Infection-Associated Chronic Illnesses:
Data-Driven solutions for diagnosis, treatment, and care
With more people becoming
aware of Long COVID, there is an increasing recognition of chronic illnesses associated
with prior infectious disease. This category includes illnesses such as myalgic
encephalomyelitis and chronic fatigue syndrome (ME/CFS), Long COVID, persistent
Lyme disease, and multiple sclerosis occurring with Epstein-Barr virus (EBV).
The links between infection and lasting symptoms are poorly understood yet serious,
potentially triggering long-term problems in many body systems. Patients
experiencing these illnesses sometimes face barriers in seeking diagnoses,
treatment, and care.
How can we address infection-associated chronic illnesses—such as ME/CFS, Long COVID, Lyme disease, and multiple sclerosis—to improve
health equity for all, using emerging technologies that couple
the power of the crowd and patient insights with data?
An
upcoming workshop will explore this topic with HHS: Toward
a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop
to Examine Common, Overlapping Clinical and Biological Factors. This
workshop to be held on June 29 – 30, 2023, at the National Academies of
Science, Engineering, and Medicine in Washington, D.C. The workshop is free. It
is open to the public.
Prior to
the June 2023 workshop, HHS aims to spotlight this issue with the Health Equity
DataJam. This is a call-to-action for solutions using government data to advance
understanding and build digital tools with, by, and for the people living with
infection-associated chronic illnesses.
Potential ideas for exploration
This
challenge is intentionally broad. For example, potential products might focus
on three areas.
- Patient Outcomes: Improve the experience and outcomes of those seeking health care.
- Access to Care: Ensure equitable treatment, diagnosis, and care for people experiencing infection-associated chronic illnesses.
- Overlapping Factors: Find common clinical and biological factors within infection-associated chronic illnesses
Curated datasets and resources
Government links and information to help get started:
- CDC Long COVID
Household Pulse Survey
- CDC Long
COIVD and Post COVID Conditions
- CDC Lyme Data and
Surveillance
- CDC Lyme
Surveillance
- CDC ME/CFS
- NIH Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Overview
- NIH Multiple
Sclerosis
- NIH The Multiple Sclerosis
Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from
Real-World Multiple Sclerosis Data Sources
