Long COVID
Long COVID & Post-Viral Syndromes Medical Education (ECHO)
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- Last Updated: 08 September 2023 08 September 2023
Long COVID & Post-Viral Syndromes Medical Education (ECHO)
Long COVID and ME/CFS
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- Last Updated: 05 November 2023 05 November 2023
Long COVID: Lessons Learned from ME/CFS
Resources re: ME/CFS for Long COVID clinics (for providers)
Long COVID and Social Security Disability (for patients)
Resources re: ME/CFS for Long COVID Clinics (for providers)
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- 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.
ME/CFS and Post-Exertional Malaise among Patients with Long COVID (March 2023)
Diagnosing ME/CFS in People with Long COVID (US ME/CFS Clinician Coalition Consensus Statement, April 2023)
ICD Coding
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.
Coding Poster: Does Your Long COVID Patient have ME/CFS?
Updated Coding for ME/CFS and ME/CFS following Long COVID
Guidance for Clinical Care
Clinical Care of Patients with ME/CFS (CDC)
ME/CFS Essentials Of Diagnosis and Management (Mayo Clinic Proceedings, November 2021)
US ME/CFS Clinician Coalition Testing Recommendations
US ME/CFS Clinician Coalition Treatment Recommendations
Helping Patients Access Disability and Accommodations (US ME/CFS clinician Coalition; scroll to the bottom of the page)
AAPM&R consensus guidance statements
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
ME/CFS in Children (CDC)
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.
More Articles ...
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.