By David Tuller, DrPH
Australia’s National Medical Health and Research Council (NMHRC) recently released what it calls a “scoping survey” as a first step in developing new clinical practice guidelines for ME/CFS. The survey was posted online on February 21st; the deadline for responding is April 27th. The plan calls for the new guidelines to be published in three years.
The survey follows the Australian government’s announcement last June that it would allocate $1.1 million (Australian dollars) to the NHMRC to create the new guidelines. This announcement constituted a major victory for Australia’s patient community. For years, people with ME/CFS have demanded new guidelines, pointing out that the previous national guidelines were developed more than 20 years ago and promoted the graded exercise therapy/cognitive behavior therapy (GET/CBT) treatment paradigm. That paradigm no longer enjoys its former hegemonic hold on clinical practice–especially since it was rejected by the U.K.’s National Institute for Health and Care Excellence (NICE) in its 2021 guidelines for ME/CFS.
The June announcement came from the office of Mark Butler MP, the minister for health and aged care. The media release noted that “the Australian Government has heard the calls for better support for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and related conditions.” According to the announcement, the parties involved in the development of the guidelines will include two major patient advocacy organizations—Emerge Australia and ME/CFS Australia—along with the Royal Australian College of Physicians and the Royal Australian College of General Practitioners.
Minister Butler himself declared the following: “I’d like to thank people with ME/CFS for their ceaseless campaign to be heard and believed in the face of, frankly, years of doubt and disregard…The development of new Australian clinical guidelines will provide GPs and their patients with better diagnosis, treatment and care.”
The June announcement identified ME/CFS as “a neurological condition affecting up to 250,000 people in Australia.” It highlighted the significance of post-exertional malaise and promised that “the guidelines will make reference to other post-infection onset conditions with similar or aligned symptoms, like post-acute sequelae of COVID-19, also known as long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.”
Both Emerge Australia and ME/CFS Australia have hailed the effort as a chance to forge a new path forward for the country. Emerge CEO Anne Wilson called it “a landmark and monumental announcement” and “a game changer.” Penelope McMillan, spokesperson for ME/CFs Australia, also expressed enthusiasm. “We look forward to working alongside other groups representing patients and our colleagues from the health professional groups and experts in the evaluation of scientific evidence,” she said. “This will change lives for patients and those who care for them.”
Creating new national guidelines that ditch the GET/CBT approach will likely face some headwinds. The RACGP, in particular, has long been a hotbed of support for these psycho-behavioral interventions.
Last April, the royal college published a revised version of its Handbook of Non-Drug Interventions (HANDI) that recommended “incremental physical activity” for those with what it called “CFS/ME.” Presumably, they changed the name from GET in an effort to avoid an immediately negative reaction from patients. But their use of CFS/ME rather than the current standard, ME/CFS, is an indication of their nostalgic view of the illness.
As I wrote in a post last spring, “Despite the name-switching, the guidance still cites the fraudulent PACE trial favorably and actually recommend the study’s GET manual for therapists and its counterpart for patients for more information about the intervention…RACGP has obviously learned nothing about this illness—or, more accurately, has chosen to learn nothing. The organization’s willful stupidity and ignorance is pathetic, embarrassing, and harmful to the interests of patients.”
So getting to this point is only one step, albeit a huge one. Hopefully, the follow-through will be robust enough to result in reasonable guidelines, despite opposition from the usual troglodyte lobby. These guideline-development processes can be excruciatingly difficult, even when the outcome is ultimately a positive—as was the case with the 2021 NICE guidelines.
Of course, as the British experience has shown, ensuring implementation of any new guidelines presents yet another set of challenges. Some of the royal colleges have publicly attacked the new NICE guidelines, and many regional National Health Service trusts appear to have ignored them. Australia has its own collection of die-hard supporters of the GET/CBT paradigm, and they will continue to push their out-dated views.
The survey explains that it has been developed to: “understand the needs of the community regarding clinical practice guidelines,” “understand potential enablers and barriers to the care of people with ME/CFS,” “establish priority areas for evidence review that reflect the needs of the ME/CFS community,” “identify appropriate formats for the guidelines,” and “identify further areas for research where the evidence base is lacking.” It is open to anyone–patients, carers, researchers, clinicians—whether Australian or not. (People in different categories get directed to different questions.)
The national advocacy organizations are hoping for a robust response to help inform the guidelines.
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Disclosure: I am a senior fellow in public health and journalism at the Center for Global Public Health, which is part of the School of Public Health at the University of California, Berkeley. My academic position is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.