A Deep Dive into Long COVID: Is it Similar to ME/CFS?

Nov 24, 2022
A Deep Dive into Long COVID

This blog post is associated with a free assessment designed to help you figure out the probability you have Long COVID.

To get the most out of this blog post, please do the assessment before reading further.

Now that you have completed the assessment and have your Long COVID Score, this blog will provide additional information to help you understand:

  • What are the most common symptoms in Long COVID?
  • How many of these symptoms are also typical of ME/CFS?
  • What’s going on in the body that may be causing these symptoms?

Note that most people with Long COVID have many symptoms (on average 55 symptoms overall) in addition to those mentioned in this assessment. The 13 symptoms in the assessment are among the most common symptoms from each body system reported by 3762 people with Long COVID in 56 countries. The data was gathered by a combined patient-led research team from Body Politic in collaboration with academic researchers (Davis et al., 2021). The most prominent symptoms change over time and vary among different reports. As new information emerges, these numbers may need to be revised.


The Most Common Symptoms in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

You will see from the table above that there are similarities in the symptoms of Long COVID and ME/CFS. However, the two conditions are not identical and not everyone with Long COVID meets the criteria for ME/CFS. Estimates of people with Long COVID meeting criteria for ME/CFS range from 15% - 50%. Clearly, we need more research to get a clear picture.


Why do Long COVID and ME/CFS have similar symptoms?

There is growing research showing that the underlying biology of Long COVID and ME/CFS has similarities. This is a summary of some intriguing findings.


Immune activation (inflammation) is commonly reported in both ME/CFS and Long COVID. The research suggests that immune activation lasting beyond the period of active infection plays a role in both conditions (Sukocheva et al., 2022). Inflammation is associated with many of the common symptoms. Neuroinflammation may be associated with sensitivities, vibration, brain fog, and dizziness.


Impaired mitochondrial function associated with decreased energy production is a frequent research finding in ME/CFS. In Long COVID there is indirect evidence of impaired mitochondrial function through altered balance of oxidation and reduction and low levels of antioxidants (Komaroff & Lipkin, 2021). Decreased energy production may contribute to fatigue and PEM.


Microclots – Research in both ME/CFS and Long COVID suggests small blood clots exist and could be related to symptoms such as cold limbs and organ dysfunction (Kell, Laubscher, & Pretorius, 2022; Nunes, Kruger, Proal, Kell, & Pretorius, 2022).


Changes in brain function – In Long COVID, PET scan studies show evidence of a disrupted blood-brain barrier, neuroinflammation, and decreased brain metabolism. In ME/CFS there is extensive evidence of decreased blood flow to the brain and changes in brainstem connectivity. It will require studying both groups together with the same tests to see if the changes to brain function in ME/CFS and Long COVID are the same or different (Sukocheva et al., 2022). Changes in brain blood flow may explain the brain fog, vibration, sensitivities, altered sensation, and dizziness.


Changes in the microbiome (bacteria in the large bowel) have been reported in both Long COVID and ME/CFS. The organisms that live in and on us produce molecules which travel throughout the body and cause almost any symptom (Komaroff & Lipkin, 2021).


Changes to blood flow to and from the heart –Dr. David Systrom from Harvard University reports insufficient blood return to the heart (preload failure) on invasive cardiopulmonary exercise testing in both ME/CFS and Long COVID (Joseph et al., 2022; Novak et al., 2022). This may be associated with fatigue, PEM, rapid and irregular heartbeat, shortness of breath, and brain fog.


If you have some of these symptoms, what can you do next?

If you have five or more of the symptoms of Long COVID, your life is likely to be limited and you may be searching for trustworthy strategies to help you improve.

I can help you on the path to recovery. Based on over 30 years of personal and professional experience with ME/CFS, I teach people with chronic, complex diseases how to identify and manage symptoms to improve health and get back to the life you love. Improvement is the rule, not the exception. Here are a few comments by recent students.



 "It was extremely valuable to be seen and heard by Dr. Stein through her recognition, validation, extensive knowledge and own lived experience of complex chronic illness. I learned a lot about managing my illness physically, mentally and emotionally and really enjoyed sharing the experience with so many other patients who were going through the same thing as me. I would recommend the course to anyone living with Long Covid and/or ME/CF."

  I am so impressed with your breadth of knowledge and how you can present a very complicated topic in such an easy to understand way.

  This course provided me with so much important information, that will definitely assist me in my journey to better health. The information was shared in a very clear, precise fashion and questions were encouraged, if clarification was needed!


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References for diagnostic criteria of Long COVID and ME/CFS

Canadian Consensus Criteria - Carruthers, B. M., Jain, A. K., De Meirleir, K., Peterson, D. L., Klimas, N., Lerner, A. M., et al. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical working case definition diagnostic and treatment protocols - A consensus document. Journal of Chronic Fatigue Syndrome, 11(1), 7-116.

Symptoms of Long COVID -  Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re'em, Y., et al. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. eClinicalMedicine, 38.

National Academy of Medicine Criteria - Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness: The National Academies Press.

Pediatric Criteria for ME/CFS - Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Schwartz, M. S., et al. (2017). Myalgic encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Frontiers in Pediatrics, 5.


References on the biology of Long COVID and ME/CFS

Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re'em, Y., et al. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. eClinicalMedicine, 38.

Joseph, P., Pari, R., Miller, S., Warren, A., Stovall, M. C., Squires, J., et al. (2022). Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine. Chest, 06, 06.

Kell, D. B., Laubscher, G. J., & Pretorius, E. (2022). A central role for amyloid fibrin microclots in long COVID/PASC: origins and therapeutic implications. Biochem J, 479(4), 537-559.

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, 27(9), 895-906.

Novak, P., Giannetti, M. P., Weller, E., Hamilton, M. J., Mukerji, S. S., Alabsi, H. S., et al. (2022). Network autonomic analysis of post-acute sequelae of COVID-19 and postural tachycardia syndrome. Neurol Sci, 1-12.

Nunes, J. M., Kruger, A., Proal, A., Kell, D. B., & Pretorius, E. (2022). The Occurrence of Hyperactivated Platelets and Fibrinaloid Microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Pharmaceuticals, 15(8), 931.

Sukocheva, O. A., Maksoud, R., Beeraka, N. M., Madhunapantula, S. V., Sinelnikov, M., Nikolenko, V. N., et al. (2022). Analysis of post COVID-19 condition and its overlap with myalgic encephalomyelitis/chronic fatigue syndrome. Journal of Advanced Research, 40, 179-196.