The quick update is that I'm much better, perhaps 80% back to pre-covid normal, but there are still significant limitations. I have been recovering gradually and continue to see slow improvement.
Exercise tolerance: I was able to do some downhill skiing in the spring and mountain biking (downhill only) in the summer. I can go for long walks and hikes (slowly). But I cannot tolerate vigorous aerobic exercise. I tried biking uphill and made it about 10 minutes before I had to get off the bike and sit on the side of the trail. I was breathing so heavily that another biker passing me stopped to ask if he should call 911.
Medications and supplements: I stopped taking LDN (because was leaving me feeling drousy/groggy). I still need to be taking the enzymes (Nattokinase and Serrapeptase). I tried decreasing the dose of the enzymes and started feeling much worse after 2 or 3 days. So that means that I likely still have microclots caused by persistent spike protein (fragments) in my blood vessels. I find it frustrating that there is still no understanding for why the spike protein isn't gettig cleared. I don't believe the viral reservoir hypothesis becuase my second bout of long covid was triggered by the bivalent vaccine in May 2023 that includes mRNA only for the spike protein, not live virus. I continue to take the antioxidants (Thorne ResveraCel) in the morning and another dose in the evening on particularly active days. I continue drinking Nuun daily for electrolytes.
Heat intolerance: I must avoid hot and/or humid weather. Exposure to heat above 80 deg for more than an hour or so leads to an extreme reaction akin to heat stroke (nausea, dizziness, fainting, heart rate and blood pressure both drop). Cranking the air conditioning and drinking fluids/electrolytes helps to recover from the acute symptoms but it takes several days to fully recover. My working hypothesis is that this is caused by an ongoing dysregulation of the autonomic nervous system. Blood vessels dilate when exposed to hot/humid weather and the autonomic nervous system in normal healthy individuals compensates for this by controlling blood pressure and heart rate. That normal response is clearly compromised in me because both heart rate and blood pressure have dropped when this has happened.
Extreme sensitivity to allergens (likely including mold and/or microtoxins produced by mold): details to be added.
Radical change in lifestyle: I work 100% remotely and socialize only outdoors to minimize the risk fo reinfection which would leave me debilitated once again for a period of months. This includes going to restaurants only if we can be seated outdoors, going to hear live music only outdoors. My immediate family members continue to get vaccinated every time a new version of the vaccine is released. Jenny and I have been spending more time at our home in Utah. It is much easier for me: less croweded, much less heat and humidity in the summer, easier to be active outdoors. It is isolating and depressing at times for both Jenny and I to be living pretty much like hermits. Jenny travels back to NYC frequently which is important for her to feel like she can have a more normal life with family and friends. But that means that we are apart from one another for periods of time which is very difficult for both of us (admittedly a good problem to have that we like each other so much).
Air circulation: The only real solution to miminizing the burden of covid/long covid for all of us would be to change the standards for air circulation in commercial spaces, work spaces, etc. to be more like an operating room. If that were to be done, then we would largely eliminate covid, flu, common cold, and other airborne illnesses. It would of course be very expensive to retrofit the HVAC in every building nationwide. But compare that to economic cost of the covid pandemic and long covid, and the next pandemic (and there will be another one if we don't take steps, as a society, to avoid it).
In the meantime, we have HEPA air filters/purifiers in every room of our NYC apartment and our Utah home. On the rare occasion that I travel, I have a portable battery-powered HEPA filter. We modified the HVAC in our Utah home to add an ERV system that draws air from outside rather than recirculating air from inside. The ERV device does a heat exchange between the incoming air and the outgoing air to preheat the air before it hits the furnace in the winter and to precool the air in the summer. I have a portable CO2 sensor (Aranet 4) with me most of the time. Outside air is about 470 parts per million CO2. If the CO2 concentration in an indoor space is above 1000 ppm, then it's unhealthy for anyone (impacting cognition). But in addition, CO2 concentration is a pretty good proxy for air circulation. In a room with good air circulation, like an operating room or animal facility, the CO2 is unlikely to rise above 700 ppm. If you’re in a crowded room with poor air circulation then the CO2 concentration will be above 1000, which obviously exposes you to risk of reinfection. So you can assess your risk throughout the day just by carrying this little device with you.
