Stop the ABC from broadcasting misinformation about ME/CFS
Stop the ABC from broadcasting misinformation about ME/CFS
The issue
The Australian Broadcasting Corporation (ABC) continues to broadcast dangerous and discredited views regarding Myalgic Encephalitis / Chronic Fatigue Syndrome (ME/CFS) by its principal health reporter, Dr. Norman Swan. This petition is calling on the ABC to:
- Issue a retraction of the discredited information in writing on its website and "on air" on the popular Coronacast podcast of which Dr. Swan is the host.
- Issue an unreserved apology to the thousands of Australians suffering with ME/CFS who are harmed directly by the promotion of the widely discredited theory of Graded Exercise Therapy (GET) and the stigmatisation of ME/CFS as a mental illness.
- Issue a formal warning to Dr. Swan that further promotion of discredited and unscientific information as fact will not be tolerated on the ABC.
- Engage with the ME/CFS and Long COVID community to fully understand and shed a light on this debilitating condition that affects thousands of Australians.
On the September 27th 2023 episode of Coronacast (https://www.abc.net.au/listen/programs/coronacast/getting-a-strong-grip-on-long-covid/102840158), Dr. Norman Swan made the following comments regarding ME/CFS:
- “Using an exercise physiologist and slowly grading up your exercise is recognised as an effective treatment or rehabilitation for people with fatigue syndrome.”
- “It’s controversial with a small group of people with Chronic Fatigue Syndrome but if you look at the population of people who have got ME/Chronic Fatigue Syndrome there is good evidence that Cognitive Behavioural Therapy, in the absence of a medical therapy… what are you going to do– are you going to sit with your symptoms? Cognitive Behavioural Therapy and Graded Exercise does seem to help.”
Dr. Swan continues by acknowledging the controversial nature of this view:
- “There’s a controversial randomised trial called the PACE trial that a group of people with Chronic Fatigue Syndrome don’t like, they think it was badly done…”
Puzzlingly, Dr. Swan appears to contradict his earlier statement about Graded Exercise Therapy (GET):
- “There’s no question that speeding up exercise too quickly for people with Chronic Fatigue does make them worse. So you’ve got to just do this incredibly carefully.”
This is not the first time Dr. Swan and the ABC has broadcast misinformation about ME/CFS. On the January 29th 2021 episode of Coronacast (https://www.abc.net.au/listen/programs/coronacast/you-thought-herd-immunity-would-save-us-maybe-not/13100018), Dr. Swan made the following remark:
- “Chronic Fatigue Syndrome… they are more, I’ll get killed for saying this, psychosomatic…”
The signatories of this petition wish to emphasise two critical points:
- GET is not an appropriate therapy for people with ME/CFS. In fact, it can make people with ME/CFS significantly worse.
- ME/CFS is not a mental health condition. Therefore CBT is not a primary therapy for people with ME/CFS. Continuing to promote CBT as a primary therapy perpetuates the stigma that ME/CFS is a mental health condition that has no underlying pathology.
People with ME/CFS routinely battle scepticism from doctors and those within the medical community. Dr. Swan’s comments perpetuate this scepticism on a public stage, writ large. His views provide cover to doctors, employers and insurance companies to deny people suffering from ME/CFS proper medical treatment and financial support.
Dr. Swan’s views are inconsistent with the widely accepted, global medical advice.
The UK NICE Medical Guidelines for ME/CFS 2021 (https://www.nice.org.uk/guidance/ng206/chapter/Recommendations) state the following:
(1.11.14) Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses - any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
The CDC in the United States publishes the following guideline: (https://www.cdc.gov/me-cfs/treatment):
“While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.”
Emerge, Australia’s peak advocacy body for people with ME/CFS publishes the following (https://www.emerge.org.au/news/what-will-it-take-for-australia-to-get-new-clinical-guidelines-for-mecfs/):
"It was assumed GET and CBT treatment would reverse both activity avoidance and deconditioning. This would lead to a reduction in symptoms and even full recovery. However, biomedical research into ME/CFS does not support the deconditioning hypothesis of ME/CFS and GET and CBT studies do not show the high rates of recovery and improvement which would be predicted by the deconditioning hypothesis."
By continually broadcasting Dr. Swan’s harmful and inaccurate views of ME/CFS therapies, the ABC is in breach of its statutory duty to ensure accuracy.
The ABC’s editorial policy (https://www.abc.net.au/edpols/2-accuracy/13635344) states:
“The ABC has a statutory duty to ensure that the gathering and presentation of news and information is accurate according to the recognised standards of objective journalism. Credibility depends heavily on factual accuracy.”
The ABC has previously published and broadcast stories that capture the challenges of living with ME/CFS from the perspective of people with lived experiences. These stories illustrate the ABC's ability to uphold accuracy in its discussion of ME/CFS:
https://www.abc.net.au/news/2023-09-09/why-mecfs-is-nothing-like-everyday-fatigue/102776070
https://www.abc.net.au/news/2022-11-30/invisible-disabilities-routinely-disbelieved/101420680
https://www.instagram.com/reel/CxKwHuUvj0b/
The ABC seriously undermines the credibility of its reporting and contributors by promoting Dr. Swan’s discredited views on a widely heard, flagship podcast.
The signatories of this petition are pleading with the ABC to stop broadcasting harmful and discredited views.
