The COVID-19 pandemic has been the biggest disruption to healthcare in our lifetimes. A year into the pandemic, thousands of patients, many of them health care workers, experience lingering symptoms 4-12 weeks or more after SARS-COV-2 infection. Will long-COVID activists, especially practitioner-patients, finally force healthcare systems, clinicians and medical researchers to confront post-viral and similar chronic syndromes they have shrugged off for decades? In advancing our mission, will a focused response by healthcare systems and researchers to post-COVID syndrome help illuminate the invisible epidemic of chronic immuno-inflammatory disorders (CIID) including autoimmune and autoinflammatory diseases?
What is post-COVID syndrome, aka Long COVID?
COVID “long-haulers” are people (so far 80% of them female) who have lingering (at least 60-90 days) symptoms after notional recovery from SARS-COV-2 infection. Such symptoms include severe fatigue, brain fog, shortness of breath and post-exertional exhaustion (exercise makes the fatigue worse). Most long-haulers also suffer from mood disorders, particularly anxiety and depression. Jargony symptoms include dysautonomia (dysfunction of the autonomic nervous system that controls involuntary functions like breathing and heartbeat). Another is postural orthostatic tachycardia syndrome (POTS–irregular heartbeat and blood pressure bounces upon standing up).
Sound familiar? Those of us living or working with autoimmune disease saw immediately that these symptom clusters look like those experienced early in the course of chronic autoimmune diseases, especially before body-part specific symptoms emerge. Long-hauler symptoms also resemble Myalgic Encephalitis/Chronic Fatigue Syndrome/Systemic Exertion Intolerance Disease (ME/CFS/SEID), another post-infection chronic inflammatory condition.
“The stories I have heard from patients with Long COVID sound remarkably similar to those from patients suffering from autoimmune diseases. The Autoimmune Registry reports that fatigue is a symptom of 47 of the autoimmune diseases in our list of diseases, affecting as many as 18 million people. This fatigue is far beyond what healthy people think of as fatigue. It is debilitating, preventing a person from doing basic activities, and it is unpredictable, making it difficult for patients to plan their lives in a normal way.”Aaron Abend, founder of The Autoimmune Registry
Haven’t we seen post-viral syndromes before?
Patients with symptomatic COVID not requiring hospitalization generally take 2-6 weeks to recover. However, an increasing number of patients experience debilitating aftereffects that linger 2-3 months after infection and some even longer. Activist patients call themselves “long-haulers” and the syndrome “long COVID.” Alternatively, calling it “post-COVID syndrome” places this phenomenon within a historical context. That history includes post-polio syndrome (1940s-1990s), myalgic encephalitis/chronic fatigue syndrome (ME/CFS) (~1970s on) and obviously, post-SARs syndromes (1889, 2003). Most importantly, it also includes many autoimmune diseases that appear to be triggered or exacerbated by various viral infections.
Unlike the AIDS pandemic (which unfolded over years), during the early months of rapid spread of COVID-19 in 2020, concerns about overwhelming hospital and ICU capacity led to massive social lockdowns. Unlike HIV, SARS-COV-2 emerged into a digital world of social media and online science. This means fast-moving waves of infection have been observed in near-realtime. COVID-19 shone a bright, fast-moving spotlight on phenomena recognized but largely ignored for decades. That includes the invisible epidemic of autoimmune, autoinflammatory and related chronic inflammatory diseases.
Distressingly, many COVID long-haulers were initially dismissed by their primary care practices in ways that ME/CFS and autoimmune patients are all too familiar with. The usual reaction by primary care is to deny, downplay, or refer to psych. If there is any silver lining to the many healthcare workers infected with SARS-CoV-2, it is that those people have been in the vanguard of patient advocacy. Many now recognize for the first time the barriers to diagnosis and treatment that autoimmune, and ME/CFS/SEID patients have struggled against for decades.
Why post-COVID syndrome caught healthcare by surprise
“While many are focused on the near-term, acute outcomes associated with COVID-19, for some patients, the consequences of infection can linger for months or years. The medical community is now tracking emergence or exacerbation of chronic diseases, including autoimmune disease, following SARS-CoV2 infection. Our group uses both clinical and social determinants of health information to define patterns of disease that are a consequence of viral respiratory infection and to identify patients most at risk for poorer outcomes, including long-term disease.Chase Spurlock, founder and CEO of Decode Health
But why are healthcare systems so ill-equipped to deal with post-viral syndromes, including long COVID? The US insurance-through-employers model and fee-for-service (FFS) practices, even ACO and payvider business models, all face high clinical labor costs. This has prompted them to increasingly limit time primary care physicians (PCPs) spend with patients. This includes both minutes in the examining room and number of encounters per year. If PCPs have only 15 minutes for each patient, once or twice a year, it is tempting to refer people with vague symptoms, complex diagnoses and emotional distress to specialists or mental health rather than embark with them on a long and costly patient journey. Furthermore, most of these patients do have mental health issues, e.g., mood disorders. However, that doesn’t mean they don’t have real illnesses, of which the emotional distress is another symptom!
Government-run single payer systems, like the United Kingdom’s NHS and Canadian Medicare, are no better positioned to recognize and cope with expensive diseases not already within their ambit. Furthermore, welfare systems facing a surge of disabled people (some of whom may be malingering) fall back on denial or ally with whatever medical theory offers help at the lowest cost.
A history of neglect of post-viral syndromes
We encourage stakeholders to use data analytics tools to proactively test and educate these individuals to find and mitigate disease risk. Additionally, understanding and addressing clinical, social, physical, and environmental risk factors can promote resilience to viral respiratory infections in patient populations and communities in the future.”Chase Spurlock, founder and CEO of Decode Health
Furthermore, history shows that healthcare systems have been remarkably uninterested in pursuing these conditions. From research to medical education to clinical practice, post-infection syndromes have been neglected, defined away as hysteria, PTSD or mood disorders and often ignored or denied by frontline clinicians. There are striking parallels with autoimmune and less-well characterised immunological syndromes. All this makes such epidemics invisible to the system.
