ME /CF
AUSTRALIA
Advocacy | Education | Collaboration The peak body for patient-led ME/CFS charities across Australia
Submission to the 14 November 2025
Preamble: understanding ME/CFS as a disabling condition
ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome, is a complex neuroimmune condition with Disability-Adjusted Life Year scores reflecting the severe, multi-domain impairments that affect the daily lives of people with ME/CFS:
- Moderate handicap 0.449
- Severe or profound handicap 0.760
25% of people with ME/CFS have severe or profound ME/CFS, defined as mostly housebound through to fully bedbound. It should be noted that even mild ME/CFS is associated with at least 50% loss of functional capacity.
Post-exertional malaise (PEM) is the unique, identifying feature of ME/CFS. It involves a pathological loss of energy and worsening of all symptoms following minimal physical, mental or emotional effort, or other triggers. The severity of symptom exacerbation is out of proportion to the intensity and duration of the triggering effort. When people with ME/CFS push themselves to use more than their available energy reserves, a loss in functional capacity is inevitable and cannot be reversed simply by a long rest or a good night’s sleep. This creates a barrier to engagement in the community that is seldom recognised and accommodated.
ME/CFS also involves dysfunction of the autonomic nervous system, including orthostatic intolerance, that is, an inability to function well while upright. This includes very limited ability to stand without syncope, an inability to sit for long, and in profoundly severe ME/CFS, being unable to have the head of the bed elevated. Accommodations for people with ME/CFS rarely acknowledge the limitations of orthostatic intolerance.
Another symptom of ME/CFS is sensory intolerance, including intolerance of light, sound, movement. For some people with ME/CFS this can make important locations, such as medical centres and places of study or work, painful, nauseating and exhausting.
Neurocognitive dysfunction has broad effects in ME/CFS, which are exacerbated in combination with a need to be upright, when poor blood flow to the brain further reduces function. Impairments to memory, concentration, communication, decision making, spatial orientation and more impede movement within and interactions with the community. Accommodations for people with neurocognitive dysfunction rarely also accommodate the other challenges of ME/CFS. As one example, Easy Read documents are usually brightly coloured, triggering visual sensitivity.
Q. Do you think the definition of disability in the Act needs to change? What do you think the definition should include?
For ME/CFS Australia, this is the most important question in the whole review. Irrespective of what the rest of the new Act says, it will only apply to those people who are covered by the definition of disability as written into the Act. Anyone who is left out of this definition will not have access to the support of the law.
People with ME/CFS often feel excluded by disability definitions and accommodations. It is likely that no single existing definition can include the multiplicity of impairments, circumstances and intersectionality of every person in Australia with a disability.
The social model of disability is becoming ubiquitous. It is not a good fit for people whose impairments are complex and severe, such that no amount of removal of social barriers can compensate for the inability to participate in many aspects of society and the inability to carry out simple activities of daily life. That said, we remain aware that for many people, the social model of disability works well.
Our contention is that the Act can and should incorporate a multiplicity of current or new definitions, to increase the likelihood that a person with disability who experiences discrimination will be covered by the Act. It could look something like this:
For the purposes of this Act disability is defined as either a) social model, described as… or b) medical model, described as… or c) human rights model, described as… or d) model that incorporates intersectionality, described as… or e) elements from one or more of (a) through (d).
Depending on the input of others, there may be more options than just (a) through (d).
The intent is to ensure that the Act is inclusive of diversity amongst people with disability and the circumstances in which they find themselves experiencing discrimination.
Q. What could be changed to make definitions of discrimination easier to use for people with disability and duty holders? Q. What would help people with disability and duty holders to better understand the definitions of discrimination in the Act?
The Act needs to serve lawyers and courts, as much as people with disability and duty holders. If the definition of discrimination were to remain as it is, ease of use for people with disability and duty holders could be assisted by additional Plain English versions.
If a multiple-model definition of disability is supported, as suggested above, it may be important to add that discrimination may occur from the perspective of one or more of the models of disability as defined in the Act.
Q. In what settings do you think it will be most important to have a positive duty to prevent discrimination?
For people with ME/CFS, two critical areas where access without discrimination are urgently sought are health care and disability services. These highlight the imperative for government and government agency providers of goods and services to have a positive duty to prevent discrimination.
In one healthcare example of discrimination, currently the primary healthcare system is inaccessible to people who are homebound due to the nature and severity of their disability. In 2018, the Australian Bureau of Statistics estimated that around 600,000 people who identified as disabled were rarely able to leave their home (unpublished data). People who are homebound can benefit from use of telehealth. There is a list of circumstances under which people are granted exemption from the face-to-face GP consult eligibility rule for access to Medicare-subsidised telehealth. This exemption list does not include being homebound due to disability. Having no access to primary health care, including no access to Medicare-subsidised telehealth, also includes having no access to the Disability Support Pension or the NDIS, as both of these require medical reports for access.