The issue
The Australian Broadcasting Corporation (ABC) continues to broadcast dangerous and discredited views regarding Myalgic Encephalitis / Chronic Fatigue Syndrome (ME/CFS) by its principal health reporter, Dr. Norman Swan. This petition is calling on the ABC to:
- Issue a retraction of the discredited information in writing on its website and "on air" on the popular Coronacast podcast of which Dr. Swan is the host.
- Issue an unreserved apology to the thousands of Australians suffering with ME/CFS who are harmed directly by the promotion of the widely discredited theory of Graded Exercise Therapy (GET) and the stigmatisation of ME/CFS as a mental illness.
- Issue a formal warning to Dr. Swan that further promotion of discredited and unscientific information as fact will not be tolerated on the ABC.
- Engage with the ME/CFS and Long COVID community to fully understand and shed a light on this debilitating condition that affects thousands of Australians.
On the September 27th 2023 episode of Coronacast (https://www.abc.net.au/listen/programs/coronacast/getting-a-strong-grip-on-long-covid/102840158), Dr. Norman Swan made the following comments regarding ME/CFS:
- “Using an exercise physiologist and slowly grading up your exercise is recognised as an effective treatment or rehabilitation for people with fatigue syndrome.”
- “It’s controversial with a small group of people with Chronic Fatigue Syndrome but if you look at the population of people who have got ME/Chronic Fatigue Syndrome there is good evidence that Cognitive Behavioural Therapy, in the absence of a medical therapy… what are you going to do– are you going to sit with your symptoms? Cognitive Behavioural Therapy and Graded Exercise does seem to help.”
Dr. Swan continues by acknowledging the controversial nature of this view:
- “There’s a controversial randomised trial called the PACE trial that a group of people with Chronic Fatigue Syndrome don’t like, they think it was badly done…”
Puzzlingly, Dr. Swan appears to contradict his earlier statement about Graded Exercise Therapy (GET):
- “There’s no question that speeding up exercise too quickly for people with Chronic Fatigue does make them worse. So you’ve got to just do this incredibly carefully.”
This is not the first time Dr. Swan and the ABC has broadcast misinformation about ME/CFS. On the January 29th 2021 episode of Coronacast (https://www.abc.net.au/listen/programs/coronacast/you-thought-herd-immunity-would-save-us-maybe-not/13100018), Dr. Swan made the following remark:
- “Chronic Fatigue Syndrome… they are more, I’ll get killed for saying this, psychosomatic…”
The signatories of this petition wish to emphasise two critical points:
- GET is not an appropriate therapy for people with ME/CFS. In fact, it can make people with ME/CFS significantly worse.
- ME/CFS is not a mental health condition. Therefore CBT is not a primary therapy for people with ME/CFS. Continuing to promote CBT as a primary therapy perpetuates the stigma that ME/CFS is a mental health condition that has no underlying pathology.
People with ME/CFS routinely battle scepticism from doctors and those within the medical community. Dr. Swan’s comments perpetuate this scepticism on a public stage, writ large. His views provide cover to doctors, employers and insurance companies to deny people suffering from ME/CFS proper medical treatment and financial support.
Dr. Swan’s views are inconsistent with the widely accepted, global medical advice.
The UK NICE Medical Guidelines for ME/CFS 2021 (https://www.nice.org.uk/guidance/ng206/chapter/Recommendations) state the following:
(1.11.14) Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses - any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
The CDC in the United States publishes the following guideline: (https://www.cdc.gov/me-cfs/treatment):
“While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.”
Emerge, Australia’s peak advocacy body for people with ME/CFS publishes the following (https://www.emerge.org.au/news/what-will-it-take-for-australia-to-get-new-clinical-guidelines-for-mecfs/):
"It was assumed GET and CBT treatment would reverse both activity avoidance and deconditioning. This would lead to a reduction in symptoms and even full recovery. However, biomedical research into ME/CFS does not support the deconditioning hypothesis of ME/CFS and GET and CBT studies do not show the high rates of recovery and improvement which would be predicted by the deconditioning hypothesis."
By continually broadcasting Dr. Swan’s harmful and inaccurate views of ME/CFS therapies, the ABC is in breach of its statutory duty to ensure accuracy.
The ABC’s editorial policy (https://www.abc.net.au/edpols/2-accuracy/13635344) states:
“The ABC has a statutory duty to ensure that the gathering and presentation of news and information is accurate according to the recognised standards of objective journalism. Credibility depends heavily on factual accuracy.”
The ABC has previously published and broadcast stories that capture the challenges of living with ME/CFS from the perspective of people with lived experiences. These stories illustrate the ABC's ability to uphold accuracy in its discussion of ME/CFS:
https://www.abc.net.au/news/2023-09-09/why-mecfs-is-nothing-like-everyday-fatigue/102776070
https://www.abc.net.au/news/2022-11-30/invisible-disabilities-routinely-disbelieved/101420680
https://www.instagram.com/reel/CxKwHuUvj0b/
The ABC seriously undermines the credibility of its reporting and contributors by promoting Dr. Swan’s discredited views on a widely heard, flagship podcast.
The signatories of this petition are pleading with the ABC to stop broadcasting harmful and discredited views.
Victory
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Petition created on 2 October 2023