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History of the WWMEA

On January 17, 1989, thirty-five people assembled in a meeting room at the Kitchener-Waterloo Hospital.  That evening marked the beginning of what was known as the Kitchener-Waterloo Area Post-Viral Fatigue Syndrome Support Group (the name was changed in 1990 to the Kitchener-Waterloo Area Myalgic Encephalomyelitis Support Group) and is now the Waterloo Wellington Myalgic Encephalomyelitis Association.

The need for such a group had been identified by Dr. Arnold Goldberg, a General Practitioner in Kitchener, who was diagnosing and treating an increasing number of patients with Chronic Fatigue Syndrome (or M.E.).  Dr. Goldberg organized that first meeting and asked Betty Hunter to outline the requirements for a Group to become functional.  Betty is the wife of a patient and, in the course of her career with a health agency, had extensive experience in organizing similar groups.  As a caregiver she was profoundly aware of the need for mutual support, understanding and exchange of information amongst sufferers.

Several of those present that evening offered assistance in designing letterhead, mailing notices etc., and under Betty's leadership the Group met once a month.  Dr. Goldberg maintained his association as medical advisor and recommended the meetings to his patients.  During that first year various speakers were featured covering such topics as Nutrition, Disability Insurance, Alternative Medicine, etc.

In September 1989, Dr. Byron Hyde, Chairman of the Nightingale Research Foundation, addressed approximately 250 people at the University of Waterloo.  This meeting was sponsored by the Support Group and involved an enormous amount of preparation undertaken by Betty and her small band of willing workers.

Meetings allowed for lively discussion as patients shared problems, information and anecdotes when no official speaker was present.  However, the number of people attending the K-W Area meetings increased to the point where it became impossible financially, and physically, to send mailings to one and all.  It was obvious that a more formalized structure was necessary.  It was decided that as of January 1, 1990, a membership fee be required to receive notification of meetings, a quarterly Group Newsletter be established and the organizing committee become a Board of Directors.

During 1992, the Board of Directors worked very hard to apply for charitable status.  On December 30, 1992 the Waterloo Wellington Myalgic Encephalomyelitis Association officially became a Registered Charitable Organization.  We also began publishing our newsletter on a generally monthly basis.

The WWMEA has been involved in various community activities such as:

  • providing Support Group Meetings in Cambridge, Guelph and Waterloo,
  • participating in volunteer fairs,
  • providing public lectures,
  • providing private lectures to local companies, health units and schools,
  • participating in radio and television interviews,
  • helping to organize the Myalgic Encephalomyelitis Association of Ontario.
Dr. Daniel Ho-Yen in his book Better Recovery from Viral Illnesses stresses the need for patients' self-help groups:  "They have so many advantages that they should not be seen as a temporary stopgap measure ... they are an important, permanent, complementary adjunct to traditional medicine ... a group in which 95% of the work is done by 5% of the members is weak ... the first benefit from being in a group is that the patient's perception of his illness changes.  No longer is he 'abnormal', 'sick without a label' or 'going quietly mad' ... The second benefit involves the 'helper principle'.  People who help others with a similar problem to their own can paradoxically benefit most from the exchange."

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