Can you see ME, Tamara?
I am one of the approximately 240,000 Australians living with Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome (ME/CFS).
To many I am invisible.
I have been unwell with ME/CFS for 15 years and 2 months after contracting Cytomegalovirus, similar to Glandular Fever in my first year teaching, I pushed through and struggled for 2 years until my body finally collapsed sleeping 22 hours and day and unable to walk or feed myself. Thankfully, I am not severely ill anymore yet it still effects every aspect of my life. ME/CFS is a chronic, complex illness affecting many systems in the body. Despite the World Health Organisation classifying it as a neurological condition in 1969, there is still great misunderstanding and lack of awareness of this debilitating illness. As former Senator Scott Ludlam stated in Senate Estimates, 10 February 2016:
“I am struggling to think of a cohort of people in our community that large for whom there is so little”. – Former Senator Scott Ludlam
For me personally, the impact of ME/CFS has caused loss of career, in turn loss of income, loss of involvement in my community, social isolation, difficulty parenting and it has put much strain on my family who I rely on heavily for assistance. Mostly, I feel I have only been able to be half ‘me’ living less than 50% for so many years.
My situation is not unique. People with ME/CFS experience varying degrees of disability. In mild cases, individuals are capable of only 50% of their pre-illness activity levels. In severe cases, which affects 25% of people with the illness, they are housebound or bedbound, for months, years or decades. There is currently no diagnostic test, nor any effective treatment for ME/CFS. Whilst some people improve over time, for many their impairments remain severe.
Lack of understanding and awareness associated with ME/CFS makes it almost impossible for people like me to access the supports we desperately need.
Many Australians with ME/CFS are missing from the National Disability Insurance Scheme (NDIS) Applications by ME/CFS patients for the NDIS are being widely rejected for a range of reasons, including being ‘not fully treated’ if they haven’t attempted graded exercise therapy (GET). However, this therapy is highly controversial.
The core feature of ME/CFS is post-exertional malaise (PEM), which is the exacerbation of symptoms following exertion. The primary outcome of GET is for people with ME/CFS to increase their activity and exercise. However, many report harm from increased activity. Preliminary analysis of an unpublished Australian study undertaken by Federation University (in partnership with Emerge Australia) in 2015, found that 89% of 608 respondents indicated that increasing their level of exercise/activity resulted in a worsening of their symptoms. This rate of harm is consistent
Letter
with other patient surveys conducted around the world. Please refer to the PEM-GET primer for a review of the GET research: bit.ly/PEM-GETPrimer.
In addition to being rejected for not having undertaken GET, the basis for NDIS rejections are highly inconsistent – in many cases patients are told that ME/CFS is not covered by the NDIS, despite the often high level of disability experienced. Furthermore, applications are being rejected because assessors do not understand this condition. I haven’t even attempted to apply, although certain aspects of the NDIS would help my family and self immensely, I don’t have the energy to apply and fortunately my husband and I have always managed to get by due to his non stop hard work building his own business in Penrith and also managing the house hold completely and being my carer. I know there are people in more need than myself, specifically.
Emma, I’m asking you as the Member for Lindsay to help change this injustice by acting in three ways. - Partner with the ME/CFS community to develop appropriate guidelines for NDIS assessors. Such guidelines would ensure assessments are appropriately informed, covering: symptoms, diagnosis, impairments, treatments and prognosis. - Add ME/CFS to the NDIS List B of permanent conditions where further assessment is required. Despite many people with ME/CFS fulfilling all of the criteria laid down in the Act – they are being denied for simply being ‘not on the list’. - Ensure that people with ME/CFS are not forced to undergo graded exercise therapy in order to access the NDIS. This is in keeping with changed recommendations made in the US, such as the Centers for Disease Control and Prevention (CDC) (which has removed GET from its recommended treatments for ME/CFS on its website), and would bring Australia in line with international practice.
Please show that you care for this severely disadvantaged group by replying to this letter and helping make some much needed changes.
Yours sincerely,
Tamara