We are living in a weird time. Day by day we see more & more people coughing and getting sick, our neighbors, coworkers on Zoom calls, politicians, etc… But here’s when it becomes really, really scary — when you become one of “those” and have no clue what to do. Your reptile brain activates, you enter a state of panic, and engage complete freakout mode. That’s what happened to me this Monday, and I’m not sure I’m past this stage.
That’s my motivation to write this article, for everyone who is sick right now, and those who may become sick.
This is a personal story about how to navigate the current pandemic landscape. The featured image is me getting nasal swab test on the parking lot of the hospital.
DISCLAIMER: This article is not a medical recommendation, opinions and views are not representative of any entities I’m affiliated with, this is a personal story of a person who has no clue how to navigate the current pandemic. This is a long read; I cut everything down to the essentials but it’s still long — I hope it’s helpful.
Preface
I’m an engineer that turned entrepreneur and has been running startups for years and somehow organized something truly beautiful a bit more than a month ago: a community of volunteers to help fight coronavirus with artificial intelligence.
As a result, 972 members from all over the world joined us, literally from all over the globe. And not just engineers, physicists, doctors, marketers, journalists, psycholinguists, you name it, we’ve got them all…
CoronaWhy is a group of extremely intelligent people (I feel stupid 99% of the time) that showed up and decided to take on a crazy problem of helping researchers navigate a database of 50,000+ scientific papers about COVID-19.
We’ve been on TV, we’ve been covered by Wall Street Journal and other big publications as a result, it’s simply amazing to see how many people and companies are willing to help us and therefore the world.
But helping to organize 1000 people across 20 timezones working on extremely complex problems is tough, so tough that I may have burned myself out, which as we know often results in a systemic response of our body telling us to stop everything and rest.
I’ve ignored my cough and symptoms for 12+ days before this Monday, which was the moment when delusions about my health finally disappeared and I realized I needed to rest. I got severe chest pain and completely freaked out.
So for anyone who’s a workaholic, please find a way to be accountable with yourself, make sure you are not overworking, otherwise, your chances of getting sick are much much higher.
Somehow I managed to work 18h per day for a whole month. This is not the first time I did such a crazy thing but this time at least it had a real purpose, except it was way more intense mentally than usual. Some days I hit 30 calls per day, others interacted with 100+ people via messages on slack.
Obviously, I realized what I was doing but the need to help felt bigger than any personal necessity. Fortunately, I’m blessed to have a wife that has been taking care of me for the entire period and somehow managed to accept my behavior.. until it got really bad.
Freakout Timeline
12:00 — Apr 20, 2020
After taking multiple morning calls I finally realized that my chest and ribs hurt a lot more than the day before and it hit me, it might be serious. After giving an initial search for ways to schedule test I got one scheduled by my insurance provider Kaiser Permanente. The weirdest thing was when the initial person on a call asked me what I was doing for work and I said I was helping researchers fight coronavirus. It felt like I was faking it or something, quite ironic situation…
As a result, I scheduled a drive-through nasal swab test. Not without hurdles though, it seemed like the system has been bouncing me around different phone numbers and then I missed the call that I couldn’t return and no one could help, quite expected to be honest. So after a couple of hours of bouncing around and taking a nap, I scheduled a test in a hospital nearby.
“Drive into the parking structure, turn on the hazard lights and close your windows, that’s how they will know you came in for a test”
17:00 — Apr 20, 2020 — Urgent Care @ Kaiser Permanente
So, we go into the parking structure and put our hazards on. Waiting in the parking lot for a medical test was another surreal moment — just plain odd. It didn’t take a few minutes before the nurse came around, asking about my cough, shortness of breath, and temperature. I told her “yes, heavy cough, little bit shortness of breath, mild fever of 99.5”. This seemed to pass her test because she asked me to open the door, but to stay in the car. She explains the procedure for the test, saying she will be swabbing my throat and inside my nasal cavity. It sounds like she’s said this same bit of info a million times. Probably because she has by now.
