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As a physician, I never thought that I would someday be lumped into the category of patients known as “not otherwise specified,” or NOS for short. This category is dominated by women suffering nonspecific symptoms that are inconsistently appreciated by clinicians who eventually conclude that the problem is entirely in the mind.

My induction into this group began on March 23. The emergency department in which I work had been seeing coronavirus patients, at first without our donning standardized personal protective equipment or following universal masking protocols. So when I developed a deep, dry cough, it was not outside the realm of possibility that I had contracted Covid-19. I notified my hospital’s occupational health department, even though I was personally convinced that my lungs were fighting a different, less serious respiratory virus, and that I would be back at work within days.

My conviction proved to be wrong. Despite testing negative for SARS-CoV-2, the virus that causes Covid-19, the course of my illness mimicked that of the “typical” coronavirus patient. The relentless dry cough and fatigue were followed by shortness of breath. My mentors, also physicians with whom I had informally consulted, were concerned that mine was a false negative test; at the time, the sensitivity of the swab was thought to be around 70%. But my chart was never flagged as “CoV-positive,” so my story was never counted in the growing statistics of employees affected by the disease.

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When I got sick, the guidelines for returning to work were that all symptoms must have resolved. After a long month of isolation, asking every week to be cleared for work, I finally insisted that I was ready. I was no longer short of breath while walking around my apartment. The remaining symptoms — weakness, muscle aches, and low energy — were nonspecific, subjective, and, therefore, things I could surmount. My persistent painful cough was given various names. Some providers definitively labeled it as postnasal drip, others said it was new-onset asthma. My colleagues and I settled on post-viral bronchospasm.

I was eager to get back to work in the intensive care unit. It was the end of April, and though Boston’s ICUs were still filled with coronavirus patients, we were beginning to think about what recovery might look like for those who had been critically ill. How many of them would suffer from long-term complications? When would they return to their normal lives?

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After working several shifts, I found myself unable to get out of bed one morning: the aches and fatigue were taking over. “Get up! Push through!” my mind scolded my body. My body and mind played this game for weeks. Every time I returned to work, hopeful to care for patients, my body protested, breathing hard and exhausted by the end of morning rounds.

Provider after provider unknowingly put me on trial, poised to accuse my body of falsification and interrogate it to discover alternate explanations. Without a positive SARS CoV-2 test, there was no simple diagnosis for my symptoms. When I asked them to look at the notes from my phone encounters with other clinicians, they used the same line I use on my patients: “It’s better for you to recount the story again, in your own words.” But I was tired of telling — and reliving — the story. I apologized for potentially wasting their time, as there might not be anything wrong with me, echoing the hesitancy of many women who are dismissed and fearful of being labeled as anxious or hypochondriacs.

Without seeing me in person or even virtually, nurses and doctors I spoke with on the phone posited the same diagnoses: post-nasal drip or asthma. Forced to take the stand, my body had to prove, to my mind and to everyone else, that it had been sick and it was still not well. “Despite my negative Covid tests, some of my mentors (who are also doctors) believe that I may have had Covid,” my body would begin its opening statement. My mind, trained by the best physicians and algorithms, was primed to prosecute. “Your story could fit, but we don’t have objective evidence. That’s why everyone is questioning; we don’t believe you.”

After all, that’s what we do to our patients. Shortness of breath could be any number of things. A productive cough might suggest pneumonia. Swelling in only one of your legs might indicate a clot there, which could mean there’s a clot in your lungs. Swelling in both legs could be fluid overload. Prove your diagnosis to me, and if your body can’t your lab work will.

Four months into my “illness,” no closer to any answers, I settled on “deconditioning, NOS.” If I took the right precautions — sleeping nine hours a night and dragging a chair around on rounds — I could last through the workday.

But around that time, clinics started to reopen and I finally met my primary care physician for the first time ever. As I walked with the medical assistant and felt short of breath again, I peeked at the oximeter: My heart rate had risen to 149, almost twice what it should have been, and my blood oxygen level gradually dropped to 79%, when it should have been close to 100%. “Is this why I’ve been feeling so tired?” my body asked.

My vital signs earned me a diagnostic work-up. It was the first time a health care provider had listened to my heart and lungs and ordered the basic bloodwork and imaging that have become standard of care for confirmed coronavirus patients. But the results of these preliminary tests, completed five months after my first symptoms, were nonspecific. I was given no clear diagnosis or treatment plan. The consensus reached by the specialists was that the oximeter readings, which repeatedly showed my oxygen levels dropping as I walked, were faulty. Case closed.