The pandemic is not "over" and the health consequences of covid infection, regardless of vaccination status or symptom severity during the acute phase of infection, are severe for a fairly large cross-section of the population. There are striking individual differences in the health consequences of covid infection so any one person's experience with covid does not necessarily generalize to predict the potential risks to others.
There's compelling evidence that covid infection has caused an increase in diabetes, hyperlipidemia, gastrointestinal, kidney, pulmonary, cardiovascular, hematological, mental health, musculoskeletal and neurological disorders and an increased risk of death from any cause, with or without prior vaccination. These changes in health status can appear months after infection, again, regardless of vaccination status or original covid symptom severity.
This should not come as a surprise. There are innumerable conditions and diseases that have long been suspected of being viral-mediated. For example, it is now known for a fact that MS (multiple sclerosis, a degenerative brain disease) is caused by Epstein Barr infection (mononucleosis, the so-called "kissing" disease that most of us had in high school or college and that we all thought to be innocuous). Another example is myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS. Patients with ME/CFS have been struggling for decades with misdiagnosis, gaslighting, and a lack of effective treatment. However, the covid pandemic is the first time in modern history that, other than the flu, a single virus has infected many millions of people within a relatively short period of time.
Although the mechanisms are not entirely understood, the general idea is simple and straightforward. The covid virus infects the respiratory system by binding to a protein called the ACE2 receptor. That same protein is found in multiple tissues and organ systems throughout the body including the vascular system, gastrointestinal system, pancreas, kidneys, testes, etc. Not surprisingly then, different people develop different kinds of symptoms post-covid depending on where the virus got to. Some people develop inflammatory bowel disease. Others (like me) have a vascular physiology problem. Others develop diabetes. Or some combination of these diseases and disorders.
ACE receptors were first discovered in the vascular system. You've probably heard of ACE inhibitors, blood pressure medications. And you may recall that a large number of people died during the first wave from strokes and heart attacks. This is likely because of the virus binding to ACE receptors in the vasculature leading to blood clots and inflammation of blood vessels (called vasculitis) and the heart (called myocarditis which is well documented in a shockingly large number of people post-covid). That continues to be the case with subsequent variants, even for people who had no prior history of cardiovascular disease, regardless of age, vaccination status, and severity of the acute phase of covid infection.
I most likely first had covid in Feb, 2020 at the same time that my wife had a severe case, although I was barely affected. I was reinfected more than two years later, testing positive for covid on June 1, 2022 and experienced a relative mild case during the acute phase. But my symptoms transformed into what is considered long covid. For the first 4 months I could not drive myself anywhere, help cook dinner, walk a single lap around the the block even with my wife propping me up, or sit upright for more than an hour. The majority of my time was spent lying down. I was gradually improving and after nearly a year was operating at about 80%, but then I suffered an unfortunate relapse (see below).
One of the most compelling hypotheses about long covid is that it is, at least for some people (including me), a vascular disorder. There's compelling evidence that fragments of the covid virus (including the what's called the S1 subunit of the spike protein) can be found in individuals with long covid up to 15 months after the initial infection. What's supposed to happen when your body kills a virus is that it gets chopped up into little bits and those protein and RNA (or DNA) fragments get eliminated. But for an unknown reason, some people are inefficient at getting rid of some viral protein fragments. The presence of the S1 subunit of the spike protein in blood causes the formation of abnormal blood clots. In some people (including me) these blood clots are microscopic and cannot be detected using standard clinical tests. I have positive confirmation of these "microclots" in my blood because I participated in a clinical trial that was designed to detect them using fluorescence microscopy (not a standard clinical test).
The idea is that microclots attenuate the flow of oxygenated blood, resulting in widespread chronic hypoxia (low oxygen) which is obviously a bad thing.
