Resources re ME/CFS for Long COVID clinics

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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:

1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. And either
   1. Cognitive impairment; or
   2. 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.

Diagnosis

IOM 2015 Diagnostic Criteria for ME/CFS (CDC)

US ME/CFS Clinician Coalition Diagnostic Guidelines

 

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

 

Clinical care

Clinical Care of Patients with ME/CFS (CDC)

US ME/CFS Clinicians Coalition Testing Recommendations

US ME/CFS Clinicians Coalition Treatment Recommendations

Mayo Clinic: ME/CFS Essentials Of Diagnosis and Management

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.

 

Pathophysiology

Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome (2019)

Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Dr. Anthony Komaroff, Dec 17, 2021. Grand Rounds presentation: 44 minute video. 

 

ME/CFS in Children

ME/CFS in Children (CDC)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (2017)

 

Centers

The Ronald G. Tompkins Harvard ME/CFS Collaboration at the Harvard Affiliated Hospitals

 

Long COVID - Lessons Learned from ME/CFS

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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