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 2007
I want to begin by acknowledging the spirit of all those people who fight valiantly against the challenges of ME/CFS. The Society itself is the expression of that spirit.
The last year saw some terrific achievements for the Society as well as the usual vagaries of fortune. It is my pleasure to report to you on the year that has passed.
1. The 2007 Experts Forum
1. The 2007 Experts Forum
For the second time in three years Adelaide was fortunate to be the host city for an important gathering of international and Australian experts on ME/CFS. The forum was organised by the wonderful Alison Hunter Memorial Foundation as part of its long campaign to improve the state of research into the condition in Australia.
Professor Kenny De Meirleir (Belgium) returned to Adelaide after being the keynote expert in 2005. Professor Abijhit Chaudhuri (UK) came to speak about his work in trying to improve pathology protocols in cases where people have died from ME/CFS – an important issue for researching and validating the condition. Dr Dan Petersen (USA) is an eminent figure in the American scene and emeritus Professor Malcolm Hooper has campaigned for people with ME/CFS and MCS (multiple chemical sensitivity).
The four spoke at a packed meeting at Norwood Town Hall on 25 March. They then spent two days in an intensive series of presentations and discussions with Australian researchers and clinicians. I sat in on the meeting and came away struck by how many biological markers of the condition are emerging from research around the world. Such an event with many hundreds of people attending requires lots of work from many people. I want to thank Lynda Brett again for her outstanding coordination of the event, ably supported not only by the whole committee but also by about a dozen other hard-working volunteers. Without their enthusiastic support, it would not have been the huge success it was. I particularly give thanks to Di Fleet for her huge effort in helping to promote the event.
We have struggled in previous years to organise a structured annual seminar program. This year saw a major breakthrough. One of our members, Lorenzo Pizza, stepped forward to organise the program and take pressure off our small and hard-pressed committee. As a result we had our best year of seminars in recent memory. Our thanks to Lorenzo for marshalling speakers and managing the series. His work took a big burden off the committee, and allowed them to focus on other matters.
The seminars were as follows:
Several of these presentations and associated material are available on our website. We thank all the speakers for giving us such a great series.
To have delivered a planned and coherent series of seminars was a real fillip after the previous years of drought. Most hearteningly, Lorenzo had by August already prepared the 2008 seminar series. In fact, we now face a potential surfeit of riches and might delay several sessions until 2009. It’s a nice place to be in and undoubtedly it’s been one of our best achievements for 2007.
3. Political campaigning
Dr Dan Peterson made a very interesting comment during the Experts Forum. He remarked that ME/CFS societies around the world had made the mistake of focusing overwhelmingly on providing support to people with the condition and ignored politics. If we are to get more funding for research and improved health, education, welfare and employment conditions for people with ME/CFS, then we have to get out and lobby. The trick of course is to work out how to both support members and also do this political work.
We took heed of Dan Peterson’s comment. We spent much effort this year encouraging members to take on the task of lobbying candidates in the Federal election. We decided that in the long run it is better to mobilise collective effort than to rely on the Society’s hard-pressed official representatives to do all the political work. We have also found that the political lobbying process allows many of our members to make a contribution to the society, even while house-bound. A single letter or email from a member can help enormously, especially if it is repeated ten- or twenty-fold across the membership.
We used our website as our key campaigning tool. Member James Hackett pulled together data on all eleven electorates in South Australia. We encouraged members to tackle local candidates and furnished them with material from the ME/CFS Association of Australia and the Western Australian Society. A number of members responded and in fact we had enquiries from people in other States seeking advice on how to approach their candidates. The overall number of members who took up the challenge was small, but nevertheless a good start. But we believe that we have learned a lot from the exercise and have helped to encourage a number of people to learn how to play the political game more effectively. Hopefully we can keep building momentum in this crucial area of collective advocacy. Our ultimate target will be a really strong showing in the next State elections, to be held in two years’ time. Thanks to all who put the effort in this time.
We have continued to build our reputation for excellence in communicating with members and other people with ME/CFS.
We also keep in touch with members via SMS text messages and phone calls. The latter work has rather dropped off this year and we hope that if we can recruit some additional volunteers we can once again renew stronger contacts with members – especially those not accessible by email.
As a result of the continuing efforts to keep in touch and also as an outcome of our increased seminar activity, we gained a whole swag of new members this year. There has not been a great net increase in membership – as a few people always drop by the wayside – but we have stabilised at the 300 mark.
5. National Association
The ME/CFS Association of Australia Ltd is our national peak body. I’m the SA Society’s nominated director and Peter Mitchell is my alternate director and sits in on our teleconferences. The Association ended last year strongly with an excellent two-day meeting of Directors in Melbourne. We decided on a series of achievable projects to get on with and left each other in positive spirits. This year unfortunately saw the energy sag. I’ll comment on why.
We had intended to concentrate on doing the few simple tasks we had agreed on. We have no real funding and the directors are mostly people already flat chat running State societies and other groups. So keeping it simple and steady made sense. Instead, we found ourselves embroiled in what the SA delegates from the beginning saw as an unproductive debate over what name to use for the condition. Several members decided that we ought to revisit the name ME/CFS and wanted to get rid of the ‘CFS’ tag altogether. A flurry of long emails followed and in the end we were left still without a consensus on that matter and feeling less cohesive than when we had left Melbourne.
