History

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Mission Statement:

FM-CFS Canada (formerly known as Compassion in Action) is dedicated to advancing Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) education, awareness and treatment. The organization received its national charity registration status on February 27, 1996. Our website does not host any form of advertisement.

 

Guiding Principles:

The results of our efforts are freely available to all people. We know these illnesses are hard on incomes and careers.

  1. We work with others, complementing the abilities of our partners to develop solutions on a national scale, drawing on the community of patients, self-help groups, researchers, physicians, government and nongovernment health organizations.
  2. Our goal is to promote research, awareness, education, and improved treatment.
  3. We believe in strategies and plans based on solid reasoning and research, and have objectives in focused areas that are targeted at the advancement of awareness and understanding.
  4. We believe that physician education is important and we particularly want to influence those still in the educational phases of their careers.
  5. FM-CFS Canada follows an Information Privacy Policy, a 24-point ethics policy, an Ethical Fundraising & Financial Accountability Code, and a pharmaceutical sponsorship policy, among others.
  6. Membership is free.

Roots, and Organizational Development:

  1. The organization was created and led by patients and physicians affected by CFS/ME & FM.
  2. Those involved at the very beginning were Drs. Eva and Paul Grof and Mr. Michel Tremblay; all distinguished human beings, who care very much for people with FM & CFS/ME. They led a search for a team with additional skills, for healthy people to inspire.
  3. Between 1997 and 2002, Dr. Paul Grof, Dr. Ed Napke, and David Mann, joined the organization offering a guiding hand and corporate knowledge, and a new team was formed.
  4. The founders had educated and involved new patients, physicians, community and business leaders that possessed the reputation, experience and skill sets needed to pursue a wide range of goals.
  5. The charity began building more relationships with specialist advisors (public relations, legal, governance, advice, etc.), similar to those found surrounding corporate Boards.
  6. They began talking with the leaders of large health charities to learn of their experiences, structures, and policies, meeting with some of their specialists in research, advocacy, public relations, and funding.
  7. It became clear that to make a difference to the patient community, it was necessary to de-stigmatize these illnesses, educate the public and professions and show to the community a message of hope and endeavor in their management of these illnesses.

 

Historical Evolution

  • We’ve run and kept up-to-date a web site for most of this period. In our website design we have taken some significant care to build an extensive set of web links to other resources, have physicians review them, and organise them usefully for patients, family, physicians, and the media.
  • We made it easy for people to contact us by providing a toll-free number in Canada (877-437-HOPE).
  • The majority of our day-to-day work was in meeting with support groups, and educating patients, physicians, the media, and the public with free Fibromyalgia and Chronic Fatigue Syndrome information.
  • The charity met and gave Fibromyalgia and Chronic Fatigue Syndrome seminars and workshops to more than 50 groups in the Eastern Ontario & western Quebec region.

We’ve held wide variety of events:

  • We held a press conference on Parliament Hill, thanks to the then Deputy House Leader Mauril Belanger.
  • An awareness night at a popular club on the main street, with the live act donated as well to our cause.
  • A local chiropractor and one of our Advisors, Patrick Faloon, shaved his head to raise funds and awareness.
  • We invited local patient groups to join us to speak at City Hall when the Mayor recognized May 12th in 2018 and we had a booth on the main rotunda in subsequent years.
  • An Ottawa theatre troupe donated the proceeds of the opening night to us and gave us an opportunity to speak to their audience.

Over three years we held eight, online, ‘Executive’ auctions:

  • Each with senior business leaders volunteering to meet their winning bidder in exchange for a donation to the charity.
  • The eight auctions were promoted to the business community through several local and national business associations, and to the general public through the media – every auction had several members of the media on auction and promoting our cause to their audience. We made new friends through the process, and raised funds.

FM-CFS Canada held several fine Ottawa Gala Balls, all featuring ballroom dancing, each year with a twist and different attractions.

  • The Ottawa Congress Centre donated their scenic canal-facing ballroom;
  • The Arthur Murray Dance School offered advance lessons and demonstrations at the events.
  • The events received press attention.
  • We were helped at one by fashion designer Richard Robinson and Miss Canada, Lynsey Bennett.
  • CTV’s CJOH news anchor Carol Anne Meahan emceed one, CHUM’s A-Channel’s health reporter Jerri Southcott another, helping with the coverage.
  • Well-known civil rights lawyer Lawrence Greenspon, one of Ottawa’s most favoured auctioneers, helped us through each of the auctions.

