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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:

  1. Understand and recognize Long-COVID Autonomic Dysfunction
  2. Appreciate the, sometimes, disabling symptom burden felt by patients and their families
  3. 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
At this point there are no indications the COVID-19 vaccine recommendations should be altered for people with POTS or other autonomic disorders. Since the vaccines are not an attenuated version of the COVID-19 virus, there is not a risk of getting infected by the vaccine. There is increasing evidence that POTS can be triggered by or worsened by a COVID-19 infection, therefore we suggest all individuals with POTS or other autonomic disorders work diligently with their physician(s) to seek vaccination. Individuals with a history of severe allergic reactions should discuss vaccine options including the various components found in each vaccine formulation with their physicians. For patients with a history of mast cell activation disorders we recommend reviewing information found at The Mast Cell Disease Society about Covid19 vaccines. https://tmsforacure.org/covid19-statement/
Click here to download a fact sheet to share with your caregiver.

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)

Sources

  1. Shouman K, et. al.  Autonomic Dysfunction Following COVID-19 Infection: An Early Experience.  Clin Auton Res. 2021 April 16: 1-10.
  2. Dani, Melanie, et. al. Autonomic Dysfunction in ‘Long-COVID’: Rationale, Physiology and Management Strategies.  Clin Med (Lond).  2021 Jan 21: e63-367.
  3. Goldstein, David S.  The Extended Autonomic System, Dyshomeostasis, and COVID-19.  Clin Auton Res. 2020 Jul 22: 1-17.
  4. Raj, Satish R., et. al. Long-COVID Postural Tachycardia Syndrome: An American Autonomic Society Statement.  Clin Auton Res. 2021 Mar 19: 1-4.
  5. National Institute for Health and Care Excellence (NICE) (2021) COVID-19 rapid guideline: managing the long-term effects of COVID-19.
  6. 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.
  7. 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
  8. Mondelli, Valeria and Pariante, Carmine M. What can neuroimmunology teach us about the symptoms of long-COVID?  Oxf Open Immunol. 2021 Feb 10.
  9. 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
  10. Yong, Shin Jie. Persistent Brainstem Dysfunction in Long-COVID: A Hypothesis. ACS Chem Neurosci. 2021 Feb 17; 12(4): 573-580.
  11. Barrantes, Francisco J. The unfolding palette of COVID-19 multisystemic syndrome and its neurological manifestations.  Brain Behav Immun Health. 2021
  12. 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.
  13. Al-Jahdhami, Issa, et. al. The Post-acute COVID-19 Syndrome (Long COVID). Oman Med J. 2021 Jan; 26.

© 2022 The Dysautonomia Project

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Angela Hawkins

Vice President

Angela is an imaginative master fundraiser who has served the community for more than three decades as a volunteer. Many millions have been raised benefiting local private schools through her creativity, organizational and management skills which she’s used to mobilize committees and rally donors. In 2019, Angela joined the TDP board and chaired the Under The Umbrella Gala - which was her creation. The event was wildly successful, raising more than $500,000, catapulting TDP’s mission to new heights. Angela knows firsthand the hardships dysautonomia patients endure, as her daughter suffered through misdiagnosis for years. Through TDP her daughter found answers, spurring her on to provide the same for the many others searching for information and understanding.

Susan Rolston

Susan Rolston has more than 30 years’ experience leading high-performing organizations in public education and the nonprofit sector. For more than a decade, she was the Chief Executive Officer of Big Brothers Big Sisters of Pinellas County. Under her leadership, the organization expanded its donor base, increased its budget through diversified revenues, and ultimately improved the lives of 300% more children. After leading a highly successful merger with Big Brothers Big Sisters of Tampa Bay, she retired in 2014. Post retirement Susan traveled the country conducting agency audits for Big Brothers Big Sisters of America. Prior to her work with Big Brothers Big Sisters, Susan administered the Pinellas County Schools’ community involvement and school-based volunteer programs.

A longtime Pinellas resident, Susan has served in numerous public service and volunteer capacities. In 2015, she was appointed to the Juvenile Welfare Board by Governor Rick Scott and currently serves as Immediate Past Board Chair. She also served on the Board of Directors for the Early Learning Coalition of Pinellas County, Sixth Judicial Circuit Florida Bar Grievance Committee, and United Way Suncoast’s Community Impact Committee. Her most recent leadership appointment is with The Florida Bar’s Citizens Advisory Committee.