On top of that, downstream cells and tissues adjust their cellular metabolism to survive in an oxygen poor environment such that any event or activity that causes vasodilation (e.g., hot weather, exercise) causes reperfusion toxicity (excess oxygen that doesn't get used in the usual way for metabolism, but instead reacts to make oxidants and free radicals which are toxic) leading to extreme fatigue that starts several hours after the triggering event and can last for days. People with long covid refer to this as a "crash", also called post-exertion malaise (PEM). It feels like you've been poisoned. Avoiding such a crash is the reason that people with long covid have to limit the number of hours that they can work or perform physical activity each day. In some people, the reperfusion may cause very severe and long lasting (possibly permanent) tissue damage. This is why people suffering with long covid need to be super careful not to overdo it. Some people crashed 2 or 3 years ago and have been deblitated (bedridden or wheel-chair bound) since.
And on top of that, in an attempt to compensate for hypoxia, the autonomic nervous system (which is responsible for controlling heart rate and blood pressure) goes into overdrive resulting in dysautonomia: elevated and wildly fluctuating heart rate and blood pressure along with light headedness, and sleep disruption. I have had the experience, while lying down and doing nothing, of finding my heart rate jump from its normal resting level of 60 to over 100 and/or my blood pressure jumping from 110/70 to 145/95. There have been periods of time when I have been unable to sleep for more than 4 or 5 hours per night (without taking benzodiazapines like Xanax).
For more information about Long Covid and its devastating effects on society, I recommend reading:
Millions have lost their jobs and health insurance, they are debilitated and destitute, they're isolated at home, and some are receiving horrible medical advice. Long Covid is recognized as a disability under the Americans with Disabilities Act (ADA) but many are finding it difficult to get accomodations. As explained in The Atlantic article (see link above), most people in our society are unaware of this, primarily because people with Long Covid are largely invisible (they stay at home, out of contact). If you had (prepandemic) a circle of 50 people you interacted with on a regular basis, you'll be aware of the 45 of them with whom you are still interacting on a regular basis, but possibly oblivious to the fact that the other 5 have disappeared because of Long Covid. On top of that, many people with Long Covid don't present themselves as such. This excerpt from the The Atlantic article really struck home with me, "Admitting that you could have a life-altering and long-lasting condition, even to yourself, involves a seismic shift in identity, which some people are understandably loath to make." As a consequence, many people with Long Covid are unwilling to share that that have a chronic health condition. Indeed, I was hesitant to do so for quite a long time.
Many people with Long Covid have experienced discrimination and gaslighting, in part because of the lack of awareness. See Self Advocacy below for some of my personal experiences. One of my goals in writing this blog is to help raise awareness.
I got a bivalent covid booster May 11, 2023 that triggered a relapse.
I had just returned to NYC after spending nearly the entire year at our home in Utah. I had been gradually recovering to the point that I skied 5 days in row just before flying back. I figured that we'd be interacting with a lot more people (after spending the previous year living like hermits) including a couple of our kids (in their 20s) who are both living in our apartment, and their girlfriends who are also here a lot of the time, all of whom are working in person and spending time with friends etc. So it seemed wise to get the booster for added protection against getting reinfected. We also have air filters running 24/7 throughout the apartment.
I had almost no reaction to the vaccine itself other than a slightly sore arm (similar to my experience with previous rounds of covid vaccines). But several days later I started to feel horrible, similar to how I was the previous summer/fall 2022, and it got progressively worse. After looking it up, we learned that the vaccine contains mRNA for some of the subunits of the spike protein including the S1 subunit. There's experimental evidence that the S1 subunit triggers formation of microclots. So by getting vaccinated, I filled my blood vessels with the S1 subunit, causing these abnormal microclots and inflammation (vasculitis is a term that's been popping up in the long covid literature and on twitter), which reset the clock back 8+ months for me to clear out the spike protein subunit.
There's some evidence that the symptoms of Long Covid may be more severe after each subsequent re-infection. That's been my experience. For the first month or so, I was in pretty severe pain throughout my body, which I attributed to vasculities. It felt kind of like have a migraine but everywhere, not restricted to my head. It was so bad that I was taking percocet regularly. It's now been 5 months since I got the vaccine and I'm still pretty limited. I can do 1 or 2 things per day. I'm hoping for the best but expecting that it will be Jan/Feb before I'm back to where I was at the beginning of May.
If you know anyone else who has (or had) Long Covid, you might suggest that they think twice before getting a covid booster.