And let me tell you, these nasal swab things hurt! The nurse kept apologizing and I kept saying no, no, thank you. I’m sure this wasn’t what she had in mind when she signed up to be a nurse, sitting in a hot parking structure swabbing throat and nose, throat and nose, throat and nose, all the meanwhile doing everything she can to obey the complicated PPE rules to protect herself and her family…
The nurse explained that it would take 24h for the test results to come in and I will receive further guidance on what to do.
I’ve taken the rest of the day off, muted all slack channels on all my devices, and finally powered down my computer for the first time in months.
11:00 — Apr 21, 2020 — Test results
I’ve received the results. They were negative, at first I was happy, but then I realized that I had ZERO information on what happened, what the test result meant, and what I should do. That’s when I started questioning the results and reading up on all the additional materials why this test could be faulty.
I’ve scheduled a call with a clinician to go over this and understand what to do next. To my surprise, it was a very seamless experience and I was able to talk to someone in an hour.
12:00 — Apr 21, 2020 — Clinician Call
Doctor: “Hi, I’m trying to reach Artur Kiulian”
“That’s me”
Doctor: “How can I help you?”
“I’ve passed COVID-19 drive-through test, it’s negative but I’m pretty sure I’m getting worse and my symptoms fit COVID-19”
Doctor: “Everyone is coughing right now and it doesn’t mean you have COVID, it can be a number of different viruses” — clinician started listing out possible viruses with similar symptoms.
“I understand that but is it possible to take an antibody blood test just to make sure? I’m not feeling well”
Doctor: “What are your symptoms?”
“I’m coughing very badly so that my ribs are super sore and it’s actually very hard to inhale without severe pain. I have 99.5 mild fever.”
Doctor: “We don’t consider 99.5 a fever, and your ribs hurt from coughing that’s right, that doesn’t mean you need to visit a hospital”
“Ok, I understand that and don’t mean to divert much-needed resources from the people that really need it but when should I be concerned and can I take the blood test?”
Doctor: “You can’t take the blood test because you’ve tested negative on swab test” [sic]
“Can you please explain???”
Doctor: “You are not legible to have an anti-body test because you don’t have COVID”
“Ok, I see. So what can I do?”
Doctor: “I can offer you some anti-cough medication, there is codeine syrup or tablets that..”
“I would prefer not to take anything to reduce symptoms unless I absolutely have to, can you please let me know what I should do to make sure the disease doesn’t progress?”
Doctor: “We don’t want to see you unless you have 102 fever and can’t breath by yourself”
“??? okay? but if I’m already there it would be too late, wouldn’t it…”
Doctor: “102 is when you should be worried”
“Ok, I got it, thank you”.
…
Needless to say, I felt somewhat less than assured after my conversation with the doctor. First of all, the doctor was obviously irritated. And while I understand this — there are hypochondriacs and people that are clogging up the system — I also felt a bit slighted.
And I know: the system optimizes around people that really, truly need the help — an unfortunate artifact of the insurance-based healthcare rife with lawyers and litigation to ensure absolutely no misuse of resources of any institution, ever, for any reason. That is what is really worrisome to me: the end-result of my ordeal was one little ICD code addition to my medical record: R05 Postviral cough present.
R05 is a valid billable ICD-10 diagnosis code for Cough. It is found in the 2020 version of the ICD-10 Clinical Modification (CM) and can be used in all HIPAA-covered transactions from Oct 01, 2019 — Sep 30, 2020.
It’s was also weird to me that the doctor was so casually willing to prescribe a narcotic drug, an actual opiate substance, as a way to relieve cough… But obviously, it’s not my area of expertise, only subjective surprise.
So I took the rest of the day to rest and understand what’s happening in the outside world since I was so focused on CoronaWhy in the last month.
My unpleasant discovery was:
There are many many many people with strong evidence for COVID-19 that have all the symptoms, don’t have a major fever and are tested as negative.I’m not the only person experiencing the brutal realities of the current system that has no clue how to deal with the current pandemic.
