Long COVID and ME/CFS
Those who have lingering symptoms after being infected by COVID-19 are referred to as having Long COVID. Some people with Long COVID will develop ME/CFS.
Somewhere in the neighbourhood of 10 to 30% of acute COVID infections will go on to develop Long COVID.
Dr David Putrino, Associate Professor of Rehabilitation and Human Performance, Mount Sinai Health System. ABC Radio, Life Matters, 16 March 2022
...it’s extraordinary how many people [following COVID infection] have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.
Dr Anthony Fauci, Chief Medical Advisor to the President, US, interview with Medscape p3, 27 July 2020
Based on previous viral outbreaks, it is estimated that 10% of people who have been infected with COVID will develop ME/CFS similar to what has been observed in the SARS-CoV-1, MERS and Ebola pandemics.
Long COVID can affect anyone: all ages, including children, and it is also not related to disease severity. We now know that long COVID can also present in those that showed no symptoms at all, i.e. asymptomatic people, and that most long COVID sufferers were never hospitalised.
Dr Anna Brooks, cellular immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland. SMC, NZ
Amongst people with Long COVID, a diverse array of symptoms and organ damage have been identified.
One frequently reported symptom in Long COVID is post-viral fatigue (PVF), a common and usually self-limiting symptom following any acute viral infection. When PVF is accompanied by a symptom complex, in addition to the fatigue, this becomes post-viral fatigue syndrome (PVFS).
If PVFS persists and becomes debilitating, then an ME/CFS diagnosis should be considered. In particular, the presence of post-exertional malaise (PEM) will indicate ME/CFS.
There is some anecdotal evidence that adequate rest and the use of pacing may reduce the likelihood of PVF becoming PVFS, or PVFS developing into ME/CFS. Additional tips on reducing the risk of developing Long COVID have been summarised by Gez Medinger, an investigative science journalist, who has Long COVID.
Symptom check lists
The WHO has devised a Case Report Form for doctors, which includes a checklist of symptoms that may appear following COVID infection. People with Long COVID may find the information on symptoms helpful.
A recent study, A Classification System for Post-Acute Sequelae of SARS CoV-2 Infection, identified people who meet the case definition for ME/CFS from within a Long COVID cohort. Notably, the more severe the individual's Long COVID symptoms are, the more likely they are to have symptoms that meet the CCC diagnostic criteria for ME/CFS.
Long COVID in the news
The scientific understanding of COVID-19 and its long term impact is changing constantly.
Articles on Long COVID, more formally known as Post-Acute Sequelae of SARS-CoV-2, or PASC, may be found by browsing through In the News, which is updated daily, or by using the Search function to access articles on COVID.
Large numbers of people have been infected with COVID. With the expectation that many people around the world will develop Long COVID, including ME/CFS, government agencies are committing resources to research and services.
I think the tools we've applied to study ME/CFS can now easily be applied to long COVID as well. And vice versa.
Dr Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke (NINDS) in Patient, 11 Dec 2021
Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS [post acute covid syndrome].
Dr Nina F Schor, Deputy Director of NINDS, US NIH, 5 February 2021
Long COVID services in Adelaide
Four clinics for people with long-term effects of the virus have opened across metropolitan Adelaide, at the RAH, QEH, Women's and Children's, and Flinders Medical Centre.
GPs can refer to these multidisciplinary clinics if patients are still facing significant symptoms 12 weeks after COVID infection.
For those who think they may meet the diagnostic criteria for ME/CFS, it may be appropriate to ask your health practitioners to assess symptoms against the criteria for ME/CFS.
Additional search term: Long haulers
Last edited: 30 June, 2022