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NASEM Long COVID Definition: Pros, Cons, & Hmms


Recently the National Academies of Sciences, Engineering, and Medicine created a definition for Long COVID, with some outside help (you can see who was involved here.)


You will find the newly minted Long COVID (LC) definition here.


Let's break down the good, the bad, & the stuff that is borderline with regards to this Long COVID Definition. Starting with the pros.



Pros

  1. In their Long COVID definition it's stated that Long COVID can be relapsing, remitting, & progressive & have a delayed onset. These are important details that many still don't understand, outside of people suffering from Long COVID. Long COVID can be delayed weeks before more serious effects are felt. 90% with Long COVID face a mild initial infection. After the initial symptoms, it can be an up and down roller coaster ride of shifting symptoms that peak & valley. Symptoms at the same time can be progressive where those battling Long COVID can have some of their most severe problems months or years after initial SARS-CoV-2 infection.

  2. People with Long COVID can experience one or more organs being affected (any organ system can be involved). This is a good point to make. Lots of people still think COVID is only a respiratory disease when it's more of a vascular disease. As you know, the vascular system runs throughout the entire body. COVID affects the brain, the heart, the lungs, the kidneys, the liver, the intestines, the reproductive organs, etc. etc. etc..

  3. Long COVID manifests in different ways (symptoms, etc.). Similar to Chronic Lyme, and other chronic illnesses, Long COVID presents itself in a vast amount of ways. Long COVID has 200+ symptoms associated with it. It can cause neurological, cardiac, GI, etc. symptoms as COVID can affect everything & anything. One may have different symptoms due to their Long COVID compared to someone else with the disease, but they can still be suffering from the same underlying cause.

  4. They mentioned previous infections may be unrecognized. Another important point. Many that have Long COVID got sick in April 2020 or earlier when it was very difficult to get COVID Testing. Others got sick later on & didn't receive, or seek, PCR testing for whatever reason. This does not mean they don't have Long COVID due to lack of availability of testing, or due to poor testing.

  5. Long COVID can affect everyone. Long COVID affects the middle aged the most. Children can get Long COVID, some estimate there are 5.8 million children with Long COVID in the USA alone. Athletes can get Long COVID. Anyone can get Long COVID. It's not the same demographics as those that get severe initial disease from SARS-CoV-2, and this is vital to make clear.

  6. Can exacerbate pre-existing issues. Those with pre-exisiting issues need to be especially careful to avoid COVID. A sudden worsening of pre-COVID Pandemic issues should bring COVID to mind for doctors with their patients. We are glad this definition includes this.



Cons

  1. In the definition they called Long COVID an "Infection Associated Chronic Condition (IACC)". This phrase sounds fine on its face, but has the great potential to be misused, & not in the chronically ill's favor. Long COVID is undoubtedly unique. It's detrimental for it to not be seen as such. No chronic illness community has been helped by vagueness. IACC came in more fashion after the failed "One Name Campaign" which was a campaign to lump various unsolved chronic illnesses together under one name. An obvious bad idea for anyone that prefers solutions for varying chronic illnesses that have differing root causes. Time will tell if Infection Associated Chronic Conditions will become the next minimizing phrase for the chronically ill, but it seems to be trending that way. What does putting this term in the Long COVID definition even accomplish?

  2. "Long COVID (LC) occurs ... after SARS-CoV-2 Infection". This is a very poor choice of phrasing. It should say "Long COVID (LC) occurs ... due to SARS-CoV-2 Infection." After SARS-CoV-2 (SC2) Infection sounds like SC2 has come & gone. Studies suggest that this is not true. It seems that SC2 has come & stayed. It's more inclusive, & accurate, to say "due" instead of "after". The wording of all this feels post-virally, which is a poor term. IACC is a part of that same sentence as well, so it feels very much like a push for Long COVID to go deeper into syndrome land. People with Long COVID do not want to be stuck in vague, no roots, poor testing, & poor treatments syndrome land. It's not good for their health.

  3. Not enough severe symptoms, damage, or issues that occur due to Long COVID, mentioned. They mention 14 of the 200+ symptoms associated with Long COVID in the definition. They're certainly symptoms that are associated with LC, but they don't adequately capture the severity of what Long Haulers face. It also doesn't capture the damage & dysfunction of which Long Haulers deal.

  4. The definition doesn't mention Long COVID can be fatal. According to the CDC, 5,000+ people have passed away due to Long COVID in the USA, & this is a likely significant under count. Again, like 3 above, this illustrates the seriousness & severity of Long COVID. Unfortunately, it was left out.

  5. No mention of SARS-CoV-2 viral persistence. There is no mention of SC2 viral persistence, which is the leading theory for the cause of Long COVID. This is an incredibly important detail that should have been mentioned, but was conspicuously left out.

  6. No mention of reactivated pathogens in Long COVID. Another thing conspicuously left out that should be not controversial at all, is how those with Long COVID have reactivated pathogens, such as EBV, HHV6, etc.. They mentioned 19 conditions associated with LC, some being symptomatic syndromes, or vague conditions. We'd have to ask, why weren't some of the specific things mentioned that have been proven to occur like chronic/reactivated pathogens? That makes no sense & brings us back to 1 in this section. The concern that Infection Associated Chronic Condition (IACC) usage will be to the Long Haulers detriment in order to promote vagueness at the expense of specificity, even when there is proven specificity to be promoted & mentioned.


Hmms

  1. “Disease state” phrase. We don't love the "disease state" phrase. Feels like the blame is being thrust on to the patient, instead of there being some root cause, like chronic SC2, spike protein, reactivated pathogens, etc., that can & should be addressed. Feels very vague & a way to say SC2 triggered you into the state you're in & now you're in a diseased state. "Chronic illness" is preferable.

  2. Listing of other diagnosable conditions and symptomatic syndromes. Like stated earlier, they mentioned at least 19 other conditions associated with Long COVID. On one hand that makes sense to do, on another hand there are many vague things mentioned that could lead people away from the root cause(s) of Long COVID. It just feels contrived in terms of what was not mentioned, specifically reactivated pathogens, spike protein, & chronic COVID. Furthermore, with what chronic illnesses do people constantly say, you have "this", but look over here at that. Look at these symptomatic syndromes that have poor testing, don't tell you the root, & have poor treatments instead of believing Long COVID might have unique causes & problems. It doesn't feel right. People with other chronic pathogens, or chronic illnesses, understand that multiple things can be occurring at once. It's just odd that the vague terms made the list as part of the Long COVID definition, but the specific things were not to be included. Shouldn't the goal be specificity focused on tangible things?




It's not simple to create a definition around a chronic illness that's fairly new, has poor testing, & poor treatments. We appreciate the difficult task of NASEM & those aiding NASEM faced. While there are good parts of this definition that we were pleased were mentioned, it is lacking at the same time. Let's push NASEM refine their definition & for these changes mentioned above to be made for a more specific Long COVID definition, so that those with Long COVID don't suffer the same fate others with unresolved chronic illness have in the past due to, at least in part, poor definitions.

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