Susan’s adult daughter, Jayne took years to confirm a diagnosis of POTS and Mast Cell Activation. Jayne, like Kelly, is married with two teenage children; managing the chronic illness while helping to maintain a quality of life for Jayne’s family is a priority for Susan. After connecting with Kelly for guidance to help her family navigate the challenge of an accurate diagnosis and treatment plan, Susan has remained connected to TDP as a donor.

Al Ruechel

Al Ruechel, a graduate of Iowa State University, is a retired Television News Anchor from Bay News 9 serving the greater Tampa Bay area. He has been reporting and anchoring for more than 50 years, 34 of those years in the Tampa Bay area, interviewing literally thousands of newsmakers, politicians, subject matter experts, and even 6 presidents, and numerous presidential candidates

He has won dozens of anchoring and reporting awards working in Ames, Iowa, St. Louis, Missouri, Fort Myers, Florida, Albany, New York, and Tampa. He’s been awarded the Florida Medical Communicators Award two years in a row as well as 4 Emmy Awards for investigative and live on-air anchoring. He also volunteers at many of the Bay Area social service agencies as well as being on the Worship Team at his local church. He also hosts a bi-weekly interview segment on WPDS with Pinellas County School officials.

Al became involved with TDP through his friendship with Kelly and Nate Freeman. His background in short and long form interviewing made him a natural choice for leading the video discussions on our website.

He’s been married to the love of his life, Jennifer, since 1976. They have four children and 12 grandchildren, so far.

Tanya Baird Repka

Tanya Baird Repka has been active for many years in various community organizations and non-profit groups with a focus on fitness and youth advocacy. Tanya was director and head coach for 9 years of Tampa Bay Fit marathon training program and coached middle school track & field. She Co-Founded the St. Petersburg Road Runners Club in 2006, served as advisor on youth programs for Motion Sports Management, and has experience organizing and directing community, athletic and fundraising events. She is past President of the Osceola High School Athletic Boosters, where she oversaw the Christina Tournant Memorial Scholarship. Tanya has served on the race committee for the POTS Pi Day 5K as a committee member and Chair since 2017. She is the mother of three daughters, one of whom has POTS. She became involved in dysautonomia awareness efforts as a result of her struggle to find a diagnosis and treatment for her daughter. Tanya is a lifelong resident of St. Petersburg and an associate broker and sales consultant at Baird Realty Group, a family-owned full service real estate firm. Tanya studied Marketing and Business Administration at the University of Florida.

Susan Jinks

Susan Jinks is an Associate at Coldwell Banker Real Estate. She has personal experience with dysautonomia patients in her family and among her close friends. Susan joined TDP’s board in 2017. She has been a tremendous asset to TDP for organizing and hosting events and recruiting volunteers through her vast network of community connections.  

Jason Jensen

Jason Jensen, AIA, LEED AP, joined Wannemacher Jensen Architectural Firm in 2002. After gaining experience in New York City, he returned to St. Petersburg with a goal to innovate architecture for this generation in the Tampa Bay area.

Terence M. Igo

Terry Igo joined The Sanibel Captiva Trust Company at its inception in 2001 on Sanibel Island. He was instrumental in growing the initial client asset base, (now more than $2 billion), followed by a successful expansion into Naples and then to the Tampa Bay region in 2010. Since assuming the CEO position in 2013, Terry has grown the Florida footprint to also include Belleair/Clearwater and Tarpon Springs. In addition to directing company-wide operations, Terry serves as a member of the Asset Management Committee, the Risk Management Committee, Strategic Planning, and the Board of Directors.

He has served as advisor to many Florida non-profit organizations, assisting with capital and planned giving campaigns; increasing awareness of philanthropic giving. Terry currently serves on the Straz Center for the Performing Arts Board of Trustees and is a member of the CEO Council of Tampa Bay. He is also past chairman and founder of the Go Red for Men of Tampa Bay – American Heart Association, and a past trustee of Hodges University. He and his family resided on Sanibel-Captiva Islands and Fort Myers for 20 years before relocating to Tampa Bay in 2013.

John Hiers

Reverend John Hiers retired as rector for the Church of the Ascension in 2020. He has served his community as an Episcopal priest for over 40 years. John joined the board of TDP in January 2022 to help the organization connect with key supporters in the community to further TDP’s mission.

