ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Annual Report 2003
The Society has had a fairly active year throughout 2003. A number of projects have been brought to completion and a cadre of committed members and volunteers have put considerable effort into maintaining a steady stream of activities. The response of members to various initiatives has been quite varied. We enjoyed excellent attendances at several events. And yet other projects, several funded by sponsors, met with only a small level of interest. As always the Society will do its best to read the signs of the times and try to work out where its always limited resources can best be directed.
1. Management Committee
The Committee met monthly throughout the year. Our outgoing president and driving force, Paul Leverenz, chaired all meetings except the last. Paul left to take up work interstate in October. Several other members retired through the year for a range of reasons. I thank Peter Evans, Peter Worsley, and Rebecca Cordingley for their contributions. Continuing members included Kirsty Cordingley, Glen Domeika, Adrian Hill, Geoff Wilson, and Margaret Wing. We were pleased to welcome a new member late in the year when Denise Stephens was coopted as Honorary Secretary.
Our key achievements included:
I have acknowledged above two grants which have assisted our youth wing to undertake several useful initiatives. We also secured in 2002 a grant from the Sunshine Foundation to enable us to explore ways of better targeting self-management courses to meet the needs of people with ME/CFS. Trying to acquit this in fact turned into something of an epic. Several volunteers for a leaders’ training course dropped out at the last minute on more than one occasion. After stretching the goodwill of the Foundation with several extensions we amended our approach and a number of members are now undertaking the basic self-management course run by the Arthritis Foundation. We will hold a review meeting in December and pass on any recommendations to the course managers.
The Society’s financial resources remain limited. We have been fortunate that for the second year in a row we have been sent an anonymous donation of $12,000. Roughly speaking this has meant that instead of facing a deficit of around $6,000 we have finished the year in the black by around the same amount. We cannot of course count on this good fortune in the future.
5. Key directions and issues
I believe that we need to find ways to sustain services to members and to lobby on their behalf without burning out the few members and volunteers who come forward to work for the common good. To this end we will look at ways of working with other disability societies.
This year we investigated collocating with Cystic Fibrosis SA. The aim was to reduce our rental costs, share resources, maintain extended reception desk hours and go for grants together. In the end the idea fell through but we hope to maintain our links with CFSA and shared accommodation remains on the table. We also this year took another step in this direction. To rationalise the effort which goes into Talking Point, especially with the departure of Paul Leverenz, we have negotiated with the Victorian ME/CFS Society. Henceforth we will use key material from its journal whilst maintaining South Australian content.
My personal view is that we must continue to look for ways to share resources. We must value our identity as a supporter of and a voice for people suffering from one of society’s less high profile illnesses. But we remain only a means to an end and if we can find better ways to work for our members by sharing resources then we should be happy to go that way.
I am certainly mulling as I write this as to whether our membership alone is adequate to sustain some of the programs for which we work hard. The low response to the SAYME camp and the self-management course lead me to think that we would do better to keep broadening the catchment of our users by sharing projects with other societies in this State. This is an issue on which I would appreciate members’ feedback.
This is a moment to thank one person above all. We are much the poorer for losing the passion, talent, skills and determination of Paul Leverenz, our president for the last several years. Paul has been simply outstanding and is respected nationally for his leadership here. He has worked hard to maintain contact with the medical and research communities here and I hope that we can fill his shoes in that and other areas. It is wonderful that he now has full-time paid employment and we all wish him well.
I want also to thank especially Patricia Smith for her work not only in managing the office so well but for being there to either assist or to drive all our major events this year. With her in the office has been a group of volunteers who are not only efficient but who create a calm and pleasant atmosphere: Donna Briese; Donna Smedley; Marg Wing; Trisha Moores; Joseph; Di Fleet; and Christine Hickman.
I thank also the coordinators of our various support groups throughout the State. Not least the Society is grateful to the people who coordinate and run our crucially important Support and Information Line: Jon and Vicki Foote; Alex Harris; Elaine Balfort; David Andrews; and Marilyn Pennack.
SAYME’s varied programs this year would not have taken place without the work of a number of its members. Elizabeth Cahalan above all has not only edited the magazine but assisted with both the support groups and in general has been the de factor coordinator of the SAYME program. Other key members have been Kristin Mulvihill, Skye Yuill, Emma Wing, and Sarah White, whilst Bec Cordingley was designer and webmaster of the website.
As usual, in thanking some people by name one is conscious that other members and volunteers have done great service but have been left in the shadows. I hope that they accept my apologies for passing them over.
There are many people in this State who are affected directly or indirectly by ME/CFS. Their needs are paramount and the Society exists only so that their lives might be made more pleasant and productive. They deserve more support than the Society, alone and unaided, can give them. It makes all those of us who work for them more than a little angry that the Society has to operate without any level of State or Federal government support whilst societies serving similar or even smaller numbers of clients receive recurrent funding support. We won’t see that change in the near future. But we will persist in working towards it. In this and other ways the Society remains the best hope of a better deal for South Australians coping with the challenge of ME/CFS.