Published 20 June 2024
The Federal Government will spend $1.1 million to have the National Health and Medical Research Council (NHMRC) develop new guidelines for long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
According to a statement from Federal Health and Aged Care Minister Mark Butler, the guidelines will be developed ‘in consultation with patients groups, health professionals and medical students’.
ME/CFS support service Emerge Australia’s chief executive Anne Wilson believes the Government’s announcement should tackle some of the key issues patients face in treatment.
In particular, Ms Wilson says they will help address the ‘medical gaslighting’ happening ‘all around the country’.
‘Clinicians are not confident in how to diagnose these patients, in knowing what to look for and understanding the various treatments, or the very few that are available,’ she said.
‘ME/CFS is a condition that’s unique to each individual so there is no one-size-fits-all.’
Research published last year concluded that Australia’s response to long COVID is ‘falling short of international standards’ and in need of ‘an urgent overhaul’.
Ms Wilson said the guidelines represent a first step towards better outcomes and that, from Emerge Australia’s standpoint, improving access to treatment is also vital.
‘What we want is for GPs to get the support they need in terms of the knowledge base, and then the various accessibility supports so they can do the job that I know they want to do,’ she said.
A 2023 review of the effect of physical activity on long COVID fatigue found those who engage in continuous motor activity often show a better prognosis in the duration and intensity of fatigue-related symptoms.
However, for a ‘small but significant percentage [8%] of the population’ using physical activity as a treatment ‘provides no benefit’.
Ms Wilson advocates for the removal of the current advice ‘for the use of exercise therapy and cognitive therapy as treatments’ for people with ME/CFS and long COVID.
‘Both those treatments have been discredited largely internationally in guidelines in the US, the UK and in Europe,’ she said.
The RACGP’s Handbook of Non-Drug Interventions recognises that ‘surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with ME/CSF’.
‘This is a valid concern but may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CSF who are more vulnerable to more severe [post-exertional malaise],’ it reads.
Minister Butler said the development of new clinical guidelines ‘will provide GPs and their patients with better diagnosis, treatment and care’.
‘The NHMRC will lead the development of these guidelines, in consultation with and for the benefit of the more than 250,000 people who suffer daily, often silently, with ME/CFS and related conditions,’ he said.
