by Sasha Nimmo

Myalgic Encephalomyelitis (ME) affects between 96,700 and 241,800 Australians (0.4%-1% of the population) and there is no treatment or cure. Why aren’t medical research or services funded fairly, equivalent to other diseases?

Recently, Myalgic Encephalomyelitis (and chronic fatigue syndrome) were excluded from the Australian Institute of Health and Welfare’s (AIHW) Australian Burden of Disease report, which only comes out every decade.

AIHW’s role is “to provide reliable, regular and relevant information and statistics on Australia’s health and welfare. Governments and the community use our reports and data in discussing, debating, and making policy decisions on health, housing and community services matters”.

If ME is not included in government reports, then patients are not even considered when it comes to making decisions about research and services, so no money is allocated.

The AIHW offered up contradictory explanations for excluding ME and chronic fatigue syndrome: that no data was available for it to be included, but that they were included in ‘other neurological’.

“The list of diseases/conditions for Australian Burden of Disease 2011 was based on a set of criteria for inclusion that was applied consistently across all disease groups. Unfortunately, there were no recent robust data on the prevalence of CFS/ME that satisfied the criteria for diseases to be included in this study. The Australian Burden of Disease Study 2003 estimates for CFS/ME relied on epidemiological studies that are now out-dated,” Miriam Lum On, Australian Burden of Disease Unit, Australian Institute of Health and Welfare said.

The AIHW also said,”chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is captured within ‘other neurological conditions’ in this study” without explaining how they calculated figures for inclusion.

Overestimating recovery

Parliament was told that 75% of Australians with ME and CFS recover. The real figure is closer to 5%.

That is a difference of up to 170,000 people in Australia but the House of Representatives  Health Committee’s report on Chronic Disease Prevention and Management in Primary Health Care states ‘around 25 per cent [are] so profoundly affected by the condition they don’t recover’.

Why would the government allocate funding for medical research and treatment if it is told that most patients recover without it?

“The information that appears in the Health Committee report to which you refer was sourced from the Emerge Australia website and was correctly quoted and accurate as of the time of the publication of the report.  Taking this into consideration, it was decided that the report did not warrant any change,” Stephanie Mikac, Secretary, Standing Committee on Health said.

The 2012 International Consensus Criteria primer for medical practitioners says “recovery is rare”.  It will continue to be so if ME continues to be ignored.

If you would like raise these issues you can contact the AIHW or the chair of the Standing Health Committee, Trent Zimmerman,

Also, you may wish to write the National Health and Medical Research Council and your local member or senator.