Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can have significant impacts on people’s lives and it’s estimated around 250,000 Australians live with ME/CFS - with a quarter of those experiencing symptoms that cause them to be housebound or bedbound.
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause disability
- People with ME/CFS may find it hard to access support because of the fluctuating nature of their condition and the way support systems work
- You will need to prove your disability to be accepted for support but this can be challenging
But it’s not always easy for people with ME/CFS to get the support they need, because of the way support systems are set up.
ME/CFS is a fluctuating condition, which means that the symptoms people with ME/CFS experience differ greatly each day and even between different people with the same diagnosis.
This makes it difficult for people to meet the ‘permanent’, ‘treated’ and ‘stabilised’ criteria used in the laws that govern support systems including the National Disability Insurance Scheme (NDIS) and Disability Support Pension.
It’s not impossible to access supports though, and they can make a huge difference in the life of someone with ME/CFS.
This explainer gives you suggestions for how to give yourself the best chance of being approved for funded supports.
Getting the right paperwork together for your application is vital and it needs to include your whole medical history - when you were diagnosed, all the types of treatments you have tried and all the tests you have done.
You need your general practitioner (GP) to agree that you have a permanent condition and it will help to have supporting evidence to show how it impacts your quality of life or causes functional impairment, from specialists such as occupational therapists.
Emerge, the national organisation for people with ME/CFS, has an example doctor’s letter that you can get your GP to follow. The organisation can also provide support if you are unsure what documentation you need.
Although the NDIS won’t pay for you to collect your supporting information, you may be able to access an occupational therapy assessment through a chronic disease management plan from your GP, funded through the health system.
Dealing with rejection
ME/CFS is a complex condition and it is not completely understood by anyone, including those who decide whether you can access the NDIS or not.
Your first application to join the NDIS may be rejected, but that doesn’t mean you will never be eligible for funding.
It is important to look at the reason why you were rejected and consider whether you can apply again with more, or different, information.
You can also appeal the rejection if you need to, for example if the reason you were rejected is because your condition was not deemed to be permanent or fully treated but you provided documentation that it is.
If you have been told ME/CFS is a health issue and not a disability or that ME/CFS is not on the list of NDIS-accepted conditions, remember that the NDIS was designed to help people based on their level of impairment, not based on the type of disability they have.
You can get support from a disability advocate to lodge an appeal if you need it.
What else would you like to know about ME/CFS and accessing support? Tell us in the comments below.