Long COVID Resource Repository
The Long COVID Repository is intended to serve as a reference for primary care clinicians who face uncertainty and lack of evidence-based information to recognize, diagnose, and treat Long COVID. As the first point of contact for most patients, primary care clinicians can play a pivotal role in identifying this disease state. While the Repository provides links to more detailed information and source documents, it is not an exhaustive list of Long COVID resources and may need to be updated as additional resources and tools are developed and published. The Repository includes resources as of May 2025.
The Repository has also been developed with the recognition that treating patients with Long COVID and other infection-associated chronic conditions and illnesses will almost certainly require providers to employ a skillset that goes beyond the norms of most day-to-day practices. The lack of established biomarkers and diagnostic tests places a premium on understanding a patient’s lived experience and engaging patients as partners in navigating their treatment journey. This Repository is intended to help foster that relationship and provide guideposts for that journey.
Program Background
The development of this Resource Repository on Long COVID Education, Engagement, and Care Management Program has been a federally-funded project, supported by Cooperative Agreement Number CDC-RFA-IP-2111.
The Council of Medical Specialty Societies (CMSS) has sought to provide multidisciplinary coordination and collaboration across medical societies to improve provider education and engagement in the care of patients with Long COVID. Toward that end, CMSS has engaged primary care and specialty societies, advanced practice practitioners, patients, and other stakeholders in a series of coordinated activities that focused on improving education and engagement in the care of people with Long COVID.
Expert Panel and Patient Experts
To initiate this effort, CMSS issued a national call for clinical experts to serve on a multidisciplinary Long COVID Expert Panel with expertise in neuropsychology, rehabilitation medicine, medical education, policy, epidemiology, and primary care, including pediatrics, family medicine, and internal medicine. CMSS also established a patient experts group, comprised of patients with Long COVID who also brought expertise in research, advocacy, communications, law, caregiving, nursing, and medical anthropology.
Learn more about the Long COVID Advisory Groups.
Resource Repository Methodology
Both groups were invited to submit resources for primary care clinicians related to Long COVID diagnosis and treatment for inclusion in a Long COVID Repository. Each resource was tagged by symptom, intended audience, and other relevant categories. An Education Workgroup within the Expert Panel systematically reviewed over 150 submitted resources. Each was evaluated on symptoms or disease states addressed, target populations (pediatric, adult, geriatric), intended audience (primary care, specialty care, patient-directed), and quality of evidence (low, medium, high), along with a brief content summary and recommendations for incorporation. Criteria for final selection included being comprehensive, evidence-based, clinician-focused, and adaptable for primary care and a variety of clinical contexts.
Primary Resource:
AAPM&R Long COVID Compendium Report
Patient Population:
- Pediatric
- Adult
- Geriatric
Brief Description: The American Academy of Physical Medicine and Rehabilitation (AAPM&R) launched a multi-disciplinary collaborative of experts to address Long COVID, its diagnosis, treatment, and long-term follow up. The collaborative developed a compendium to help clinicians evaluate and manage adults experiencing Long COVID symptoms and provides symptom-specific considerations.
Key Symptom Domains:
Resources are organized by seven key symptom domains identified in the AAPM&R Long COVID Compendium report. For each symptom domain, workgroup members identified approximately five comprehensive resources.
- Autoimmune Dysfunction
- Autonomic Dysfunction
- Breathing/Respiratory
- Cardiovascular
- Cognitive
- Fatigue
- Mental Health
- Neurologic
Resources by Key Symptom Domain:
Autoimmune Dysfunction:
Post-COVID Conditions
Patient Population:
- Adult
Brief Description: Comprehensive clinician guide on management of multiple long COVID symptoms – referenced well, but also provides clear, practical guidelines that clinicians will easily be able to follow.
Long COVID: Emerging Pathophysiological Mechanisms
Patient Population:
- Pediatric
- Adult
- Geriatric
Brief Description: This is a 10-page article linking 5 possible mechanisms of disease to the symptoms that Long COVID patients experience along with potential treatments. It provides a quick summary of the pathophysiological research to date for primary and specialty clinicians.