I am not an anti-vaxer. Indeed, just the opposite. The covid vaccines are safe and effective for the vast majority of people. I got the original covid vaccine as soon as it was available and got boosters as frequently as possible. My entire family (immediate and extended) continues to get vaccinated. My wife got the new vaccine as soon as she could. I got the flu shot (as I do every year) and the RSV shot this year. But, as with any medication, some people are susceptible to adverse reactions. And I happen to be one of them so I cannot get vaccinated again (at least, not with any of the current covid vaccines) and I cannot get re-infected.
Bottom line is that you should get vaccinated unless you have (or had) long covid or a previous adverse reaction to the covid vaccine. Please please get vaccinated. And please please please wear a mask if you feel ill, particularly if your are interacting with vulnerable individuals. For example, everybody should be masked at a heathcare facility. Duh. I mean really. Doing so will protect those of us who cannot get vaccinated.
The key is that we need funding for research to understand the biological mechanisms underlying Long Covid and underlying adverse reactions to the covid vaccines. My own research program has been funded by NIH for more than 30 years and I've served on multiple peer review panels so I know how the system works. Biomedical scientists follow the money. If there were to be 10x more funding for Long Covid research, biomedical scientists with a broad range of experience and expertise would flock to it. Some of them would have ideas that would lead to key insights, enabling us to predict which individuals would have bad reactions to the vaccine, and critically how to better treat the underlying causes (rather than just the symptoms) of Long Covid.
For example, the clinical trial that I particpated in, demonstrating that most (possibley all) people with Long Covid (including me) have microclots, was not funded by NIH. Putrino and colleagues applied for NIH funding but their grant application was denied. So they scrambled and raised funding through philanthropy, primarily from a single individual. This exemplifies a serious and dramatic failure of the peer review system. There was already compelling evidence for the microclot hypothesis from research in Resia Preorius's lab, so this clinical trial should have been recognized as a high priority. But when funding is tight, the peer review process falls apart and frankly is little better than random. It depends on which 3 people are assigned to review the grant application, in competition with the other grant applications they have each been asked to review at the same time. All 3 reviewers have to rank a grant application as their favorite (or at least in the top 2) for it get funded. When budgets are not so tight, on the other hand, there's enough funding for all of the good ideas to be supported.
We are facing a massive healthcare, humanitarian, and economic crisis. Millions of people are debilitated and the numbers will keep increasing. Congress needs to allocate considerable funding for Long Covid (along with other post-viral chronic illness including ME/CFS) research and treatment. There should perhaps be a new NIH Institute devoted to long-term effects of viral infection. There should be clinics throughout the US (and the world) devoted to treatment. And, in the meantime while doing the research and developing effective treatments, there must be a safety net for those who are most severely affected.
A commentary published in Nature (Oct 2023) calls for a Long Covid moonshot with a budget of $1 billion per year.
You should see a cardiologist for an echocardiogram to rule out myocarditis. We don't want you dropping dead from a heart attack.
Find a physician who can assess you for dysautonomia (sometimes called POTS). It's a simple clinical test that involves monitoring heart rate and blood pressure while lying down, standing up, and perhaps while walking on a treadmill. The treadmill test, gradually increasing the incline, seems to be particularly sensitive. What should happen is that your heart rate should increase with the amount of incline. What happened with me is that my heart rate didn't respond at all to increasing the incline. Instead, my hands and feet turned purple.
You should get a very thorough full set of blood tests including testing immune system markers, testing hormone levels including testosterone which has been found to be a biomarker for long covid in some people (although not me), testing early morning cortisol which has been found to be a biomarker for long covid in some people (although not me), and testing for blood clots (this won't necessarily reveal the microclots but some people have large and dangerous blood clots post-covid). Large blood clots cause other problems. They are typically localized to one spot. But it's dangerous because if they move then they can block a critical artery resulting in a stroke or heart attack.
There is compelling evidence that some people with long covid have a serotonin deficit. There's a standard clinical blood test to check your serotonin levels. Your primary care physician can order it for you. If it's low (or on the low end of normal) then an SSRI (e.g., Prozac) would likely be helpful. My blood serotonin level is right smack in the middle of the normal range. I tried taking and SSRI, even so, but it didn’t help other than a very subtle decrease in anxiety.
