Long COVID and ME/CFS
- Last Updated: 31 October 2022 31 October 2022
Long COVID: Lessons Learned from ME/CFS
Resources re: ME/CFS for Long COVID clinics
Long COVID and Social Security Disability
Resources re ME/CFS for Long COVID clinics
- Last Updated: 25 June 2022 25 June 2022
A significant sub-set of Long COVIDpatients 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.
ICD-10-CM Coding for the diagnosis
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.
Updated Coding for ME/CFS and ME/CFS following Long COVID
Background information regarding this change
AAPM&R consensus guidance statements
Multidisciplinary collaborative consensus guidance statement on the assessment and treatment of fatigue in postacute sequelae of SARS-CoV-2 infection (PASC) patients
Multi-disciplinary collaborative consensus guidance statement on the assessment and treatment of cognitive symptoms in patients with post-acute sequelae of SARS-CoV-2 infection (PASC)
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 in Children
Long COVID - Lessons Learned from ME/CFS
- Last Updated: 09 June 2022 09 June 2022
What is Long COVID?
As of mid-February, 2022, over 78 million cases of COVID-19 have been reported in the U.S., with well over 900,000 deaths(1).
About 10 – 20% of people who have COVID-19, including people who have only mild symptoms, do not fully recover. Many of these people experience a variety of symptoms for many months. This is being called “Long COVID.”
Estimates from January, 2022, are that 20 million or more people in the U.S. have developed Long COVID. In Massachusetts 387,000 people may have Long COVID(2).
Long COVID is a “post-viral” illness.
Read more: Long COVID - Lessons Learned from ME/CFS
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.