What’s more, the history of post-polio and other post-viral syndromes, especially ME/CFS/SEID is discouraging. We’ve seen short media, public and government attention spans. Of course, this leads to limited funding, little interest by researchers and no education in medical schools. To be fair, these are difficult diseases to study, requiring bleeding-edge understanding of immunology, microbiology, virology and genomics. Nevertheless, a look at the history shows that once a particular epidemic ends, almost everyone in public health and research forgets about the long-term casualties to focus on the next novel threat. We will provide more historical detail in the next post.
Barriers for autoimmune attention, research and care
This is especially true for chronic immune-related disorders for many reasons. For starters, our scientific understanding of immunological disorders lags behind that of cancer. This is even though CIIDs and cancer are similar in terms of cost and human suffering. Research funding and clinical guidelines for autoimmune diseases are stuck in historical silos by medical specialty and body part. For example, rheumatologists diagnose and treat rheumatoid arthritis (RA), a joint disease. But many RA patients have skin, heart and GI symptoms that fall under different medical specialties. In contrast to cancer, siloed specialties make patterns such as prior viral infections across diagnostic categories less visible and under-researched. Thus, there are few robust guidelines for clinicians. Moreover, building an evidence base has been slow. This contributes to the neglect of these topics in medical education.
Therefore, even for well-recognized autoimmune diseases, the patient journey from symptoms through diagnosis to treatment is too long. It often takes years, repeated diagnostic procedures and many specialist encounters. Once diagnosed and in treatment, most such patients need long-term care management. This often includes costly drugs with distressing side effects, as well as ongoing coordination between PCPs and specialists.
Long-hauler activism = patient power?
“COVID has amplified awareness that the struggle facing people living with autoimmunity is real. The scientific and medical community broadly understands that viruses and environmental factors like nutrition and lifestyle can play a significant role in exacerbating autoimmunity issues in those who are already genetically vulnerable. That’s exactly what we’re seeing with COVID long haulers. These people had not yet been diagnosed with an autoimmune disease but are now presenting with symptoms usually indicative of an autoimmune disease. By addressing COVID long haul as an autoimmune disease, we can finally crack open the field of preventative autoimmunity. Furthermore, we can develop our understanding of triggers across the trajectory of the disease to both prevent and reverse risk.”Mette Dhyberg, founder of Mymee
By the historical standards of autoimmune activism and AIDS, COVID long-haulers got their patient advocacy movement launched in record time. In a few months, they’ve raised awareness of long-haul cases and the sorry response by too many clinicians. Thank social media, where bottom-up, grassroots movements gain momentum fast. This is even more true now, when more people than ever are glued to computer and phone screens. Furthermore, front-line healthcare workers have been hard-hit by SARS-CoV-2 (although most of them are not getting it from patients!). Many have post-COVID syndrome themselves, adding authoritative voices with medical knowledge to the groundswell of activism.
Cancer as a model for awareness, R&D and clinical care
Cancer is 50 years ahead of autoimmune disease in terms of public awareness and research focus. This is because cancer is not treated as 100+ individual diseases competing for attention and funding. On the contrary, cancer is a unified category with its own research and clinical specialty, oncology. Over the past 70 years the USA launched two national anti-cancer awareness and fundraising campaigns. (Wars on Cancer in 1947 and 1972).
We hope research on the body’s long-term responses to COVID infection can shed light on the way autoimmune diseases arise. This res. Ones that could interrupt the complex biological chain that leads from viral infection to autoimmune and autoinflammatory response.Aaron Abend, The Autoimmune Registry
As we’ve seen in our own efforts over the past decade to illuminate the Invisible Epidemic and autoimmune as a category, just getting media and public visibility is essential. There is no cancer-like unified campaign for chronic immunological diseases, just smaller campaigns for individual diseases such as lupus or RA. Even the semantics are inconsistent and unhelpful, with terms like autoimmune, autoinflammatory, chronic immuno-inflammatory and chronic inflammatory all in play. Does long COVID offer an once-in-a-lifetime chance to raise awareness, funding and research for ALL immunological disorders, many of which are triggered or exacerbated by viral infections? Can we seize this opportunity to make the medical community and healthcare systems pay attention this time instead of sweeping such chronic conditions under the rug?
SARS-CoV-2 infection produces a wide range of autoantibodies
A leading theory on post-COVID syndromes is that some hosts’ response to infection includes developing autoantibodies that cause self-damage. Supporting that hypothesis is a December 2020, preprint paper on autoantibodies suggesting a common mechanism of action between long covid and autoimmune diseases. Here is a link to a Times of Israel news item describing the study. And here is a link to the preprint itself.
“We found that COVID-19 patients exhibit dramatic increases in autoantibody reactivities compared to uninfected controls, with a high prevalence of autoantibodies against immunomodulatory proteins including cytokines, chemokines, complement components, and cell surface proteins.”medRxiv 2020.12.10.20247205; doi: https://doi.org/10.1101/2020.12.10.20247205
Authors: DrBonnie360 & Ellen M Martin
We approach these thought leadership posts from our two different multi-lens perspectives.
- DrBonnie360: clinical dentist, Wall Street analyst, patient advocate, and digital health consultant.
- Ellen M Martin: evolutionary life science, finance & investor relations, marketing, communications consulting & writing/editing.
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Disclosure–we have done paid consulting work for IQuity (Decode Health’s predecessor company) and Mymee.