“See?” my mind retorted. “It’s always just been in your head.” Though I would advise my own patients in similar situations to seek medical evaluation, I instantly regretted visiting my primary care physician. If she had never taken my vital signs, then I would not have allowed my body to slip back into the belief that it had been sick in any way. I never wanted to be over-medicalized.

In May and June, the media began to cover a group of people calling themselves long-haulers. These people suffered coronavirus-like syndromes in March and, for months afterward, experienced prolonged symptoms of shortness of breath, fast heart rates, and fatigue. They started support groups in which they could discuss their lingering symptoms. Membership in these groups quickly expanded globally.

I held off on joining these groups, unwilling without a positive test to label myself a coronavirus patient. But curiosity eventually led me to join a long-haulers Facebook group. What I saw there was both illuminating and perplexing. I scrolled through post after post of individuals who had also gotten sick in March. Some initially had positive tests for SARS CoV-2, others did not, and many more had no access to testing at the time.

Regardless, their symptoms mirrored my own. While many complained of ongoing shortness of breath when exerting themselves (some with corresponding drops in their blood oxygen levels), they reported that their lab work and imaging, completed months after their symptoms began, were inconclusive. Most distressing, many turned to the coronavirus antibody test, which health care providers were hailing as highly sensitive, for answers, but to their surprise they tested negative. It was only at the end of July that researchers began to question whether antibodies remain detectable a few months after infection, a window many long-haulers missed.

The long-haulers circulated medical resources, but also stories of psychological anguish. Despite their symptoms seeming “typical” for Covid-19, some described feeling ashamed as their peers or health care providers dismissed their symptoms as stress-related or new asthma in the absence of positive tests. How was it possible that all of these people had strikingly similar experiences? Is our understanding of the virus’ biology lacking? Or is there another unrelated NOS condition spreading around the world?

The details of the long-haulers have been shared for months in social and popular media, but only recently entered academic medicine. We, as health care workers, have long been discussing the implications of post-Covid-19 care for critically ill patients, but we have barely addressed the needs of those who stayed home. We have not discussed how we will approach their prolonged debilitation; the financial and equity implications of their inability to work; and the psychological sequelae of feeling sick and cast aside. If we continue to reject that their symptoms warrant investigation and treatment simply because they are not understood, these people will inevitably be alienated from the medical establishment and forced, like other “NOS” patients, to seek compassion and care only from each other.

As readily admitted by many in the health care community, from clinicians on the front lines to journal editors, long-haulers evoke the same reactions that we have to patients with other medically inexplicable conditions like chronic fatigue syndrome or fibromyalgia. Namely, we assume that their symptoms are psychologically driven, perhaps implicitly by stress and explicitly by secondary gain, the advantages and attention one receives from others when physically ill. It is difficult to accept long-haulers as a group that warrants our attention.

I am still hesitant to identify myself with the long-haulers, unable to divorce my mind’s adherence to objective evidence from my body’s symptoms. But I share their struggles. Physicians are taught to weigh objective evidence over subjective experience. The patient’s history — her or his description of what is going on — is important, but the data (lab work and imaging) and the physical exam are more important. After all, patients are not always reliable historians.

But this mindset allows clinicians to write off the symptoms of those in the NOS category and, in doing so, heighten their suffering. Instead, perhaps we ought to humbly admit uncertainty and maintain the openness and curiosity required to ask the right questions. Whether the biology of Covid-19 infection turns out to be as serious as irreversible cardiac damage or as simple as profound deconditioning or stress reactions, these are all conditions that can and should be treated.

While the diagnostics we currently have for NOS conditions are imperfect, we must still care for the humans before us.

Pooja Yerramilli is a resident physician in the global medicine/internal medicine program at Massachusetts General Hospital in Boston.

  • Thank you Dr. Yeramilli for speaking out about your experience. My initial encounter with the virus was in March and my family and I recovered. Then I became very sick in late April and I couldn’t seem to bounce back. A host of now over 53 different symptoms play out each day in random sequence. My 2 viral and 2 antibody tests were negative. However, tests weren’t available back in March and then in April, testing was being regulated to one per household. I know now that all of my testings were done at all the wrong timeframes. Daily journaling has been large help to my PCP and pulmonologist, who both agree that my clinical diagnosis was/is the coronavirus. I also belong to one of the long hauler facebook groups you mentioned and they are my daily source of strength. They give validation that these many odd symptoms I have are not just in my head, because there are so many others experiencing the same. My medical career of over 43 years is now over, and I have resigned from my jobs I loved so much. I could not, in good conscience, chance that my once good memory that fails me so often now, might not remember all that I needed. I also couldn’t chance getting sicker than I am or that I could potentially be giving someone the virus, no matter my level of vigilance and adherence to the safety guidelines. Please continue to share your experience and I wish you healing.

