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Health system failing people with ME/CFS

Friday 20 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 state of the Australian health system for people with ME/CFS:

Health System Failing People with ME/CFS

The health system is failing Australians with ME/CFS. We outline some of the reasons for this and offer some suggestions as to what the Australian Government might do to begin to close the gap.

ME/CFS affects an estimated 100,000 Australians; those living with it can be as impaired as people with MS, AIDS, or those undergoing chemotherapy for cancer.


• As few as 20% of people with ME/CFS are diagnosed correctly[1], with the average time until diagnosis being 7 years;
• People with ME/CFS continue to report difficulty finding a knowledgeable doctor;
• Government funded ME/CFS research is approximately $1 per patient (compared to $400 for each AIDS patient);
• Despite the evidence of over 4000 published studies showing biological abnormalities in people with ME/CFS, there is still significant community suspicion that people with ME/CFS are ‘malingerers’;
• Suicide is a significant issue in the ME/CFS community due to a sense of hopelessness in the patient community;
• Despite universal recognition that ‘CFS’ is a heterogeneous grouping, we do not have advice tailored to different groupings taking into account the duration of the condition, severity, and time to diagnosis; and,
• People with ME/CFS are still being prescribed inappropriate treatments that have the potential to do significant harm.

Given that ME/CFS costs the Australian economy up to $1 B p.a. in direct and indirect costs, there is significant incentive for the Commonwealth to reduce the cost to the community by improving treatment and research. Despite ME/CFS becoming prominent in the last 25 years, there are no Government-funded specialty programs treating people with ME/CFS (there are some fatigue clinics) and there is no Government-funded clinical or epidemiological research being conducted in Australia. People affected by ME/CFS often ask “Why is the system not supporting us?”

There are many reasons why services haven’t developed for people with ME/CFS in Australia.

1. There is a prejudice in our community against conditions which can’t be proven ‘in a test tube’. MS experienced this initially but now it is an accepted condition despite the fact that there is no definitive diagnostic test for it.

2. Researchers don’t bid for ME/CFS research because they don’t want to risk their credibility by studying something with a stigma associated with it.

3. The ‘system’ is geared to support low-risk gold-standard research which is not always the type of research required in emerging and complex fields. Patients should not have to fund all the higher risk and pilot research.

4. The ‘system’ under the previous Government was focused on the ‘big 8’ chronic diseases.

5. The Government is not engaging with a wide range of experts experienced in the research, treatment and management of ME/CFS.

6. The ‘system’ appears to assume (but on what basis?) that science cannot solve ME/CFS biologically. We infer this from the relative inactivity in terms of research and the position of the Australian Clinical guidelines which play down the biology of ME/CFS and focus on the behavioural management of ME/CFS.

7. Our health system is reactive to patient needs, requiring activist patient groups to bring recognition to conditions and to lobby for funds.

8. The ME/CFS Community has struggled to mobilise itself.

No doubt there are additional reasons; we’d love to hear your views on this.

What the Government Can Do

The Government—politicians, public servants including the entire health and community care sector—can begin by seeking out information on ME/CFS. This would include establishing a reference panel of researchers and clinicians experienced in dealing with people with ME/CFS. They could start to look at barriers to clinical care.

The Government can apply levels of evidence judiciously to this emerging condition. It is not good enough to ignore people just because we don’t understand everything about the condition. We must work on the balance of probabilities given what we know now. While research is still in its infancy, we must rely on patient case studies and testimony from clinicians.

Since the health system is largely reactive, the Government needs to find ways to stimulate interest in ME/CFS research. It needs to support health practitioner education, conferences and the dissemination of information. Critically, the Government needs to adopt provisional positions on ME/CFS which can be reviewed as the science improves. Ideally the Government would have a strategic plan to improve that science, participating in an international research effort.

The Role of ME/CFS Australia

It is the job of ME/CFS Australia to inform and influence decision makers. And while it is legitimate for us to point out issues and call people to account, it should also be our role to provide solutions. We are beginning to do that, but resource-constraints limit our ability to do that to the extent that we need to.


25 years have elapsed since ME/CFS came to recent historical prominence. People affected with ME/CFS have been let down by a reactive health system. The Government must stimulate interest in ME/CFS education and research. There is also a need for the ME/CFS community to improve its collective ‘performance’. This will be discussed in the next blog “Why ME/CFS Australia needs to be stronger”.

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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