Finally, the results come back and you are told you do not have Covid-19. Now what? This is a real patient’s story. In fact, it is a lot of people’s story — at least some version of it. Across the world, people with signs and symptoms of Covid-19 are testing negative and wondering what it means. They are not showing up in the statistics, and they are left in limbo about what to do next.
After reading up on the topic it seems like current coronavirus tests may have a particularly high rate of being faulty. Research coming out of China indicates that the false-negative rate may be around 30 percent.
More & more people are posting about their personal experiences with negatives test results and very bad outcomes, which is not good at all.
And the other scary part is in the most recent research on the fact that the number of cases greatly exceeds the documented ones.
Estimate is 28 to 55 times higher than the 7,994 confirmed cases of COVID-19 reported to the county at the time of the study in early April.
55x higher. Crazy.
And the fact that people were contracting virus even before it was widely assumed to be a pandemic. Mid-January or earlier.
If they did not contract coronavirus through travel abroad, “that means there was community spread happening in California as early as mid-January, if not earlier than that,” Jha said.
So what’s next?
I’ve decided to dig through my memory and all existing data points to understand the probability of the fact that I was infected in the past month, (since there is still no hard evidence about the incubation period).
To take on a challenge like that I’ve compiled a spreadsheet that listed out the past 30 days and all the associated data points I’ve had collected, including my memories about experienced symptoms, from mild intestine disturbance to sore throat and sputum at some point.
As a result, I’ve realized how much I’ve been outside, it literally felt like a couple of times until I realized it was in public areas 13 times before the first symptoms appeared. I’ve taken the list of the most common symptoms from Wuhan, China analysis. I kinda wish my doctor followed this structure of assessment to be honest. Since I had 9 out of 13 most common symptoms.
Fortunately, there is an abundance of data about my routines. I’m quite obsessed with the “quantified-self” movement and even helped multiple technology pieces for digital accountability in wellness space.
And that’s when it really hit me hard, my self-realization of how bad everything was in terms of my actual daily actions.
I barely had any sleep, barely drank liquids, and was stressed out like crazy while working insane hours and having almost no physical activity…
Less than ideal. For any human. But especially for a human living through a pandemic and co-ordinating a near-thousand person group tackling a half dozen different cutting-edge machine learning problems.
But why? I kept asking myself. Not how. I knew how. I know the depths of self-neglect that come with hours upon hours of being in “the flow”. I knew (and know) better.
My unbounded curiosity and drive — my identity and the source of my flow — was the very thing that powered my neglecting sleep, not drinking enough water, not exercising, and lack of sunshine. I was so focused on the goal, I let the engine burn out.
And like many other things in our life, it was mostly caused by our innate human ability to magically forget about things that are not major events, things like sleep or drinking water are completely washed out from our heads after we do it.
So here’s what I did: I took a look at a snapshot of last 4 weeks of my life that were tracked by myself via VERB, a platform I’ve helped create and never really used or experienced benefit from it, until now.
Week of March 22
Week of March 29
Week of April 5
Week of April 12
As a result of this, I was able to see how much I slept which was an average of 21 hours per week, 35 fewer hours than needed. And yes, I had no clue, I knew it was bad but not that bad. Same with water. Same with managing my stress. The only data point that was good was food, except the fact that I was constantly losing weight day by day.
At this point, you may be wondering, what is going on? what is this article about? why are we looking at his sleep tracking?
The thing is that everything that you are doing or not doing is affecting your chances of contracting, developing, and surviving disease, be it COVID-19 or regular flu, cold, or any other viral disease.
Sleep deprivation
Yes, lack of sleep can affect your immune system. Studies show that people who don’t get quality sleep or enough sleep are more likely to get sick after being exposed to a virus, such as a common cold virus. Lack of sleep can also affect how fast you recover if you do get sick.
During sleep, your immune system releases proteins called cytokines, some of which help promote sleep. Certain cytokines need to increase when you have an infection or inflammation, or when you’re under stress. Sleep deprivation may decrease production of these protective cytokines. In addition, infection-fighting antibodies and cells are reduced during periods when you don’t get enough sleep.