Be very careful not to over-exert. Doing so can make it worse, in some cases much much worse. So take it easy. Do much less than you think you can/should do, both physically and mentally. It may take months for this to clear up. In my case, it had been 11 months before I started feeling ok (prior to the vaccine-induced relaps) but even then I was far from normal.
You should monitor your blood pressure, heart rate, and blood oxygen at least once per day if not several times per day. You can buy a blood pressure cuff on Amazon and blood oxygen sensor (fingertip). Keep a diary or spreadsheet with notes about what you had been doing prior to each reading of blood pressure, heart rate, and blood oxygen. My blood oxygen has been about 96% during the daytime. But I did an overnight sleep study (at home) and found that my blood oxygen at night dropped to 88% when I'm sleeping (with no indication of apnea, i.e., likely caused by the microclots).
I wear an Oura ring that continuously monitors heart rate. It also measures blood oxygen at night and sleep. One of the things I've learned is that my heart rate at night while sleeping is elevated after a busy/active day and that it may take a couple days to drop back down to the normal level. So its really helpful feedback about when I can or cannot be more active.
I wear compression tights most of the day which helps with light headedness simply by making it easier to get blood to the head.
I have an air pressure leg compression device for my legs that also helps with light headedness. The one I have is from Therabody but there are alternative brands that are similar. Just make sure you get one that is capable of high pressure (up to 100 PSI) and that can be controlled to add pressure sequentially from your foot up to the top of your thigh.
This may sound a bit crazy but you can do an experiment on yourself to see if reperfusion toxicity is part of the problem for you. Niacin (a vitamin) is a potent vasodilator. Take 1000 mg and about an hour later you'll feel hot and your face will flush red. This is harmless. Some people do it routinely as kind of a vascular "purge". But the point of doing this is that several hours later (or the next day) you might experience a crash. If so, then that's pretty strong evidence that you too may have microclots which are causing both dysautonomia and reperfusion toxicity.
Below is a list of medications and supplements that I'm taking, along with some explanations. You can get most of the supplements online from Fullscript. Others via Amazon. Only 1 is a prescription medication. But keep in mind that there are many different versions of Long Covid. Some people develop inflammatory bowel disease, others (like me) have a vascular physiology problem, others develop diabetes, and others have some combination of these symptoms. The medications and supplements listed below have been helpful for me and may be helpful for you if you too have primarily a vascular physiology problem.
This is an prescription medication. Naltrexone is an opioid receptor blocker that is FDA approved for treating addiction and alcoholism. The dose for addiction/alcoholism is 50-250 mg per day whereas I'm taking only 3 mg. This is an off-label use of Naltrexone meaning that its not (yet) FDA approved for dysautonomia. But there are a couple clinical trials that are currently being run to get it approved for dysautonomia and long covid. My primary care physician was willing to prescribe it based on the clinical trial protocol. It has made a huge difference for me to control the racing heart rate, which was also interfering with sleep. Here's a clinical trial in case your doctor wants to see it before agreeing to prescribe this medication.
I also take Nuun daily, or some other equivalent electrolyte which helps with dysautonomia.When I first started taking this, there was a very dramatic effect in which I felt horrible for a few hours and then much much better the next day. The microclots may have sequestered bits of virus and other toxins so all that goop was released which is likely what made me feel horrible. But new microclots keep forming so I need to keep taking these enzymes.
Unfortunately, nutritional supplements are not FDA approved. Although there's evidence for the efficacy of these enzymes, there's little to no information about possible adverse side effects from taking these enzymes at such a high dose over a long period of time. If they are powerful enough to break down amyloid fibrin microclots then its possible that they are also powerful enough to potentially damage tissue. Consequently, it would be wise to adjust the dose to take the minimum dose that yields the maximum benefit.
As explained above, reperfusion toxicity is likely responsible for what people with long covid and ME/CFS refer to as a "crash".