To further educate the public and the media, the charity arranged media interviews:

  • Chairman David Mann did about ten interviews on radio, TV, and in print, in addition to his public speaking and advocacy.
  • Shirley Westeinde, another well known community and business leader in Ottawa also demonstrated leadership and courage by stepping forward with the fact that she has FM.
  • Shirley and David appeared in a National Public Service Announcement about FM and CFS/ME aired by CTV.

In the area of research, FM-CFS Canada examined medical and systemic problems. We commissioned a study on the economic impacts to Canada:

  • We studied patients and their needs, partly through our online Patient Registry, partly through meetings with them one-on-one and in groups.
  • We videotaped interviews with patients.
  • We’ve researched and studied the ‘Patient Self Management Programs’ of other charities, including UK and US organizations.

We hired our first Executive Director, a former Mayor, who helped develop our contacts. Launch new initiatives such as the Patient Registry, and put on events, such as the City Of Ottawa’s recognition of May 12th.

  • We started found and talked to FM & ME/CFS patient groups across Canada. By the end of 2007, nearly 100 groups had joined.
  • We went to consulting groups, doctors, and researchers discussing the community’s issues, to develop a survey, inviting input from all patient groups.
  • It was the first such document prepared by groups for Government.
  • With it we formed a government relations strategy, and wrote a National Action Plan – a vision for the future and a business plan outline for it.
  • Nearly 100 FM & CSF patient groups were listed in support of the submission.
  • We put the case in economic terms by showing how the Federal Government specifically spends several billion dollars every year on these illnesses.

We reviewed the web sites of Canada’s FM & CFS patient groups and we couldn’t find extensive media resources. To create this awareness:

  • Over the course of a year we assembled diverse patient stories, more than 200 quotes from a range of authorities, gathered the facts, crunched numbers, listed research references, and presented story ideas.
  • To make it easy for the media to find us, we built a list of knowledgeable researchers, physicians, lawyers, and patient groups.
  • For the French media, FM-CFS Canada formed a media relationship with the three main Quebec groups to synchronize messages and timing, and ensure high quality French is available.
    • FM-CFS Canada’s Executive then Director, a 16-year resident of Montreal who did graduate studies in French, has attended several Quebec FM & CFS meetings.
    • Thethree main groups, that represent approximately 25 regional groups, are the Association Quebecoise de fibromyalgie, Association Quebecoise de l’encéphalomyélite myalgique, and the Fédération québécoise de fibromyalgie.
    • The FM-CFS.ca archive site has had nearly 20,000 words translated to French

Making May 12th official in Canada:

  • Senator Wilbert Keon in 2006, with the unanimous support of the Senators in attendance, proclaimed May 12th as Canada’s awareness day for FM & ME/CFS, in perpetuity.
  • We sent our thanks to all Senators, and we thank also, Senator Marjorie LeBreton for making a Statement to the Senate in 2005.
  • We continue to support May 12th initiatives each year with new events and media awareness support.

To help family doctors, the College of Family Physicians in 2006 set a challenge to us:

  • Come back with a 20-25-page guide for each of the FM & ME/CFS protocols, down from 130 pages each.
  • With the help of recognized experts these educational materials were created including the writing of the Canadian Overviews on FMS & ME/CFS.
  • Weorganised the printing and distribution of 9,000 copies of each ofthe guides across Canada. We were grateful to the TrilliumFoundation and other anonymous donors for their gracious support in enabling this activity.

Other Health Practitioners

Given the need to educate all health practitioners we’ve been talking with national professional associations covering a range of medical disciplines.

  • Sincethen experts have been kindly volunteering to work with others in their field to write 20-25 pages, profession-specific, guides for their peers.
  • Aside from the guides for family physicians, we now have a guide for pharmacists, and others in the works for nurses, physiotherapists, and massage therapists.

Tools and References

  • The collection of resources for physicians on our web site includes practical tools, indexes, charts, background research, guides for various experts, and perhaps as important on its own, a large selection of materials to give to patients.
  • We have launched in 2011 a National Essay competition, aimed at first year medical students in Canada. We have worked with the Canadian Federation of Medical Students to get the message out to newly qualifying doctors. The competition in its first year was an outstanding success with many god essays from young aspiring Doctors to be.

 

Patient and Caregiver Awareness:

  • FM-CFS Canada provides information for patients on our web site, through the media, through the network of patient groups, and directly by phone and email.
  • A variety of media interviews were conducted with the aim of helping patients learn how to access useful patient resources.
  • In 2008 we embarked upon a series of short documentary films that will be arranged in a Q&A fashion, via our website.
  • We have also prepared a 12 minute long documentary entitled “The Future is Hope”. This documentary was produced in Canada, interviewing patients, doctors and caregivers. The goal of the documentary is to create awareness of different patient situations, provide ideas on how these patients cope and to offer Hope to newly diagnosed patients.