Eric J. Olson, M.D. via MayoClinic
Water intake
Your body needs water to function. Increasing water intake can make your body process more efficiently, which is important for the immune system.
Drinking water can also improve cognitive function, which will make you more aware of your behaviors, potentially leading to healthier and safer decisions.
And please, stop spreading viral articles about the fact that drinking water won’t kill the virus, of course, it won’t but publishers are literally telling people they shouldn’t care about drinking water. A lot of people don’t read beyond a headline…
Food intake
The Western diet is characterized by a high intake of saturated and omega-6 fatty acids, reduced omega-3 fat intake, an overuse of salt, and too much refined sugar [1].
Most are aware that this type of eating, if not in moderation, can damage the heart, kidneys, and waistlines; however, it is becoming increasingly clear that the modern diet also damages the immune system.
The modern lifestyle is also typified by reduced exposure to microorganisms, increased exposure to pollutions, heightened levels of stress, and a host of other exceptionally well reviewed variables that likely contribute to immune dysfunction [2].
Therefore, while dietary effects on immunity should not be thought of in isolation, herein we focus on the body of evidence detailing the mechanisms for the Western diet’s impact on immune function.
Stress management
Research into the effects of stress on inflammation in clinical populations has demonstrated that stress exposure can increase the likelihood of developing disease, as well as exacerbating preexisting conditions
Your individual health decisions accumulate, either supporting or weighing down your immune system, which, in turn, increases/decreases your risk of COVID-19.
In my opinion, the best course of action is for us all to quantify these behaviors and monitor them for self-assessment and improvement. And this includes continuous documentation of any and all symptoms you are experiencing.
Because, if you’re anything like me, I have difficulties remembering what I ate the day before let alone what I felt and when and why.
Don’t believe me? Look at the graph below. It shows my steps (physical activity) compared to my computer time (sedentary activity). Yikes! Was I paying attention a bit early, maybe I could have taken a little better care of myself and avoided a lot of these awful symptoms? Maybe.
But there are no guarantees in life, right? However, nothing ventured, nothing gained. And to make that venture just a bit easier for you, I created a public spreadsheet for anyone to copy and use for their own quick COVID-19 self-assessment.
Here’s what you do: put in the dates when you were both outside of your home AND interacting with people. You can further enrich your own little dataset by entering some basic metrics (estimates are fine, people) about your sleep, water, food intake. How stressed you are. How much creative stuff you did that day. How much professional stuff. Whatever you think is an important determinant of your life and well-being.
What’s the point? There is no real point. As of this moment, I do not envision this individually-generated data to be useful to anyone but you. However, if someone is reading this and does feel that itch to create a predictive risk model using micro-level data, feel free to contact me.
Data Renaissance
The time for “good data” has come
By this point in the article, you are probably thinking I’m some weird guy that is sharing his own private medical and health data without understanding consequences. And I get it, because that’s how I viewed all the biohackers and quantified self people 10 years ago.
But now I’m not only a big proponent of collecting data about yourself to be able to derive insights and knowledge from it. I’m also a proponent of data ownership and sharing as a foundational basic freedom for any human individual.
Unfortunately, our society is built on the perception that data is bad, which is a result of constant misuse of data, or let’s say the use of the data for the wrong reasons.
We as human beings are generating so much data nowadays, with each tap on our screen, with each browser tab opened, with each swipe of our credit cards at the grocery store.
But where is all of this data? Can you see it? Can you delete it? Do you own this data? Is it used to help you in any way during this pandemic?
Of course, not.
Most of the data is used to manipulate you, influence your purchasing behaviors, make you buy stuff you don’t need, make you watch meaningless videos for hours on youtube, scroll Facebook feeds and engage with the systems that are built to hack your brains. If you are interested to learn more about this — check out Nir Eyal’s book Hooked.
Wait, so how does this connect to COVID-19?
The current pandemic wouldn’t get so bad if we would be living in a world of efficient collaboration, knowledge sharing, and proper use of data for collective benefit. If we would cooperate and not compete, in a world where data means value for the owner of the data, a real owner —the person who generates this data, not a company that collected that data.
