Emerge Australia strongly advocates for Australia’s ME/CFS clinical guidelines to be updated to remove GET and CBT as recommended treatment options in the recently released report, State of the Nation: Because people with ME/CFS matter.

In the report, Emerge Australia details that it is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure Australian ME/CFS patients have access to the best possible care, based on current understanding of the condition and latest evidence. As ME/CFS research continues to evolve, clinical guidelines quickly become outdated. Emerge Australia believes that new ME/CFS guidelines should be living documents which are regularly updated by a standing committee of clinicians, researchers, patients and carers, as new evidence comes to light.

Australia’s current clinical guidelines are out of step with best practice clinical guidelines overseas and even include treatments known to harm patients. The lack of biomedical research into ME/CFS, its known causes and proven treatment options has significant implications for clinical guidelines.

There are a number of clinical guidelines used around the world. However, due to the lack of information about ME/CFS some do not include post-exertional malaise (PEM) as a core feature of the condition, or continue to recommend outdated management techniques such as Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).

Australia last updated its clinical guidelines for ME/CFS in 2002. In its 2019 report, the National Health and Medical Research Council’s (NHMRC) ME/CFS Advisory Committee recommended updating these clinical guidelines. In her response to the Committee’s report, NHMRC’s CEO agreed with the recommendation and undertook to update the guidelines.

However, this process is yet to commence.

Continued recommendation of GET and CBT has put clinical management of ME/CFS in Australia out of step with international best practice.

In 2017, the US Centers for Disease Control and Prevention removed recommendations for GET and CBT as treatments for ME/CFS from its website.

Based on an extensive evidence review, the newly published 2021 UK clinical guidelines also do not recommend GET and CBT for ME/CFS.

NHMRC’s ME/CFS Advisory Committee noted that the continued presence of GET and CBT as treatment options for ME/CFS in Australia had caused mistrust among patients and lowered confidence in the guidelines and healthcare services more generally.

Mistakes of the past are occurring again in the management of people with Long COVID. Some clinicians are proscribing GET to assist recovery. However, just as evidence suggests that GET may accentuate PEM in ME/CFS, the same effect has been observed in post-acute COVID-19 patient narratives. For this reason, GET should not be prescribed for management of Long COVID.

Read the report here - State of the Nation: Because people with ME/CFS matter

The harmful nature of Graded Exercise Therapy and Cognitive Behaviour Therapy

In the past, graded exercise therapy (GET) and cognitive behaviour therapy (CBT) have been commonly recommended treatments for ME/CFS. GET assumes the symptoms of ME/CFS are largely the result of physical deconditioning, due to lack of activity. GET has often been combined with cognitive behaviour therapy (CBT) on the assumption that activity avoidance in people with ME/CFS was fear-based, and the treatment focussed on challenging these presumed fears and encouraging increased activity.

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.

This is our time to remind all sitting members that people with ME/CFS matter.  The voices of all 250,000 Australians living with ME/CFS must to be heard.  Our votes count. 

The release of the State of the Nation report is our vehicle to action. 

Email your local Member of Parliament or Senator now, using our simple and easy-to-use online platform. In under 2 minutes you can send an email to your representative calling for change. It's as simple as entering your residential address, reviewing the content of the letter and pressing "send my email". Easy!

Take action now and contact your local MP or Senator