So we hit a rather low spot for a while. It coincided with the decision of our eminent president, Simon Molesworth QC AM, to resign because of the pressure of work and other business. Our able company secretary Nola Miles also resigned to deal with an increased flow of work for the Victorian society, which has been very successful in securing a range of grants for projects. Another director also resigned leaving us at present without a Western Australian representative. But we have pulled through and our former SA president Paul Leverenz has been voted in as our new National president and we believe we have found an able new company secretary.
The moral of this is that working as we do with so few resources and so many challenges, those of us in the ME/CFS movement need to be pragmatic and mutually tolerant. This Society has copped occasional flak from people who think we ought to get rid of the words ‘chronic fatigue syndrome’ from our title, for instance. Frankly, your committee is not going to spend its scarce time struggling with medical terminology or looking at changing our name. Developing an international consensus on nomenclature and definitions is a job which we will leave to international forums and better-resourced movements.
6. The Multiple Chemical Sensitivity campaign
The campaign to extract the maximum benefit from the 2005 parliamentary report on MCS entered a new phase this year. Last year we had been frustrated at government inaction and highlighted this by running an MCS Clock on our website. Partly in response to our pressure, the Department of Health finally in December 2006 convened a Reference Group and in 2007 that committee slowly cranked into action. The committee includes representatives of the Department of Primary Industry and Resources SA, the Environment Protection Authority, Safework SA, the Department of Families and Community and the Department of Health. There are also two representatives of the Local Government Association. “Consumers” are represented by Peter Evans, the indefatigable convenor of the SA Task Force on MCS (and a member of the Society), Cathie Powell of the Bridges and Pathways Institute and myself representing the Society. In addition Drs Bruce Wauchope and Ian Buttfield are members and both are good allies.
After a slow start as we got to know one another, the committee gathered momentum over the last few months. PIRSA has drafted a set of guidelines on the use of pesticides and herbicides for use by local government authorities especially. The Department of Health has committed itself to shaping protocols for hospitals regarding the treatment of people with MCS. The Department of Families and Communities has also committed itself to improving its policies and procedures on MCS and to disseminating them throughout the public sector. There is still much water to flow under the bridge before these various policies are fully shaped, endorsed and implemented. But for the veteran lonely campaigners, they represent a decided increase in the momentum of the campaign.
We have also renewed late in the year our discussions with the Catholic Education Office about MCS policies for Catholic schools. The CEO hopes to have a policy endorsed by March 2008 and has already moved to improve its approach to building and refurbishing facilities.
It has been nice to move beyond huffing and puffing noisily – and perhaps thereby stirring some members to ask whether we were too focused on MCS issues – to a quieter and more focused phase of the campaign.
SAYME again had a quiet year. Coordinator Emma Wing has been heavily burdened with her general work on the Society’s committee and in the office and yet has managed to hold one gathering at her home, along with telephone and email contact with members of the group. The Committee has tried to give some time to working out how to give more support to SAYME as we regard it as fulfilling a crucial role in a number of areas. We have not been able to find a solution yet but will keep looking.
One long-term project relating to the needs of young people with ME/CFS almost came to fruition this year. Peter Mitchell took on the role of reviving a long-dormant project – for which we had a grant – and we are ready to go to print with two brochures for schools and students about how schools can assist young people to gain the best possible education despite the challenges which ME/CFS poses. The brochures will make some impact once disseminated widely for the 2008 school year.
8. Support groups and the support line
It was a year of some growth in this area, although our Adelaide Support Group folded early in the year. But that loss was offset by the establishment of a new Riverland Support Group. I attended an excellent meeting in Berri in October and we thank Simon and Raelene Jackson for their work. We also thank David and Glenda Shepherd for attending on behalf of the excellent Northern Yorke Peninsula Support Group. That group has had a good year. It held its usual meetings and also staffed a booth at the Paskeville Field Days. David Shepherd is also helping to launch a Clare Valley support group within a few weeks. The three country groups together cover the middle belt of regional SA from Renmark to Wallaroo. They are joined by the one continuing city group based at Glenelg and capably led by Marion Hansen.
It would be great if we could see one or two more regional support groups established in the next year. In all cases we rely on the leadership of committed members such as those mentioned above. That country members – especially if not on the Internet – can feel particularly isolated is a matter of continuing concern to the Society.
Meanwhile our wonderful trio of support line workers continue to answer telephone enquiries from all parts of the State. Elaine Balfort, Vicki Foote and Alex Harris have stayed at this task for years now. The committee gets regular reports from them and is always struck by the range of issues about which they are called up on to provide advice. We gather that the internet revolution has changed their work in two ways. At one level there is somewhat less demand than some years ago as more people use the web to find answers and information. At another level the high profile of our own website has meant more enquiries from interstate.
Once again the effort to support people with ME/CFS and get a better deal for them has fallen largely upon a few people. Almost all have ME/CFS or are close family and supporters of people with the condition. Once again it is my pleasure to thank them.
10. Reflections and future directions
There are some key trends and issues for us. They include:
I want to conclude this annual report with greetings and respectful best wishes to all the courageous and talented people who share in the work of our Society – which, incidentally, celebrated its twentieth birthday this year.