  • I am in your group. Negative viral and antibody tests. Antibody rest was done about 6 weeks following initial symptoms. I think the T cell immunity is more dominating for some people. To prove history of infection we need a delayed sensitivity / T cell mediated skin test for COVID 19 like the TB test! Please help communicate this to this research scientists!!!

  • 20 yrs or so ago I was diagnosed with post viral malaise. This hits home. Feeling exhausted and dizzy on standing but guilty and a fraud for complaining. I have had a label of lazy for half my life.

  • Those of you deriding Dr. Yerramilli for her supposed failure to doggedly research (and, in so doing, discover the cause of her symptoms) are deeply confused. First of all, the differences between e.g. technical problems arising during the development of a microchip or some piece of software and the problems facing one who would like to diagnose a mysterious illness are vast. In particular, any clinician will know that in many cases no amount of research will yield a definitive answer. She will know what the likelihood of making a useful differential diagnosis might be, given the clinical diagnostic tools at her ready disposal, and whether or not a personal “deep dive” into the medical literature is likely to be fruitful. It’s simply a fact about medicine and human biology: we don’t know enough to be the sort of authoritative answer-providers patients hope they’ll find in us, and it’s not simply laziness that makes it so.
    From the perspective of a patient, too, these criticisms seem unfair. When one has an illness that defies diagnosis, and when one has sought the advice of the medical community for months without diagnosis or beneficial therapy, it is very hard to maintain the conviction that further investigation will be fruitful, and especially so when one has medical training sufficient to give one a more reasonable set of expectations wrt doctors’ (and medical science’s) supposed omniscience.

  • A clue to part of the issue may lie in a seemingly innocuous choice of words in this phrase, using “trained” rather than “educated” when saying ” trained by the best physicians and algorithms”.

    The word “training” is often applied to the process of leaning route standard processes to accomplish a task in a standardized fashion. Of course thats merely one connotation of the word, and obviously doctors are taught critical thinking skills and independent thinking to a certain degree. However it may be that the subtle difference in emphasis, on applying standardized processes, may be part of the problem.

    Those from other fields I know who were educated at the top science, engineering and law schools were educated to seek out all relevant evidence regarding problems they are tackling before prematurely jumping to conclusions. Even if the standard protocols people are “trained” to do that don’t involve taking time to engage in extensive testing, they’d have gone further. They’d have done whatever was necessary to get the most sensitive antibody testing and T-cell reactivity testing and whatever other methods they could find to determine whether there was any indication they had been infected with sars-cov-2 before choosing to make any public comment on the topic of their case and “long haul” covid-19. They’d have provided all the evidence they had available about whether they were truly “long haul” covid-19, or had in fact not been infected and were an example of confusing some other conditions with a popular trendy diagnosis that gets them public attention and sympathy.

    It seems irresponsible to fan the flames of public concern over the issue prematurely before determining whether the best available testing indicates you were infected or were not. Of course such testing might determine that you didn’t have it: and you wouldn’t have an excuse to be part of a trendy issue. Yet if you were truly infected, you’d be in a better position to help investigate your own case further and help the field make more progress towards determining what is going on with some claims of “long haul” covid.

  • Dr. Yerramilli,

    As you are employed by Harvard/MGH, you might take the time to wander over to the ME/CFS Center of Excellence there, run by Ron Tomkins, after reading David Tillers Virology blog. You might also look into the studies the NIH is doing on ME)CFS patients and COVID longhaulers.

    You might learn that ME/CFS is a complex, multi-organ system disease, involving the immune system, the nervous system, the endocrine system, etc. And that COVID long haulers are experiencing reactivation of other viruses, and the emergence of autoimmune conditions, like autoimmune postural orthostatic tachycardia syndrome. And that the body’s resources become drained, with the immune system not functioning correctly, with immunodeficiency and nutrient deficiencies and hormone imbalances, like adrenal insufficiency being common.

    Once you become educated, then it is easier to find treatments that help symptoms, and help you return to a more normal life.

