Aboutus - About us

The National ME/FM Action Network assists those afficted with ME/CFS and FMS through education, advocacy, support, and research.

Being a national organization, we choose projects that will bring widespread awareness and understanding of these illnesses and will benefit patients across Canada.

NATIONAL ME/FM ACTION NETWORK

SUMMARY OF ACHIEVEMENTS

1993 – 2011

The National ME/FM Action Network adopted the theme of The Goose Story.  The  Canada Geese flying in “V” formation have a 71% greater flying range than each bird flying on its own.  People who share a common direction and goal can get there more quickly and easily as they are traveling on the thrust of one another.  The National ME/FM Action Network follows that course through support, advocacy, education and research.

READ THE INSPIRING GOOSE STORY HERE >

THE CORPORATE CREATION

• June 18, 1993 National ME/FM Action Network officially receives charitable status.

• First newsletter published on May 4, 1993.

• Establishment of May 12th as International ME/CFS and FM Awareness Day in Canada.

• February 1, 1994 the bi-monthly newsletter receives its name  QUEST.

• Corporate logo created based on The Goose Story.

• Board of Directors formed.

THE ACTION BEGINS

SUPPORT ISSUES

• Website launched.

• Facebook communication.

• CFS KnowledgeCenter communication.

• QUEST quarterly Newsletters created of medical and legal significance.

• The Journey added to QUEST to cover treatments and support matters.

• Established relationships with support groups and associations in Canada and around the world for mutual collaboration.

• Resource Books and guides developed for CPP disability pension applications, ME/CFS and FM pamphlets, manual for legal matters and TEACH-ME for Teachers and parents for children and youth with ME/CFS and FM.

• Fall 2010 Unheard Voices: My Story initiative started to collect ME/CFS and FM stories.

   

   

RESEARCH & MEDICAL ISSUES

• Established communications with research facilities.

• Established National Doctors’ Roster of medical professionals experienced with ME/CFS and FM.

• Surveyed the medical professionals enquiring what they felt was the most important tools they needed to diagnose & treated ME/CFS and FM.

• Expert Medical Panels established in anticipation of reviewing the draft definitions.

• 2003 ME/CFS ME/CFS Clinical Working Case Definition, Diagnostic & Treatment Protocols: A Consensus Document published in the Journal of Chronic Fatigue Syndrome.

• 2003 Fibromyalgia Syndrome: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols – A Consensus Document published in Journal of Musculoskeletal Pain and co-published simultaneously in The Fibromyalgia Syndrome: A Clinical Case Definition for Practitioners.

• Hosting of conferences and meetings.

   

GOVERNMENT ISSUES

• Communications  established  with relevant government departments and agencies in Canada.

• Collaboration with the U.S. Centers for Disease Control & Prevention in the drafting of the 1994 booklet “The Facts About Chronic Fatigue Syndrome”.

   

LEGAL ISSUES

• Established National Lawyers’ Roster of lawyers experienced in ME/CFS and/or FM legal cases and willing to see clients free for initial consultations.

• Communications with the legal establishments.

• Network takes  on intervenor status in court cases.

   

MEDIA ISSUES

• Appointed a media representative to scan the media and follow up on any subjects dealing with ME/CFS and FM for follow up.

• Communications with Health Reporters on ME/CFS and FM matters.

THE NATIONAL ME/FM ACTION NETWORK is the host of the IACFS/ME 10th international clinical and research conference for ME/CFS, FM and related illnesses in Ottawa – September 22nd – 25th, 2011 and a simultaneous patient conference on September 22nd, 2011.

NOTE; For a detailed history of achievements, please see our library.

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Learn more about the History & Achievements of our Network:

We are dependent on memberships and donations to carry on our work on behalf of the ME/CFS/FM community. Please join us.

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