June Bryant, DNP, APRN, CPNP-PC

Dr. Bryant is an Assistant Professor at the University of Tampa, Department of Nursing, and a pediatric Nurse Practitioner with over 12 years' experience. She took her expertise on the road in November of 2021 as the owner of Dr. Joonie’s Examinavan. Dr. Bryant trains her nursing students in autonomic disorders from both professional and personal experience, having identified symptoms in her grade-school-age son. She gives educational presentations on behalf of TDP at local, state and national nursing conferences and trainings. She joined TDP’s board of directors in 2020. 

Hunt Brand

Hunt Brand is Chief Operating Officer (COO) for Network People with over 30 years' experience driving technology roadmaps, developing innovative secure systems, managing security, and streamlining operational processes. Hunt served his local community as Commissioner and Mayor of The City of Belleair Bluffs where he repaired relationships, improved partnerships and was known as the voice of reason. He was honored to join the TDP board of directors to help with online messaging and support systems to support our mission in 2018.

Karen Crown

Past-President

A founding director of TDP, Karen brings a wealth of leadership and fundraising experience to the board. She has served as TDP’s president and is the immediate past president of the Joseph F. Cornelius Family Foundation; past president of the Junior League of Clearwater/Dunedin; past president of Suncoast Family YMCA; past president of St. Paul School Parents’ Association; past president of Tri Delta Clearwater Alumnae Association. Karen’s professional experience includes her roles at Executive Director of UPARC Foundation (now ARC of Tampa Bay Foundation) and Executive Director of the Florida Blood Services Foundation. Additionally, she has served on the boards of the Salvation Army Advisory Board; Isaiah’s Inn; Leadership Pinellas; Leadership Tampa Bay; Church of the Ascension Vestry; Morton Plant Community Affairs; Clearwater Library Foundation; UPARC Foundation; American Red Cross; Florida Prostate Cancer Center Network; Association of Fund-Raising Professionals and Carlouel Yacht Club.

Beth Pike

Secretary

Beth Pike became involved with The Dysautonomia Project when her daughter, at age 25, became acutely ill. Her daughter spent more than 60 days in 2 hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Her daughter is still currently a research patient at the NIH hoping to shed light on the autonomic nervous system for others. Her professional career as a physical therapist assistant for over 25 years serves her in educating patients about Dysautonomia and what’s happening to their bodies. Patients need safe and manageable exercise protocols to improve their overall health and mental wellbeing . Beth serves as Secretary of TDP and on the board of directors in order to help create hope for dysautonomia patients, and their families, so they won't have to go through the despair and isolation that her family has suffered

Nate Freeman

Interim Treasurer, Past-President

Nate and Kelly Freeman founded Network People, Inc. in 1996, a company that specializes in IT security/management and website digital marketing. Nate is the president of Network People. He holds a bachelor’s degree from Willamette University in Business Economics. He co-founded The Dysautonomia Project with Kelly in 2014 and has served as its president and currently serves as Treasurer. Nate serves on the board of the Joseph F. Cornelius Foundation as Treasurer.  He and Kelly are passionate about building and strengthening marriages and currently serve as leaders in a marrieds ministry at church.  He is also an active alumni member of Leadership Pinellas.  Previously, Nate served on the board of the ARC Tampa Bay Foundation and as the Technology Advisory Board of the YMCA. 

Alexandra Key

President

Alexandra is a founding board member of TDP. She witnessed first hand the dismantling of TDP founder Kelly Freeman’s life as her dysautonomia diagnosis unfolded. Through this gained understanding, she has helped several friends navigate to a diagnosis with TDP resources. Alexandra is pleased to contribute to this worthy cause by using her past experience in non-profit work and is greatly encouraged by the strides made since TDP’s inception.

Carlton Ward

Past-President

Mr. Ward received a B.S.A. in 1970 and a J.D. in 1973 from the University of Florida. A native of Tampa, Florida, Mr. Ward has been involved in many professional and community activities since moving to Clearwater, having served on organizations, including the Clearwater Bar Association, the American Bar Association Real Property, Probate and Trust Law Division, American Bar and Florida Bar Young Lawyers Divisions. Mr. Ward is a former President of the Pinellas Real Estate Law Council and Past Chairman of the Greater Clearwater Chamber of Commerce, the Pinellas County United Way and the United Way of Tampa Bay. Mr. Ward has lectured frequently regarding real property and condominium law. His practice includes real estate, corporate, condominium, commercial, banking, wills and trusts and general law.