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Knowledge from ME/CFS research and the emerging field of Long COVID must be shared and integrated

There are many highly qualified researchers and centres that need support to conduct these correlation studies. For example, Emerge Australia, in partnership with La Trobe University, manages Australia’s only ME/CFS Biobank. This partnership aims to expand Australia’s ME/CFS Biobank to include Long COVID samples, allowing researchers to compare patient cohorts. This will be a unique resource in Australia. 

Any new research would be more efficient and effective if researchers:

a) Don’t reinvent the wheel: use findings from ME/CFS research to inform research topics, design, recruitment and analysis

There is no need to start from scratch with Long COVID research. Existing findings from ME/CFS research can provide clear guidance for research into cause and treatment options. If treatments are found that help people with Long COVID, these are potentially applicable for people with ME/CFS [1]. 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 the poor health and wellbeing outcomes post-viral patients experience today. It 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 to deliver relevant and better outcomes.

[1] T. Wong and D. Weitzer. ‘Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology.’ Medicina, 57:418 (2021).

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