A short history of ME/CFS advocacy in Canberra

By Judy Goyen

This article, originally entitled "Ten Years of M.E. in the ACT" was written by our founder to commemorate the ACT ME/CFS Society's 10th anniversary. It was first published in the Society's newsletter in 1993. We published it again in 2003, when we turned 20.

In 1983, after seven years of undiagnosed illness, my symptoms were finally given a name - ME. At first it was a great relief but I soon realised noone knew what this name meant - not even the majority of the medical profession. Someone had to be able to help!

In my case support was found through the NSW ME Society, which I located through a TV station after seeing a programme about an outbreak of ME in Geraldton, WA.

My contact in Sydney was a wonderful, warm person with whom I am still friends. She encouraged me to think about starting a support group in the ACT. The task seemed a little daunting, as at the time I was very ill and had three young children. With my husband's help we organised for an interview with the Canberra times for myself and the other only known ME sufferer in the ACT - a 14 year old girl. The medical journalist did a great job of the article which was published in April 1983 with my phone number as a contact.

After a week of phone calls from all sorts of people with undiagnosed illness, I held a meeting at my place for potential ME sufferers. It took a while to sort out the most likely ME people but there was still one major hurdle - no ACT doctors were interested in the illness. There were obviously no diagnostic tests at this time and any diagnosis made was done by symptomatic means or by an exhaustive process of elimination.

As no financial - or any other - support was available to us, we were offered help from the local MS (Multiple Sclerosis) Society which was well established in the ACT. Their support enabled us to consolidate and to gain some help from their social workers for a short time.

Eventually, the differences in the illnesses and the importance of ME establishing itself in its own right forced us to break away. The time had come to develop our own group with our own committee and to start educating everyone - the pubic and the medical profession - about ME and the effects it had on individuals and their lifestyles.

Our first committee was formed - taking some of the load off me - until this time I had been the sole contact for the growing number of enquiries about the illness.

Some of our original workers are still supporting and working for ME/CFS in the ACT. Prue Martin, Cecelia Gutierrez and Patricia Richardson are some who come to mind. They have given ten years of continual service to the Society while coping with the illness themselves.

The Committee, in the early years, spent many hours distributing literature we gathered from overseas research (mostly from the New Zealand Society at that stage) and brochures of local content to all medical outlets possible. All GPs' surgeries, health centres, clinics, hospitals, social workers, consulting physicians, neurologists, rheumatoid specialists - in fact anywhere we thought the word may get through to someone about the illness received our literature.

The original brochures, newsletters, doctors kits etc were all put together by my husband and then photocopied by the hundred after office hours. I spent many hours personally giving talks at health centres, other societies and community groups all over Canberra, trying to spread the word about ME and its sufferers.

When I finally decided to take a break from the head spot the position was taken over by Jeanette Richmond, followed by David Harpers and then our current President Celia Irving. Good solid committees have backed all the presidents and throughout the ten years tireless fundraisers have gathered sufficient money for the Society to keep going as the number of members grew.

For the first few years the same group of people spent endless hours sitting at cake and white elephant stalls, selling raffle tickers and how could we forget the backbreaking hours spend packing pies and lamingtons for the "healthy partners' to deliver around Canberra that night. Once the Society was more established, the fund raising turned to bigger things and we started rising money for local and Sydney research.

Once the ACT Society was securely established, the decision was made to break away from the NSW Society and become our own registered society. The painful process of drawing up a Constitution etc was finally negotiated and we became a society in our own right.

Celia Irving has carried on as President as a tireless worker, achieving greater goals than we could have imagined ten years ago. The National Conference in Canberra last year has to be the greatest achievement so far for our Society. It is hard to believe that even though the struggle for recognition of this illness throughout society will never be over until we have a cure, great progress has been made through the efforts of many people - sufferers and their families - a support network has been established where the many people with this illness in the ACT can gain knowledge of the illness and most importantly can find sympathetic support from fellow sufferers.

We have made great progress over the last ten years and will continue to maintain and improve our Society with the help of the many devoted people who give up their time to help others.

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