Long covid debuts on ME/CFS registry

Clinicians are asked to refer patients in the hope of better research and prevalence estimates for long covid and chronic fatigue.

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Long covid will be included in the Australian ME/CFS (AusME) Registry and Biobank in hopes of expanding research into post-infection diseases.

While it is estimated that 5-10% of covid cases in Australia give rise to long covid, heterogeneity in estimates have arisen due to difficulties in characterising the complex and divergent disorder.

Growing research has linked long covid to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – which is characterised as overwhelming fatigue that is not improved by rest and is seen in around half of all long covid cases, research suggests.

Emerge Australia, a national advocacy group for chronic fatigue syndrome, is partnering with universities across the country to expand its research to long covid as well as ME/CFS by inviting people over 12 years old with post-infection diseases to enrol on the AusME registry

The registry will be officially launched in a webinar tomorrow (Thursday).

“People can join the AusME registry by signing up online and completing a series of surveys including medical history, co-occurring conditions, symptoms, medications, and quality of life,” said Emerge in a press release.

Patients can also provide blood which “will help discover disease causes and treatments”.

The new registry will build on the existing You+ME registry which launched in 2021 and holds data and biosamples that are used in ME/CFS research for more than 10 approved Australian research groups.

All those registered on You+ME will be transferred to AusME.

This includes people living with ME/CFS and healthy controls.

Currently there are 250,000 Australians living with ME/CFS. According to Emerge, it is forecasted that 320,000 people will develop long covid.

According to Emerge, there has been a lack of conclusive findings from ME/CFS research which may be a result of methodology, small samples and selection bias.

Emerge hopes that “AusME will provide researchers with important insights into the lived experience of those with post-viral illnesses”.

Emerge asks that clinicians refer patients to AusME and hopes a broad spectrum of participants could help provide accurate prevalence estimates and that resulting research could inform better funding and policy from the federal government.

“The recent pandemic affected many Australians, and no one really knows how many have been impacted by long covid or whether certain groups have been affected more than others,” said Emerge’s CEO Anne Wilson.

“We need individuals affected by long covid and ME/CFS, as well as healthy volunteers, to sign up for the AusME Registry to support medical research discoveries into these diseases,” she said.

“An online registry collating big data from the very patients affected by these diseases will transform ME/CFS and long covid research.”