INTERNATIONAL AWARENESS DAY FOR MYALGIC ENCEPHALOMYELITIS

HON ALISON XAMON (North Metropolitan) [9.46 pm]: I rise because members may wish to know that 12 May was the international awareness day for myalgic encephalomyelitis, also known as chronic fatigue syndrome and often referred to as ME/CFS. It was part of the #millionsmissing campaign. The #millionsmissing campaign is named in recognition of the many sufferers who are not visible within our community because of the debilitating nature of their illness and its symptoms. The campaign is aimed to raise awareness and understanding of ME/CFS and have it recognised as a serious illness that requires timely diagnosis and appropriate care as well as future research. Last Saturday marked the first time that an official #millionsmissing event has been held in Western Australia. People who are affected by this insidious condition came together at Pioneer Park in Fremantle and when they arrived, they were greeted with an installation of many pairs of shoes that had been spread across the grass, representing ME/CFS sufferers. That evening the City of Fremantle was one of a hundred cities across the world that illuminated buildings in blue in order to acknowledge these people. The Moores Building, Victoria Hall and the Round House cliffs were all lit up.

We know that ME/CFS is a complex chronic illness that affects most body systems, particularly the nervous, immune, cardiac, gastrointestinal and endocrine systems. It is conservatively thought to affect between 0.4 per cent and one per cent of the population. If we are simply talking about WA, this equates to somewhere between 10 000 and even as high as 26 000 people. This condition is made even harder because sufferers face challenges such as securing a diagnosis in the first place or, worse, even being believed when they are making it clear that they are incredibly unwell. There are many parallels also with tick-borne illnesses, which I have spoken about in this place and that other members have also spoken about. It has identified that clearly greater attention needs to be focused towards improving treatment options for people who are already affected while at the same time ensuring that we are investing in research to understand what is causing these syndromes in the first place.

Last month I was lucky enough to meet with David Tuller, a United States public health journalist, and Stephen Le Page, who is the acting president of the ME CFS and Lyme Association of WA, along with Simonne Harrison, an ME/CFS patient and advocate. David spoke about his work critiquing the current treatment of choice recommended for ME/CFS patients, which is known as graded exercise therapy. Counter to the findings presented through the pacing, graded activity, and cognitive behaviour therapy; a randomised evaluation, or PACE, trials in the UK, he has found that graded exercise therapy has been shown to be ineffective and, worse, incredibly harmful for many people. The treatment is based on flawed assumptions about false illness beliefs and that people have become deconditioned, as opposed to having an organic illness. He spoke about the vital role played by Alan Matthews, who lives in Perth. Alan is a CFS sufferer and was instrumental in having the data released from the PACE trials. Access to that data showed that the trials relied only on subjective measures and used flawed methodology. For example, blind trials were not used. Even with the manipulated data, improvement was still shown to be poor. The Centre for Disease Control in the United States has already removed graded exercise therapy from its treatment schedules, which is something that also needs to happen here as a matter of urgency.

Stephen Le Page and Simonne Harrison also raised with me difficulties that ME/CFS sufferers are having accessing the National Disability Insurance Scheme. Currently, the eligibility criteria require ME/CFS patients to first undertake cognitive behavioural therapy as well as the graded exercise therapy before making an application under the NDIS. As I have just said, this is deeply problematic, because I have already outlined why graded exercise therapy is at best ineffective and at worst harmful. The requirement for cognitive behavioural therapy is based on the incorrect assumption that ME/CFS is primarily a mental health condition, and it is not. Furthermore, patients are reporting that doctors are not aware of how to fill in the forms for the NDIS when it comes to ME/CFS, and the National Disability Insurance Agency gives priority weighting to specialist opinions over those of general practitioners. Both of these factors are serving to disadvantage people living with these conditions. In practice, people are unlikely to be granted NDIS for ME/CFS alone. To get funding people generally have to indicate that they have got a comorbid condition, and this is most often likely to be a mental health condition. As I have previously advised people, one of the reasons I became interested in this was the sheer number of people I met in the mental health sector who were not mentally unwell before they became physically unwell, but the result of the nature of this illness and the way they were treated simply brought about mental unwellness.

It is going to be really important that decision-makers are aware of these experiences and act to streamline access to much-needed support. Given the enormous and often hidden impact that ME/CFS has on our community, I want to congratulate the City of Fremantle for taking an active stance in supporting the international day of awareness event, which was run by the ME/CFS and Lyme Association of Western Australia. A particular shout out to Fremantle councillor Rachel Pemberton, who did such a great job pulling it together. We still need to do a lot of work in this area. I am confident, thanks to important campaigns like this and increased public awareness, that we are beginning to educate people about this. I call on the government to prioritise investment into researching causes and best treatment options for the many Western Australians who currently live with ME/CFS, because it is incredibly debilitating and we really need to ensure that we are giving people some hope and opportunity to be able to get well.

 

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