    It is extremely disappointing that a doctor working for such a major medical institution professes such ignorance about an illness like this. Think of patients who aren’t doctors and aren’t attached to major medical research institutions and the plight they’re in. Once you become educated, then perhaps you can use a channel like this to be able to provide educated information on how to tackle a disease state like your experiencing and find treatments that help, so that patients like you don’t have to suffer so much.

    Words like NOS and idiopathic are gaslighting by doctors who are too lazy to find answers and leave patients to suffer.

    • Reality Engineer makes many worthy observations. However, he wrongly assumed Dr. Yerramilli has plenty of time to research her ongoing lack of good health. Oy! She is a Resident, and a sick one at that. Any resident in her field has days when they barely have time to gather meals, eat, bathe, sleep and commute to do it again. Intern and residency years are draining and stressful for even the most well supported residents. I can’t imagine a worn resident eager to sit down for hours to research beyond those needed to continue learning her field.
      To Dr. Yerramilli, persist! Thank you, for sharing. Like another commenter above, I think Covid-19 triggering of ME/CFS seems quite possible. Best wishes.

    • Quote: “You might learn that ME/CFS is a complex, multi-organ system disease, involving the immune system, the nervous system, the endocrine system, etc. And that COVID long haulers are experiencing reactivation of other viruses, and the emergence of autoimmune conditions, like autoimmune postural orthostatic tachycardia syndrome. And that the body’s resources become drained, with the immune system not functioning correctly, with immunodeficiency and nutrient deficiencies and hormone imbalances, like adrenal insufficiency being common.”

      To which I’d appreciate the opportunity to elaborate.
      I would implore you to consider the following:

      The gastrointestinal system contains most of our autoimmune system. If the person has a history of extensive stress, or acute stress, they may have compromised bowel barrier lining integrity. The autoimmune system will react to foods which penetrate that bowel barrier, otherwise known as leaky gut syndrome. Interestingly, that also contributes to hypersensitivity to a plethora of foods, chemicals and substances, and worn-down adrenal glands. Cushing Syndrome may develop over many decades, due to overstimulation of the adrenal glands each and every time that person ate, due to steroid production by the adrenals to inhibit the inflammatory response triggered by the partially digested food getting through the bowel/leaky gut barrier. Other systems involved, as quoted above, are, indeed, the nervous system, primarily the brain– since the autoimmune response that creates the leaky gut barrier also contributes to a leaky BBB in the brain; the net result is chemical sensitivity in the brain and many mental function challenges, such as bipolar and mood disorders. Another system involved in an autoimmune system run amoke in the gut, is the lungs. As both the bowel and brain barriers have been compromised, so also with the lung barrier. That leads to dyspnea, as fluid subtly collects in the lungs.

      Malnutrition will also be a component of leaky gut, since the barrier has been compromised along with the normal flora, which would normally provide enzymes for the stomach and pancreas as well as within the bowel, itself, to properly digest and absorb food.
      So, the answer is really quite simple. First, build up your gut. That provides the best barrier to infection and provides stability to your autoimmune system, lungs, brain, adrenals and nutritional needs.

      While I wouldn’t doubt that someone will be tempted to give me their lowdown of how much bulls$%# I have just typed out, I CAN ASSURE YOU THIS IS FACT. As, you see, I have lived it. The answer, as others have noted in THEIR BOOK, “Hidden Food Allergies, by James Braley MD– will help those who suffer from autoimmune problems to REBUILD THEIR BASIC BOWEL BARRIER AND FLORA, and bring their immune system out of hyper-drive. After that, a myriad of symtoms will clear up and they’ll be glad they did the basic work of re-establishing proper bowel function, rather than spend decades chasing symptoms around and NOT GETTING BETTER.
      While I do acknowledge that CoVid is real, intact barriers of the bowel, brain and lungs– and a properly functioning immune system which comes as a result of healthy barriers– are the beginning of health and of basic defense provided by the autoimmune system. It’s imperative to consider the boring basics, first, before looking for more dramatic causes.
      Build up the bowel, first. The rest of your body will thank you.
      All the Best, -Dr Be More

  • Thank you all for reading and engaging with the piece. I am grateful and humbled to hear your experiences and stories in response. In fact, a significant purpose of sharing this narrative, in which I described my difficulty reconciling my medical training with my own personal experience of illness, was to help spur a conversation. My hope was to help draw the medical community into a conversation about patients who, I have always felt, are unduly stigmatized – those with “NOS” conditions, who are often left without answers or treatments. My aim was to challenge our field as a whole to think critically about how to compassionately and effectively care for patients with these conditions, as we continue to learn more about the science and humans that face them. I am, again, grateful for your sharing your stories.

