Ensure knowledge from ME/CFS research and the emerging field of long COVID is shared and integrated

A high degree of similarity and strong links between ME/CFS and long COVID offer opportunities for researchers to collaborate.   

Emerge Australia, in partnership with LaTrobe University, manages Australia’s only ME/CFS Biobank. The opportunity to develop a long COVID Biobank at LaTrobe that would work on cross matching ME/CFS and long COVID samples to identify the molecular and cellular signatures of both conditions allowing researchers to compare patient cohorts, would add significant knowledge to patterns of post viral/infectious illness and have the potential to inform the evidence base for earlier diagnosis and better management of both conditions.   

Any new research would be more efficient and effective if researchers focussed on both M E/CFS and long COVID to design, conduct and analyse evidence. If treatments are found that help people with long COVID, these are potentially applicable for people with ME/CFS.^[1] 

a)  People with ME/CFS should be used as comparison cohorts to people with long COVID, in addition to healthy controls.

b)   Researchers should partner with ME/CFS and long COVID patients to design, conduct and analyse research

Underfunded biomedical research lacking patient codesign has contributed to poor health and wellbeing outcomes experienced by post-viral patients especially those with ME/CFS. A lack of funding has also contributed to a mistrustful relationship between patients, researchers, and clinicians. ME/CFS and Long COVD research must involve patients in codesign and recruitment to ensure research efforts are not wasted and delivery of relevant and better outcomes is achieved.

$2,480,000 is required over 3 years for ME/CFS, long COVID and post-viral research into patterns of illness and novel and evidence supported treatments, informed by current research.

Sign the petition

Asking the new Labor government for financial investment over the next three years to implement changes that have the potential to transform patient’s lives including updating Australia’s outdated Clinical Guidelines to reflect internationally agreed safe and best practice care for people with ME/CFS

[1] Wong and Weitzer. ‘long COVID and Myalgic Encephalomyelitis’.