Use ME/CFS knowledge to inform Long COVID and post-viral disease research

The burden of disease for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is significant because the condition is so disabling. People living with ME/CFS have worse employment, mental, social and physical health outcomes than many other well-known diseases such as multiple sclerosis, HIV/AIDS, cancer and depression and it is estimated ME/CFS costs the economy $14.8 billion annually.

Some predictions forecast Long COVID will more than double the number of people living with post-viral disease in Australia.

Although research into ME/CFS has been underfunded, we do have vital knowledge about the condition, its effect on people who live with it, and the issues they face. This knowledge should be used to guide actions, from research and clinical guidelines, to GP education, access to healthcare with telehealth and increased support from clinical services and the NDIS.

The high degree of similarity between ME/CFS and Long COVID offers opportunities for researchers working on both conditions to benefit from the research that has already established strong links between ME/CFS, Long COVID and other post-viral diseases.

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 the cause and treatment options. If a drug is found to help people with Long COVID, it might finally offer the first, proven treatment for people with ME/CFS.

b)     Include people with ME/CFS and other post-viral diseases as comparison cohorts to people with Long COVID, in addition to healthy controls

Underfunded biomedical research lacking patient co-design has contributed to the poor health and wellbeing outcomes post-viral patients experience today. Replicating with Long COVID patient involvement in research co-design and recruitment will enhance research projects and deliver better outcomes.

Relationship with Long COVID & persistent post-viral diseases

Post-infectious illness consistent with the symptoms of ME/CFS has been described in the scientific literature for over 200 years. Post-infectious illness can be triggered by many different pathogens, such as Epstein Barr virus, Ross River virus, Human Herpes Virus 6 (HHV6) and even Ebola virus. The acute symptoms of these illnesses, and the organ damage they cause, can be very different. However, the lingering chronic fatiguing illness following each illness appears to be quite similar. Postacute sequelae of SARS-CoV-2 infection, referred to as Long COVID, is most likely just the latest post-viral disease to add to this long list.

It is estimated that 10-30% of people who get sick with COVID-19 will experience Long COVID, though this rate may be higher in those who were hospitalised. Diagnostic criteria require 6 months of symptoms to be present before ME/CFS can be diagnosed and Long COVID has already led to ME/CFS for some, or in the case of some studies, all patients.

For example, a recent study in the Netherlands found all Long COVID patients met diagnostic criteria for ME/CFS by 6 months from their initial respiratory illness. Another study, one of the largest to date which surveyed 3762 people from 56 countries 7 months post COVID infection, found 89.1% experienced PEM, the hallmark symptom of ME/CFS, but only 14.7% of patients had been diagnosed with ME/CFS. In a small study of three adolescents, all met the criteria for ME/CFS.

If 90% of Long COVID patients are misdiagnosed or undiagnosed ME/CFS, the same rate of undiagnosed patients estimated in the general population, the actual numbers of people with Long COVID are already much higher than this research suggests. Long COVID studies such as these imply that there will be a considerable increase in the number of people with ME/CFS in the foreseeable future.

For further information and references, please read the State of the Nation report. 

State of the Nation: Because people with ME/CFS matter

This is our time to remind all sitting members that people with ME/CFS matter.  The voices of all 250,000 Australians living with ME/CFS must to be heard.  Our votes count. 

The release of the State of the Nation report is our vehicle to action. 

Email your local Member of Parliament or Senator now, using our simple and easy-to-use online platform. In under 2 minutes you can send an email to your representative calling for change. It's as simple as entering your residential address, reviewing the content of the letter and pressing "send my email". Easy!

Take action now and contact your local MP or Senator