Treat the Patient and Not the Test Results
The burden of Proof Excludes 1 of 3 Long Haulers — A Patient’s Journey through long Covid
Michigan Medicine opened a long COVID clinic a few weeks ago, finally catching up with many such clinics that had opened elsewhere in the country since June 2020. I hoped that perhaps I would finally get comprehensive medical help, but the clinic webpage states that proof of a positive COVID-19 test is required for admission and incorrectly implies that only hospitalized patients develop long COVID. Like many other people, I initially had a mild case and all my test results had been negative. I called the clinic nonetheless: they allowed no exceptions. It shouldn’t be this way.
I first felt sick in April 2020. Doctors told me I didn’t have COVID-19 because my fever was not high enough, but I needed to stay home. I felt better for a few days, then came long COVID. While few of the symptoms I experienced were consistent with the disease profile advertised by the official channel in the U.S., they were all well documented in Europe. I knew I had COVID-19.
I eventually received a PCR test in mid-May 2020 and another in June, both negative. In July, my antibody test also came back negative, which wasn’t a big surprise as long haulers may be less likely to develop antibodies(*). I shared with my doctors research showing that my test results were meaningless because the tests had been administered too late, to no avail.
My experience as a long hauler has been scary and lonely. Like many other long haulers, my symptoms included inflamed toes, lung pressure, waves of low fever, diarrhea, short-term memory loss, vertigo, cranial pressure, nerve pain, tinnitus, crawling and tingling sensations in legs and arms, extreme sensitivity to noise and light, heart rate spikes, insomnia, full-body shivers, and internal vibrations — like the sensation of driving a car with poor suspension on an undulated sandy road.
From late April 2020 to late summer, I lost executive functioning. I couldn’t drive. Reading became impossible. I understood individual words, but cognizing a sentence was beyond my grasp. No matter how hard I would try, connecting two concepts was impossible. Understanding graphic information on a screen was just as challenging. Conversations were difficult since I forgot what was just said. Simple third-grade mental math was even too complex. My brain felt lost in a thick fog and had become so sensitive that the smallest sensory input was overwhelming. I surrounded myself with silence and darkness for hours at a time. I developed extreme fatigue to the point where showering was practically the only daily activity I could do. I spent most of the summer lying down, incapable of doing anything. Loss of temporal awareness made the time pass quickly.
I started to feel better in the fall, though I continued to experience severe relapses every few weeks. With time, I regained the ability to read and function socially, as long as I rested, and I have been able to contribute to some of our house chores again. But, I’m not fully recovered after over a year. Waves of symptoms still come and go. I suffer from debilitating headaches when I work, and my nervous system gets stuck in fight or flight mode if I attempt more than mild physical effort.
Before the pandemic, as a tenure full professor in engineering, I was at ease with juggling my many teaching, research, and service commitments. I was also an amateur musician and lover of the outdoors, from gardening to hiking tall mountains. Long COVID changed my relationship to nearly everything. I’ve learned to pace myself and never venture close to my energy boundaries at the risk of relapse. I’ve learned to reject the recommendations of every doctor who wanted me to exercise. I’ve learned to appreciate living while doing a fraction of what I used to do. I have no idea if I’ll recover completely or if long COVID will create new health issues later, which is why competent long-term medical support is so important.
The long COVID clinic seemed hopeful for me, but Michigan Medicine and many other medical institutions in the U.S. don’t see it this way.
To understand the context and impact of the long COVID clinic requirements, I’ll detail a few numbers focusing on the state of Michigan where I live, but the argument and conclusions translate to the rest of the U.S. and other long COVID clinics and research entities that apply the same testing burden.
The number of official cases in Michigan, ~1M, only includes those confirmed by positive tests or clinical diagnosis during hospitalization. However, we know that testing was unavailable for the majority of cases before April 2020 and testing in Michigan became accessible without a doctor’s note only at the end of May 2020 — nearly three months into the pandemic!
PCR tests also have a high rate of false-negative (~20% minimum). Some people may not get tested because they are asymptomatic, have no easy access to a testing site, or fear the stigma of the disease, and since we don’t know how many individuals were tested, the total number of tests administered (17M) is not useful either.
Instead, let’s use numbers recently reported from the United Kingdom: 150,000 deaths and over 1.1M long COVID cases, or 1.6% of the UK population. Using the same ratio of death to long COVID cases, the number of deaths in Michigan, currently 20,000, suggests that 150,000 or 1.5% of the state population may be long haulers. Furthermore, if we accept that 10% of all COVID cases lead to long COVID (though some studies suggest significantly higher rates), then 1.5M people may have had COVID in Michigan. This is 500,000 more cases than the official tally.
I also checked the reported numbers of deaths and cases. While it appears that the mortality rate went down during the most recent wave of March 2021 to about 1%, perhaps due to a higher number of younger patients being hospitalized and improved medical procedures, I assume that the mortality rate stayed the same for the first wave (March and April 2020) and the second wave (December 2020). Yet, the first wave saw at its worse ~1000 deaths per week with “only” ~9000 new cases per week or a mortality rate of 11% while the second wave had a mortality rate of a little over 2% with ~900 deaths per week but upwards of 50,000 new cases per week.