Autonomic Dysfunction:
AAPM&R Multidisciplinary Quality Improvement Initiative
Patient Population:
- Pediatric
- Adult
- Geriatric
Brief Description: Central repository for resources created by AAPMR including clinician note templates (submitted as a separate resource per spreadsheet), there is also MH guidance statement, neuro symptoms, pediatrics guidance, autonomic dysfunction guidance, CV complications guidance, fatigue guidance, breathing discomfort and cognitive symptoms.
Community Developed Resource Guide for Infection-Associated Chronic Conditions
Patient Population:
- Pediatric
- Adult
Brief Description: Resource for infection associated conditions geared mostly towards patients, nice compilation / summary of how to approach the resources, how to advocate etc.
Job Accommodation Network (JAN) – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Definition, Disabilities, Accommodations
Patient Population:
- Adult
Brief Description: Resource for infection associated conditions geared mostly towards patients, nice compilation / summary of how to approach the resources, how to advocate etc.
Whole Health System Approach to Long COVID: Patient-Aligned Care Team (PACT) Guide (VA)
Patient Population:
- Adult
Brief Description: This is the VA’s Practical, Whole System guide to addressing long COVID among Veteran’s. It is well done, organized, and easily digestible information geared to VA health care providers. This is a good resource document, and the presentation of information in the document is very accessible to a busy provider.
Breathing:
2024 NASEM Long COVID Definition and Report
Patient Population:
- Pediatric
- Adult
Brief Description: The 2024 NASEM Long COVID Definition was created to aid clinicians in the consistent diagnosis, documentation, and treatment of Long COVID; encourage further research into the pathophysiology, diagnosis, prognosis, consequences, and treatment of Long COVID; enhance patient access to appropriate care, treatment, services, and benefits; and harmonize research and surveillance efforts on Long COVID, while providing researchers flexibility in the design of studies on Long COVID; and raise awareness and educate the public about Long COVID. Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.
Whole Health System Approach to Long COVID: Patient-Aligned Care Team (PACT) Guide (VA)
Patient Population:
- Adult
Brief Description: This is the VA’s Practical, Whole System guide to addressing long COVID among Veteran’s. It is well done, organized, and easily digestible information geared to VA health care providers. This is a good resource document, and the presentation of information in the document is very accessible to a busy provider.
Post-COVID Conditions
Patient Population:
- Adult
Brief Description: This is an 8-page article directed at primary care clinicians which gives an overview of how to diagnose, evaluate, and treat patients with Long COVID. Since it is written in 2023, the article describes but does not promote one specific diagnostic criteria.
Cardiovascular:
2024 NASEM Long COVID Definition and Report
Patient Population:
- Pediatric
- Adult
Brief Description: The 2024 NASEM Long COVID Definition was created to aid clinicians in the consistent diagnosis, documentation, and treatment of Long COVID; encourage further research into the pathophysiology, diagnosis, prognosis, consequences, and treatment of Long COVID; enhance patient access to appropriate care, treatment, services, and benefits; and harmonize research and surveillance efforts on Long COVID, while providing researchers flexibility in the design of studies on Long COVID; and raise awareness and educate the public about Long COVID. Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.
Clinician’s Pacing and Management Guide for ME/CFS and Long COVID
Patient Population:
- Adult
Brief Description: PEM is carefully described and approaches to limiting PEM through pacing are provided for adults, children and healthcare providers. Three different formats for each audience.
“Could my Patient Have Long COVID?”
Patient Population:
- Adult
Brief Description: Educational slides from Mayo doctors and Long COVID Guiding Council. This is an invaluable set of slides that showcases how doctors can perform an initial evaluation of Long COVID, which could be translated into a Promis format at intake.
Long Covid Families Website
Patient Population:
- Pediatric
Brief Description: Long Covid Families empowers children and families affected by infection-associated conditions. Accelerates pediatric research and ensure safe and appropriate access to education and essential medical care.
Cognitive:
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)
Patient Population:
- Adult
Brief Description: Comprehensive resource on Long COVID and cognitive symptoms.
Whole System Approach to Long COVID: Specialty Care Clinic Visit Guide: Nervous System
Patient Population:
- Adult
Brief Description: Outstanding and comprehensive clinician guide on management of multiple long COVID symptoms – referenced well, but also provides clear, practical guidelines that clinicians will easily be able to follow.
Whole Health System Approach to Long COVID: Patient-Aligned Care Team (PACT) Guide (VA)
Patient Population:
- Adult
This is a one-pager from the VA’s Practical, Whole System guide to addressing long COVID among Veteran’s. It is well done, organized, and easily digestible information geared to VA health care providers. This is a good resource document, and the presentation of information in the document is very accessible to a busy provider.
