A Short History of the National ME/FM Action Network

The National ME/FM Action Network was founded in 1993 by Lydia Neilson. Prior to that, Lydia had started a local ME/FM patient support group and had volunteered with a ME/FM research foundation. Lydia noted a gap in service - the lack of a patient-focused ME/FM organization for Canada. She started the Network to become the eyes, ears and voice of the ME/FM community at the national level.

The organization has evolved over time as needs have changed. The story can be broken down into phases of about 5 years each:

Phase 1: Reaching out (1993-98)

In the early years, the Network focused on identifying and developing connections in Canada and internationally. It reached out to ME/FM patients and support groups, identified and reached out to health professionals and lawyers who were supportive of ME/FM patients, and monitored international developments because we are working within an international context.

Very importantly, the Network started the Quest newsletter and the national website to share information and discuss issues.

The Network was instrumental in establishing May 12 as International ME/FM Awareness Day. May 12th was chosen as it was Florence Nightingale’s birthday and she may have had ME/CFS or FM.
Even at this early stage, the Network applied for intervenor status in a court case of national significance dealing with fibromyalgia.

Phase 2: Developing Resources (1998-2003)

The years 1998-2003 were focused on compiling resources to respond to the needs of the community.

A survey conducted by the Network found that health professionals wanted and needed diagnostic and treatment protocols for ME/CFS and FM. The Network asked Doctors Anil Jain and Bruce Carruthers, two experts in the illnesses, to develop draft documents. The Network also convinced Health Canada to appoint panels of international experts to review the documents. Both panels came to unanimous agreements. The consensus criteria for ME/CFS and FM were published in peer reviewed journals in 2003.

Recognizing that young people can be affected by ME/CFS and FM, the Network supported a team which published the Teach-ME Sourcebook for Teachers of students with ME/CFS and/or FM.
Recognizing the challenges of applying for disability benefits, the Network wrote the first edition of the CPP-Disability Application and Appeals Guide.

Recognizing the legal issues around the illnesses, the Network published a manual for lawyers compiling important legal cases.

Phase 3: Sharing Resources (2004-2008)

The focus of this period was on sharing the information as widely as possible. The consensus documents and the shorter Overviews were sent to patients, doctors, medical schools and libraries. The Sourcebook was sent to schools, school boards

and children’s aid societies. The Overviews and Sourcebook have been translated into French to reach a wider audience.

During this period, the Network appeared as an intervenor before the Supreme Court of Canada. The Supreme Court found that an employer had wrongful

dismissed an employee with ME/CFS.

Also during this period, Lydia was awarded the Meritorious Service Medal by the Governor-General for her contributions to the ME/FM community.

Phase 4: Building Evidence/ Proposing solutions (2009 – 2015)

During this period, the Network put together evidence of the situation facing Canadians with ME/CFS. A major source of information was the Canadian Community Health Survey which showed that ME/CFS and FM are frequently diagnosed and that these conditions entail a high degree of disability and disadvantage. The questions on CFS, FM and MCS had been removed from the survey after 2005. The ME/FM/MCS community spoke up and the questions were reinstated for 2010, 2014 and for additional years in the future.

Also during this period, the Network hosted the biennial conference of the IACFS/ME. This meeting brought world experts to Ottawa to look at the state of research and clinical care.

The Network has brought to light issues in Canada’s health research program, health delivery system, and disability system and has suggested ways that these issues could be resolved.

The Future

The fact that the government of BC has begun addressing issues, the fact that collaboration is starting to happen in other countries and the stated intentions of the Liberal Party of Canada gives us hope that more doors will open here in Canada. The Network will be ready.