Long Covid Defined, Ely et al. 2024

[Jaybee00]

https://www.nejm.org/doi/full/10.1056/NEJMsb2408466

No abstract.


“BOX 1. 2024 NASEM LONG COVID DEFINITION*
Long Covid is 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.

Long Covid manifests in multiple ways. A complete enumeration of possible signs, symptoms, and diagnosable conditions of long Covid would have hundreds of entries. Any organ system can be involved, and patients can present with the following:

• Single or multiple symptoms, such as shortness of breath, cough, persistent fatigue, postexertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.”

If I’m reading this right, if you have a cough or constipation for 3 months following Covid, then you have LC. Whatever.

 

[rvallee]

There are some really good bits in there. Like explaining how there is no reason to change, especially not for the sake of performative "we did a thing as professionals", since it brings nothing at all.

And also recognition that the patient community did all the early work.

And this:

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.

 

[SNT Gatchaman]

Also good in my view is —

To create a consistent definition, we needed to develop consistent terminology. Three notable aspects of terminology were adopted by the committee. First, the committee adopted the patient-coined term “long Covid” as a simple, well understood, and readily communicated label for this condition and urged its uniform use. Fancier or technical terms, such as postacute sequelae of Covid (PASC), lend a patina of arcanity while adding nothing to the meaning. Second, the definition situates long Covid among the larger class of infection-associated chronic conditions. The family of such conditions shares an association with acute infection by viruses, bacteria, fungi, or parasites, with long Covid representing only the most recent and prominent example. Third, the committee applied the term “disease state” to emphasize the reality and potential severity of the condition. We learned from patients’ reported interactions with physicians and other health care professionals that such terms as “syndrome” may connote an amorphous ailment that will be dismissed as not having a physical basis.

 

[rvallee]

Which is all really unfortunate. We have to lose perfectly acceptable terminology because every term has been abused away from its intended meaning. Syndromes should not be taken as meaning trivial. SARS is a syndrome, so is AIDS and many other terrible conditions. But the word really is trivialized. Sometimes. It depends.

And sadly no doubt that if "disease state" were to take off, it would almost inevitably end up the same way. FFS even the word 'somatic' has become synonym with psychosomatic because some people think they're clever misusing a word in a way that is obvious but that they can get away with because they control everything that is written down. In the end it's all about lack of accountability for obviously unprofessional behavior, but by definition the behavior of professionals is professional behavior so... ¯\_(ツ)_/¯.

But it's not as if we can fix the medical profession out of its obsession with "not my/anyone's problem". Bad faith efforts from within are impossible to deal with as a system of rules. Politics has the same problem, there is usually no way to deal with corruption at the core of a government, because that corruption soon makes it impossible to root out.

Psychosomatic ideology has truly been like a rot infecting everything. It's making rational discussions almost impossible in some cases. It probably stands out several orders of magnitude outside of anything comparable. And it's freaking BELOVED. Absurd.

 

[RedFox]

Since long Covid is now any health problem caused by Covid, it seems long Covid is more of a cause than disease. A category of illness rather than one illness. It resembles physical trauma, where all the injuries have the same cause but many different outcomes and can affect any body part.

 

[Jonathan Edwards]

Also good in my view is —

I am very unimpressed by that passage though.
This is a syndrome if it is anything. I can see the point in using a name recognised by patients but the rest of it sounds like 'turning it into a disease' in just the way that 'ME', as defined by Acheson, did, which took sixty years to unpick.

It is these people who are adding the 'patina' to my mind. PASC is a reasonably precise term that does not imply any specific causal process - although it implies the causal relevance of Covid.

If you are going to have a term like Long Covid that is supposed to involve some specific 'disease state' then it needs to be defined much more precisely - as ME/CFS is. In fact it is probably a combination of PVFS (post viral fatigue syndrome) and true ME/CFS, which I don't think is necessarily the same concept.

I am afraid that from the perspective of someone who actually spent a lifetime trying to work out a disease mechanism, with some success, this is all hot air.

 

[RedFox]

Yeah, a disease state means you know something about the pathology. We still know rather little about what causes different manifestations of long Covid, and it's almost certainly multiple disease processes that may share some aspects.