ME/CFS/FM Awareness Week Rally

Report of the 2000 Rally

Rally 2000, Parliament House, Canberra, 10 May 2000
Report
Speeches by: Jenny Macklin MP  (Shadow Minister for Health);
Senator Kate Lundy;  Kirsten Livermore MP;
Senator Len Harris;  Gary Hardgrave, MP;
Message from WA ME/CFS Society;
Remarks by Ron Fraser (ACT ME/CFS Society);
    (Full version of Ron Fraser's speech on a separate page)
Summary by Ron Fraser

Over recent years, the week surrounding Florence Nightingale’s birthday on 12 May has become the focus for international lobbying activities promoting awareness of CFS and the associated conditions Fibromyalgia and Gulf War Syndrome. (Florence Nightingale is believed to have been a CFS sufferer herself).

The scene outside Parliament House Photo: Geoff Woolfenden* (view a larger version of this photo)

In May 2000, the ACT ME/CFS Society decided to hold a rally at Parliament House to draw attention to the need for research funding. The event, which was endorsed and supported by the new National Association, was organised by the Society on behalf of ALL Australians with CFS/FM.  Realising that it would be difficult for many people to get there in person, we invited people to send their photos and stories to represent them there.

The national capital turned on a beautiful warm sunny autumn day for our event, and a whole gang of us wearing blue ribbons gathered on the grassy area in front of Parliament House with placards, information displays, and of course lots of chairs and rugs so we could sit/lie down! Completing the colourful spectacle on the lawn was a collection of large coloured paper "jigsaw pieces" each one with a different symptom of ME/CFS/FM written on it.

There were about 40 people present, and about the same number of "virtual" attendees who had sent their photos. These had all been laminated and were prominently displayed on notice boards so that everyone could see them and read the often moving messages from the senders.  Photos showed people cycling, fishing, hiking in the Chilean mountains, teaching, bushwalking, skiing, sailboarding, painting, dancing, teaching, cross country skiing etc ..... and of course the messages told the rest, about how illness prevents us doing these things any more.

Visitors to Parliament House view the display boards of photos and stories sent by our "virtual" attendees ....  in the foreground is the multicoloured jigsaw puzzle of CFS/FM symptoms Photo: Geoff Woolfenden * (view a larger version of this photo)

This display was very effective on more than one level – support for us who were there, real life illustrations of what the illnesses mean in people's lives, the sheer variety of people represented – illustrating that no one particular type of person is struck down by FM or CFS – and the national perspective it gave to the rally.

Invited pollies dropped by – one of the first to arrive was local Labour MP Annette Ellis, who is most supportive and can always be counted on to take an interest in such issues. Also Anna Burke, Labour member for Chisholm, and Rachel from Senator Julian McGauran's office (National Party, Victoria). Win TV (channel nine's local station) turned up and filmed the general scene and interviewed Sue O’Loughlin and Ron Fraser of the Society for a brief report on the evening news. Sue also did an interview with 2CC radio. And members of the public who just happened to be visiting Parliament House that day wandered over to chat and look at the displays.

Then there were the speeches. First to speak was Jenny Macklin MP (Labour, Heidelberg Victoria) Shadow Minister for Health. She spoke of the need for people to understand how CFS affects us:

"Yes, it means fatigue, but it also means a whole lot of other things as well – not only in terms of physical and emotional issues but of course the enormous interruption to your lives – your social lives, the opportunity for education, the opportunity to go out to work, and so on. It really is a pernicious illness, because it affects so many people in so many different ways and is so little understood.

"The other big message is that this illness is not something that generally just happens for a few days, a few weeks or even a few months – that it can go on for years and years and years. And that’s really the hardest thing for people to understand ... I don’t know how you emotionally cope with that, I think that must be the hardest thing of all, on top of the physical stress that it puts on your bodies, but the emotional coming to terms with that reality just must be enormously difficult.

So I’m really here to say to you that we DO understand – some if us at least! I’m pleased that there are some of us here to demonstrate to you that there is an understanding amongst those of us in the Parliament about what this means to your lives, that education campaigns are urgently needed; and we also understand how critical it is that there is research undertaken so that we can better come to grips with what causes this illness and how a cure might be found."

Kate Lundy (Labour Senator for ACT): Kate told us that before coming into Parliament she worked as a trade union organiser with Occupational Health and Safety as one of her major roles, advocating for people who were in dispute with employers because of misunderstood illness or injury such as occupational overuse syndrome.

She spoke of the importance of:

Kirsten Livermore MP (ALP) from Capricornia, told us that members of a local support group had visited her in her home electorate a few days previously to tell her about this rally, and that she was here to represent them and to bring and take back messages of support:

"The hurt that these people are suffering is an effect of the double whammy of this disease – not only are you suffering an illness that affects every aspect of your life, there’s also the insult of not having that condition properly recognised by the community in general and by the medical profession".

