In June, 2023 the U.S. National Academies of Science, Engineering and Medicine [NASEM] held a two day forum that many of us have long been hoping for.1 Medicine has a huge problem with silos, where diagnosis may depend on what lens the medical specialist is using. The current concern for long COVID underscores an increasing recognition of chronic illnesses that appear to arise from infectious diseases.2
The infections may be different but they share common pathways.
This overlooked, growing public health problem often includes a patient history of infection by viral or bacterial pathogens followed by long-lasting and often debilitating symptoms including severe fatigue, cognitive impairment, and multi-organ dysfunction.
Examples of infection-associated chronic illnesses include:
- Long COVID or post-acute sequelae of COVID-19: Between 10 to 30% of patients infected with SARS-CoV-2 develop chronic symptoms that lead to a diagnosis of long COVID. An estimate of the number of Canadians affected is 1.4 million [May 2023]
- Myalgic encephalomyelitis/chronic fatigue disease (ME/CFS): ME/CFS onset is often associated with a prior, unidentified infectious episode. Approximately 600,000 Canadians are diagnosed with ME/CFS and experience chronic, multi-organ symptoms.
- Persistent or post-treatment Lyme disease: Between 10-30% of Lyme disease patients develop persistent and debilitating symptoms after standard antibiotic treatment. There is consensus that cases are vastly under-detected in Canada and you can safely multiply whatever number they give you by 10 and still be underestimating the true incidence of the disease.
- Multiple sclerosis: More than 90,000 Canadians are living with MS. Canada has one of the highest rates of MS and one of the lowest rates of Lyme. Since MS often looks like Lyme the Lyme community would like to have better tests that can detect Borrelia at all stages of the disease.
In addition to the debilitating physical impact on patients, chronic illnesses present broader societal impacts taking people off of work, out of school and potentially putting them on welfare.
Given the commonality in chronic symptoms among long COVID, persistent Lyme disease syndrome, ME/CFS, multiple sclerosis and other conditions, it is not surprising to find similarities in the leading hypotheses for the explanation of these illnesses; e.g., pathogen or antigen persistence, immune response dysregulation, altered neurologic function, and altered microbiome composition and activity. Researchers studying different infection-associated chronic illnesses face common challenges in identifying disease biomarkers and developing diagnostics and therapeutic options. In addition to this workshop, other National Academies activities are addressing the significance of infection-associated chronic illnesses.