People living with ME or chronic fatigue syndrome who appeared on SBS’s Insight program have accused the broadcaster of betraying them in the final cut, which presented what they claim is a potentially harmful and unscientific narrative and favoured a person who said she had “cured herself” by “listening to her body”.
TheSBSombudsman is investigating their individual complaints, as well as one from Emerge Australia, the national advocacy body for patients withmyalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS).
There are hundreds of negative comments about the episode on the program’s social media pages.
One participant who is a carer for his wife and daughter, Peter McCluskey, has told the SBS ombudsman the final broadcast “compounded the invalidation and gaslighting that patients and carers endure daily”. McCluskey wrote afirst-person piecefor SBS about his family’s experience, which was published ahead of the episode airing last month.
“The editorial decisions made by Insight undermined what we naively thought was the very purpose of the episode and breached multiple clauses of the SBS code of practice,” he wrote in a complaint seen by Guardian Australia.
He accused SBS of “… sidelining science, clinical expertise, and the lived experience of patients – all under the guise of balance”.
“Rather than giving voice to a stigmatised and misunderstood community, the program re-traumatised it.”
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The chief executive of Emerge Australia, Anne Wilson, accused SBS of presenting what she described as “aharmful narrative” by giving disproportionate airtime to one person who said she had recovered from ME/CFS, and then to have contracted and recovered from rheumatoid arthritis without medical care. She said she had “cured herself” by “listening to her body” and was now running marathons.
Wilson accused Insight of undermining decades of scientific research, education and advocacy by not challenging the narrative.
“Scientific evidence states that there is no recovery from rheumatoid arthritis and less than 10% of people with ME/CFS return to pre-illness functioning,” Wilson said. “Of further concern, this person claimed their recovery was due to attitude alone, implying that recovery is a choice or can be achieved through effort alone. There are no proven treatments for ME/CFS and there is no cure. The small number who recover are the lucky few.”
Emerge was approached by Insight producers to provide people to appear on the show and agreed to because of the program’s “positive reputation as well-researched, serious journalism”, Wilson said.
“We were pleased the program chose to feature the often-overlooked challenges of living with invisible illnesses such as ME/CFS, long Covid, fibromyalgia and similar conditions.
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“We were, however, extremely disappointed by the unbalanced narrative portrayed in the episode. Ironically, the episode accurately reflected the gaslighting experienced by many living with invisible illnesses.”
Another participant, Allie Rawlings, said she agreed to be part of the studio discussion because she believed SBS had integrity, but she was disappointed with the edited program which was broadcast. “The content aired bore little resemblance to the contributions I made during filming, stripping away the nuance, complexity, and intent of my perspective,” she told the ombudsman.
Another complainant, Lauren Beasley, said she had hoped the episode would bring clarity and compassion about her illness to the wider public.
“Instead of platforming the full spectrum of experiences, the episode centred disproportionately on a highly individualised recovery narrative – one based on mindset, willpower, and personal agency,” Beasley wrote.
A spokesperson for SBS said Insight’sremit is to examine topical issues from a variety of perspectives.
“We generally receive a range of feedback, as we did for this topic, and we’ll be responding to these audience members in line with our usual practices,” the spokesperson said.
“Like all of our content, Insight is subject to the SBS Code of Practice, which states that SBS will share a diversity of views and perspectives, and requires our news and current affairs programs to provide balanced and impartial coverage. We appreciate the contribution of the participants who shared their lived experiences in the studio and helped to raise awareness of the important issue of invisible illness.”