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 [1]. 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 infection^3,4. 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 infection^1,6. 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/CFS^1,6, 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/CFS⁹suffered 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 days^11,12. 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.

Latest

Research Digest 30/3/23

Welcome to the Research Digest’s 93rd edition. This month's edition summarises research that investigates factors that influence the prognosis of ME/CFS and demonstrates that high muscle sodium content, maybe a contributing factor to the pathophysiology of ME/CFS. A review is also highlighted that conveys what is presently known about Long COVID and finally, a local study sheds light on brain structure changes that are common to Long COVID and ME/CFS.
Run Melbourne 2023

We're participating in Run Melbourne 2023. Join now to help reach our goal by running, walking or performing your own activity with us!
GP Education at GPCE in 2023

We know how difficult it is to find a GP with knowledge of ME/CFS. One of the main aims for our GP education program is to grow the GP workforce confident to take on people with complex presentations.
Emerge Australia welcomes Tracey Spicer as an Ambassador

We are thrilled to announce that Tracey Spicer, AM BBus(Comm) GAICD, has joined Emerge Australia in an ongoing ambassador role.https://www.emerge.org.au/GetImage.aspx?IDMF=1bd7f269-50e9-45e2-80dd-98297ba7ec05&w=427&h=640&src=mc

Pacing and Rest Position Statement

Pacing and rest are individualised and essential management techniques for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Pacing and rest promote safe levels of activity to manage post-exertional malaise (PEM), the hallmark symptom of ME/CFS.
Post-Infection disease: Australia’s 10th National Health Priority Area

Emerge Australia strongly advocates for the Federal Department of Health to make post-infection disease Australia’s 10th National Health Priority Area (NHPA). The number of Australians living with post-infection disease is rapidly increasing due to a new cohort of post-infection disease patients: those with Long COVID.
National Disability Insurance Scheme Position Statement

ME/CFS is a permanent condition for most people. Less than 10% recover to pre-illness functioning and 20% of patients may worsen with time.[1] Despite this, many people with ME/CFS experience significant difficulties accessing the National Disability Insurance Scheme (NDIS).
Optimal Care Referral Pathway Position Statement

A national, Optimal Care Referral Pathway (OCRP) will provide all people with ME/CFS consistent care across Australia, using an evidence-based, best practice pathway that empowers patients and clinicians to navigate support of complex, multi-system conditions such as ME/CFS, and other post infection diseases, such as Long COVID.
Recovery Position Statement

The research literature about recovery from ME/CFS is inconsistent, making firm conclusions about recovery rates difficult. In particular, most studies of recovery don’t include a return to pre-illness function as part of their definition of “recovery” and would be more accurately considered studies on rates of improvement than recovery1.
Diagnostic Criteria Position Statement

There are approximately 20 different sets of diagnostic criteria for ME/CFS which have been developed over the history of the disease. This has created inconsistency in research, as different diagnostic criteria result in participant samples which are not easily compared between studies.
Clinical Guidelines Position Statement

It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure that Australian ME/CFS patients have access to the best possible care, based on current understanding of the condition and latest evidence.
Telehealth Position Statement

Emerge Australia welcomes the Federal Government’s announcement that Medicare rebates will be made permanent for online and over-the-phone telehealth services provided by GPs, specialists and allied health practitioners.
What's in a name?

Emerge Australia uses ME/CFS as an umbrella term. Research has not confirmed whether the illness is one condition, two conditions (ME and CFS), several different conditions or a condition with several subgroups. ME/CFS includes all diagnoses of myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and ME/CFS.