ME/CFS information Long COVID What is Long COVID? Most people who get sick with COVID-19 recover within two to six weeks,1 but some have ongoing symptoms for weeks or months, known as post- or Long COVID. It is estimated that up to one third of people who get sick with COVID-19 will have Long COVID,2 though this rate may be higher in those who were hospitalised.3,4 Long COVID affects each patient differently. Some have ongoing symptoms from organ damage, others will meet the diagnostic criteria for ME/CFS or a related condition. While scientists have only been aware of Long COVID for a short time, they have already identified biological abnormalities within Long COVID patients, confirming that this is a biological, not psychological, condition. There is considerable overlap between ME/CFS and Long COVID. This is unsurprising given many ME/CFS patients develop the condition after a viral infection. Dr Anthony Fauci, director of the US National Institute of Allergy and Infectious Diseases, said “It’s extraordinary how many people have a post-viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome. They just don’t get back to normal energy or a normal feeling of good health.” Diagnosis There is currently no diagnostic test for Long COVID, nor an agreed set of diagnostic criteria. The World Health Organization’s definition5 of Long COVID is ongoing symptoms three months after the initial COVID-19 illness, which persist for more than two months, and which can’t be explained by an alternative diagnosis. Symptoms Long-COVID affects many different organs in the body, resulting in a wide range of different symptoms. Symptoms vary considerably between patients. Some of the most common symptoms include:6,7 breathlessness fatigue post-exertional malaise (PEM): symptoms get worse after physical or mental activity cognitive difficulties, such as confusion, or problems with concentration or memory sleep difficulties muscle pain Treatment There is no evidence-based treatment for Long COVID, nor is there a cure. However, Long COVID patients who are experiencing symptoms of ME/CFS would benefit from pacing and rest to minimise PEM. Working with your GP to implement stepwise symptom management, which aims to provide symptom relief for your worst symptoms first, is recommended. Patients may find they benefit from psychological support, to help them cope with living with a debilitating chronic illness and uncertain recovery. Psychological treatment is not a cure for this condition. Recovery At this stage, not enough is known about recovery from long-COVID. Some people recover. Others have persistent symptoms a year, or longer, after their initial illness. How to get help People impacted by Long COVID can access Emerge Australia's existing support services including the Patient Support and Information Services and Telehealth Nurse Service. References 1 World Health Organisation (WHO) (2021) A clinical case definition of post COVID-19condition by a Delphi consensus, October 20212 Centres for Disease Control and Prevention (2021), Post-COVID Conditions: Information for Healthcare Providers, October 2021 3 Davis, HE, Assaf, GS, McCorkell, L, Wei, H, Low, RJ, Re’em, Y, Redfield, S, Austin, JP & Akrami, A (2021), 'Characterizing long COVID in an international cohort: 7 months ofsymptoms and their impact', EClinicalMedicine, vol. 38. https://doi.org/10.1016/j.eclinm.2021.101019.4 World Health Organisation (WHO) (2021) Update on clinical long-term effects of COVID-19, WHO, October 2021 5 Royal Australian College of General Practitioners (2020) Caring for adult patients with post-COVID-19 conditions, October 20216 Morin, L, Savale, L, Pham, T, Colle, R, Figueiredo, S, Harrois, A, Gasnier, M, Lecoq, A-L, Meyrignac, O, Noel, N, Baudry, E, Bellin, M-F, Beurnier, A, Choucha, W, Corruble, E, Dortet, L, Hardy-Leger, I, Radiguer, F, Sportouch, S, Verny, C, Wyplosz, B, Zaidan, M, Becquemont, L, Montani, D & Monnet, X (2021), ‘Four-Month Clinical Status of a Cohort of Patients After Hospitalization for COVID-19’, JAMA, vol. 325, no. 15, pp. 1525–1534. https://doi.org/10.1001/jama.2021.3331.7 Medical Letter on the CDC & FDA 2021, ‘Population-based estimates of post-acute sequelae of SARS-CoV-2 infection (PASC) prevalence and characteristics: A cross-sectional study’, 28 March, p. 279, October 2021, https://doi.org/10.1101/2021.03.08.21252905.