A Long COVID definition: A Chronic, Systemic Disease State with Profound Consequences, National Academies, 2024

Nightsong

Nightsong

Senior Member (Voting Rights)
Long Covid Defined

"Here, we describe the process and rationale for the resulting 2024 NASEM long Covid definition.5 As committee members and lead staff who produced the definition, we can attest that the process inspired discovery and deepening appreciation for the reality and severity of this condition. As a clinician, one of us (Dr. Ely) can admit to early skepticism. Having worked with severely ill patients in the intensive care unit and researched their survivorship trajectories for 25 years,6 we found that the myriad signs and symptoms reported by patients with long Covid seemed to mirror those described by patients after critical illness. At first, it appeared plausible to attribute these numerous adverse outcomes — including cognitive impairment, neuromuscular disease, depression, and severe fatigue — to the acquired chronic disease state called the post intensive care syndrome (PICS).7-9 This hypothesis faltered when symptoms similar to PICS began cropping up in tens of thousands of patients from the first wave of the pandemic, most of whom had never been admitted to a hospital during their acute SARS-CoV-2 infection and reported only mild initial symptoms. Patient advocacy groups marshalled social media and quickly established themselves as citizen scientists, coining the term long Covid.

Patients with long Covid join the ranks of millions before them with chronic conditions in which associations with infections have been found (e.g., myalgic encephalomyelitis–chronic fatigue syndrome, post-treatment Lyme disease, and multiple sclerosis, among others). These conditions had been identified during the preceding decades without a pandemic to garner concerted attention to their plight. Mindful of these patients, the committee set out to develop a definition for long Covid that offers legitimacy and a path toward therapeutic answers through future clinical trials."

https://www.nejm.org/doi/10.1056/NEJMsb2408466
 
A comprehensive report from a National Academies of Science, Engineering and Medicine committee, with a clear summary published in the New England Journal of Medicine, one of the most influential academic journals in the world, and I'm not even sure it will make a difference.

This is more eminence than the lousy cast of characters that have sullied our lives have ever put forward. Eminence is everything in medicine, outside of technology that works reliably anyway. It's on the basis of undeserved eminence that all of this was disastrously handled.

Is this enough to overcome? With all the weight of sunk cost done by decades of what can be fairly described as malfeasance crossed with criminal negligence?

I sure hope so, but I no longer value hope as worth a damn. Our world is irrational and driven by impulse and selfishness.

We were always right. They were always wrong. And it barely makes a difference.
 
rvallee said:
A comprehensive report from a National Academies of Science, Engineering and Medicine committee, with a clear summary published in the New England Journal of Medicine, one of the most influential academic journals in the world, and I'm not even sure it will make a difference.
Click to expand...
Well it certainly won't suddenly reverse everything, that is never going to happen. But all this stuff adds up.
 
The National Academies' 2024 Diagnostic Criteria for Long COVID: Concerns That Could Affect the Rheumatology Community - Leonard H. Calabrese et al

Quotes:

Over time long COVID and PASC have come to encompass a myriad of over 200 symptoms, the majority of which did not have clear pathologic correlates.2 Similar postinfectious sequelae, including clinical syndromes resembling myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, have been previously described following numerous other infectious diseases but not to the scale of that seen with COVID-19.3, 4

...

we have concerns regarding the clinical use of the National Academies’ definition and how this definition may currently impact the field of rheumatic disease.

https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/art.43114
 
Kalliope said:
The National Academies' 2024 Diagnostic Criteria for Long COVID: Concerns That Could Affect the Rheumatology Community - Leonard H. Calabrese et al

Quotes:

Over time long COVID and PASC have come to encompass a myriad of over 200 symptoms, the majority of which did not have clear pathologic correlates.2 Similar postinfectious sequelae, including clinical syndromes resembling myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, have been previously described following numerous other infectious diseases but not to the scale of that seen with COVID-19.3, 4

...

we have concerns regarding the clinical use of the National Academies’ definition and how this definition may currently impact the field of rheumatic disease.

https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/art.43114
Click to expand...
Miriam Tucker has written an article about about this "Notes from the Field" commentary for Medscape:

"Rheumatologists Concerned by Broad Long COVID Definition"

Quote:

Asked for a response, NASEM definition co-author Betty Diamond, MD, director of the Institute of Molecular Medicine & Maureen and Ralph Nappi Professor of Autoimmune Diseases, Feinstein Institutes for Medical Research, Manhasset, New York, said that “the concern expressed in the article is valid, and not just for rheumatic disease. But I think one has to point out the concerns with too narrow a definition.”

https://www.medscape.com/viewarticl...rned-broad-long-covid-definition-2025a10003ll
 
All I see hear is self-righteous burbling I am afraid. 'We were right all along and even if we weren't to begin with we are now and we are terribly concerned about all those poor people (so keep the money coming in)' is what I hear.

These are the politicos. I learnt to ignore them soon after starting in this business.
Sometimes they sound plausible but if you toss a coin sometimes it is heads.
 
Summary article published as

The 2024 National Academies of Sciences, Engineering, and Medicine Long COVID Definition: What Clinicians Need to Know (2025)
Chu, Lily; Bishof, Karyn; Dumes, Abigail A.; Wesley Ely, E.; Joseph, Paule V.; Troxel, Andrea B.

Millions of Americans affected by Long COVID (LC) report difficulty accessing care and support. One barrier is obtaining a diagnosis. In response, US federal agencies commissioned a National Academies of Sciences, Engineering, and Medicine (NASEM) committee to re-examine the existing federal definitions for LC. The Committee concluded that LC is “an infection-associated chronic condition (IACC) occurring after SARS-CoV-2 infection that is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that can present as singular or multiple symptoms and/or diagnosable conditions.” The full report was released in June 2024. We briefly highlight features and aspects of the definition that may help clinicians identify those who remain undiagnosed and improve care for all LC patients.

Link | PDF (Journal of General Internal Medicine) [Open Access]
 
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