A basic correction to account for this discrepancy provides an estimate of 350,000 to 400,000 undetected cases, which is not far from the number of missed cases extrapolated from death and long COVID rates (above). So, as expected, most of the unreported cases appear to stem from the first wave, with a smaller fraction of undetected cases distributed over time.
Finally, I also wanted to compare the numbers of hospitalized and non-hospitalized long haulers. Using overall rates of hospitalization from the CDC (~5%), ~75,000 people in Michigan may have been hospitalized due to COVID since the beginning of the pandemic. Estimating that ~75% of those hospitalized develop long COVID, then ~55,000 of the hospitalized cases, which would also be highly likely confirmed cases, may be long haulers. So, about two-thirds or ~100,000 of long haulers were never hospitalized, consistent with the commonly reported observation that many long haulers started as mild cases. (**)
This simple analysis of cases is based on the number of confirmed deaths, that is those associated with a positive COVID test done in a hospital setting. You’ll notice that by design the onset of COVID-related deaths starts mid-March, exactly when testing protocols were made available. However, COVID had been spreading since December 2019. Therefore, my estimated number of cases (1.5M) and consequently the number of long haulers remain vastly underestimated. (***)
Now, the University has an opportunity to distance itself from widespread short-sighted and discriminatory practices, address an unprecedented need, and become a trailblazer in inclusive COVID research and care.
If the clinic intends to focus only on hospitalized patients, then more than 2 of 3 long COVID patients are excluded from care. Perhaps like me, you might have thought that the University hospital would have sent memos about the latest research to all physicians to keep them up-to-date on the fast-changing understanding of the disease and best practices so they could address the needs of their patients. Unfortunately, this wasn’t the case, and many of us had no option except to advocate for ourselves to doctors while battling crippling symptoms.
COVID can affect many parts of the body resulting in symptoms like mine. Research continuously points to the complexity of its mechanisms and origin. While hospitalized patients may be more likely to experience severe long COVID, the reality is that long haulers with mild acute phases can end up severely sick too.
Moreover, since men make up a higher portion of those hospitalized but more women may develop long COVID, the practice of only admitting hospitalized patients for long COVID care ends up excluding women disproportionally.
Assuming that the same fraction of undetected cases are found among long haulers as for all cases, relaxing the hospitalization requirement but still requiring proof of positive testing excludes 1 of 3 long COVID patients. Those left out are overwhelmingly long haulers of the first wave who were not hospitalized and could not get tested on time or at all.
To require test results when testing wasn’t available and to refuse patients a clinical diagnosis is to harm them by pushing them out of the medical system, out of sight. We don’t exist in the official tallies, we don’t exist in COVID research studies, and we don’t exist in the books of medical insurance companies. (****)
Perhaps it’s tempting to assume that after a year the long haulers from the first wave had enough time to recover and are doing fine. However, many are still incapacitated and unable to work due to a wide variety of symptoms. Some have lost their jobs. Some are unable to perform basic household chores. Hospitalized or not, positive test or not, all people need responsible, long-term, multidisciplinary medical support.
Without access to a multidisciplinary clinic, siloed medical practice fosters a vacuum for patients with complex, unsolved diseases like long COVID. We bounce from one specialist to another in search of answers, and more often than not, we’re told it’s all in our head. We’re prescribed antidepressants to make us go away. It’s perhaps no surprise that women and BIPOC are far more likely to experience such medical gaslighting. I was told multiple times last year that I was merely suffering from anxiety. I might have received the care I needed sooner and I wouldn’t be still searching for a team of doctors who can support me, had the medical structure allowed for communication and collaboration among physicians.
The University of Michigan has the capability to address the full scale of long COVID care. It’s not just a medical problem; it carries significant social and economic consequences. Consider that 1.5% of the Michigan population may be sidelined by long COVID and that the average age of long haulers is around 45. It affects not only working adults but children too. Students may need to put their education on hold or require significant disability accommodations.
We need politicians, administrators, physicians, and researchers to stop the discriminatory practice of requiring proof of positive testing and to recognize the human and social impact of long COVID.
We need doctors to accept each of us as partners in the search for adapted medical options and in defining our long-term care.
Additional notes since writing this article:
(*) October 2, 2021: Additional scientific evidence for the lack of antibodies among COVID Long haulers.
October 30, 2021: another research study on the lack of seroconversion.
(**) August 24, 2021: The American Academy of Physical Medicine and Rehabilitation estimates twice as many long COVID cases as I did: 300,000 long haulers in the state of Michigan alone and 11M long COVID cases in the US.
(***) October 25, 2021: Another analysis published in Nature confirm early community transmission before March 2020 and the signifiant under-reporting and detection of cases: “We find that community transmission of SARS-CoV-2 was likely in several areas of Europe and the United States by January 2020, and estimate that by early March, only 1 to 3 in 100 SARS-CoV-2 infections were detected by surveillance systems.” If this analysis is correct, the number of long COVID cases is truly frightening.
(****) July 20, 2021, the CDC approved the implementation of the new IC-10D code U09.9 (Post COVID-19 condition, unspecified) to document long COVID cases (also referred to in the medical community as “post-acute sequela of COVID-19”) — effective October 1, 2021.
October 6, 2021: The World Health Organization published its definition of long COVID: “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis”, requiring physicians to rely on clinical diagnosis rather than blind trust of testing.