    • re: “are often left without answers”.

      As someone with a scientific background able to do research, despite not being a physician, when I encountered a rare (non-covid) issue in the past I found ways to contact specialists around the world and did whatever it took to find an answer. I realize that unfortunately most people don’t have the background knowledge or relevant skills to do so and shouldn’t be expected to: that should be the job of people like you. If a engineer or computer scientist had a problem with something within their field of expertise, they wouldn’t give up so easily. There seems to be major difference in cultures being illustrated, which accounts for part of the frustration for outsiders who can’t imagine why doctors give up so easily.

      Many times thats usually viewed by outsiders as due to the fact that doctors have limited time for each patient and there may be limited insurance coverage for testing. The oddity about your essay is that it illustrates a doctor who presumably should have lots of time to focus on finding answers to her own condition, and monetary and other resources beyond what the average person does to help them do so. Yet the same “undiagnosed” issue seems to have arisen, and its puzzling to those from other fields where such a thing isn’t common practice.

      Your actions in this case unfortunately illustrate apparent problems with the profession. Patients expect doctors to do whatever it takes to diagnose them even if they have a difficult to diagnose issue. Yet what you’ve written suggests you didn’t even bother to do get tests done or do the research needed to find out more about your own issues. So why would anyone ever expect you’d go all out to diagnose them? What is it about your training that led you to give up so easily and not be curious to investigate further and do whatever it took to find appropriate tests?

      If you want to help those outside the medical world, you might consider some introspection as to why you are exhibiting the traits people are finding problematic about the medical world that leaves them undiagnosed. Many people seem sympathetic to your description of being caught in the “undiagnosed” world. Others of us would be sympathetic if you were an outsider without medical knowledge or the skills to acquire it: but you aren’t an outsider. You didn’t push further to explore your own case. Maybe thats a common thing in the medical world. However outsiders to it see the writings of a doctor we’d never remotely consider using since she didn’t bother to collect obviously relevant data for her own condition. It suggests something wrong with the medical community that a doctor would actually admit what you’ve admitted in this and not be embarrassed about your lack of bothering to follow through to collect relevant data. That implies to outsiders that apparently other doctors would behave the same and not find your behavior strange, which suggests something wrong with the medical world.

      The implication is because its due to dealing with other doctors who were also not curious enough to bother collecting relevant evidence, and perhaps training to not question nor push other doctors but merely bow down before their “expertise” even when they are missing things. Doctors are service providers, and service providers work for the patient and need to be held accountable.

      If you are correct in your claim that you had such great training, the question is why that training apparently didn’t inspire you or those other doctors to be curious enough to go out and get tests that would seem obviously of use.

      An outsider to the medical skills who isn’t able to competently research potential diagnoses, tests, and treatments is at the mercy of their ability to find competent doctors to do that. In your case you claim to be a well trained physician: yet you give no indication you competently went out and did whatever was necessary to determine if you indeed were likely infected with covid using tests the general public isn’t aware of like T-Cell reactivity tests, better antibody tests, etc.

    • Dr Yerramilli, you may be interested in Dr David Tuller’s series “Trial By Error” on Virology Blog. His investigative reporting dives deep into the eminent researchers and their awful evidence-free research that underpins the “NOS” rubbish.

    • Dear Pooja

      Thank you for sharing and being genuine on what and how you are living this journey.
      I am living very similar symptoms and journey. I started having strong covid symptoms very early on (March 13).
      The stigma is what makes it difficult for others to believe us. It’s human nature they say. Only communication can fight it back. Please keep talking despite some unkind messages as a reply. That’s what stigma does… It’s fear of the unknown.
      Stay strong,

  • There appears to be a high similarity between ME/CFS and long haulers. If so the common element might be mitochondria damage by novel viruses. The remedy might be broad-spectrum antivirals and/or compounds that heal mitochondria damage. Research is limited here as any scientist that looks a virus cause for ME/CFS is probably risking his or her career

  • Thank you for writing this. I am partially recovered from CFS/ME and had 5+ years of disability with zero diagnosis. If nothing else positive comes from COVID-19, my hope is that those suffering from CFS/ME/longhaul syndrome finally get the research money that is desperately needed, and the support of their physicians. No, it is not in my head. It is in my body.

  • I had the same symptoms for the same duration after a bout with H1N1 ten years ago. After 6 months or so, I was fine. Your experience, which does not follow a documented SARS-CoV-2 infection, was in no way extraordinary or, to use the current vernacular, unprecedented.

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