Long-COVID Autonomic Dysfunction
Do you know someone who had COVID-19 who has not fully recovered? Do they have one or more of the following symptoms? If so, they may have recovered from COVID-19 but are suffering with Long-COVID Autonomic Dysfunction.
• Fatigue • Cognitive Impairment • Weakness • Headache • Dizziness • Shortness of Breath • Palpitation • Chest Discomfort • Sleep Disturbance • Difficulty Standing • Abdominal Pain • Nausea • Diarrhea • Joint and Muscle Pain • Anxiety or Depression • Skin Rashes • Pins & Needles Feeling • Earache or Ear Ringing
WHAT IS LONG-COVID AUTONOMIC DYSFUNCTION?
Long-COVID, also known as Post-Acute COVID Syndrome, is the development of chronic and potentially debilitating symptoms which may include fatigue, cognitive impairment, weakness, headache and dizziness among many others. Symptoms of Long-COVID occur in multiple organ systems and present heterogeneously following an acute COVID-19 infection. Several scientific studies have hypothesized the virus may be causing dysfunction of the autonomic nervous system1 2 3.
“While most people with COVID-19 illness recover completely, others continue to experience chronic and diverse symptoms including autonomic manifestations,” conclude members of the American Autonomic Society in a consensus statement4. Individuals with Long-COVID have continued symptoms after more than 12 weeks following an acute infection5. In a report of 20 patients with Long-COVID Autonomic Dysfunction 60% were unable to return to work 6-8 months following the initial illness6. Importantly, most individuals who were properly diagnosed and treated for autonomic symptoms reported some degree of improvement.
THE PROBLEM: POTENTIAL FOR A SECOND PUBLIC HEALTH CRISIS
Prior to the COVID-19 pandemic, medical centers specializing in autonomic medicine were already short on resources with wait times varying from 6-12 months. With the emergence of Long-COVID Autonomic Dysfunction, a large number of new patients are currently being referred to the same autonomic specialty centers. There is now enormous pressure put on these organizations as well as community-based healthcare professionals to recognize, diagnose and treat the growing number of patients. Long-COVID Autonomic Dysfunction has the “potential to produce a second public health crisis on the heels of the pandemic itself.”7 Reports of Long-COVID Autonomic Dysfunction are being published across the globe including research from North America, the United Kingdom8, Sweden9, Malaysia10, Argentina11, Czech Republic12 and Oman13. Developing a greater understanding of Long-COVID Autonomic Dysfunction including research investments about the progression, pathophysiology and treatments will be imperative in coming months and years.
EDUCATION IS THE SOLUTION: YOU CAN HELP!
Resources to educate community-based health-care professionals and their patients/families about Long-COVID Autonomic Dysfunction will be crucial to reduce the growing burden on our health care system. The Dysautonomia Project has created a portal on our website to help healthcare professionals learn more about this growing patient population.
We recommend all healthcare professionals be equipped to do 3 things:
- Understand and recognize Long-COVID Autonomic Dysfunction
- Appreciate the, sometimes, disabling symptom burden felt by patients and their families
- Diagnose and manage cases
at the local level
We also recommend that all healthcare professionals including nurses and therapists familiarize them-selves with Long-COVID Autonomic Dysfunction to provide supportive care.
You can help by spreading the word about Long-COVID Autonomic Dysfunction with anyone you know who provides healthcare in your community.
The Dysautonomia Project's Statement on COVID-19 Vaccinations
LCAD Online Resources
Long-COVID postural tachycardia syndrome: an American Autonomic Society statement
Autonomic function testing in the COVID-19 pandemic: an American Autonomic Society position statement
Postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders after COVID-19 infection : a case series of 20 patients
The extended autonomic system, dyshomeostasis, and COVID-19
COVID-19 rapid guideline: managing the long term effects of COVID-19
Long-Haul Post-COVID-19 Symptoms Presenting as a Variant of Postural Orthostatic Tachycardia Syndrome (SWEEDEN)
Challenges in defining Long COVID: Striking differences across literature, Electronic Health Records, and patient-reported information.
Persistent Brainstem Dysfunction in Long-COVID: A Hypothesis (MALAYSIA)
Autonomic dysfunction following COVID-19 infection: an early experience
Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies (UK)
The Post-acute COVID-19 Syndrome (Long COVID) (OMAN)
New-onset Postural Orthostatic Tachycardia Syndrome Following Coronavirus Disease 2019 Infection
Acute and Post-Acute Neurological Complications of COVID-19
How and why patients made Long Covid (UK)
What can neuroimmunology teach us about the symptoms of long-COVID? (UK)
Persistent Antiphospholipid Antibodies, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Post-COVID Syndrome: 1 Year On
Historical Insight into Infections and Disorders Associated with Neurological and Psychiatric Sequelae Similar to Long COVID (CZECH REPUBLIC)
COVID-19 and its sequelae: a platform for optimal patient care, discovery and training
Fatigue following COVID-19 infection is not associated with autonomic dysfunction (IRELAND)
Defining Post-COVID Symptoms (Post-Acute COVID, Long COVID, Persistent Post-COVID): An Integrative Classification (SPAIN)
The unfolding palette of COVID-19 multisystemic syndrome and its neurological manifestations (ARGENTINA)
- Shouman K, et. al. Autonomic Dysfunction Following COVID-19 Infection: An Early Experience. Clin Auton Res. 2021 April 16: 1-10.
- Dani, Melanie, et. al. Autonomic Dysfunction in ‘Long-COVID’: Rationale, Physiology and Management Strategies. Clin Med (Lond). 2021 Jan 21: e63-367.
- Goldstein, David S. The Extended Autonomic System, Dyshomeostasis, and COVID-19. Clin Auton Res. 2020 Jul 22: 1-17.
- Raj, Satish R., et. al. Long-COVID Postural Tachycardia Syndrome: An American Autonomic Society Statement. Clin Auton Res. 2021 Mar 19: 1-4.
- National Institute for Health and Care Excellence (NICE) (2021) COVID-19 rapid guideline: managing the long-term effects of COVID-19.
- Blitshteyn S. and Whitelaw S. Postural Orthostatic Tachycardia Syndrome (POTS) And Other Autonomic Disorders After COVID-19 Infection: A Case Series Of 20 Patients. Immunol Res. 2021 Mar 30: 1-6.
- Rando, Halie M., et. al. Challenges in Defining Long COVID: Striking Differences Across Literature, Electronic Health Records, And Patient-Reported Information. Preprint. medRxiv. 2021 Mar 26
- Mondelli, Valeria and Pariante, Carmine M. What can neuroimmunology teach us about the symptoms of long-COVID? Oxf Open Immunol. 2021 Feb 10.
- Johansson, Madeleine, et. al. Long-Haul Post-COVID-19 Symptoms Presenting as a Variant of Postural Orthostatic Tachycardia Syndrome. JACC Case Rep. 2021 Apr 3(4): 573-580
- Yong, Shin Jie. Persistent Brainstem Dysfunction in Long-COVID: A Hypothesis. ACS Chem Neurosci. 2021 Feb 17; 12(4): 573-580.
- Barrantes, Francisco J. The unfolding palette of COVID-19 multisystemic syndrome and its neurological manifestations. Brain Behav Immun Health. 2021
- Stefano, George B. Historical Insight into Infections and Disorders Associated with Neurological and Psychiatric Sequelae Similar to Long COVID. Med Sci Monit. 2021 Feb 26.
- Al-Jahdhami, Issa, et. al. The Post-acute COVID-19 Syndrome (Long COVID). Oman Med J. 2021 Jan; 26.