ME/CFS South Australia 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.
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Society AGM: President's report and farewell speech
Sunday 8 November 2009
The Society held its Annual General Meeting yesterday (7 November) and outgoing President Peter Cahalan (pictured) took the opportunity to give his annual report and farewell speech.
President’s report for 2009
This is my last report as president of your Society. I leave with a sense of regret at jobs unfinished but with pride at having been given the chance to work with many wonderful and heroic people.
The theme of this year was rationalising our effort. We did this in several key ways.
There’s nothing romantic about shifting offices. Not from the perspective of members who are more interested in health and pastoral care outcomes for themselves. But it was necessary for us, with our finances under pressure and our landlord in Pirie St intending to raise our rent, to find cheaper accommodation. We had been looking for a new HQ for several years with a second criterion in mind. We wanted to collocate with at least one other, preferably larger, disability society. Our rationale was that we would thereby gain from their greater experience and know-how.
Earlier this year we found accommodation which met both criteria. And in August we moved to 266 Port Road, Hindmarsh to become tenants of Epilepsy SA. Epilepsy SA have been excellent to deal with and we are especially grateful to one of its volunteers, Gerry Adams, who has been immensely helpful to us in organizing the telephone and computing network changeover.
The move was a massive task logistically. The old offices had to be cleaned up and vacated and our files sorted and made ready. There have been a thousand and one details to sort out and, working as I do much of the time out of Adelaide, I could only watch on as a veritable email blitz went on between our small team of workers as they sorted things out. We all owe a huge amount to Emma Wing, Spen Langman, James Hackett, Lorenzo Pizza, Lynda Brett, Richard Cocker and Mike Ritter for their involvement on many levels.
We are now settling well into Port Road and already there are signs of flow-on benefits from our proximity to our welcoming landlord and neighbor, Epilepsy SA.
Talking Point merges into Emerge
After some years of discussion at a national level, we moved this year to fall in with the ACT and NSW and use the Victorian Society’s Emerge as our magazine. The intent is that in time we would have one national magazine rather than a series of smaller ones. In our own case we have benefited from reprinting articles from Emerge with the kind permission of the Victorian society for several years.
So we printed our last Talking Point at the beginning of 2009. We felt a pang at doing so. It’s been our magazine since the beginning of the Society and it’s been run capably and with no fuss by the magnificent Peter Scott for the last eight or more years. We have had two issues of Emerge to date and will be reviewing how to make sure that in becoming part of another Society’s magazine we don’t lose altogether a sense of the identity of the South Australian ME/CFS movement. For those members who have expressed the comment that Emerge does not match up to Talking Point as ‘their’ magazine, we can assure them that we will keep in touch with our great colleagues in Victoria about how it can look more like a shared magazine.
We ran a varied seminar program this year.
Endocrinologist and ME/CFS researcher Dr Richard Burnet spoke at our AGM in 2008. In 2009, we have had member Ray Zegebroks start the year. Lawyer John Steele spoke on ways to use anti-discrimination laws and processes. Dr Ross Philpot spoke on Rickettsia and ME/CFS. Psychologist Liz Vaskin led a session on mindfulness, meditation and ME/CFS in the tranquil setting of the Sophia Centre. And naturopath Belle McCaleb finished the season with a wide-ranging talk on diet, detoxification and other matters.
Once again member Lorenzo Pizza put the program together and attended to all the details. It was a particular pleasure to the rest of the committee that, after resisting our blandishments, he agreed to become one of us late in the year. He has taken on a big workload for us and brings welcome new energy to our meetings.
Our support group network is entirely rural these days. There are three groups: North Yorke Peninsula; Clare Valley; and the Riverland. The new Riverland group have been quite active and are justifiably proud of their successful involvement in the last two Riverland Field Days, where they have run a stand. Our thanks go to the Shepherds and Jacksons for their leadership.
Our use of new media to connect people with ME/CFS to the world remains our great strength. We were a little quieter in two areas this year. My work commitments prevented us continuing our tradition of sending out an e-bulletin every week. But Peter Mitchell took up the task and has produced them on average once every 2-3 weeks. We also have used our SMS message service less this year.
But our website www.sacfs.asn.au has just continued to get stronger. We are now nearing 3 million hits a year with over 600 unique visits a day on average. Peter Scott as webmaster has achieved this build-up with some help from the rest of us but really almost alone and unaided. He posts at least one new item every day. We now have specialist sub-sites – eg for the hot news from around the world about XMRV – and have even started seeing how we go raising some funding via Google Ads.
In addition our Facebook site, managed by James Hackett, has taken off. It began slowly a year or so ago, with membership hovering in the dozens. We have now just passed the 300 mark and with increased numbers comes increased traffic. Our intent with it is to have members advising members and sharing wisdom and there has been a noticeable increase near the end of the year in the range of topics being discussed and the speed at which comments are exchanged.
Our chief lobbying over the past few years has been around Multiple Chemical Sensitivities (MCS). The government’s Interagency Reference Group on MCS met several times again but with progress maddeningly slow for the ‘consumer’ representatives (who include Peter Evans, Cathie Powell, myself and the hugely supportive Dr Ian Buttfield). We maintain a section of the Society’s website on MCS and through it we do what we can to assist the passionate but unresourced national network of MCS activists.
One of our core aims over the past few years has been to encourage members to become political activists. A small committee burdened with operational chores can’t bend its energies to lobbying at all times when it’s needed. So by passing you information on the politics of ME/CFS and related conditions, and on health and disability policy at State and Federal level, we’ve tried to build your confidence that you can directly put pressure on politicians and other decisionmakers.
We have a State election looming. Let’s hope that, as a minimum, anyone knocking at your door gets a good serve about the need for the State Government to put more resources into primary health care, environmental and preventive health programs and into providing some support at least to smaller groups such as ours so that we can support you.
Our national association’s board had an active year. Our president Paul Leverenz set a cracking pace and we tele-conferenced monthly and had a two-day meeting in Canberra in October. Your president is the SA company director with Peter Mitchell as an active alternate director. The association is moving steadily towards more active lobbying work at the Federal level. Our thanks go to Paul and to secretary Dean Cording for the energy which they have put into this – as with most things ME/CFS – under-resourced central body.
I accepted membership of the State committee reluctantly eight years ago and the presidency even more grudgingly five years ago. But as is often said, you learn so much from being involved in community affairs. We’ve surfed the wave of the Internet and grabbed the opportunity to lobby on environmental health. We’ve been lucky to be the chosen meeting ground for two international seminar symposiums on ME/CFS. And for some time we enjoyed freedom from financial worries courtesy of a generous benefactor. Above all, I’ve been blessed to have worked with a committee which I can honestly say has worked harmoniously with hardly a cross word ever spoken.
At the end of it all I probably most regret one thing. That is that we were unable to dedicate the energy to working with the medical profession and other health professions more actively to transform their awareness of ME/CFS and related conditions and to translate awareness into better treatment. There is a worldwide lack of skilled GPs and specialists able to diagnose and treat the conditions. Hopefully that situation will improve here and elsewhere. Lacking systemic approaches – via medical school curriculum change, GP training sessions and the like – the answer is most likely to lie in informed ‘consumers’ marching into doctors’ rooms armed with the Canadian Guidelines or the latest best-practice research news taken off our website and getting them to look at it! In short, a few committee members can only do a little. United, the entire movement of people with ME/CFS is a force to be reckoned with.
On behalf of your committee I wish you better health and a spirit so positive that, within the limits of your health and circumstances, you are able to take on the forces which prevent you from leading life to the fullest.
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