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/

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.

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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

Susie watched a good friend and her family struggle to find a diagnosis for her illness. The more she learned about Dysautonomia, the more people she realized were struggling with some form of it, and did not know where to turn. Susie would like to do her part in raising awareness and continuing to find answers for coping and triumphing over dysautonomia someday.

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.

Molly duPont Schaffer

Molly’s lifelong friendship with TDP founder Kelly Freeman brought her to our Board. Molly is on staff at both Church of the Ascension and duPont REGISTRY TAMPA BAY. Her love for those she has grown up with in our community creates a large network of supporters. Molly’s passions include anything fun with her husband and children, needlepoint, and travel. Molly is on the Board of Saint Paul’s School, and is involved with the Arc Tampa Bay Foundation, Morton Plant Mease Healthcare Foundation, and Clearwater Marine Aquarium.

Bob Cottrell

Bob has owned and operated his own manufacturing business in Largo since 1974. For 20 years, he built fiberglass shells for Island Packet, Com-Pac, Spindrift, Nimble Boats and others. In 1994, Bob began making putties for the marine market. This business was sold in 2016 and he is currently retired.

Bob and his wife have been supporters of The Dysautonomia Project since its inception. They have known Kelly Freeman for over 40 years, and Nate for well over 20. Bob was honored when Nate reached out for information and advice when he was considering going into business for himself - in what was to become the very successful Network People. Bob is the past treasurer for The Dysautonomia Project, and is very excited to continue the mission of TDP!

June Bryant, DNP, APRN, CPNP-PC

June Bryant was introduced to The Dysautonomia Project in after hearing the education team speak to the Hillsborough County School District school nurses. She is a dedicated pediatric nurse practitioner in the community and nursing professor at University of Tampa.

Hunt Brand

Hunt met the Freeman family many years ago at Church where he was part of the praise team with Kelly. Over the years he also worked with Nate on various technical projects. 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. With over twenty years of experience as a senior technology leader he was honored to join the TDP team to help with online messaging and support systems to support our mission to educate healthcare professionals, patients and communities about dysautonomia.

Karen Crown

Past President

Karen Crown is Kelly Freeman’s mother. Watching her daughter suffer by being un-diagnosed, only to follow with a misdiagnosis was extremely difficult as a parent. When the initial doctor told Kelly that she was just anxious and panicky, to go home, take Xanax and see a counselor, Karen knew that she had to get involved. Karen knew there was something terribly medically wrong with her daughter.

Kelly’s quest for answers led the Crown - Freeman family to establish The Dysautonomia Project, a not for profit 501(c)(3) organization.

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 hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Beth met Kelly Freeman at a National Convention and found out that she lived nearby. Beth wants to help raise awareness and educate the medical field, along with our community, about Dysautonomia so medical providers will quickly be able to recognize the heterogenous symptoms of this disorder. Beth is involved in TDP 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.

Nate Freeman

Interim Treasurer, Past-President

Nate Freeman is a co-founder of both The Dysautonomia Project and his company Network People. He holds a bachelor of science from Willamette University, and enjoys learning about new organizations and their success stories. Nate holds a strong desire for educating the medical community about dysautonomia because his wife, Kelly Freeman, is a dysautonomia patient. After watching his wife, and his family struggle for so long to find an answer, Nate knew he had to create something to raise awareness and education in his own community. With the help of his wife, The Dysautonomia Project was born.

Nate enjoys teaching, whether it is leading a class on how to do better IT or teaching children at Sunday school. Because of his love for teaching, The Dysautonomia Project is the perfect avenue for Nate to provide his vision and leadership to medical professionals on the community level.

Alexandra Key

Vice 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

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.