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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

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.

Disclaimer

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.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

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Annual Report 2005

By Peter Cahalan, President ME/CFS Australia (SA) Inc

I am writing this not long after leaving a small but productive bit of political lobbying. I thought it had some things to tell us about the value of putting a bit of effort into politics (whilst waiting for the medicos to come up with the cures for ME/CFS).

1. Some productive lobbying at Local Government Association House
2. Our communications efforts bear fruit
3. The Annual General Meeting
4. And thanks

1. Some productive lobbying at Local Government Association House

Our indefatigable member Peter Evans (aka convenor of the SA Task Force on Multiple Chemical Sensitivity) organised another annual No Pesticides Rally on December 2 [see article on page 6]. The venue was LGA House in Hutt St. The LGA was targeted because the Social Development Committee’s report on Multiple Chemical Sensitivity had some critical things to say about the poor performance of many councils in SA with regards to protecting chemically sensitive ratepayers from their spraying of herbicides and pesticides.

How many rolled up? Not many – in fact, 19.

But:

Two politicians attended: one sitting MP (Sandra Kanck MLC, Australian Democrats) and one aspiring member of the Legislative Council (Mark Parnell, Greens).

The executive director of the LGA, Wendy Campana, came down to speak to us. The LGA had previously sent a ‘can’t-do-much’ response to us previously. But I’d been able to get hold of a contact on its staff and speak to him at length that morning and clearly he’d spoken to her. Because she spoke of perhaps investing some effort in producing some guidelines for local councils on how they can perform better in this field. One option my contact had mentioned was spending a small amount from the LGA’s research and development fund to employ a consultant to draft guidelines.

The president of the Soils Association of SA attended, keen to link her society’s lobbying efforts with ours. They’re actually the organic growers of the State. She happens to know at least one internationally-regarded local expert who might be able to prepare guidelines for local councils if the LGA decides to go that way.

Finally, I was delighted that several of our members came along. Wendy Begg brought an MCS friend Aviva; Freya Thompson brought her boyfriend; Helen O’Day struggled there on public transport to support the cause; and Michael Ritter, our IT coordinator, rolled up and found himself turned into a paparazzo, snapping shots of the event. That these members attended is in part an outcome of our efforts to keep reminding members – at least those on email and mobile phone – in the weeks leading up to it.

So it was a neat little sample of grassroots politics at work. Not many activists but an attentive political establishment and some excellent alliance-building between various interest groups. And of course further vindication of our efforts to boost our communications with our members.

However, there was one big sour note for me from the day. Peter Evans showed me the response of the Minister for Health, the Hon John Hill, to the various recommendations of the Social Development Committee on MCS. The Minister – or his Department – has in effect refused to do anything about a number of the recommendations, arguing that since the causes of MCS as not fully understood it is too hard and not a priority.

Your committee will be in touch with you over the next month or so to let you know what we all collectively might do to put pressure on the State government to be more positive about a problem that affects half our membership. After all, it’s election time in March and if we just sit back doing nothing, we’ll continue to be ignored. We might well be ignored anyway! But as the rally outside LGA House showed, a few people can achieve a lot with a bit of effort.

2. Our communications efforts bear fruit

Michael Ritter drew to my attention on the day of the rally the statistics relating to our website. If you’re on the web you can access them at www.sacfs.asn.au/stats. Not being that literate on such matters, I could get the fascinating array of graphs open but wasn’t sure what they meant. Michael has previously estimated that we get about 30 000 ‘unique’ visitors (unique as opposed to the same visitor coming back more than once to ‘hit’ the site at one time) a year. The new figures suggest that we are heading for a 2005 total of almost 80 000 ‘visitors’ this year. I can’t figure the difference between unique visitors and visitors but the inference is that we’re doing even better than we last estimated. We are certainly averaging over 200 visits a day. You can check monthly pie-charts showing where people came from. The figures fluctuate. But over half the visitors are from outside Australia with a lot of Americans.

That said, I was interested to learn from Wendy Begg when were chatting outside LGA House that she rarely opens up the Society’s website but always reads our weekly e-bulletins. These started as simply a device to promote the website but now have a life and readership of their own. And as I write we’re waiting for member #100 to give us their mobile phone number to receive our occasional text messages about ‘stop press’ items.

So the big question is: how can we assist more members to access the powerful tool which is the World Wide Web? I’d be grateful for your advice on this. Meanwhile, I am also grateful to Lynda Brett for coming in every week and telephoning members who are not on the internet. It’s a different form of support and of course for some people even better than getting regular bouts of information.

3. The Annual General Meeting

Our AGM was held on November 12 at the Disability Information Resource Centre. We had 21 people in attendance, down from last year but with an amazing number of formal apologies. We’d rather have people there on the day – but that people bothered to apologise was most appreciated and suggested real interest in the event. All went smoothly and we had a good talk from Phil Calvert, a senior physiotherapist who discussed his recent study tour of ME/CFS clinics in Britain. One of the points to emerge from discussion with him was the lack of status accorded to conditions such as CFS and fibromyalgia within the medical establishment. This in turn means that those professionals who want to address the conditions are not given the same recognition for it that accorded to professionals dealing with more high-profile conditions (eg cranio-facial disorders). This theme also emerged during the June De Merleir workshop. It is very much in our interest to raise the public and political profile of ME/CFS. That way we create a positive feedback loop where more professionals become interested in us because they know their careers will be helped by it. Phil Calvert himself is an altruist who amongst other things dedicates himself to Cystic Fibrosis SA as its vice-president. But we need to be aware of this simple fact that there are fashionable and unfashionable conditions and ours is not yet fashionable. The medicos alone can’t change that. We can. Once again, the message is that we need to keep working on the political and public relations aspects of our work. And that’s a job for every member.

4. And thanks

There are many people I should thank as we end 2005. I thanked most of them in my president’s report at the AGM. Here I’d like especially to record my thanks to a departing member of the State Committee. Marg Wing has been a rock for us all for years now. She has come regularly into the office each week to deal with the paperwork, assisted our Treasurer Geoff Wilson with our finances, been there to help organise every event and on it goes. We will miss her contribution to the committee though we fully expect, knowing Margaret, that she will still be there helping out. Thanks again from all of us on the committee, Margaret, for your years of great service.

And now I wish all of you a happy Christmas and a year of growth in health and spirits in 2006.

Peter Cahalan
12 November 2005

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