Earlier today, while I was eating lunch, I got an email from the Health and Human Services Office of the Assistant Secretary for Health’s Office of Long COVID Research and Practice mailing list that was so exciting that I dropped my food.

A screengrab of the email follows (with alt text embedded):

The referenced committee webpage is here, and the general project webpage is here.

Disclaimer

I took a look through some of the resources that the National Academies of Sciences, Engineering, and Medicine put out and wanted to share my takeaways as a patient advocate only, in a personal capacity.

None of the opinions in this piece are medical or legal advice, and I encourage you to take a read through what I did to form your own opinions.

The sources I reviewed were:

Examining the Working Definition for Long COVID (Project Webpage)NASEM Long COVID Definition HighlightsNASEM Long COVID Definition One PagerNASEM News Release: Federal Government, Clinicians, Employers, and Others Should Adopt New Definition for Long COVID to Aid in Consistent Diagnosis, Documentation, and TreatmentInfographic: Elements of the 2024 NASEM Long COVID Definition

In the two hours since I got the message, I haven’t had the time to skim the full 150+ page report, but it has been released as well and is available to read free here. You can also buy the pre-publication copy or preorder a paperback version through that link.

NASEM also hosted a webinar announcing the report’s release, which I wasn’t able to attend. A recording of the webcast is available here.

My Takeaways

This is HUGE. Long COVID advocates have long fought for a uniform definition to assist doctors in making the correct diagnosis for Long COVID.

HHS, in the email above, is careful to note that they are in the reviewing phase of this research, and have not made a final decision on adoption (which will likely require a public comment period—stay tuned.) However, If HHS adopts the recommendations of the NASEM committee on this issue, there will be a science-backed, patient-included consensus definition for Long COVID. I believe it’s likely to be adopted, considering HHS was one of the requestors and financial sponsors of this research.

NASEM now defines Long COVID as “an infection-associated chronic condition 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.”

They appear to make five basic criteria to identify LC:

Attribution to Infection: Can follow SARS-CoV-2 (COVID-19) infections of any severity, including asymptomatic. No laboratory confirmation or other proof of initial SARS-CoV-2 infection is required.Onset and Duration: Symptoms must be present for at least three months. Onset may be continuous from infection or be delayed following acute SARS-CoV-2 infection.The committee does not define a strict cutoff time after infection for diagnosis of symptoms as Long COVID.Symptoms: More than 200 symptoms and conditions were observed to be possible, including exacerbation of pre-existing conditions. Symptoms may be of any severity and resolve within months or persist over years. The committee gives examples of possible symptoms and conditions that may be part of Long COVID, but is very careful to note that the symptoms and conditions they mention are not required or exclusionary in the diagnosis of Long COVID.Equity: The committee recognizes that Long COVID may affect children and adults, regardless of health, disability, socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity, or geographic location.This reinforces advocacy efforts to communicate that anyone may be affected by Long COVID.Functional Impairment: The committee notes that Long COVID can have profound emotional and physical impact and affect ability to work, attend school, take care of family, and practice self care.

Again, and this cannot be overstated, this is a HUGE win for Long COVID advocates, patients, and caregivers. If adopted, this definition would:

set the stage for proper diagnosis; potentially expand eligibility for health services, insurance coverage, disability benefits, and school or workplace accommodations; andprovide a resource for the development of public awareness and education, especially for patients and their families and caregivers.

Today is a great day. We should take a moment to revel in the fruits of our labor as advocates. But, tomorrow, the fight to get this adopted will begin. Thanks for reading.