Same as with your and my medical records that are impossible to obtain or share with institutions or researchers that need it, especially during pandemic situations. I’ve been fortunate to interview Randall Brown, MD with a huge experience in this space and talk with him on the topic of open data around 14:07 mark.
Interview with Randall Brown, MD
- Physician x 30 yrs academic medical centers
- Artificial Intelligence Lab consultant x 10 yrs
- Data mining and predictive analytics on Diabetes è Machine Learning on Fall Prediction
- Hx of SARS geospatial analysis by A. I. Lab
As we are seeing, the current healthcare system is not prepared to deal with the current scale of the pandemic. Universal medical record systems are a rare phenomenon and the current landscape of multiple record systems is making it impossible to make any progress on the data exchange that is so crucial given the current timing. Which is slowing down the research and any meaningful progress on exploring potential solutions to the pandemic.
The current timing is making it perfect to innovate and break up the biggest inefficiencies that exist in the healthcare system. The recent partnership of HCA with Google makes a statement on exactly that by creating COVID-19 National Response Portal, a first-ever open data sharing platform built by parties that wouldn’t traditionally be motivated to do so.
Though this initiative is still completely centralized and dependent on the processes and willingness of healthcare providers to cooperate. Which by itself is a very sensitive topic, because somehow our society accepts the fact that all our medical records are generated from our physical bodies but don’t really belong to us.
As a matter of fact, patients legally own their medical information but are often unable to obtain it due to how complex the process is or how many layers of bureaucracy they have to fight while trying. We are not able to freely share our medical records with a research institution that is in a desperate need of such, or an individual researcher that is working 24/7 to find a cure to a rare genetic disease.
All of these arguments sounded like “nice to haves” before COVID-19 pandemic but we are finally waking up to the harsh reality that the current pandemic is a result of our inability to assess and cooperate on the extremely valuable data that is currently mostly used for commercial purposes of insurance companies, pharmaceutical giants and other entities extremely motivated to keep data in silos.
We are observing a “Data Renaissance” period where previously unmotivated companies are forced to open up the channels of communication to establish meaningful cooperation, though no one is paying attention to the key stakeholder — the patient.
“We are observing a ‘data Renaissance’ period where previously unmotivated companies are forced to open up the channels of communication to establish meaningful cooperation,” Artur Kiulian, a Los Angeles-based artificial intelligence expert, said of the Biogen study.
Every single individual on the planet right now is a patient and we are all generating this valuable data that is still being siloed. It would take us years to change existing infrastructure within the scale of the trillion-dollar industry.
So why bother if we are holding all the keys to build a new one, the one that will empower individuals to establish their own channels of communication with motivated parties that will give patients a choice on how and where to send their data, instead of relying on tens of players in the supply chain hierarchy to make the right choice.
While HIPAA and other medical regulations supposedly cover the totality of data privacy concerns, we are seeing the consequences and costs to that system all too clearly right now. I believe patients have a right to a patient-driven platform, where these concerns resolve through a decentralized network of decision-makers. I mean, don’t you think that would be better?
Data for the personal and public good
Apparently, we are so locked in and biased on the external misuse of the data that we often forget the power data has in activating our self-awareness.
As a professor Agnis Stibe says, data is a mirror. It shows us ourselves and helps us to reflect on that image. And obviously, if the mirror is flawed, curved or skewed — you would have a distorted perception of reality.
You have to trust your mirror, be it a tool that collects the data or an institution that owns your data currently. Can you trust yourself to own your data and be responsible for it? That’s a philosophical question beyond the scope of this article, but it’s definitely the one to have a public discourse on.
Short clip on our conversation with professor Stibe:
Professor Agnis Stibe
Dr. Agnis Stibe is the founder of the Transforming Wellbeing Theory (TWT). At the Massachusetts Institute of Technology (MIT Media Lab), he established research on Persuasive Cities that encourage healthy and sustainable living. He believes that our world can become a better place thought purposefully designed urban spaces that successfully blend technological advancements with human nature.