Many people with Long Covid have suffered not only with the devastating effects of the illness itself, and the healthcare costs (I've spent at least $20,000 out of pocket over the past 16 months including concierge primary care, nutritional supplements, off-label low-dose Naltrexone, etc.), but also with discrimination and gaslighting. Long Covid is considered a disability under the Americans with Disabilities Act. But not all employers are making accommodations for employees with Long Covid. Everyone with Long Covid has experienced gaslighting even from (uninformed) medical professionals. Here are some of my personal experiences:
Healthcare experience #1. When it first became clear last summer that I was not recovering normally from covid, I made an appointment at the Long Covid Clinic at the University of Utah Medical Center. I did so even though I was not at that time willing to admit to myself that I had a chronic illness. The appointment was a disaster. I met with a nurse practitioner who was the gate keeper for testing and intervention. What I wanted was just to get referrals to specialists (perhaps a cardiologist, pulmonologist, ENT, sleep specialist, etc.) to test for other possible causes that might be readily treatable. Instead what happened was horrible. This nurse, after asking a few questions, basically told me that my life (as I knew it) was over, that I'd likely end up on disability, and that I should see a social worker. Hearing this sent me into a tailspin. I was speechless and crying. Fortunately, my wife Jenny was with me, she took charge of the situation, asked for specific referrals, and then grabbed me by the arm and dragged me out of there.
Following the horrible experience summarize above, Jenny and I set about to take charge of my care. Very fortunately, we are both personal friends and colleagues/collaborators with David Putrino. Putrino is a neuroscientist and he manages a rehab clinic and research program at Mt Sinai Medical Center in NYC. Putrino was prescient at the beginning of the pandemic about the long-term health effects of covid, well before Long Covid was a "thing". He has since become a leader in research, treatment, and advocacy for long covid. Jenny sent him a text summarizing our experience at the U of U long covid clinic. He called back minutes later and "talked me off the ledge". We followed up over the next few days about a series of interventions (mostly nutritional supplements) to try. Simply making the decision to take charge and then coming up with a plan of action (whether or not it would prove to be effective) was extremely helpful.
Healthcare experience #2. Putrino also recommended a bunch of tests (mostly blood tests) that I should have done. And rather than go back to the U of U, I wanted to get local referrals (in Utah) for a cardiologist (to rule out myocarditis), someone to test me for POTS/dysautonomia, and some other specialists. So I wrote to my primary care physician through the "patient portal" requesting the blood tests and referrals. There was no reply. After 3 days, I called the office and I spoke to someone who found my message on the patient portal and would talk to my doctor about it. She called back later that day saying that I would need to make an appointment with the doctor to be seen in person. I said ok fine. But the next available appointment was two months out. I found myself once again speechless and crying. Fortunately, my wife Jenny was with me again, and she again took charge of the situation.
Before I had hung up from the scheduling nightmare, Jenny had already done a google search for "concierge primary care". Moments later I was on the phone with one of the staff members of the concierge practice and I had an appointment for the next day. The concierge practice has been great. The initial appointment was about 2 hours. The staff then escorted me downstairs to the lab for a blood draw (no waiting). I got referrals for a cardiologist, an ENT, a physical/occupational therapist to be evaluated for POTS/dysautonomia, and physiatrist. I'm in communication with my primary care physician, Dr. Wyatt Horsley, by text and email. Once we had established a relationship, I was able to simply forward to him links to research articles and clinical trials. He welcomed the input, read the stuff, and got back to me with a reasonable reaction. We've had a few virtual appointments (phone or video) but most of the interaction has been via text. The physiatrist, Dr. Robin Taubin, has also been great. She has decades of experience treating patients who have suffered concussions and patients with dysautonomia. And she too, like Dr. Horsley, has welcomed my input. Both of them have used what we've learned from my experience with other patients.
I of course realize that only a small minority of people with Long Covid or ME/CFS can afford concierge primary care. But everyone with Long Covid or ME/CFS deserves this level of attention and respect from their doctor(s). And, frankly, it hasn't really taken much of their time to work with me on my care, a few appointments and a few text messages. So it ought to be practical to provide and pay for this level of care for all patients with Long Covid or ME/CFS. Doing so would be particularly effective because it would concentrate experience and expertise in a group of physicians who would specialize in treating this group of patients. The Long Covid crisis is the direct result of government policy decisions at the Federal and State level. Those same government institutions should take responsibility for the cost.
