The Australian Greens have launched a policy on the debilitating neurological disease myalgic encephalomyelitis, a type of Chronic Fatigue Syndrome known in Australia as ME/CFS. Senator Jordan Steele-John has campaigned passionately for patients with ME since coming to parliament in 2017. This is the first ever political policy to be released on ME/CFS and is well timed with a Federal election due in May.
The Senator was kind enough to call me today to discuss the new policy. After years of campaigning with the hashtag #millionsmissing from their normal lives, the Senator explained this policy was an important way to show the patient community that they were no longer invisible. “When the evidence shows that a disease like this is real, it doesn’t mean that people automatically stop experiencing stigma.” He went on to say this policy was designed to show that it was not just his words that the Greens had to offer ME/CFS patients, but the whole Green movement now had a plan for action to help make their lives better.
The Greens’ policy has four parts. The first is to increase funding for biomedical research to $15 million dollars that would be administered by the National Health and Medical Research Council. This would allow funding for a range of innovative work being done across Australia by a range of different organisations. It would be enough to cover the gap in funding to scale up the sample size of calcium ion channel research being undertaken by the National Centre for Neuroimmunology and Emerging Diseases, as well as a range of other significant biomedical research projects. Since the release of the Greens’ policy, the Coalition Government has announced $3 million dollars in ME/CFS research funding.
Secondly, they propose a national ME/CFS summit to bring together patient advocates, biomedical researchers, clinicians, the National Disability Insurance Agency (NDIA), Department of Human Services, and Department of Social Services. Such an event could be facilitated in such a way that it would catalyse policy alignment between all these groups, with a particular focus on government departments, service providers and medical practitioners. At present, the discrepancies between current research, medical practice, the NDIA and other government departments pose a significant barrier to the health and wellbeing of the hundreds of thousands of Australians who suffer from ME/CFS.
In many cases, patient advocacy groups have been the only source of support and guidance through these frought bureaucratic processes that combine to discriminate against people with ME/CFS. These groups have run on the smell of an oily rag for decades but take a leading role in coordinating communication and advocacy to improve the standard of care for ME/CFS patients. Funding and support of these groups is the third component of the Greens’ policy and it is long overdue.
The fourth component of the policy is a promise to provide participant pathways for people with ME/CFS to access the National Disability Insurance Scheme (NDIS). The NDIS was established with the explicit purpose of supporting Australians with disabilities to access social, economic and community life. Senator Steele-John was infuriated by the revelations that the NDIS had vastly underspent this financial year, but was still failing so many Australians in need of support.
There are a range of reasons given to the scores of people with ME/CFS who are rejected from the scheme. Some reasons relate to outdated research that suggested Cognitive Behaviour Therapy and Graduated Exercise Therapy would make them better; making them ineligible under the criteria of ‘permanence’. Others find themselves caught up in the stigma and misconception of medical professionals who misdiagnose them with Conversion Disorder or Somatic Symptom Disorder. If all the symptoms experienced by a person with ME/CFS are described in either the International Consensus Primer or the Canadian Consensus Criteria, then they will not meet the criteria for Conversion. But approximately 80% of people with ME/CFS are women, who for centuries have had their physical symptoms disregarded as mental illness. In addition to advocacy efforts to have ME/CFS added to List B of the NDIS, Senator Steele-John spoke about aims to continue working with his colleague Senator Rachel Siewert to reform the Administrative Appeals Tribunal to improve its fairness and reasonableness in NDIS appeals. He also spoke about the relationship between the AAT and abusive behaviour towards people with ME/CFS, which may mean it falls in the remit of the Royal Commission into violence and abuse of people with disabilities, the terms of reference for which are due to be finalised before the election.
Senator Steele-John’s efforts to support the ME/CFS community are commendable. It is a source of great hope that he has been able to expand on the good work undertaken by his predecessor Senator Ludlam and bring his entire party on board to work for the improvement of the lives of people living with this debilitating commission. He is facing a tough re-election campaign, facing off against candidates from the One Nation party. We can only hope that the good people of Western Australia get out to support his campaign and vote him back into the Senate in May so he can continue his invaluable work for Australians with disabilities, including those living with ME/CFS.