Study finds 67% of individuals with long COVID are developing dysautonomia

In a recent study posted to the medRxiv* preprint server, researchers analyzed the traits of autonomic symptom burden in long coronavirus disease (COVID).

Study: Characterization of Autonomic Symptom Burden in Long COVID: A Global Survey of 2,314 Adults. Image Credit: Rolling Stones / ShutterstockStudy: Characterization of Autonomic Symptom Burden in Long COVID: A Global Survey of 2,314 Adults. Image Credit: Rolling Stones / Shutterstock

Background

While the global spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections has slowed, many people suffer long-lasting symptoms, a condition known as post-acute sequelae of COVID 2019 (COVID-19) (PASC), or long COVID. Even though PASC is not widely described, it is most commonly defined as COVID-19 symptoms that continue longer than 30 days.

PASC can manifest as a wide range of symptoms, many exhibiting autonomic characteristics. An autonomic nervous system illness, postural orthostatic tachycardia syndrome (POTS), strongly connected with a prior viral infection, is the most prevalent autonomic diagnosis correlated with PASC. Although autonomic dysfunction is a common consequence of long COVID, the PASC frequency and severity rates remain unclear. Furthermore, while online surveys of PASC patients exist, none have explicitly assessed autonomic symptom load in conjunction with other aspects of the condition.

About the study

The primary purpose of the present study was to determine the incidence and severity of autonomic manifestations in patients with PASC. The authors also evaluated symptom burden in PASC using well-validated questionnaires, which pre-existing comorbidities were linked to a heightened likelihood of autonomic dysfunction, and if the acute COVID-19 severity was correlated with the severity of autonomic dysfunction in this group.

The team performed a global online survey of 2,314 PASC adult patients employing various validated questionnaires, including the composite autonomic symptom score-31 (COMPASS-31), to assess for autonomic dysfunction. Both subjects who tested positive for SARS-CoV-2, i.e., test-confirmed, and those diagnosed with COVID-19 based only on clinical symptoms, i.e., test-unconfirmed, were included in the study. Additional analyses contrasting non-hospitalized and hospitalized individuals were conducted on test-confirmed COVID-19 patients. The researchers examined 53 distinct symptoms over eight different symptom areas to analyze PASC heterogeneity.

Results

The study results demonstrated that there were 87% female participants, higher than earlier studies with 68-75% female patients with PASC. In this adult population research, about 87% of PASC participants were between the ages of 31 and 65, comparable with the age distribution reported in prior studies. The most prevalent symptoms were brain fog, exhaustion, shortness of breath with exercise, headache, palpitations, body pains, tachycardia, and lightheadedness, consistent with previous research that found many of the same symptoms in individuals with PASC.

Correlations of the Fatigue Severity Scale, Neuropathic Pain Scale, Epworth Sleepiness Scale, General Anxiety Disorders Assessment, Orthostatic Hypotension Questionnaire and the Rand-36 to total COMPASS-31 scores. * A lower score on the RAND 36-Item Health Survey indicates greater disability.

Correlations of the Fatigue Severity Scale, Neuropathic Pain Scale, Epworth Sleepiness Scale, General Anxiety Disorders Assessment, Orthostatic Hypotension Questionnaire and the Rand-36 to total COMPASS-31 scores. * A lower score on the RAND 36-Item Health Survey indicates greater disability.

The test-confirmed SARS-CoV-2 cohort was more probable than the test-unconfirmed group to experience loss of taste and smell. A previous autonomic dysfunction diagnosis was documented in 8.3% of test-unconfirmed COVID-19 patients and 5.1% of test-confirmed patients. POTS was the most often reported autonomic condition, with a prevalence far higher than the expected frequency in the United States (US).

Depression, anxiety, history of vaping or smoking, environmental food or allergies, asthma, hypertension, autoimmune disease history, and obesity were the most often reported pre-existing illnesses in this sample. The frequency of pre-COVID autoimmunity and asthma in the current cohort was far higher than the overall US population, suggesting the potential that these medical disorders might be risk factors for PASC development. 

A COMPASS-31 score of above 20 was found in 67% of PASC patients, indicating autonomic dysfunction with moderate to severe. There was no difference in COMPASS-31 scores among test-confirmed non-hospitalized and hospitalized COVID-19 patients. Across all quality-of-life dimensions, both non-hospitalized and hospitalized SARS-CoV-2 patients reported severe functional impairment.

"Our study finds that 67% of individuals with Long COVID are developing dysautonomia. That’s an estimated 38 million Americans with Long COVID dysautonomia, and millions more around the world,” says Lauren Stiles, President of Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University.

Conclusions

According to the authors, this was the broadest study that used validated autonomic questionnaire scores to show that autonomic dysfunction was frequent in PASC yet available. 