Healthcare experience #3. I had an appointment with a cardiologist a week or so later. By then I had started doing quite a bit more reading about long covid and had learned about PEM and pacing (which is shorthand for "don't overdo it"), and about the microclot hypothesis and the possible link between microclots, reperfusion toxicity, and PEM. The point of the cardiology appointment was to get an echocardiogram to rule out myocarditis (which, as mentioned above, is shockingly common following covid infection). The cardiologist, quite reasonably, wanted to hear about my symptoms before ordering an echocardiogram. So I told him my story. He listened and looked at my labs and then tried to tell me that I was just simply recovering a bit slowly, that its not uncommon for it to take a while to fully recover after a viral infection, and that I should just try to get more exercise. This time, I was not speechless and crying. I was fucking pissed off. I tried to politely explain about the rates of myocarditis and about microclots, reperfusion toxicity, PEM, etc. I told him that Jenny and I are both biomedical scientists, that I'm an elected member of the National Academy of Sciences, and that we've read the literature and would be happy to share it with him. I even explained to a cardiologist that the covid virus binds to the ACE2 receptor, and that there are ACE receptors in blood vessels which is why ACE inhibitors are used to control blood pressure. But he was dismissive and again suggested that I should just be patient and get some exercise. Jenny saw the look on my face and actually literally kicked me in the shin. Remember the goal. I backed off and "agreed" with him but said that even so I would sleep better at night if we could rule out myocarditis. He ordered the echocardiogram, and fortunately the ultrasound tech was available and I was able to get it done right away.
Professional experience #1. Last January (2022), my colleagues in the Center for Neuroscience at NYU voted at a faculty meeting to require all departmental events (meetings, seminars, etc.) to be in-person only. During first year of the pandemic (before the vaccines were rolled out), NYU went full remote including teaching online. During the 2021-2022 academic year, the University's policy was for everything to be hybrid with masking indoors. For the 2022-2023 academic year, the University's policy was to require in-person teaching but with the option for students to attend via zoom if they were ill, and it was left up to individual departments to decide about how to handle departmental events. I was, fortunately, on sabbatical during the 2022-2023 academic year. I applied through the OEO and got approval to teach remotely this year (2023-2024) and I've reorganized my research program so that I can be fully remote. Because I was on sabbatical, I did not attend the faculty meeting at which it was decided to hold all departmental events in person. I decided to write a brief scientifically-focused review of the long-term health effects of Covid including stats and references, a description of my experiences with Long Covid, and a strongly worded essay about Long Covid being recognized as a disability under the ADA, with the hopes of convincing my colleagues in the department to reconsider. Jenny, of course, helped me write it. This was the first draft of what has become the Long Covid Blog that you are reading now. It worked. There was another discussion and vote at which it was agreed that in-person attendance would be strongly encouraged but not required, and that remote options (either joining a meeting by zoom or providing videos online of talks) would be made available.
Professional experience #2. Last spring (2023), I was invited to participate in a symposium at the annual Society for Neuroscience (SFN) meeting. This is a huge scientific meeting with over 30,000 attendees. It was cancelled in fall 2020, but has been a super-spreader event for the past two years (2021 and 2022). I presumed that there would be an option to participate remotely. But when we were later notified about the schedule for our symposium we were informed that presentations would be in-person only with the option for people to participate online to view the talks but no option for people present online. I updated the essay that had worked to convince my colleagues at NYU to allow remote online participation, added an even more strongly worded statement about discrimination under the ADA, and I sent it to the SFN President (Oswald Steward) and the SFN Council (Marina Picciotto, Marty Saggese, and Gina Turrigiano). But this time it failed. Here's the reply I received:
Dear Dr. Heeger
We appreciate the concerns you raise and we realize some people may be unable to present at the Annual Meeting because of this policy. Please know that Council extensively discussed the issues you raise, along with many other aspects of how best to put on this large and complex meeting in a manner that is equitable and scientifically excellent. It was a firm and unanimous decision of Council that there would not be a virtual presentation option in 2022 or 2023. Please know that Council will continue to think hard about best practices going forward as the landscape continues to change and evolve.
