A life derailed by long COVID

By John Bolecek

At the height of the Omicron wave in January 2022, my entire family – me, my wife and two sons, then ages 3 and 6 – got COVID through my younger son’s daycare. I was 38 years old, fit, vaccinated and boosted; because I have asthma, I was worried about getting short of breath. I got sick, but the symptoms weren’t very bad; I had no trouble breathing at all, I just felt a little malaise and had a runny nose and cough. I continued to sporadically work from home, cook, clean and take care of my kids.

My cough and runny nose went away after a week, but I then started waking up after eight solid hours of sleep feeling exhausted, like I hadn’t gone to sleep at all. Pretty soon, I was feeling worse than I had during my acute infection. But I tried to carry on and returned to my job as the Statewide Bicycle and Pedestrian Coordinator at the Virginia Department of Transportation, where I’d worked for the past 11 years. That next weekend, as my family rode bikes together, climbing a hill to return home, something seemed very wrong; my heart was racing, and my legs felt weak. 

Over the next 2 months, I continued to wake up exhausted, lost 25 pounds, felt a constant malaise, suffered insomnia, and my heart rate would spike after eating certain foods or standing up. I was unable to resume my normal runs and bike rides because it felt like my muscles weren’t working properly. I traded my runs and my intense mountain bike rides for gentle walks. My doctors told me I’d feel better soon and that all my labs were normal. 

Naturally, I looked into my medical condition. My symptoms exactly match those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is a chronic condition with a low recovery rate that has no U.S. Drug and Food Administration approved treatments and is the most underfunded disease per patient burden in the US. 

ME/CFS is characterized by a marked drop in activity from previous levels, unrefreshing sleep, post-exertional malaise (PEM), and orthostatic intolerance, which presents with dizziness, headaches, and shortness of breath when standing. There are only a handful of ME/CFS specialists nationwide and very few take insurance. Though the prevalence is higher than Multiple Sclerosis (MS), it’s not taught in most medical schools. One common symptom of this condition, dysautonomia, manifests as a high heart rate on standing (also known as POTS) where the autonomic nervous system fails to function properly. Virginia also has very few providers offering dysautonomia care; VCU Health has a specialist in dysautonomia, however, there is over a one-year wait list to be seen.

One weekend three months after my initial infection I walked a mile further than I usually did, three miles instead of two, and took my son to a baseball game. The next morning I woke up in a horrible fog, barely able to think. I pushed through and over the next week, my body shut down. I went to work on Monday, but I wasn’t all there; by Friday I could not sit up straight. It felt like gravity was 20 times stronger, just smashing me into the couch. Picking up a spoon to eat felt like I was lifting a heavy weight. My leg muscles got so weak I could barely walk from the bed to the bathroom. The next week, I went on medical leave from work. 

I’ve never recovered to where I was before that energy crash and have been at a lower baseline ever since. I have to lie down 23 hours a day now and severely limit my activity so I don’t provoke more crashes. Even with careful pacing, I still provoke minor ones. My most limiting symptom is PEM, a medical term that means after expending too much energy all my symptoms get worse, I sleep worse and get weaker. I simply can’t recover like a healthy person, even after minor exertions.

This past fall I read that Senator Tim Kaine visited the Eastern Shore to walk a portion of a future rail trail I had been heavily involved in planning. Conducting fieldwork, I had walked that same section just before getting COVID. I wrote to Senator Kaine and told him I likely would have been there with him that day, except for my disabling long COVID. He wrote me back and told me his office hears similar stories from constituents all the time. Kaine has spoken publicly about his long COVID experience and is a sponsor of the Long COVID Support Act.

Research into long COVID is happening – slowly and misguidedly. In December 2020 Congress allocated one-time funds of $1.15 billion into research dubbed RECOVER (Researching COVID to Enhance Recovery) run by the National Institutes of Health (NIH) but, as health and medicine newspaper STAT News reported, they’ve used most of the money with little to show. 

