- Last Updated: 05 November 2023 05 November 2023
Why it is important for Long COVID providers to learn about ME/CFS
A significant sub-set (50% or more) of Long COVID patients have symptoms that are consistent with a diagnosis of ME/CFS:
- Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
- Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
- Unrefreshing sleep;
- And either
- Cognitive impairment; or
- Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).
Other common manifestations of ME/CFS include pain, failure to recover from a prior infection, and abnormal immune function.
These symptoms may occur alone or along with other manifestations common to Long COVID.
Patients who have symptoms consistent with ME/CFS should be treated as ME/CFS patients, which includes guidance on energy management (e.g. pacing) and only a slow and carefully monitored re-introduction of exercise and resumption of normal activities. Additionally, the ICD-10 code for ME/CFS (G93.32) should be added to the clinical record.
Diagnosing ME/CFS in People with Long COVID (US ME/CFS Clinician Coalition Consensus Statement, April 2023)
Effective October 1, 2022, updates to the US ICD-10-CM will enable tracking of people with ME/CFS, including those who develop the disease following COVID. These updates are specific to the ICD-10-CM, the US version of the International Classification of Diseases.
Guidance for Clinical Care
ME/CFS Essentials Of Diagnosis and Management (Mayo Clinic Proceedings, November 2021)
AAPM&R consensus guidance statements
Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of breathing discomfort and respiratory sequelae in patients with post-acute sequelae of SARS-CoV-2 infection (PASC)
Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Cardiovascular Complications in Patients with Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) The full text of this article is currently available as a PDF.
ME/CFS and Long COVID in Children
Long COVID in Children: What Do We Know? (November 2022)
From the Patient's Perspective
Writings by journalist Ed Yong, published in The Atlantic
“Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases” (September 2022)
Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.
“One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood” (about brain fog; September 2022)
"Fatigue Can Shatter a Person" (July 2023)
Everyday tiredness is nothing like the depleted symptom that people with long COVID and ME/CFS experience.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.