Best wishes
Os
Oswald Steward
Director, Reeve-Irvine Research Center
University of California Irvine
I followed up with the following reply (this time cc'ing David Putrino):
Dear Os, Marina, Gina, Marty (and cc'ing David Putrino, a neuroscientist and one of the leading researchers worldwide on long covid),
Please read the attached. There's a section about neurological and cognitive systems and another section about dysautonomia that are particularly relevant for neuroscience.
Of course I think you've made a bad decision here and I'm pretty confident that over time you will realize that it was a mistake that you'll regret. It's particularly disappointing that a scientific society would simply ignore the science. I'm a national academy member so I'll be fine but it's really sad to think of the impact of such blatant discrimination on junior scientists and grad students who are likewise affected.
Sincerely,
David Heeger
Julius Silver Professor of Psychology and Neural Science
New York University
Putrino jumped in immediately with this very strongly worded follow up:
Hi all,
David - thank you so much for looping me into this.
Os, Marina, Gina and Marty, I would like to echo David's sentiments and urge you to reconsider. As you can see from the excellent review paper that David has shared and my own most recent invited position piece on Long COVID at Health Affairs (https://www.healthaffairs.org/content/forefront/long-covid-incidence-impacts-and-implications), Long COVID remains a clear and present issue for many. After three years of a global pandemic, we are in a new world with new challenges. As much as we wish to return to our pre-COVID lives, the SARS-CoV-2 virus has left an indelible change on our society. Many people now live with chronic disability due to Long COVID, and I am personally dismayed to learn that the Society for Neuroscience would not acknowledge such a reality by providing disabled attendees with the opportunity to present or access virtual content when the technology is readily available that will allow you to do so.
Many people with Long COVID (a disability recognized under the ADA) are SfN members. Section 504 of the Rehabilitation act of 1973 clearly "forbids organizations and employers from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services". Your disabled members have a reasonable expectation to be able to access and present content associated with the memberships and conference registrations that they have paid for. Furthermore, since SfN is an international conference, I would similarly remind you that the United National Declaration of Human Rights includes "the right to freedom of expression, including freedom to impart information and ideas through any media and regardless of frontiers". I would urge you not to persist with policy that falls so far short of declarations regarding fundamental human rights of your members.
As David has underscored, both he and I enjoy great privilege in that our careers do not hinge upon being able to present or physically attend your conference. But from my clinic alone, I know of at least 5 young neuroscience graduate students and post-docs who will not attend SfN this year due to the lack of accomodations, and they are gravely aware of the impact that this will have on their careers. As fellow leaders, I urge you to please consider the future of our profession and ask that you do not punish disabled neuroscientists by creating additional barriers to their career progression.
In short, you have an opportunity, here and now, to be a global scientific organization that shows other organizations what it means to follow the principles of science, equity and inclusion: to be an aspirational organization in the face of rapidly changing and uncertain times. There was a time in my career when I would have considered it to be among one of the highest of honors to be invited to share my science at an SfN annual meeting. Please continue to lead policy that would make you worthy of such respect.
Sincerely,
Dr David Putrino, PT, PhD
Director of Rehabilitation Innovation,
Mount Sinai Health System
Professor of Rehabilitation and Human Performance,
Icahn School of Medicine at Mount Sinai
But to no avail:
Dear Dr. Putrino,
Thank you for your follow-up. We understand the seriousness of long
Covid. This is one of many chronic health issues that impact on
decisions of whether or not to attend the SfN Annual Meeting. Council
has discussed these and other issues and it was a firm and unanimous
decision that virtual presentation would not be an option in 2023.
Council will continue to evaluate possible options for the future.
Best wishes
Os
So I had no choice but to drop out and arrange for one of my colleagues to take my place. My understanding is that it would not be worth the effort to file a lawsuit under the ADA because SFN is not my employer. But I am hoping that posting this email exchange will embarrass these people publicly. And I would love to volunteer my time to help with a lawsuit (or class action lawsuit) against an employer that discriminated against individuals with Long Covid by refusing to provide reasonable accommodations. We need to identify a good test case and find a lawyer willing to pursue it.
Copyright @ 2023, Center for Neural Science, New York University