Kirsten spoke of the "horrible demoralising treadmill of trying to get doctors to recognise this condition, and then trying to get insurance companies to recognise it in terms of being eligible for disability payouts for worker’s compensation. Before I entered Parliament I was a solicitor working in the area of workplace injury and compensation and I’ve seen this with many other illnesses ... it doesn’t matter what the evidence is, it doesn’t matter how badly people’s lives have been affected or destroyed by their condition, there is a mindset in the medical profession and in the insurance industry that "we just cannot let this get past" because of some floodgate effect – I think that’s totally unfair, it really denies the reality of people’s suffering."

Senator Len Harris (One Nation) from Mareeba (Atherton Tablelands, far north Qld): Talked about the problems of people with chemical intolerance, and said as a society we need to consider the environment, including building materials, chemicals, sprays, what's in food (including genetic modification), etc – "we are what we eat". He said the Australian government is lagging behind USA and Europe as it has not giving formal recognition to these issues and is putting off dealing with them.

Gary Hardgrave, MP (Liberal member for Moreton, Brisbane): Told us that years ago as a young journo he interviewed a local CFS support group and they educated him about the disease, then some of his friends got it, and he is now a member of the Qld Society. He said he found himself agreeing with Senator Harris on the issue of the environment:

"I think it is a multipartisan issue, and the more of us as Members of Parliament come across those vital energetic people that we personally know suffering from this and associated illnesses and syndromes, diseases and ailments, the more we’ll start to focus on the fact that there is something wrong with our modern environment – that some of the measures that we’ve taken to provide some of the atmospheres and living environments, some of the materials we use have a consequence – not on everybody, but on enough people, and unfortunately on too many vital people in our community – for us as a broad community to be very concerned about it.".

Sue O'Loughlin, acting as MC, read out an email message of solidarity from the WA ME/CFS Society:

"Through the volume of emails and phone calls which our volunteers sometimes struggle to cope with it’s obvious that there are hundreds of CFS patients in WA who are struggling to cope physically with the simplest aspects of daily life."

The message went on to talk about the misunderstanding and bias against people with CFS being felt in WA, as in other places:

"It is bleakly obvious that major changes in medical and human services policy are needed to reduce the devastating toll in human pain and suffering of CFS"

The WA Society’s message mentioned, among others actively working for them, Clare Tomkin who co-ordinates their youth group, providing support and information to patients, their parents and teachers. She has received a Young Citizen of the Year Award and Young Australian of the Year Award for her work in raising awareness of the plight of young people with CFS.

"The precious years of childhood are short and, once lost, can never be regained."

Then Ron Fraser of the ACT ME/CFS Society gave a speech (to which no summary could do justice) on two areas of great influence in our lives, the social security system and workforce arrangements. He gave some real life examples to illustrate the crucial need for both the social security system and employers to be flexible and responsive to our needs, and allow us to move at our own pace – perhaps working part-time or from home – so that those with the capacity to recover fully or partially from CFS don’t end up on the scrapheap. He also warned us that the concept of "mutual obligation" in the recent Interim Welfare Report, which on the surface seems laudable and sensible, could be used as an excuse for punitive action against people who are too sick or disabled to "participate" in return for receiving the Disability Support Pension.  (Read the full version of Ron Fraser's speech.)

The microphone was then handed over for anyone who had anything to say (and still had the energy). In particular, Janine (a former coordinator of the Canberra FM Self Help group) reminded everyone that Fibromyalgia and CFS are to all extents and purposes synonymous, it is often a matter of luck which one you get diagnosed with, and of course many of us have now been diagnosed with both.

While the formal events such as the speeches were happening, people were coming and going, sitting in the sunshine sharing sandwiches and chatting. It was a lovely friendly, even uplifting, atmosphere of solidarity and optimism. However, by 2 pm when the rally was due to end, we were fading fast, and packed up and went home to collapse.

Thanks to all who supported this effort and sent photos or attended in person. Especial thankyous to the organisers from the ACT ME/CFS Society – including Sue, Ron, Frances, Prue and Dave, Alexa, Janine. This is by no means an exhaustive list, others did their bit – it's only a small committee, and there was a lot to do. Apart from those who had their specific jobs, we had two open "working bees" in preparation for the event. As anyone who has been involved in anything like this knows, it is not easy and every little bit helps.

I will give the last word to Ron Fraser who summed up the event very well when he said:

"I think the response we’ve got today shows that it is possible to start to make some inroads, raise consciousness and be heard, even though many of us here today will need a fair bit of time to recover.

"It’s most important that the people who make the decisions that affect us – in financial and policy ways, in employment , and so on – should know more about the condition. Because nearly everyone I know in the Society has suffered at one time or another from insensitive, or cruel, or simply ignorant behaviour by bosses, CMOs or people in the welfare system who haven’t made the attempt to understand, or have made certain assumptions, or from medicos who haven’t kept up with the research, and who are prepared to write people off altogether.

"So everything we do to get the facts better known – as a number of the politicians including Kate Lundy have said today – is worthwhile. The presence of the pollies here indicates that there’s a cross-party interest in these things, and we need to make sure that we continue to speak to those people."

[ Contents ]

This article was published in Chameleon, the journal of the ACT ME/CFS Society Inc., Winter (June-August) 2000
Report by Moira Smith
Photographs: © 2000 Geoff Woolfenden, Light Impressions,
Canberra Australia (+61-2) 62514879

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