We must educate doctors to diagnose ME/CFS and Long COVID and provide evidence-based support to people with these conditions.

$942,500 is required over 5 years for GP Education about ME/CFS, Long COVID and post-viral illnesses, accessible to all of Australia’s GPs.

Research estimates 90% of people with ME/CFS have not been diagnosed and GPs often lack knowledge and confidence in diagnosing the disease. This data is consistent with Emerge Australia’s survey of people living with ME/CFS, which found:

• 48% said their GP was either poorly or very poorly informed about ME/CFS
• 60% were diagnosed within 2 years, while the remainder waited anywhere from 3 to 10 years
• 73% said lack of knowledge from their healthcare provider was an obstacle to accessing healthcare.

In addition to underdiagnosis, misdiagnosis is also common, and has significant implications for patient care. One study found that more than a third of patients diagnosed by their GP with ME/CFS either didn’t meet the criteria for ME/CFS or had other exclusionary conditions, which meant they couldn’t be diagnosed with ME/CFS.

GPs also need to be educated about safe symptom management approaches that can provide relief from symptoms and improve a patient's quality of life. There are two recommend approaches: pacing and stepwise symptom management, described below. Some patients with Long COVID may also benefit from approaches such as pacing.

Underdiagnosis, misdiagnosis, disbelief and inappropriate management from GPs prevent patients from receiving correct care for their condition. There is a significant need for greater GP education for those already practicing and for medical trainees in undergraduate programs. This will ensure the next generation of people with diseases like ME/CFS and Long COVID don’t suffer the same stigma or poorly informed healthcare.

Prevalence, Prognosis, and Mortality

Limited interest and funding for ME/CFS research means there are large gaps in our understanding of prevalence, prognosis and mortality. Prevalence provides an overall picture of how many people have a particular disease, which informs disease burden. Long COVID means the prevalence of ME/CFS is expected to rise. 

Prevalence

Accepted prevalence estimates vary from 0.4 to 1% of people living with ME/CFS. Based on these numbers it is estimated up to 250,000 people live with ME/CFS in Australia. However, this is most likely an underestimate due to underdiagnosis and inaccurate records. Up to 90% of people may be undiagnosed or misdiagnosed. Additionally, when patients visit their health care provider, it is likely ME/CFS is not reliably coded, which contributes to inaccuracies in the reported prevalence.

While ME/CFS can affect anyone of any age, gender or socio-economic or cultural background, there are some noteworthy patterns:

• Women are three times more likely to be affected than men
• The two most common ages of onset occur between the ages of 10 to 19 years and 30 to 39 years. The average age of onset is 33 years
• Approximately 25% of people experience severe symptoms, leaving them housebound or bedbound 

Despite the “Yuppie Flu” myth that ME/CFS is a disease middle-class white people, research shows that people from minority groups and lower socio-economic status have as high, or higher, prevalence rates, than middle class white people. Despite this, research studies continue to largely include only white people. 

Prognosis

Long term prognosis of ME/CFS is difficult to predict. While some patients improve over time, full recovery, defined as a return to pre-illness functioning, is not common. Recovery rates are estimated to be just 5-10%. Prognosis is better for young people (children and adolescents) and those with mild forms of the illness than it is for those middle-aged and older, and for those who are more severely unwell.

ME/CFS can take a relapsing/remitting course, like multiple sclerosis. This makes it difficult to determine whether cases of recovery are more accurately in remission, and at risk of relapse in the future. In up to 20% of cases the illness worsens over time.

Mortality

It is similarly unclear whether ME/CFS increases risk for earlier mortality. Some studies suggest an elevated risk of suicide and earlier mortality compared to national norms. However, this is another area where more research is required.

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To see our other stories and read more about our push for a national post-infection disease strategy, click HERE.