But speaking of privacy…
What are the typical concerns people usually have?
Does it matter that I will share what I eat every day? Am I afraid someone will target an ad for salmon on Facebook? Do I care?
my food tracking, cause I’m too lazy to use my fitness pal and yes my wife is an amazing cook ❤
Does it matter if someone knows how much I slept today? Does it affect me in a bad way somehow if my colleagues know that I had only 4 hours of sleep today? If anything, it would only help everyone who interacts with me to understand that I’m more irritated, more stressed, and can’t deal with reality in the same way as if I had a full night of sleep. If anything, it can only help me change my behaviors by being accountable for my health. If my teammates saw how much sleep I was getting each day they would probably ban me from slack way sooner than I realized I’m in a bad state.
Does it matter that I publish my medical record online? What if I publish my entire 23andme genome publicly? Will someone be able to use that to create a bioweapon towards me? That seems a stretch to me.
“But, Artur” you’re thinking “Isn’t that exactly what’s happening?” And you’d be right to ask that question.
Because data aggregation and targeting is our reality. Back in the TV days, it was all about “eyeballs”. The TV executives were after as many “eyeballs” as possible for their particular station, because “eyeballs” translated to advertising revenue. And the more eyeballs you got, the more you could charge.
But now, it’s your opinions. It’s your love-life. Your presence on the internet is tracked, marketed, and sold to the highest bidder. With few exceptions (open-source programmers are angels), every app or website you use that is “free” actually isn’t. When you consider that your input, your participation in that platform is itself a piece of data. You generate data every day that you “give away” for free, just like how they provide the services “for free”. And it’s all happening with our explicit consent (have YOU ever read a EULA? Yeah, me neither). But why?
Well, there’s nothing better out there. It’s a free market. They’re private companies. All of these tired excuses and more.
Because that’s our reality. That’s how we live. Everything that’s “free” isn’t.
If anything, these aggregators can be used for both personal and public good. Imagine having a black box with all the data you’ve ever generated, it doesn’t matter where and doesn’t matter what data. The one YOU generated and the one YOU own and control. The one you can publicly or privately share, the one that can help researchers find a cure to COVID-19 or the one that can help researchers cure HIV and cancer. The one that will help extend longevity. The one that will help fight Parkinson’s and Alzheimer’s.
Is that really too hard to imagine? How come we still don’t have this in place? A number of regulations came into place to force companies to allow us to download this data, like GDPR and CCPA, but no way to control it actively and define what’s shared or what is not.
The only real attempt was by the creator of the Internet (seriously). Tim Berners-Lee created Solid which is a decentralized framework for complete ownership of data. But as you can see it is way too radical to be adopted within the current landscape of unmotivated actors. It is a “moonshot” type of project for sure.
I would love to interview Tim for our Altruistic Intelligence podcast if anyone wants that to happen please tweet at him and let him know this article exists and he’s mentioned here — pls click HERE.
So even though we are no there yet — this is a perfect time, time for awakening for all of us to start thinking about why we don’t have it and how to change this status quo.
And I’m going to reference this latest video of Russell Brand, without intentions to polarize anyone but this video really really really makes a point, it’s probably the first time I felt he’s a real person and not an actor acting for the sake of acting, which is amazing to see how we are going way beyond the things that mattered before and are opening up as real human beings.
I would love to interview him for our Altruistic Intelligence podcast if anyone wants that to happen please tweet at him and let him know this article exists and he’s mentioned here — pls click HERE.
Conclusion
To be completely honest, I don’t even know why I wrote this article anymore, at first I wanted to show other sick people like me that there is something you can do, even when healthcare system say that you are fine. But then I realized there is more to it, I wanted to showcase the underlying problems that caused us all to be here in the first place. Systemic breakdown and systemic failures are just symptoms of how dysfunctional our society really is and it’s time to change it.
It’s time to be radical about it, in a good way.
So please, let’s start from small steps — from self-awareness about yourself and the world around you.
Share this article with anyone and everyone you want and I hope my feverish, confusing writing makes some sense.