Additionally, consultations about government and government agency policy and programs remain inaccessible for many, often those who are most vulnerable to exclusion not just from the consultation but from the relevant programs. It is noteworthy that the Disability Royal Commission reported that during their first two years they heard a great deal about people with disability, but rarely from people with disability. The changes made by the Disability Royal Commission to reach and accommodate more people with disability provide a practical model for other potential holders of a positive duty not to discriminate in consultations.
Q. What would change if there was a positive duty?
Regarding costs for duty holders, there would also on occasion be cost savings. For example, in relation to the example above of a discriminatory barrier to access to primary health care for people who are homebound due to their disability, evidence from a published systematic review, Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, and Well-Being Outcomes, indicates that there are cost savings elsewhere in the health system from providing telehealth services to people who are homebound due to disability.
Q. How would changes to the way adjustments are considered under the Act help to improve inclusion of people with disability across different settings?
People with disability and positive duty holders would benefit from promotion of examples of best practice, to demonstrate how simple or cheap different kinds of inclusive adjustments can be. This holds the potential for considerable change without undue legal pressure and for reducing the number of, and costs of, representations to be excluded from a positive duty under the Act due to claiming unjustifiable hardship.
Q. What steps should duty holders have to take before they can refuse to provide an adjustment (claim unjustifiable hardship)?
Duty holders should be required to engage in facilitated negotiation between the duty holder and the individual(s) concerned, using an independent facilitator.
Competing claims should be considered, where an adjustment to suit one individual or group might create discrimination or hardship for another individual or group. For example, there is currently a discrimination court case underway in South Australia, where a Council is intervening on behalf of other residents on the basis of noise nuisance. The noise is emanating from therapy animals. The owner of the therapy animals is claiming disability and human rights discrimination and seeking adjustment to noise rulings. There are clearly competing needs in this instance.
Unjustifiable hardship might reasonably include adjustments that create unsafe conditions that cannot be mitigated without creating new, different risks of harm.
Q. How could the Act better protect people with disability from offensive behaviour and harassment? What might be different or better for people with disability if the Act did more to protect them from offensive behaviour and harassment?
People whose disability is considered to be invisible often experience offensive behaviour and harassment when using facilities for people with a disability. To better protect these people from harassment, the Act could require facilities designated for people with disability, such as toilets, parking spaces, seating and similar, have signage that does not exclusively imply that the facility is only for people in wheelchairs. An example is the increasing international use of the sunflower symbol for invisible disability, which in Australian airports is now appearing alongside the wheelchair disability symbol.
Is there is anything else you want to say about protecting people with disability from discrimination that affects how they access the community and services?
The guidance for attending in-person events sometimes ask attendees to not wear strong fragrances. Fragrance is just one example of a common and serious barrier to accessing public spaces that affects many people, but is rarely recognised. It might assist if the Act identified common barriers that duty holders need to address.
To offset unreasonable hardship for duty holders, and to address the sometimes-competing needs of people with different impairments, the Act might also specify that the barrier need only be removed at particular times or places, for example the advertised hours of ‘quiet time’ at some supermarkets. It would help, in the fragrance example, to have some buses, trams, train carriages and taxis labelled as low fragrance.
Segregation is not always bad or wrong; segregation might be safer, more supportive, more constructive in some circumstances for some people.
Q. How can we make sure the Disability Discrimination Act is strong for the future?
Including the human rights model of disability would help to ensure that the Act has wide coverage, in terms of both impairments and arenas where barriers occur.
Is there is anything else you want to add?
It is important to recognise that those with the most severe, complex and stigmatised impairments are likely to have the least voice in this consultation process. A lone voice might represent a large group of people. A single suggestion might hold great benefit for many. Loudness, eloquence and frequency of a position in respect of the Act does not necessarily indicate greater importance or relevance.
The intention of the new Disability Discrimination Act should be supported by further attention from government to the findings of the Disability Royal Commission.
People with disability would be well served by a reduction in the use of non-disclosure agreements when accommodations or reparations are made for an individual. This would augment the publication of examples of best practice mentioned above.
Moving forward
ME/CFS Australia and its patient-led member charities would welcome further engagement regarding the Disability Discrimination Act, particularly in relation to the definition of disability and to the discriminatory challenges faced in the community by people whose complex impairments fall simultaneously into multiple categories of disability:
redacted: s47F - personal privacy and/or
Spokesperson, Penelope McMillan, redacted: s47F - personal privacy