Links between ME/CFS and Long COVID Position Statement Download the 'Links between ME/CFS and Long COVID Position Statement' March 2022 Statement Emerge Australia recognises the close links between ME/CFS and Long COVID. Scientific studies indicate that the most frequent shared symptoms of people with Long COVID and people with ME/CFS are post-exertional malaise (PEM), cognitive difficulties and fatigue . Future research is essential to better understand both conditions and to develop effective treatments. Given post-exertional malaise is a core and/or common feature of both conditions, Emerge Australia advocates for clinical management approaches which minimise the risk of harm: pacing, rest and stepwise symptom management. For many people, ME/CFS develops after a viral infection. ME/CFS can be triggered by a wide variety of infectious agents, including Epstein Barr virus, Ross River virus or Human Herpes Viruses13. Long COVID is a post-viral illness triggered by the SARS-CoV-2 virus. There are many overlaps between ME/CFS and Long COVID, both in terms of symptoms and pathophysiology, suggesting the two conditions are likely related. Given this relationship, Emerge Australia advocates for more research into both ME/CFS and Long COVID. Better understanding of one is likely to lead to better understanding of both and, ultimately, more effective treatments. Like those living with ME/CFS, many Long COVID patients experience PEM, making increased activity and exercise potentially harmful. This is inclusive of graded activity and graded exercise. In the absence of evidence-based treatments, Emerge Australia advocates for harm minimisation in the clinical management of Long COVID. This is best achieved with pacing, rest and stepwise symptom management. Background Coronavirus disease 2019 (COVID-19) is an infectious illness caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)2. Noteworthy, a significant number of ME/CFS studies attribute illness onset to a viral infection3,4. Well after their initial acute infections, multi-system disturbances affect both Long COVID and ME/CFS patients5, resulting in similar lingering and debilitating symptoms; with most Long COVID patients meeting ME/CFS diagnostic criteria 6 months post their initial infection1,6. Extensive research likening Long COVID to ME/CFS indicates that a lot can be learnt from existing ME/CFS knowledge, without having to ‘reinvent the wheel’. Existing research also highlights the significant opportunity Long COVID presents to dramatically advance our knowledge of ME/CFS and provide real, tangible treatment options for both conditions7. Evidence While some Long COVID patients have persistent symptoms due to organ damage from the SARS-CoV-2 virus8, others have persistent symptoms with no obvious cause. The symptoms of the latter group of Long COVID patients appear remarkably similar to symptoms experienced by people living with ME/CFS1,6, as evidenced by recently published studies. A large 7-month international study with more than 3000 participants found that 89.1% of participants with Long COVID experienced post-exertional malaise (PEM), the hallmark symptom of ME/CFS, in addition to fatigue (80%), ‘brain fog’/cognitive dysfunction (85.1%) and difficulties sleeping (78.6%)1. The study of orthostatic symptoms in Long COVID patients showed no difference when compared to ME/CFS patients, with all Long COVID patients fulfilling ME/CFS criteria by the end of the research study6. Long COVID patients implementing exercise-based rehabilitation like ME/CFS9 suffered adverse symptoms, exacerbating their condition10. Some Long COVID patients have reported that even with minimal physical exertion, their symptoms significantly worsen, rendering them bedbound for several days11,12. Recognising symptom similarities between Long COVID and ME/CFS will have significant implications for the ongoing management of Long COVID patients. In addition to the overlap in symptom presentation, researchers have also found overlap in underlying biological abnormalities. Common to both ME/CFS and COVID are redox imbalance, systemic inflammation and neuroinflammation and an impaired ability to generate cellular energy5. References Davis, H. E. et al. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine 38, 101019. del Rio, C., Collins, L. F. & Malani, P. (2020). Long-term Health Consequences of COVID-19. JAMA - Journal of the American Medical Association vol. 324(17):1723-24. Evengård, B., Jonzon, E., Sandberg, A., Theorell, T. & Lindh, G. (2003). Differences between patients with chronic fatigue syndrome and with chronic fatigue at an infectious disease clinic in Stockholm, Sweden. Psychiatry and Clinical Neurosciences 57(4):361-8. Englebienne P, D. K. (Eds) C. P. (2002). Chronic Fatigue Syndrome: Advancing Research and Clinical Education. Pg. 202–203. https://www.cdc.gov/grand-rounds/pp/2016/20160216-presentation-chronic-fatigue-H.pdf (2016). Paul, B. D., Lemle, M. D., Komaroff, A. L. & Snyder, S. H. (2021). Redox imbalance links COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome. Proceedings of the National Academy of Sciences of the United States of America vol. 118(34):1-10. C. (Linda) M. C. van Campen, P. C. R. and F. C. V. (2022) Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Medicina 58:1–18. Melissa Davey. (2022). ‘Flying blind’: Australia faces 10,000 long Covid cases by the end of the year. The Guardian; https://www.theguardian.com/society/2022/jan/22/flying-blind-australia-faces-10000-long-covid-cases-by-the-end-of-the-year. Iacobucci, G. (2020). Long covid: Damage to multiple organs presents in young, low risk patients. BMJ doi:10.1136/bmj.m4470. Geraghty, K., Hann, M. & Kurtev, S. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology 24(10):1318-33. Décary, S. et al. (2021). Humility and Acceptance: Working within Our Limits with Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Journal of Orthopaedic and Sports Physical Therapy vol. 51(5):197-200. Peel, M. (2020). What can we tell patients with prolonged covid-19. The BMJ vol. 370. Salisbury, H. Helen Salisbury. (2020). When will we be well again? The BMJ vol. 369. Komaroff, A. L. & Lipkin, W. I. (2021). Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends in Molecular Medicine vol. 27(9):895-906.