An announcement has pre-empted the chief recommendation in new guidelines before they are developed.
New guidelines for treating long covid and myalgic encephalomyelitis/chronic fatigue syndrome are to be developed by the National Health and Medical Research Council – but we already know what the biggest change will be.
They will recommend against graded exercise therapy, which patient advocates say is discredited, harmful and out of step with other countries’ guidelines.
Last month Health Minister Mark Butler announced a $1.1 million grant to the NHMRC to develop the guidelines in consultation with patient support groups such as Emerge and ME/CFS Australia.
“Australia’s ME/CFS clinical guidelines are over 20 years old,” Emerge CEO Anne Wilson said. “This is the first government who has been willing to address these outdated clinical guidelines that do not reflect international best practice in the care of patients.
“We are truly grateful for the advocacy from many people over many years that has led to this announcement.”
Mr Butler said the process would take two to three years, “follow the rigorous NHMRC guideline standards” and include extensive public consultation.
The new guidelines will “determine diagnostic criteria to help doctors and their patients with better treatments, coping strategies, and options for care”, a media release said. As well as ME/CFS and long covid, also known as post-acute sequelae of covid-19, the guidelines will take in postural orthostatic tachycardia syndrome and fibromyalgia.
Exercise intolerance and/or post-exertional malaise is a symptom common to long covid and ME/CFS.
The question of exercise for people living with these conditions is highly sensitive, as many report having their experience dismissed by medical professionals as due to unfitness or deconditioning.
Last year a team from Yale used invasive cardiopulmonary exercise testing on people with long covid, which involves inserting pressure-sensitive catheters into the pulmonary artery and an artery in the wrist. The team reported that this showed impaired oxygen extraction in these patients during exercise – a rare physiological confirmation of an abnormality that does not show up on more conventional tests.
The UK’s NICE guidelines on managing ME/CFS already advise against telling patients to exercise more, unless as part of a program overseen by ME/CFS specialists, as it may worsen their symptoms.
This change to NICE’s guidelines last year, which also found cognitive behavioural therapy ineffective, was welcomed by many patients but was accused by some of being based on ideology rather than evidence, setting off an academic back and forth.
The RACGP, as part of its HANDI resource (Handbook of Non-Drug Interventions), suggests incremental physical activity for CFS/ME with “moderate” confidence and several caveats, on a page last updated in April. Graded exercise therapy is a form of incremental physical activity.
Slowly increasing exercise over time has “been shown to improve muscle strength, cardiovascular endurance and symptoms in a wide variety of conditions that have chronic fatigue as a symptom, such as heart disease, cancer, chronic obstructive pulmonary disease and post-viral fatigue”, the page says.
“How it works is not understood but it may prevent/reverse the secondary physical deconditioning and exercise intolerance related to prolonged (relative) inactivity … Although GET has been extensively tested in clinical trials, it remains controversial within some support groups.”
The RACGP’s president Dr Nicole Higgins told Rheumatology Republic today that the HANDI page was “not a clinical guideline for long covid, or for CFS/ME. It is one possible non-drug intervention for the management of symptoms, where patients may wish to try gradually increasing their physical activity in partnership with their GP. It states that this approach will not be suitable for all patients.”
She said several trials and a Cochrane review supported this approach.
“While no randomised controlled trial is perfect, the evidence overall is in support that some patients do benefit from a graded increase in physical activity,” Dr Higgins said.
“In all, there are around 250 registered clinical trials for long covid under way, with 120 published. Of those, 118 include a physical activity intervention, with 57 publications so far … The RACGP has advocated for government funding for the establishment of living guidelines across a range of topics, and this is a case study for why such funding is so necessary.”
