Advocate says long COVID guidelines will help address ‘medical gaslighting’

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/CFES 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.’
 
However, NSW GP Dr Ken McCroary, who ‘has been treating these patients for decades’, remains sceptical about how useful the guidelines will prove without more support for longer consultations.
 
‘Money would be better spent adequately funding quality general practice consults,’ he said.
 
‘Chronic comorbidities take time, the system doesn’t help, and most don’t have healthcare cards and either pay gaps they can’t afford or go without care.
 
‘A list of guidelines gathering dust, unread in a folder somewhere, won’t help them cover Medicare inadequacies and they will continue to suffer unfairly.’
 
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.
 
Estimates of long COVID’s prevalence vary, with a 2023 international review suggesting it impacts 10–30% of non-hospitalised COVID-19 cases, 50–70% of hospitalised cases, and 10–12% of vaccinated cases. They also concluded that up to half of patients with long COVID could be described as meeting criteria for CFS.
 
More recently, Japanese research suggests around 12% of adults aged 20–69 experienced the condition in the wake of the Omicron BA.5 wave.
 
One study suggests most long COVID cases subside within a year of mild infection, but examples of extended symptoms are easy to find. Treatment has likewise proved fraught, leading to calls for more funding to boost care to patients with the condition.
 
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.
 
The RACGP has clinical resources for GPs with patients experiencing post-COVID-19 conditions.
 
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