They talk about research funding, advocacy efforts, recovery, and, of course, new research and clinical trials. Health Rising has become the go-to source of up-to-date information. This is the only non-Canadian organization on my list.

  
Open Medicine Foundation Canada 

If you want to support Canadian ME research, the Open Medicine Foundation Canada is an option. OMF Canada is affiliated with the Open Medicine Foundation in the US, which has raised millions to support research by five affiliated research centers (Stanford, Harvard, Uppsala Sweden, Melbourne Australia, and Montreal Canada). Funds donated to OMF Canada will go to the ME/CFS Collaborative Research Center at the CHU Sainte-Justine, Université de Montréal. Dr. Alain Moreau is the director. Unlike much research in the field, which is years away from translating to the clinic, Dr. Moreau’s work is already helping individual patients.

Good luck with your giving decisions. No amount is too small or too large and every dollar is appreciated. You can also contact any of these groups to volunteer your services. They are especially in need of people with technical and writing skills.