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Making Invisible Illnesses Visible: Recognizing and Responding to Infection-Associated Chronic Conditions
John K Iskander1,2, Stephanie Haridopolos1
1Office of the US Surgeon General, Washington, DC, USA.
Post-COVID conditions (PCC) highlight infection-associated chronic conditions and illnesses (IACCI), like ME/CFS and Lyme disease. A patient-centered approach with better research and care is crucial for these misunderstood illnesses.
Area of Science:
- Infectious Diseases
- Immunology
- Public Health
Background:
- Post-COVID conditions (PCC) have increased focus on infection-associated chronic conditions and illnesses (IACCI).
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Lyme disease-associated chronic symptoms are examples of debilitating IACCI.
- These conditions share similar symptoms and underlying pathophysiologic abnormalities, yet receive inadequate clinical attention and research funding.
Purpose of the Study:
- To outline a patient-centered approach for managing IACCI.
- To identify opportunities for improving clinical practice and research investment in IACCI.
- To leverage advances in PCC and ME/CFS research for developing targeted therapies.
Main Methods:
- Review of existing literature on PCC, ME/CFS, and Lyme disease.
- Analysis of current clinical care models and research funding for IACCI.
- Proposal of a patient-centered care framework emphasizing validation, multidisciplinary management, and symptom-focused treatment.
Main Results:
- A patient-centered approach can improve care through validation, multidisciplinary management, and symptom-focused treatment.
- Opportunities for strengthening clinical practice include new CMS codes, extended visits, and improved care environments.
- Advances in PCC and ME/CFS research offer a basis for exploring shared mechanisms and developing therapies.
Conclusions:
- Coordinated action among clinicians, researchers, and policymakers is essential to address gaps in IACCI care.
- Improved surveillance, harmonized research, and inclusive trial designs are needed to understand disease burden and accelerate therapeutic progress.
- Implementing a patient-centered approach and investing in research can significantly improve outcomes for individuals with IACCI.
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