Published: 23 June 2025
Invisible, Misrepresented, and Harmed: ME/CFS Voices Demand Accountability from SBS
A Joint Statement from Participants and Advocates in Response to the 20 May 2025 Episode of Insight
This statement has been prepared by a group of individuals who participated in the recent SBS Insight episode on invisible illness. We are united in our deep concern over how the episode was produced, edited, and presented and the serious harm it caused by misrepresenting Myalgic Encephalomyelitis (ME/CFS) and its impact on the wider chronic illness community.
We believe this broadcast represents a clear breach of SBS’s own Code of Practice. The program:
- Failed to uphold editorial integrity by platforming a participant with undisclosed commercial interests (Section 3.1: Editorial Independence and Integrity);
- Presented medically inaccurate and misleading portrayals of ME/CFS (Section 3.2: Accuracy);
- Minimised the diversity of lived experiences in favour of a single recovery narrative (Section 3.3: Diversity of Views and Perspectives);
- Caused emotional harm to participants and viewers alike (Section 4.1: Harm and Offence);
As a public broadcaster, SBS has a duty to ensure ethical, accurate, and inclusive storytelling, especially when dealing with marginalised communities.
This statement serves to:
Highlight the harm caused by editorial decisions:
We were promised that this episode would provide a platform to advocate and educate the public about the realities of conditions like ME/CFS. In good faith, we accepted the invitation to appear. Participation took significant effort, many of us travelled long distances for filming, then spent days, weeks, or even months recovering. This toll continues as we cope with the impacts of ongoing misrepresentation and erasure.
What aired felt disconnected from the conversations during filming, even allowing for the usual post-production editing. Vulnerable disclosures were minimised or cut entirely, while the episode disproportionately centred a single, unrepresentative “recovery” narrative that suggested illness is a matter of mindset or lifestyle. These editorial decisions were not just careless, they were actively harmful.
Most disturbingly, one participant was explicitly instructed by producers not to refer to their condition as “ME/CFS,” but instead to use the term “chronic fatigue”—despite this not being the terminology they personally use. While some individuals may prefer that label, most in the ME/CFS community use and recognise the term ME/CFS. By overruling the participant’s choice of language, SBS disregarded their autonomy and diminished representation for the broader ME/CFS community.
Expose the episode’s failure to disclose critical information and uphold ethical standards:
No disclosure was made about one participant’s vested financial interest in promoting her own recovery services, despite her narrative dominating the episode. Viewers were not informed that this individual profits from selling “recovery coaching” to people with chronic illness, a clear conflict of interest that demanded transparency.
Whether through omission or insufficient journalistic due diligence, this failure represents a serious breach of journalistic ethics and public broadcaster responsibilities. The information was publicly accessible and should have been disclosed to ensure viewers could critically assess the credibility of the claims made, and make informed judgments.
By failing to contextualise or challenge unfounded claims presented as medical fact, the program gave harmful narratives an undue platform — compounding harm and undermining public trust. Misrepresenting ME/CFS is not only a journalistic failing — it is a disability rights issue. People with chronic illnesses deserve the same protections, respect, and representation afforded to other marginalised communities.
Participants had given their time, energy, and trust based on a premise that was later reframed during editing. This shift compromised informed consent and highlights the need for transparency at every stage of production.
Address the broader implications this episode has for public understanding of ME/CFS:
Ironically, in an episode meant to raise awareness of various chronic and “invisible” illnesses, it is the ME/CFS community that has borne the brunt of the harm. ME/CFS is already one of the most misunderstood and stigmatised conditions.
Despite decades of advocacy and growing biomedical evidence, public understanding remains dangerously limited. A respected medical professional on the panel clearly addressed systemic failures in chronic illness care – including medical gaslighting and the harms caused when clinicians can’t say “I don’t know.” Yet these critical insights were sidelined in favour of a single individual’s story of “healing” through nature and marathon running.
This narrative echoes the very dismissiveness our community fights against. By framing ME/CFS as a problem of mindset, the episode reinforces stigma and undermines both lived experience and scientific progress.
Call for accountability, transparency, and meaningful change within SBS:
We call for:
- A full editorial review of the episode;
- A public commitment for accountability with ongoing episodes and apology to the participants involved;
- A serious re-evaluation of SBS’s standards when producing content on disability and chronic illness.
It is imperative that any future programming on these topics be created in meaningful consultation with experts, advocacy organisations, and those with lived experience.
Advocate for responsible, evidence-based media representation of invisible disabilities moving forward:
SBS has an obligation not only to reflect diversity but to do so with accuracy, sensitivity, and care. This includes:
- Implementing disability competency and sensitivity training for producers and editors 2
- Committing to amplifying the voices of recognised experts and guests in good faith.
We acknowledge that this statement is not the only critical response to the episode. As individuals, many of us have submitted personal complaints, and Emerge Australia, the national patient advocacy organisation for ME/CFS, has also lodged a formal complaint on behalf of its members.
For many, this broadcast caused emotional harm, and many viewers and community members have voiced their concern and distress. The failure to represent ME/CFS accurately and ethically has been felt as a betrayal of trust, not only of its participants, but also of SBS’s broader audience, particularly those living with invisible illnesses, who deserve respectful and evidence-based media representation.
We participated in this program hoping to raise awareness, challenge stigma, and foster greater public understanding of invisible illness and ME/CFS. Despite SBS’s failure to uphold its responsibility to us, to its viewers, and to the community it claimed to represent, this goal remains unchanged.
We are deeply grateful for the support we’ve received from the ME/CFS community, both in the lead-up to the program and in the wake of its airing. Your messages, advocacy, and solidarity have reminded us why we spoke up in the first place. We do this for every person who lives with invisible illness, whose story hasn’t yet been heard, and who deserves truth, dignity, and justice in how they’re represented.
We will not stay silent while our experiences are distorted and our condition misrepresented. We call on SBS to take responsibility, to act with transparency, and to repair the harm caused.
Because ethical, accurate representation is not a request. It’s a requirement.
Signatories to this statement:
Allie Rawlings
Peter McCluskey
Lauren Beasley
Brett Berry.
Media Enquiries:
Peter McCluskey
[email protected]
