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.
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Annual Report 2004
It’s my pleasure to deliver this annual report. Last year we had not long farewelled my excellent predecessor, Paul Leverenz, and so this is really the first report where I have lived through all that I report on!
It’s been a good year. In fact, it’s been better than your committee probably had hoped for when it first met after last year’s AGM. We were all very conscious then that the Society relies on a handful of people. And we felt pretty daunted by the challenge ahead. Still, we had a go at it and thankfully things have gone fairly well.
Our key achievements included:
We contributed to the important new publication aimed at assisting general practitioners to identify and help patients to manage CFS. The ME/CFS Guidelines took two years to develop and resulted from the efforts of a working party of medical practitioners and researchers with two Society representatives. I tender our thanks to the chair, Prof Justin Beilby, and to Associate Prof David Torpy, Dr David Gilles, Dr Richard Burnet, Dr Rey Casse, Dr James Hundertmark, Dr Milton Bowman, Dr Bruce Wauchope, Dr Ian Buttfield, Dr Richard Kwiatek, and the Society representatives Paul Leverenz and Kristin Clark. I also particularly thank Dr Peter Del Fante who assiduously worked on every stage of the drafting. And I thank our partners: the Department of Human Services (now Health) and its representative Mr Bruce Whitby; the Adelaide Western Division of General Practice; and the University of Adelaide Department of General Practice.
The Guidelines have now gone out to every GP in the State. We don’t expect every one of them to use the document. But we’re heartened at stories of doctors very quickly discussing them with patients. And it’s great to know that CFS societies in other States have seized on them eagerly. The Guidelines are now available for downloading on the NSW Society’s website, as it is on our own. Victoria and the ACT have also sought bundles of them. There’s no doubt that it’s a document of national significance and it’s a matter of pride that South Australia has produced it.
Parliamentary inquiry into Multiple Chemical Sensitivity
We used a rare opportunity to get a message across to the State’s politicians about an aspect of CFS which affects about half our members. State Parliament in 2003 asked its Social Development Committee to investigate a range of issues associated with what is often called Multiple Chemical Sensitivity. Writing submissions to such committees can be an arduous task. But we were fortunate that member Lorenzo Pizza took on the job and prepared a draft. Former committee member Peter Evans and I then refined it and it went off to the inquiry. I was then called upon to speak to our submission before the Committee on 25 October.
Through this your Society was able to remind State parliamentarians of the large numbers of people suffering from CFS and MCS in South Australia. We stressed the need to make the health-care system more accessible and argued the need for an officer dedicated to dealing with ‘chemical injury’ to be appointed to the Department of Health.
As part of the process, we co-convened with the Task Force on Chemical Injury a workshop in September. Twenty people attended, the great majority of them members of the Society. It brought out for me especially the huge problem with some highly sensitive people have to gaining safe access to places of health care such as hospitals because of a lack of awareness in management and staff of the need to provide chemically-free zones at least somewhere for them. I was heartened that the MPs on the Social Development Committee were also shocked by this.
The Committee’s report should appear in the first half of 2005. We must then – all of us – work to ensure that it doesn’t lie neglected on the shelves whilst more vociferous lobby groups are given priority.
Your committee takes the view that in the long run we need to be more closely aligned to other disability societies. It is utterly clear that we will never get very far in securing the resources which we need from government if we push for them on our own. Even though we speak for between 3000 and 7000 citizens, many of them very sick indeed, we are well down a long queue and vie for attention with formidably organised and better-connected lobby groups. And why should governments support a myriad of small organisations? It’s not always the most efficient way to deliver services.
So in the past two years we have kept in touch with Cystic Fibrosis SA regarding possible collocation at some time. Some of the urgency has gone out of this. Our financial position has become more stable and our new landlord at the Epworth Building has raised our rent somewhat but not excessively. But we have to keep the option open for sharing accommodation with CFSA and/or other groups.
We have also tried to develop our profile with other disability organisations by being active members of the Neurological Council of SA. This brings together over 20 organisations. Like everything else it is run by volunteers – in this case mostly the paid employees of larger organisations.
We have continued our involvement in the Council’s joint exercises at agricultural field days. Our thanks go to Denise Stephens and Donna Smedley who staffed our section of the Council stall at the Lucindale Field Days in March. It’s really important that the Society has a presence at regional events such as this but it does demand several days’ commitment from those concerned. For that reason we chose not to be represented at several other field days this year.
As well as that, it was at our urging that the Council sent a letter, which we drafted, to the Minister for Health. In it the Council asks for the Department of Health to undertake a review into how it funds disability organisations and to then make public what its criteria are for the massive inequities in the funding available to various organisations.
