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Why ME/CFS Australia needs to get stronger

Sunday 22 November 2009

ME/CFS Australia's BlogPaul Leverenz, Chairman of ME/CFS Australia, has written an article on ME/CFS Australia's Blog about the need for greater power to ME/CFS Australia:

Why ME/CFS Australia needs to get Stronger

In the last blog post we suggested that a reactive health system has not responded well to the challenge of ME/CFS. We left that discussion with the idea that the patient movement needs to mobilise itself more in order to be a better influencer of decision makers…


For various reasons the ME/CFS movement in Australia has not mobilised itself well over the years. Our State Associations—like many organisations of their kind—struggle to fill committee member positions. It is difficult for State organisations to offer services and grow support when only two State Governments and one Territory Government have been prepared to fund paid professionals in their jurisdiction.

Initiated by the State ME/CFS Associations around the country in 1999, ME/CFS Australia was established to tackle the National issues including collective advocacy on behalf of all persons affected by ME/CFS. While a great idea, the National Association has lacked resources to do its job, both from a financial and a human perspective.

The National Association’s only regular income comes from State Association membership fees. At only $1 per member per annum as a base rate, this is insufficient funding to seed a new venture. Clearly the National Association needs alternate, regular revenue streams. At the same time, there has been a tension between the need to be a representative body and to find people with spare capacity to devote to the National effort. It has proved difficult to find State Association committee representatives with spare capacity to devote to National Association business beyond meeting attendance.

Why ME/CFS Australia has to get stronger

There are a number of reasons why ME/CFS Australia needs to get stronger.

1. We need only look at other chronic conditions such as MS, Arthritis, Diabetes and the like to see the benefits of a strong National Association. A vibrant and active National Body would provide many outcomes including:

• Effective use of National media to communicate our key messages;
• Better access to and inclusion in the healthcare system;
• Raise significant funds for pilot research and stimulate interest in the disease as a research area;
• High quality information, phone support and self-management courses easily accessible to every person with ME/CFS.

2. A National Association is likely to be the catalyst to improve struggling State Associations. In the foreseeable future, it is unlikely that State based Associations in the smaller States / Territories will be able to self-fund paid staff. Yet we need a strong local group active—at a minimum—in every State/Territory capital city. A stronger National Association is needed to assist these jurisdictions by securing Federal funding to deliver services in them. Volunteer and financial resources should follow service provision.

3. Our system of Government is becoming more centralised. The push is for National standards and uniform service delivery across the States and Territories. To achieve this more power is being placed centrally. Although State Governments deliver hospital services, for example, the Commonwealth is increasingly shaping how this is done. To influence at a National level we need a National Association, resourced and active.

4. Many of the key issues concerning people affected by ME/CFS are either directly within the purview of the Commonwealth Government or they are Federal-level issues. For example, the National Health and Medical Research Council which allocates funding to research and the Pharmaceutical Benefits Scheme which outlines which drugs receive Government subsidy, require Federal level advocacy. Medicare Australia (GP funding, chronic illness care plans) and Centrelink (pensions, carers allowances etc.) are directly run by the Commonwealth Government. A National Association that influences the policy decisions of these organisation’s is essential.

5. The Commonwealth Government will only deal with National Associations. They outlay funds if it can be shown that they will benefit all Australians. Therefore, ME/CFS Australia is the organisation through which Federal funds can be accessed. It is the organisaiton which they will most listen to when developing policy.

There are, no doubt, many more reasons for a strong national body. We will briefly elaborate on the service delivery aspect of a National Association.

Service Delivery

In the last 20 years we have moved away from Government service provision to that provided by the non-for-profit sector. The classic example was the shutting down of the Commonwealth Employment Service and replacing it with the current system where—mostly not-for-profit—providers assist job seekers find work on behalf of the Government.

While Governments have a large role to play in our healthcare system, specialty services for people with various health conditions are often provided by consumer health groups. ME/CFS has many complex challenges associated with it, so it is likely that patient groups will need to step into the breach.

In order to bid for Government money to deliver services, we need to be much better resourced. As stated in a previous blog post, the ‘Catch-22’ situation is that the Government will only fund National organisations with a strong organisation base. For us, that means that we really need to get to a point where ME/CFS Australia is receiving $30K – $50K in donations per annum. This modest amount would fund a staff member 2-3 days a week and improve our case with the Commonwealth Government.

In saying this, we cannot overstate the need for Government funding which is only part of the solution to improved services. While Government funding is invaluable, most charities get only a fraction of their total income from Government sources. A mobilised movement and financial supporter base must also be developed.

The Math

Turning the issue around, if we fail to mobilise then we will fail. There are over 50,000 tax deductible charities in the country—one for just over every 400 Australians! These are all vying for the hearts and minds of benevolent Australians, for media attention and for Government funding.

We can guesstimate that there are approximately 300,000 Australians alive who either have or have had ME/CFS[1]. If, on average, three people are directly affected for every person with ME/CFS, we also estimate that approximately 5% of the population or one million people will have some ‘engagement’ with ME/CFS.

Doing these ‘back of the envelope’ sums, we conclude that there is a modest sized market of people out there with either a direct or indirect interest in ME/CFS. However, it is not massive and it is not financially well off. We will need everyone pulling in the same direction in order to be successful.

How can we mobilise?

A truly effective national movement is not based on centralised control—a multitude of puppets controlled by a master. It is a mass of people with a common understanding who can apply that to their circumstances, and influence those around them.

To quote a well-worn proverb: “A journey of a thousand miles begins with a single step”. The first perambulation forward for us is our website and blog. Through these we hope to establish a readership that learns together. We seek to develop a national consciousness of ME/CFS issues, shaped by reader input.

From this we hope to gain interest from professionals and lay people able to give their expertise and time to the National cause. We also hope to find sponsors and donors willing to back the work of a National Association. Ultimately, without this financial backing, our role will remain predominantly in the communication space.

Over the next year we will undertake a campaign focused on our next Federal election, raising awareness among MPs. We also will improve our website both in terms of functionality and content.


We trust that the reader has been convinced that there are a number of good reasons why a stronger National Association is required in Australia. It is essential if services and access to the healthcare system is to improve for people with ME/CFS. It is also likely to be a necessary catalyst to establishing effective State Associations in every jurisdiction.

Paul Leverenz

This article – and more – is available at ME/CFS Australia's Blog where you can sign up to receive regular updates.



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