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 2006
I want to begin by acknowledging all those people who are part of our community but unable to join in its affairs because of the severity with which ME/CFS affects them.
The last year was one of fluctuating fortunes for the Society. There were times when your committee wondered if we were making inroads into the many challenges facing us. But it’s nice to report at year’s end that things have gone generally in the right direction.
We continued to focus on strong communications with all members as our main ongoing activity. The key elements were:
Perhaps the nicest feedback we had on the communications strategy came from Dr Peter Del Fante. He remarked some months ago that there was a distinct trend in patients mentioning to him that the website and bulletins were helping them feel better by linking them to the latest research and to a wider community of PWCs (people with CFS).
We had planned to run an increased range of seminars this year but for want of someone to coordinate them and other reasons ended up in fact with a slim program. The highlight was a well-attended meeting where Drs Ian Buttfield and Kerry Callaghan talked as veterans in the treatment of PWCs in this State. At year’s end Lorenzo Pizza has stepped forward to take on the coordinating job in 2007. So we’re hoping for a stronger program next year – and are off to a great start with the planned workshop with international experts in March.
We did have an interesting variation on the normal meeting format earlier in the year. We planned a meeting for parents of children with ME/CFS. In the event, only one person came along -by telephone. So Marg Wing, my wife Penny and I sat with the phone on loudspeaker at our house and Clytie Siddall from the Riverland had a long and interesting discussion with us. It’s interesting that this is the second meeting over the last couple of years where we have tried to target parents – traditionally actively concerned about what to do for their sick children – and yet had a low turnout.
3. National Association
The ME/CFS Association of Australia Ltd has been hitherto a frail enterprise. With minimal funds of its own and meeting only two or three times a year by teleconference it has struggled to advance our cause nationally. But things changed this year and for the first time the Board met for two days in Melbourne in October. The directors are mainly State presidents although as company directors we are there to take a national perspective.
We agreed unanimously that we had to develop a stronger and more coordinated approach to supporting people with ME/CFS across Australia. Measures agreed to included developing a common name, logo and other branding material to be used by all State societies; a common website and magazine; common fundraising and other literature; and support for the administrative costs of the Alison Hunter Memorial Foundation, the movement’s research fundraising arm. We looked at our basic needs and decided that we would have to seek increased support from State societies – from a present $1 levy per members to as much (or as little) as $5 a member.
Your committee endorsed these proposals, including the increased levy, at its October meeting. As I write WA has followed suit and so has Queensland with some qualifications.
The development of a stronger national body will put pressure on our budgets and involve some lessening of our capacity to do our own thing. But the State committee is agreed that we have to take this step. I hope that by this time next year you will have begun to see the impact of the decisions taken at the Board meeting.
4. The Multiple Chemical Sensitivity campaign
The campaign to extract the maximum benefit from the parliamentary report on MCS was an active one this year. Key aspects of it included:
Peter Mitchell, Peter Del Fante and I met with the Director of Primary Health Services for the Central Northern Region, drawn by an understanding that we might have some hope of getting a project officer appointed to research the needs of PWCs. We came away disappointed. One thing the meeting underlined was that if we could show that PWCs are clustered in one or more particular areas, we might have a better case. Well in fact we’re spread thinly across every part of the State. But we are now developing from our membership list a map showing where our members live to give us some idea whether there are cluster areas. If so we’ll use it in further negotiations with the health authorities.
We’ve also maintained our membership of the Physical and Neurological Council, the umbrella body for several dozen disability societies. The PNC secured a Department of Health grant to investigate whether its member societies could deliver shared services which might – only might – enable it to secure some measure of State government support. The Society has been clear for some time that we can’t get government support on our own so this hopefully a step in the right direction. The end result, we’d stress, is not to get resources for the Society but to deliver more assistance to our members.
6. Pilot research database project
The Society was a partner in a project run by Dr Peter Del Fante and Prof Justin Beilby to develop a small database outlining the history of their condition as recorded by PWCs. The initial database ran to 75 people and the final report of the project, which was for some time bedevilled with delays, came out in mid-year. Kristin Clark, one of our members, was the project officer for the database and did a great job.
SAYME had a quiet year. Coordinators Emma Wing and Sarah White were heavily burdened with other committee work and with fulltime study respectively. Nonetheless several meetings were held and Emma published several copies of the SAYME magazine. Her efforts were admirable given all her other work for the Society and we were all delighted when she was nominated for a Young Australian of the Year Award. The committee hopes to give more attention to ways of sustaining SAYME in 2007. For those of us who have been around the Society for some years, its value is very clear. It has a big impact on the young people and their parents who have participated in it and it has also been a training ground for leaders of the Society generally.
The Society runs on the efforts of a fairly small pool of people around the State. Once a year we get to thank them officially. They include:
9. Reflections and future directions
What did we learn in 2006?
On behalf of the State committee and all who actively work for our cause, I tender this report to the wider membership.