Because we are at present totally independent of government we can be that much more at liberty to say that which other organisations think. It is quite distressing to read the annual report of, for example, Novita (the former Crippled Children’s Association) and to see that the State government grants to it for services to around 1000 clients amount to around $9m. If just one of those nine million dollars were made available to the rest of us, then there would undoubtedly be some cutback in services to Novita’s deserving clients. But our members, also deserving but with virtually no access to services, would at least get something.
As I said, it is not normally seen as polite or good politics to say this sort of thing. But politeness doesn’t always get results. We have nothing to lose at this point and perhaps something to gain for our members. But round one is not to ask for money. Round one is to get the government to explain itself. Then we can have a good rational argument.
We will continue to work with our fellow organisations on the Neurological Council for the interests of all those people for whom we collectively fight.
Our resources are slight. But modern technology means that we can communicate much more readily with our members. So this year we started working on ways to use it. The focus has been on getting the information that comes into the office passed on to members as quickly as possible. So we have posted a regular flow of items on our website (www.sacfs.asn.au). Its webmaster is the jovial and efficient Peter Scott. If you have access to the Internet, please bookmark our site and look at it every week or two. Because that’s roughly the rate at which we add new items to it. I think it is now the most actively updated CFS society website in Australia.
We have also taken to sending irregular (but fairly frequent) e-bulletins to those members whose email addresses we have. That’s about half. The response from them has been very positive. But we want to bring the other half of our members, who don’t have easy access to the internet, into the flow of communications. We aim therefore to recruit several volunteers who are willing to come into our office and just get on the phones to these members to keep them more or less apace of what their networked co-members are learning. In the meantime our thanks go to volunteer Michael Ritter, who handles this and a range of other IT issues for us with good humour and aplomb.
2. Other activities
3. Management Committee
The Committee met monthly throughout the year. Its membership changed somewhat. Glenn Domeika, who has been a member for the last three years, resigned in mid term for family reasons. Our honorary secretary Denise Stephens also retired near the end of her term. We thank them both for their efforts. Our numbers were starting to look depleted. But then no less than four people came on board. Office volunteers Donna Briese and Donna Smedley and SAYME member Emma Wing joined the committee. And in response to our call for an honorary secretary we struck lucky with member Peter Mitchell who had just decided to retire as a high school principal with years of experience as the hon. sec to the principals’ association. It’s been great to have this new blood on the committee. Unfortunately an onset of ill health has forced Donna Smedley not to continue and I thank her. I also especially thank the ongoing stalwarts of the committee: Marg Wing, Adrian Hill and Geoff Wilson. We have tried to take the approach that people do what they can over a sustained period rather than to burn themselves out in a short time. Each of these people has now served three years and will be continuing. They therefore provide a real stability to the committee.
There are many people who should be thanked for their work for the Society. Some of them are in country and suburban areas and, because I haven’t met them, I might be in danger of overlooking them. We hope in 2005 to extend personal contacts from the office with some of these groups.
But I have seen at first hand the work of several people who have provided outstanding service. Patricia Smith was our office coordinator for 2.5 years until she retired early this year. She did an outstanding job of running the office and also taking on a range of projects from time to time. We miss her and I note that somehow or other a long-planned farewell ‘do’ for her has never happened. Such is life!
After Patricia’s departure, the mantle of keeping the office ticking has fallen especially to Donna Briese. Donna has worked tirelessly, despite the ill health she shares with many members, to keep us up to speed with the many day-to-day matters which we must attend to. She has the thanks of the whole committee and to that I add my thanks to her fellow committee-member, Marg Wing, who has regularly come in on Thursdays.
I thank once again 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. I can’t overstate the importance of their work and I wish that we could recruit more people to support this devoted team, who have been at it for years.
5. Future directions
When your committee meets to plan the Society’s 2005 program, here are several key things which will be on the table:
We also want to build our base of volunteers. We’d like several people as office volunteers who can also focus on telephoning our isolated members. We’d like people willing to: help organise our badge day; take on the running of our lecture/workshop program; undertake PR and media relations for us; go to agricultural field days; and take on special project work from time to time when we’re asked to provide input to government reviews and so on. Coordinating some of these activities and new volunteers for them might tax the energy of our existing workers. But we’ll give it a go. Basically, if people can take on some defined jobs and stick with them for several years, that would be wonderful.
I hope that this report will give you confidence that the Society is serving your interests and those of all people with ME/CFS in South Australia. We have done things in 2004 which we are proud of and which have won us the acclamation of other societies elsewhere in Australia. We hope to build on the good foundations of this year and of the previous years in 2005. I wish you all good health and, if that is not possible, then a strong spirit.