Further, the clinical trials they have announced are unambitious. Most are drugs that many long COVID patients have already tried, things like sleep hygiene, melatonin, and heart medication. None of the therapies being trialed will allow patients to meaningfully address activity limitation, perhaps the most disabling long covid outcome. 

But two interventions being trialed are laughable: to treat brain fog there is a trial on “cognitive training,” which amounts to telling people who can’t think clearly to “try to think harder.” NIH is also running an exercise trial for “exercise intolerance,” which amounts to telling formerly athletic people like me, who now can’t recover from exercise, that they are either too ignorant or too lazy to have tried to slowly increase their activity levels. Neither are serious attempts to find or treat the underlying causes of long COVID. 

The exercise trial is especially infuriating to someone like me, who has based my entire life around being able to walk and bike places. My career for the past 16 years has focused on bicycle and pedestrian transportation. I chose to live next to the James River Park System in Richmond precisely so I could recreate and easily commute downtown by bike. 

Not a single significant research finding into the underlying cause of long COVID has come out of the RECOVER effort. And after 2024 there will be no more money dedicated to researching long COVID. I believe Congress and the NIH need to create a permanent office focused on researching the underlying cause and finding treatment for long COVID. Without a permanent program, there is little incentive for new doctors and academic researchers to specialize in this field. In contrast, Human Immunodeficiency Virus (HIV), which has a patient burden of 1.2 million in the US, gets over $3 billion a year in research funding. This funding has allowed many doctors and virologists to make careers out of researching and treating HIV. We need the same thing to happen for long COVID and ME/CFS.

Millions of workers are dealing with long COVID. Advocates call for expanding social safety net.

This July, the Bureau of Labor Statistics reported an increase in the number of people with a disability, up over 800,000 cases to a record 34 million, an all-time high. The latest Household Pulse Survey conducted by the National Center for Health Statistics and the Census Bureau states that 1.5% of all American adults are experiencing “significant activity limitations” and 5% are experiencing “any activity limitation” due to long COVID. Many also experience long COVID symptoms that disrupts their quality of life, but does not affect activity levels, like Sen. Tim Kaine, who experiences constant nerve tingling. Come 2024, if more long COVID funding is not included in the NIH budget, we could have a disease that significantly limits 5 million Americans – more than the number of Americans living with HIV, MS, Parkinsons, and ALS combined – with zero dedicated federal research dollars and zero staff at the NIH.

Some deny long COVID is even a biophysical disease, often claiming the symptoms are ‘real’ but are caused by problems with the patient’s mind or mental health issues. They’ll tend to cite a study by Dr. Michael Sneller at the NIH, who did some basic blood tests on long COVID patients compared to healthy controls and concluded the results were the same. Thankfully, other long COVID studies have looked deeper and have found a number of abnormalities. Assays have shown circulating spike protein in the blood of those with long COVID but not in healthy recovered controls. Other tests (often inaccessible to patients) have found unique vascular markers, mast cell activation, preload failure, and micro clots. Tests like transcranial dopplers, PET scans of the brain, tilt table tests, SPECT scans, Natural Killer cell function tests, and two-day cardiopulmonary exercise tests have also shown significant abnormalities in long COVID patients. 

A year and a half after contracting COVID, my life looks nothing like it used to. I was an employed, active father of two who loved taking his kids on bike rides, hiking, and adventuring. I lost my job in October of 2022 because, although I wanted to continue to work in a limited capacity, I could not return to work full-time. The Commonwealth does not have a way for disabled employees to continue to work part-time if the state agency declines to accommodate it and agencies are disincentivized from doing so because it uses up a full-time employment slot. 

I still have to lay down 23 hours out of the day. I can’t walk very far or stand up very long. I long to move but am forced to sit still. I am grateful I can still do things like read with my 7-year-old son. If you see me out in the world, I may look normal, but just know I’m still suffering, as are many others experiencing long COVID, and I’m expending my very limited energy budget in strategic ways so my family can function as normally as possible.