Australia: An hour-long, nationally televised discussion panel on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) on Oct. 16 has raised the ire of many in the patient community, who claim the program overrepresented the likelihood of recovery from the illness, and promoted harmful graded exercise therapy (GET).
Insight is a weekly current affairs show hosted by national broadcaster SBS. The format is a debate on a single issue with a panel of guests and a studio audience who participate in the discussion. For this episode on ME/CFS, producers invited input from seven patients (including my young son Luke), ranging from the severely ill to the recovered, with leading Australian researchers, a specialist general practitioner, an exercise physiologist, and a key government advisor and clinician.
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The approach of the programme is carefully neutral, and for this episode it presented an overview of the illness in Australia from the view of patients, doctors, researchers, and decision-makers. The direction in the filming and editing was sympathetic and highlighted patient experiences with the difficulties of initial diagnoses and poor treatment by doctors and government support services.
There was some emphasis on the debilitating severity of the illness and the rarity of recovery, particularly by specialist general practitioner Mark Donohoe who noted that seven of his patients had committed suicide.
However, the inclusion of two recovered patients on the discussion panel, both athletes, and input from key government advisor, Professor Andrew Lloyd, and exercise physiologist, Nathan Butler, from the Active Health Clinic promoting graded exercise has drawn criticism from both the patient community and the general public. Patients also condemned the absence of older sufferers who have been ill for decades.
Despite this, as a participant I felt that overall the show was positive for the patient community in terms of raising public awareness, and it provided a national platform for advocacy efforts. #MEAction Network Australia stepped up with a comprehensive grassroots campaign to highlight issues of concern with a live-tweet of the programme and links to articles, research, patient stories and graphics for use on social media.
Interest was certainly high: the promotional videos for the show on Facebook alone clocked more than 1800 shares and 760,200 views, with clips of the more severe patients, Ketra Wooding and my son Luke, viewed more than 563,000 times. Follow-up articles online and in national print and online media have also seen an outpouring of support and sympathy from the general community, particularly for the suffering of patients Andrew Bretherton and Deb Adams who both appeared unwell on-stage and crashed badly after appearing on the show, for young Luke who is housebound at 15, and for Ketra Wooding, a staunch advocate for ME/CFS from her bed in the dementia ward of a nursing home who produced the 30-minute, After Unrest – Ketra’s Story, video earlier this year.
- Read the article about Ketra in the Sydney Morning Herald.
- Read the article about Luke Temm in Daily Mirror.
- Read the article about Andrew on ME Australia.