Associated conditions are common in ME/CFS and long COVID, and it is important to check for them as part of your care. Many of these conditions are often treated with exercise, but if you experience post-exertional malaise (PEM), exercise may worsen symptoms. Instead, these conditions should be treated carefully while you also learn to pace and manage your energy.
Common associated conditions include:
- Fibromyalgia: affects about 30–45% of people and causes widespread pain[1,2].
- Orthostatic intolerance (OI): affects about 95% of people with ME/CFS and 66% of people with long COVID[3].
- Connective tissue disorders (such as hEDS and HSD): affect an estimated 30–75% of people with ME/CFS and long COVID[4].
- Mast cell activation (MCA): may play a role in symptoms such as gut issues; up to 25% may meet criteria for clinically relevant MCA[5].
Identifying and treating these conditions can reduce symptoms and improve daily functioning.
Fibromyalgia
There is agreement within the medical community that fibromyalgia and ME/CFS are similar conditions, and may be related. However, the major difference between the two conditions is the predominant symptom.
Orthostatic intolerance (OI)
There are a number of different forms of orthostatic intolerance, these are
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Orthostatic hypotension (OH)
- Neurally mediated hypotension (NHH)
Mast cell activation syndrome (MCAS)
Mast cell activation syndrome (MCAS) is often linked with hypermobile Ehlers–Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS) and ME/CFS. It may also be involved in the symptoms of acute and long COVID.
Ehlers-Danlos syndrome (EDS)
Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that involve connective tissue. It is inherited and can affect any part of the body.
Reference
- Jason, L. A.,McManimen, S.,Sunnquist, M., Newton, J. L., & Strand, E. B. Examining those Meeting IOM Criteria Versus IOM Plus Fibromyalgia. Neurology (ECronicon) 5, (2017).
- Dr. Nelson. Understanding the Neuroscience of Pain.https://batemanhornecenter.org/understanding-neuroscience-pain-dr-nelson-april-2019/https://batemanhornecenter.org/understanding-neuroscience-pain-dr-nelson-april-2019/ (2019).
- Wirth, K. J., Scheibenbogen, C. & Paul, F. An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Translational Medicine vol. 19 Preprint at https://doi.org/10.1186/s12967-021-03143-3 (2021).
- Yellman, B. Mast Cell Activation Syndrome.https://youtu.be/LW20F3-NjSk?si=re3fdm1XLklbJjLf (2022).
- Rohrhofer, J., Ebner, L., Schweighardt, J., Stingl, M., & Untersmayr, E. (n.d.). The clinical relevance of mast cell activation in myalgic encephalomyelitis/chronic fatigue syndrome. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12651186/