In the current sample, the severity of COVID-19 did not link with the degree of autonomic dysfunction, implying that even mild SARS-CoV-2 infections can cause considerable autonomic dysfunction. Furthermore, the autonomic nervous system has a significant role in controlling coagulation pathways and immune function, two factors that seem to engage in long COVID. Hence, the researchers suggest that future research should concentrate on processes of PASC-linked autonomic dysfunction, their correlation to coagulation and immune biomarkers, and potential interventions that can enhance autonomic function.

Overall, the present study findings showed the presence of moderate to severe autonomic dysfunction in all PASC cohorts in this investigation, regardless of hospitalization status, implying that autonomic dysfunction was frequent among the PASC community and not always connected to the severity of acute COVID-19.

"Identifying dysautonomia in Long COVID is important because the autonomic nervous system plays a critical role in regulating immune function, inflammation, coagulation pathways, fatigue, exercise intolerance, cognition, and other factors that appear to play a role in Long COVID. Treatments that improve autonomic nervous system function may offer great benefit in treating the debilitating symptoms of Long COVID," explains Dr. Mitchell Miglis, Associate Professor of Neurology & Neurological Sciences at Stanford University.

"We need the National Institutes of Health to immediately address this crisis and begin funding research aimed at developing effective treatments for Long COVID dysautonomia,” says Jacqueline Rutter, a Dysautonomia International Board Member whose family has been impacted by Long COVID.

*Important notice

medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.

Source:
Journal reference:
Shanet Susan Alex

Written by

Shanet Susan Alex

Shanet Susan Alex, a medical writer, based in Kerala, India, is a Doctor of Pharmacy graduate from Kerala University of Health Sciences. Her academic background is in clinical pharmacy and research, and she is passionate about medical writing. Shanet has published papers in the International Journal of Medical Science and Current Research (IJMSCR), the International Journal of Pharmacy (IJP), and the International Journal of Medical Science and Applied Research (IJMSAR). Apart from work, she enjoys listening to music and watching movies.

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Comments

  1. Amanda Panda Amanda Panda United States says:

    So I have dysautonomia I have pots it was not due to anything other than other medical conditions I have like ehlers-danlos but I will say that people with pots no genuinely that pots can be caused by a car accident it can be caused by giving birth it could be caused by any type of sickness including a common cold or the flu so people getting pots or dysautonomia (which is the umbrella term for many autonomic nervous system disorders) is not something that we're actually surprised about in our own community this is something that we have expected to happen when we heard about covid-19 from the beginning that's why we were very vigilant about how important it was to wear our mask and that's why some of us are still wearing our mask even though we got vaccinated because we know that if we get sick we will become severely disabled. Some of us already got our stuff together we are doing really good medically and we figured out what works for our dish autonomy of personally but if we were to get covid which I did oh my God I cannot even explain how bad it was I cannot even explain how bad it was I'm not even kidding. I had to redo months almost a Year's worth of work to get back to where I was it was horrific. So this condition is extremely common it's probably one of the most common conditions right next to mass Cell activation syndrome and if you don't know what that is please look it up you might even have it if you have seasonal allergies. This condition is not rare it's only rarely talked about and covid-19 gave it the window of opportunity it needed to have in order to open a file put it on the table and have many doctors talk about it so that people can get proper care now because the proper way to care for someone with this autonomia is through making sure they get enough fluid, getting enough sodium and other electrolytes in their diet, and most importantly exercise even if you're exercising in bed and you slowly make your way out of bed using exercise bands maybe doing some other workouts with other things is also fine. All that matters is that you're getting cardio the most important thing to do with thid condition is cardio. You absolutely need a cardiologist you cannot have a regular doctor for this and some people even need a neurologist as well so always make sure that a neurologist and a cardiologist especially are on the table when you were thinking about this disorder and the things that you need to do in order to get better because I promise that you can somewhat treat this condition but there is no cure there's only you doing what you can to make sure your body is doing what it has to do. There are no days off for us no matter how much pain you're in because if we take a day or two off we will suffer for it some of us suffer more than others with this condition and some of us can afford to take a day off but you need to know your body first before you get to that point. Do not take a day off that is one day that you're setting yourself a week back because deconditioning is very easy for people with this autonomia. Please take all of these words into consideration and if you are a physician please do more work into it go to The dishonomia institute learn more about this because there's so much information that is free online for these conditions it is an umbrella term so there are many conditions under the dysautonomia umbrella including pots the condition that I suffer from. Please advocate for this condition as well it needs to be talked about more because there are too many people suffering from it silently because their doctors do not know what to do with them and call it other things including depression and anxiety because it looks like depression and anxiety but that's only the surface that's only what it looks like because you have to live with this. Sorry for talking so much but I really hope that this helped people understand it a little more.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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