Long COVID Resources for Providers

The most comprehensive resource for the diagnosis and treatment of Long COVID is the Infection-Associated Chronic Illness Provider Manual published by the Cohn Center for Recovery From Complex Chronic Illness (CoRE).  Clinically, Long COVID is usually indistinguishable from ME/CFS.  The latest research indicates that 42%-60% of Long COVID Patients have ME/CFS.  The CoRE manual identifies ten mechanisms of disease associated with Long COVID.  These are:

1. Pathogen persistence in tissue or host cells
2. Pathogen reactivation under conditions of immune dysregulation
3. Autonomic Dysfunction
4. Coagulation and vascular dysfunction
5. Microbiome imbalance
6. Neuroinflamation and cognitive dysfunction
7. Mitochondrial dysfuntion
8. Immune dysfunction and autoimmunity
9. Joint hypermobility
10. Mast cell activation

ME/CFS, Persistent or Chronic Lyme disease, and other complex chronic illnesses all share these mechanisms of disease.

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? (PDF)
• Updated Coding for ME/CFS following Long COVID (PDF)

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 (PDF)
• US ME/CFS Clinician Coalition Treatment Recommendations (PDF)
• Helping Patients Access Disability and Accommodations (US ME/CFS Clinician Coalition; scroll to the bottom of the page)

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 (PDF) (US ME/CFS Clinician Coalition Consensus Statement, April 2023)

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

• “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases” (PDF) (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” (PDF)  (about brain fog; September 2022)
• “Fatigue Can Shatter a Person” (PDF) (July 2023) Everyday tiredness is nothing like the depleted symptom that people with long COVID and ME/CFS experience.