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:

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. 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

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 and Long COVID in Children

ME/CFS in Children (CDC)

Long COVID in Children: What Do We Know? (November 2022)

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

 

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.