The Dirty Dozen Symptoms of Long Covid

Good Lord. Where do I start?

There are two twitter storms within the Long Covid community stirring up quite a bit of dust; one being tensions boiling over with division starting to happen to what was a cohesive community and the second is the "bombshell" dropped by NIH defining Long Covid with twelve symptoms.

The later  is one of the outcomes of the (not)RECOVER(ed) $1B initiative that has had "little to show for it."

The former, I don't understand (and perhaps a future post) but the "dirty dozen" is a hot topic and I'm likely already in trouble by stating that NIH and JAMA narrowed down and simplified to a mere dozen symptoms as being inaccurate.

One side of that coin is there WAS a patient advocate as part of the study which we'd hope would reflect the community in terms of definitions and what those definitions would be used for. That's the start of the problem. Lisa McCorkell was that advocate and is one of  the co-founders of Patient Led Research. The Patient-Led Research Collaborative is a group of Long COVID patients who are also researchers born out of the Body Politic. 

Before I get in trouble for the second time in the third paragraph, let me state I don't know Lisa but can only imagine the amount of (thankless) work that participation would entail. Me personally, I wouldn't have enough "spoons" to dedicate to such an effort--its' far easier for me to make Jr. High level humor videos on my own time on Long Covid. 

In no way am I diminishing Lisa's efforts; but quite the opposite of pointing out there was at least some patient input (aside from the 9000+ study participants) so bravo to her. 

Why am I in trouble for stating "(they) narrowed down and simplified to a mere dozen symptoms?" If you dive into the paper and the countless threads on twitter, you'll find acknowledgement that there are over 200 symptoms of Long Covid (as Lisa points out;) yet they came up with twelve to determine a PASC (Post-acute sequalae Covid--clinical term for "Long Covid") score. The crazy part was the scoring system outlined in the JAMA paper states, "The optimal PASC score threshold used was 12 or greater." (see Figure 2.)

It's kind of  like the SAT in high school, but in this case (at least the larger interpretation is) if you score below twelve, you don't get into the college you wanted but in this case, congrats, you DON'T have Long Covid. Don't shoot the messenger or in this case the brain-fogged blogger, that's how the broad universe (and media) is interpreting this paper. Each symptom has a weighted point system with loss of taste and smell being the highest with eight points. 

As an aside, I NEVER lost my sense of taste and smell; therefore no eight points for me. My "Spidey sense" and non-medical research opinion (based on my three years of Long Covid and interacting with hundreds of people with Long Covid) is that loss of taste and smell is a strong indicator of having Covid, but NOT EVERYONE loses these senses during onset of infection. 

The JAMA paper shows a dendrogram indicating...I'm not entirely sure what it's indicating because I don't know what a dendrogram is; but shows of the 9764 participants scores a 100 in the n = 477 column. I have no idea what I just typed, but what I do know is that know very few who still haven't regained those senses. I'd say that universally the Long Covid community is baffled that it has such a high ranking vs (as an example) "it feels like the Alien from the movie of the same name is ready to burst out of my chest most nights."

I'm probably making the case for NOT sharing these type of papers with non-professionals, but I (like many of my Long Covid friends) seek guidance as we're trying to regain our lives and are hungry for answers. 

As I state, I'm not qualified as a medical professional and have cognitive issues so I could be misinterpreting this wrong, but I'm not a alone as interpreting it (above) thus far. Where it starts to get worse is then how it's being reported in mainstream media. The CBS Headline was "Long COVID is defined by these 12 symptoms, new study finds." Not twelve of 200, not over 200, but these twelve define Long Covid. 

In the above mentioned CBS Article, Professor Jodie Guest from Emory Epidemiology is interviewed (in the accompanied video) and states that "tiredness and fatigue" is the number one symptom which I believe DOES resonate with the community...soooo, again, why is taste/smell ranked so high??? (Good interview with Professor Guest and a good follow, but her interview didn't seem to match CBS' interpretation or headline.)

Some of the "ugly" within the Long Covid Community jumping all 
over Hannah Davis 

As a hack (former high school) journalist, I have deep respect for credible journalists like Tom Costello from NBC News that's covered my story and more recently Morgan Stephens (published in CNN.) I have not held back for others like Jeff (not) Wise and Natalie (not so) Shure who either connect dots that aren't there, gaslight those with Long Covid or are simply not qualified (as I state I am) to interpret complex medical topics and papers.

Back to the "Dirty Dozen" I've had numerous friends whose score is below twelve and are furious and feeling dismissed. I scored an eighteen, but that doesn't mean "Jack diddly Dick." Does that make me "more sick" than others? No. 

That's where this rat's nest really starts to unravel. Could Doctors, Hospitals, Long Covid Clinics, insurance companies, and Social Security Disability use this ranking system to determine whether or not you have Long Covid? I don't know, but it's conceivable when the community is "marked" with gaslighting, dismissal of our condition, and lacking ubiquitous definitive tests to identify PASC thus far.

Having said all that, I acknowledge that this is a complex topic and difficult to boil down over 9000 participants into a pretty little box of a dozen symptoms, but I feel they "missed the mark." I often answer the question of what are your symptoms and what is your day like to the analogy of a kaleidoscope (see Figure 2.) It's a wide blend of symptoms (prisms) that change over the course of a day, a month and in my case, over three years. 

I hit many of the quadrants of the dendogram with neuropathy that still sends me to the ice tub most nights, PEM (post exertion malaise,) fatigue, chest pain and spasms, advancing cognitive issues, extreme dyspnea, vasculitis, preload insufficiency of the heart, broken immune system, and rife with inflammation (and I'm sure I'm missing a few of the "garden variety" Long Covid symptoms.)

Not on the list is cranial instability--common and now part of my new set of symptoms--I now have a diagnosis of cranial stenosis (see RTHM YouTube video on Cranial Instability.) Double vision (only once for me,) weird rashes (what looks like according to my Google MD wife as Shingles) in the last week, swimming fingers (pruny fingers seen when spending time in the water,) losing fingernail "moons" and now tinnitus are relatively new for me but alas none are on the list.

But hey, I'm not a ten, I'm an eighteen so put that in your dendrogram.

UPDATE: The Long Covid Action Project and Action Network has a template to send a letter to your (U.S.) political representatives asking to retract the paper (HERE.)