A classification system for Post-Acute Sequelae of SARS CoV-2 Infection, 2022, Jason and Islam

Abstract

This study aimed to contribute to the development of a research case definition for post-acute sequelae of SARS CoV-2 infection (PASC) using a PASC data set and experiences from case definitions developed for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Our database included patients with PASC who provided self-report symptomology during the onset of infection and the time of survey completion (post-infection). We found that we could distinguish between those with mild, moderate, and severe PASC. Regarding the proportion meeting an ME/CFS case definition, we found 0% in the mildly impaired group, 30.6% to 62.6% in the moderately impaired group, and 74.3% to 89.0% in the severely impaired group.

Based on these preliminary data, we propose a 5-part classification system for PASC.

Axis 1 involves the variant of the COVID infection and the type of documentation of the infection.
Axis 2 involves the time elapsed since infection.
Axis 3 involves the type of medical collateral damage to different organs.
Axis 4 involves functional impairment classified into three categories: mild, moderate, or severe.
Finally, Axis 5 is the identified symptoms.

Finally, if the patient has been sick for 6 or more months, it is important to determine whether the person has met the ME/CFS criteria. This proposed 5-part classification system for PASC might bring considerable clarity to diagnosing PASC.

Open access, https://cajmhe.com/index.php/journal/article/view/146

 

There is no need to be locked by the arbitrary standard of 6 months, in fact it's massively counterproductive considering how important it is to quickly reduce exertion early on. This threshold was established largely because of the dominant paradigm of "just chronic fatigue" that has nothing to do with infections and sought to reattribute it to imaginary thoughts and beliefs.

Medicine doesn't consider a hairline fracture to be a completely different thing from a fully snapped bone, or relatively mild pneumonia to be completely different from severe pneumonia. If anything Long Covid has shown is that this timeline was completely arbitrary and has no basis in reality. There is a range of patients who need to be identified from day 1 and keeping this threshold is simply not safe for them, it's explicitly least safe for those who need it the most and it would not be used appropriately in medical care.

We see people suffering symptoms for 3 weeks, 3 months, 6 months, 9 months, 15 months and so on. The same symptoms, same patterns, same cause/trigger. It's completely arbitrary to decide what it should be called based on duration, is based on ideological dogma from people who dismiss the reality of chronic illness. There can be convenient labels, like infant, child, teen, and so on, but those are simply meta information, they are not much relevant to what health care needs to do.

It's really important to take several steps back and re-establish what needs to be done here. The range of symptom profiles that post-infectious chronic illness can cause spans the whole of: ME/CFS, fibromyalgia, IBS, POTS/dysautonomia and many others. Those have been kept arbitrarily separate because the entire concept of 1 cause = many outcomes is rejected without any valid reason.

Common mild infectious diseases can have a range of short-, medium- and long-term illnesses, some of which can remain chronic. This is the main takeaway here, the future needs to be unbound from past mistakes or nothing will many any progress. This is especially important given the damn cycle of relapses and remissions that can completely screw with how some physicians will evaluate the timeline if it's interrupted, medicine deals extremely poorly with things that aren't strictly linear.

 

Yes, it's to rule out self-resolving PVFS. Of course, the reality is that people usually won't be diagnosed by six months anyway (at least, not here in the UK). This is where clinical and research purposes differ.

Moving the timeframe forward a bit in clinical guidelines can help persuade GPs to make a referral for diagnosis sooner, rather than waiting for an arbitrary time point and then making the patient wait again to get the appointment.

But the US probably has different needs, as does research, and so a six month cut-off is probably still appropriate for general diagnostic criteria.

 

That's my point. There is no need to distinguish ME as being "PVFS that doesn't recover". It's the same phenomenon, from which some recover, some don't. Some cancers go into full remissions, no one knows why. Oncology doesn't distinguish from a "cancer scare" vs cancer after the fact. Sometimes the immune system is able to fight back, there is no need for psychosocial mysticism.

It's a complete paradigm shift in thinking, but considering that it needs to happen anyway, might as well clean up the whole place in the process. And that paradigm needs to take into account this isn't limited to ME, and a whole bunch of other major shifts in thinking. The entire thinking needs a full reset and should not be limited by past failures.

And actually the fact that most recover is extremely important in dismissing the entire BPS paradigm, in that all their claims of recoveries are easily explained by natural recoveries, following patterns that need to be uncovered. It's immensely important in that any explanation for the disease process has to explain that. If it's viral persistence that drives the disease, for example, it would likely involve elimination of all offending pathogens. If it's autoimmune, it would involve clearing the immune processes that get stuck. And so on.

 

If we consider ME/CFS to be a disease with a unique pathology or a set of diseases with common symptomology and unique pathologies, then the equation PVS = ME/CFS does not hold until we have evidence of the respective pathology or pathologies. It might be for example, that PVS or other temporal post infection debility is simply a prolonged or disturbed normal healing process that in time resolves, without there being any unique pathology other than that which lies behind the prolongation or disturbance.

That such a prolonged or disturbed normal healing process precedes the lifetime debility of ME/CFS would of course be significant, but there is no inherent reasons why the two should result from the same unique pathology. Of course it may be that PVS and ME/CFS are the same disease or disease process in any given individual, but given the heterogeneity of ME/CFS, which includes the absence of any identifiable infection event in a % of patients, we have to consider that both multiple sequences of disease and multiple pathologies are to be found across the patient population.