Advocacy

In addition to providing information and support to those living with M.E./CFS, the MEAO has worked tirelessly since 1991 to promote a greater understanding of the seriousness of Myalgic Encephalomyelitis and the long-term disability it can create for the adults, youth and children affected.

Our Association is so very grateful to those within the M.E./CFS community who have assisted us in our endeavours: our members and volunteers, the National ME/FM Action Network, the Environmental Health Clinic at Women’s College Hospital, M.E and Fibromyalgia support groups, Dr. Bested and many other health care professionals and support workers from across the province.

We work to improve services in the following areas:

• medical diagnosis, treatment and research
• the rights of people with M.E. to social assistance, home care and other services for those with chronic illnesses
• recognition and care of people with M.E./CFS in our schools and educational systems
• inclusion of people with M.E./CFS in disability programs, such as C.P.P., provincial disability programs, Workers’ Compensation, the Ontario Human Rights Commission and others
• education to employers on the short and long-term disability needs of people with M.E./CFS
• government legislation relating to people with M.E./CFS

Here are just a few ways we are working to improve awareness and services

Educating our Leaders

The MEAO has been working with government leaders and agencies at all levels since 1991. We work in concert with the National M.E./FM Action Network and other organizations to improve funding and services. In 2008, the MEAO participated in a meeting with federal health agencies and our report for that meeting will provide you with our recommendations to the federal Minister of Health and the Public Health Agency of Canada.

OHIP Codes

In 2006 we were successful in working with the Ministry of Health and Long-Term Care, Ontario Medical Association, OHIP and other M.E./CFS groups in gaining new recognition for M.E./CFS, new diagnostic and billing codes and increased payments to physicians (similar to those for other severe chronic illnesses) to encourage more family doctors to provide adequate care for those with M.E./CFS. Ontario now has a CFS Diagnostic Code Number (795) and a Time-Based Billing Code Number (K037). This means that the Ontario Ministry of Health and Long-Term Care and the Ontario Medical Association officially recognize M.E./CFS as a physical illness.

Ontario Human Rights Commission

Advocating on behalf of people living with M.E./CFS, the M.E. Association has made great strides in having M.E. recognized by the Ontario Human Rights Commission. The MEAO was successful in obtaining recognition and acceptance of M.E./CFS from the Ontario Human Rights Commission (OHRC). FM and MCS are also accepted as being authentic physical illnesses. Through the excellent work of Margaret Parlor, our Coordinator of Youth and Educational Issues, the Ontario Human Rights Commission (OHRC) acknowledged in their final 2005 report, "Guidelines to Accessible Education," that students with "invisible illnesses" such as M.E. or MCS also need to be accommodated in their respective school systems.

The full report, "Guidelines to Accessible Education," (43 pages) can be found at the Ontario Human Rights Commission web site.

Ministry of Education / School Boards

We also work with the Ministry of Education on policies related to the needs of students with disabilities.

By advocating for the recognition of M.E./CFS and FM within the medical and educational systems, we are hopeful that youths and adults living with M.E./CFS and FM will have a better quality of life by receiving the compassion, understanding and care that they so rightly deserve.

Since many children and teenagers contract M.E., we have a Youth/Parent Resource Volunteer in Guelph who, in collaboration with the National M.E. /FM Action Network, coordinates efforts province-wide, using their publication Teach-ME: A Sourcebook for Teachers of Children with M.E./CFS and/or Fibromyalgia (FMS).

Our Association continues to collaborate with the National ME/FM Action Network, M.E. and FM Support Groups, and members and volunteers across the province of Ontario by disseminating current information. In particular, we have distributed the Journal of Chronic Fatigue Syndrome, Volume 11 (1), to hospital medical personnel and the coordinators of the Community Access Centres within their jurisdictions. Ontario’s special education teachers, school boards and principals have received the booklet Teacg-ME: A Sourcebook for Teachers of Children with M.E. and/or Fibromyalgia (FM). The sourcebook will help teachers develop teaching strategies for youth who have M.E. and fibromyalgia. We have also distributed educational material to the Children's Aid Society to assist their staff in understanding M.E. and FM.