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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
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1

Introduction
1

Infection-associated chronic illness is used in this workshop as an umbrella term for several diseases that share overlapping symptoms. Examples include long COVID (also referred to as postacute sequelae of COVID-19 or PASC), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent or posttreatment Lyme disease syndrome (PTLDS). and multiple sclerosis (MS).2

Many infection-associated chronic illnesses have been underresearched, underfunded, and met with skepticism. However, since 2020, the onset, scale, and timing of long COVID has brought these issues to the forefront and underscored an increasing recognition of chronic illnesses that appear to arise from infectious diseases, according to Tim Coetzee, National Multiple Sclerosis Society. This growing public health problem often includes a patient history of acute infection followed by long-lasting and often debilitating symptoms including severe fatigue, cognitive impairment, and multiorgan dysfunction. Lyle Petersen, director of the Division of Vector-Borne Diseases at the U.S. Centers for Disease Control and Prevention, noted

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1 The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

2 Throughout this workshop proceedings, speakers and workshop attendees use the term “chronic illness” as a general term that refers to the infection-associated chronic illnesses as explained in this paragraph.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
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that while elucidating the mechanisms underlying the development and persistence of these chronic illnesses remains an area of active research, the major proposed pathology mechanisms appear to be similar across chronic illnesses associated with different infectious etiologies (see Figure 1-1).

In addition to debilitating physical effect on patients, chronic illnesses present broader societal effects. For example, between 31 and 70 percent of COVID patients remain absent from work after the acute phase of the disease (Nittas et al., 2022), and it is estimated that long COVID may be responsible for 1.6 million fewer full-time workers in the U.S. labor market (Bach, 2022a). Annual economic burdens of other chronic conditions, such as post-treatment Lyme disease syndrome and ME/CFS are estimated to exceed $1 billion and $2 billion in the United States, respectively (Hook et al., 2022; Jason et al., 2008).

In addition to the commonality in chronic symptoms among long COVID, PTLDS, ME/CFS, MS, and other illnesses, there are also similarities in the leading hypotheses for their mechanism of disease—including pathogen or antigen persistence, immune response dysregulation, altered neurologic function, or altered microbiome composition and activity, among others. Given this potential overlap, researchers studying different infection-associated chronic illnesses face common challenges in identifying disease biomarkers and developing diagnostics and therapeutic options. Recognizing the commonalities across the symptoms and research challenges, several speakers including Harlan Krumholz (Yale School of Medicine) and David Putrino (Mount Sinai Health System) described the need for a holistic understanding of infection-associated chronic illnesses that includes moving beyond condition-specific silos to advance research

A figure depicts four different mechanisms for infection-associated chronic illnesses. A yellow silhouette of a person in a circle is situated at the top middle of the figure with four blue lines connecting it to four more images representing different mechanisms. From left to right, virus around a cell as “autoimmune response”, lungs as “persistent virus”, a kidney as “organ damage”, and clotting blood cells as “microclots”.
FIGURE 1-1 Potential mechanisms for infection-associated chronic illnesses.
SOURCE: Hilary Marston presentation, June 30, 2023 (GAO, 2022).
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
×

more comprehensively, translating to improved options for patients across multiple conditions.

To address these challenges and advance current knowledge, the Forum on Microbial Threats and the Forum on Neuroscience and Nervous System Disorders held a public workshop, Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors. The workshop sought to explore the current understanding of, and future research opportunities for, infection-associated chronic illnesses. Discussions were designed to consider the latest research and knowledge gaps in the following areas:

  • Overlapping clinical and biological factors underlying infection-associated chronic illnesses
  • Current practice and novel technologies to develop urgently needed diagnostic tests for different stages of illness and the potential underlying infectious agent
  • Identification of therapeutic targets and strategies to prevent or impede chronic illness progression
  • Coordination and collaboration among various stakeholders and practitioners that will increase research and enhance care across different patient populations

While some speakers and discussions presented in the workshop focused only on singular diseases, many aspects of the population profiles, symptomology, or biomarkers and therapeutic targets are likely salient across diseases and may apply to several different conditions. The scope of the workshop is defined in the Statement of Task (Appendix B), and the complete workshop agenda is included (Appendix C).

ORGANIZATION OF THE WORKSHOP

The workshop was held virtually and in person June 29–30, 2023, at the National Academies of Sciences, Engineering, and Medicine in Washington, DC. The first day focused on the mechanisms underlying infection-associated chronic illnesses. These sessions included various historical and stakeholder perspectives, discussions of host- and pathogen-mediated factors that influence development of conditions, and research priorities in diagnosis. Day two focused on clinical advancements and collaboration, featuring discussions on patient-driven research, innovation and infrastructure in research, and opportunities in therapeutics development. The workshop closed with final remarks on challenges and opportunities in developing a shared research agenda.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
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ORGANIZATION OF THE PROCEEDINGS

This proceedings document is organized into seven chapters. Following the introduction, Chapter 2 presents an overview of infection-associated chronic illnesses, and Chapter 3 describes common mechanistic factors of these illnesses. Chapter 4 explores future opportunities and research priorities for diagnostics, with Chapter 5 focusing on opportunities for therapeutics. Chapter 6 continues the discussion on advancing research through patient-driven efforts and the innovation and infrastructure needed. Finally, Chapter 7 considers challenges and opportunities in a shared research agenda. Suggestions for future research efforts and potential next steps by individual speakers are outlined in a box at the end of Chapter 7.

This proceedings document has been prepared by the workshop rapporteur as a factual summary of presentations and discussions at the workshop. The planning committee’s role was limited to planning and convening the workshop. The views contained in the proceedings are those of individual workshop participants and do not necessarily represent the views of all workshop participants, the planning committee, or the National Academies.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
×
Page 1
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
×
Page 2
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
×
Page 3
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27462.
×
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The National Academies Forum on Microbial Threats and Forum on Neuroscience and Nervous System Disorders hosted a hybrid public workshop in June 2023 to explore opportunities to advance research and treatment of infection-associated chronic illnesses. The illnesses discussed in this workshop, including COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent or posttreatment Lyme disease syndrome (PTLDS), and multiple sclerosis (MS), share overlapping mechanisms and symptoms and have been inadequately researched. Recognizing these commonalities, speakers identified the need to advance research more comprehensively, translating to improved diagnostic and treatment options for patients across multiple conditions.

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