CLINICAL CARE GUIDE: Managing ME/CFS, Long COVID & IACCs
Patient Population:
- Adult
- Geriatric
Brief Description: This resource is developed by a well-known medical nonprofit focused on ME/CFS and long COVID. The discussion on cognitive impairment in the Bateman Horne guide is very solid and starts on page 20.
Long COVID Compendium: PASC cognitive symptom assessment recommendations
Patient Population:
- Adult
- Geriatric
Brief Description: PASC cognitive symptom assessment recommendations
Fatigue:
Female Reproductive Health Impacts of Long COVID And Associated Illnesses Including ME/CFS, POTS, And Connective Tissue Disorders: A Literature Review
Patient Population:
- Adult
Brief Description: This is a review of the literature on the impact of Long COVID on premenopausal women, with focus on the impact on women’s menstrual cycles, reproductive health, and symptoms of Long COVID such as fatigue, ME/CFS, and POTS.
Long COVID: Emerging Pathophysiological Mechanisms
Patient Population:
- Adult
- Geriatric
Brief Description: Review article summarizing different pathophysiological mechanisms of LC and potential treatments based on the pathophysiology.
CLINICAL CARE GUIDE: Managing ME/CFS, Long COVID & IACCs
Patient Population:
- Adult
- Geriatric
Brief Description: This resource is the general website of the well-known medical nonprofit focused on ME/CFS and long COVID. The website includes many resources.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
Patient Population:
- Pediatric
Brief Description: Best single reference for pediatric ME/CFS. Illness is described, possible pathogenesis, approach to diagnosis and management, and differential diagnosis. Consensus opinion of experts in pediatric ME/CFS.
Mental Health:
Long COVID: Emerging Pathophysiological Mechanisms
Patient Population:
- Adult
- Geriatric
Brief Description: Review article summarizing different pathophysiological mechanisms of LC and potential treatments based on the pathophysiology.
Canadian Guidelines for Post COVID Condition
Patient Population:
- Pediatric
- Adult
Brief Description: Plain language CAN-PCC consensus recommendations regarding prevention and treatment of Long COVID, presented in various user-friendly formats. Recommendations are conservative.
VA Long COVID Nervous System Guide
Patient Population:
- Adult
- Geriatric
Brief Description: This online clinical guide provides a symptom-based comprehensive review of Long COVID neurological manifestations and provides evidence-based recommendations.
Patient-Aligned Care Team (PACT) Guide
Patient Population:
- Adult
Brief Description: One-sheet “just in time” guidelines for different Long COVID symptoms that would be useful in a clinical setting, especially for a clinician struggling with management of a specific Long COVID symptom.
Neurologic:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management
Patient Population:
- Adult
Brief Description: Best practices summary of ME/CFS Clinician coalition on diagnosis and management of ME/CFS. Includes differential diagnosis, emphasizes approach to eliciting history from patients, and importance of PEM. Overview of ME/CFS epidemiology and disease course.
Working with Long COVID
Patient Population:
- Adult
Brief Description: Practical description of accommodations to support workers (all ages) experiencing symptoms of long COVID. Concise and easily digestible for employees, employers/HR, primary care and specialty care providers, and service organizations supporting clients experiencing long COVID or similar conditions. Good introduction to issues that need to be considered.
Long COVID: Emerging Pathophysiological Mechanisms
Patient Population:
- Pediatric
- Adult
- Geriatric
Brief Description: This is a 10-page article linking 5 possible mechanisms of disease to the symptoms that Long COVID patients experience along with potential treatments. It provides a quick summary of the pathophysiological research to date for primary and specialty clinicians.
Whole System Approach to Long COVID: Specialty Care Clinic Visit Guide: Nervous System
Patient Population:
- Adult
Brief Description: Outstanding and comprehensive clinician guide on management of multiple long COVID symptoms – referenced well, but also provides clear, practical guidelines that clinicians will easily be able to follow.
Acknowledgement:
The Long COVID Education, Engagement, and Care Management program is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award to the Council of Medical Specialty Societies (CMSS). The contents are those of the authors and do not necessarily represent the official views of nor endorsement, by CDC/HHS or the U.S. Government.
