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:
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."
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
helping to organize the Myalgic Encephalomyelitis
Association of Ontario.
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Wellington Myalgic Encephalomyelitis Association.
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