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  • Long COVID Patient Resources and Information
    DINET is a proud partner of the Long COVID Alliance, a resource and helping hand for anyone living with Long-COVID syndrome    .
    COVID-19 Vaccination Recommendation from DINET:  DINET encourages its members to receive vaccinations and boosters for COVID-19 unless specifically advised against it by your medical provider. 

Information Resources

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Long COVID refers to the illness occurring after a person has had COVID-19 infection and has recovered from that infection.  Long COVID can produce many symptoms and has been linked to Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome), ME/CFS (Chronic Fatigue Syndrome) and MCA (Mast Cell Activation Disorder)
In an effort to best serve the many people coming to DINET to learn about POTS and Dysautonomia related disorders from Long-COVID, we have joined the Long COVID Alliance along with many other nonprofit organizations.
Help finding a Long COVID Clinic - Click on the link "See directory here"
Help finding a physician knowledgeable in COVID related disorders and illness - Click on the link "See directory here"
COVID-19 Insurance and Disability Denial Guidebook - The guidebook is provided by a law firm working with the Long COVID Alliance network.
Please check back.  We will add new resources and information as it becomes available.
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Published Nature Reviews Microbiology, January 2023
Full article available: https://www.nature.com/articles/s41579-022-00846-2#Fig1
Abstract: Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily. Biomedical research has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness; further, similarities with other viral-onset illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome have laid the groundwork for research in the field. In this Review, we explore the current literature and highlight key findings, the overlap with other conditions, the variable onset of symptoms, long COVID in children and the impact of vaccinations. Although these key findings are critical to understanding long COVID, current diagnostic and treatment options are insufficient, and clinical trials must be prioritized that address leading hypotheses. Additionally, to strengthen long COVID research, future studies must account for biases and SARS-CoV-2 testing issues, build on viral-onset research, be inclusive of marginalized populations and meaningfully engage patients throughout the research process.
Contributors: Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel & Eric J. Topol
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Published in Immunologic Research, April 2021
Study conducted by Dr. Svetlana Blitshteyn and Sera Whitelaw
Full article available: https://link.springer.com/article/10.1007/s12026-021-09185-5#Abs1
Objective:  To describe clinical features, diagnostic findings, treatments, and outcomes in patients with new-onset postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders following SARS-CoV-2 infection (COVID-19).
Methods:  We retrospectively reviewed medical records for patients who presented with persistent neurologic and cardiovascular complaints between April and December 2020 following COVID-19 infection.
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Published December 2022, Nature Cardiovascular Research
Full article:  https://www.nature.com/articles/s44161-022-00180-z
Introduction: Postural orthostatic tachycardia syndrome (POTS) can follow COVID-19 as part of the post-acute sequelae of SARS-CoV-2 infection, but it can also develop after COVID-19 vaccination. A new study shows that the rate of new-onset POTS diagnoses is slightly increased after COVID-19 vaccination, but is five times lower than the rate of POTS diagnoses after SARS-CoV-2 infection.  
Contributors:  Svetlana Blitshteyn & Artur Fedorowski 
 
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Published December 2022, Nature Cardiovascular Research
Full article available: https://www.nature.com/articles/s44161-022-00177-8
ABSTRACT:  Postural orthostatic tachycardia syndrome (POTS) was previously described after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection; however, limited data are available on the relation of POTS with Coronavirus Disease 2019 (COVID-19) vaccination. Here we show, in a cohort of 284,592 COVID-19-vaccinated individuals, using a sequence–symmetry analysis, that the odds of POTS are higher 90 days after vaccine exposure than 90 days before exposure; we also show that the odds for POTS are higher than referent conventional primary care diagnoses but lower than the odds of new POTS diagnosis after SARS-CoV-2 infection. Our results identify a possible association between COVID-19 vaccination and incidence of POTS. Notwithstanding the probable low incidence of POTS after COVID-19 vaccination, particularly when compared to SARS-Cov-2 post-infection odds, which were five times higher, our results suggest that further studies are needed to investigate the incidence and etiology of POTS occurring after COVID-19 vaccination.
Contributors:  Alan C. Kwan, Joseph E. Ebinger, Janet Wei, Catherine N. Le, Jillian R. Oft, Rachel Zabner, Debbie Teodorescu, Patrick G. Botting, Jesse Navarrette, David Ouyang, Matthew Driver, Brian Claggett, Brittany N. Weber, Peng-Sheng Chen & Susan Cheng 
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by Ellen Driscoll
POTS has been receiving an increase in attention in both the media and the medical field as a result of COVID-19 infections. For many patients, illness continues long after they have come through the COVID infection.  This syndrome is commonly referred to as Long COVID or the patients experiencing this are called "Long Haulers".  For many people, the after effects of illness or the long haul occurs months after the initial infection has resolved. In a recent study by Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, 6 to 8 months after COVID-19 infection, patients developed residual autonomic symptoms debilitating enough to prevent a return to work. (1) What is not known is if a history of mild autonomic dysfunction or other markers that are common triggers for autonomic dysfunction such as concussion may be risk factors for developing post-COVID autonomic disorders. (1) 
In a recent survey published in eClinical Medicine, almost half (43.4%) of their respondents developed at least one post COVID condition, and almost 3/4 (72%) of those patients reported symptoms suggesting POTS as a secondary disorder post infection (2). The symptoms, post illness, continuing for 3 to 6 months as part of the diagnostic criteria.  A Mayo Clinic Study found 80% of long-haulers living with "persistent fatigue" and half living with "brain fog" (5).  The Mayo Clinic's CARP program (COVID-19 Activity Rehabilitation Program) reports 59% of patients with respiratory complaints and one-third of long-haulers reported being unable to perform daily tasks associated with managing day-to-day life (5) The prevalence of POTS was documented in an international survey of 3,762 long-COVID patients, leading researchers to conclude that all COVID patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.” according to Dr. Peter Rowe, John Hopkins.(8) Another common condition tied to the after effects of COVID-19 is ME (CFS) (2) or Chronic Fatigue Syndrome.  Dr. Rowe has treated both POTS and CFS patients for over 25 years and said every doctor with expertise in POTS is seeing long-haul COVID patients with POTS, and every long-COVID patient he has seen with CFS also had POTS. (8) For physicians, diagnosing these complex conditions can be made more difficult by the fact that ME and POTS can have many over lapping symptoms.  
The treatment for POTS can be complicated given the multisystem effect the disorder has on the body. Research from John Hopkins suggests that it is not only acute COVID infections that are resulting in long lasting symptoms, citing patients with mild COVID illness also reporting signs of possible ANS dysfunction that may suggest POTS.(6)  What is less known is how long these post-COVID illnesses may last.  According to Dr. Svetlana Blitshteyn of the Dysautonomia Clinic, the claim that patients can outgrow POTS is unrealistic.  She says "my go-to answer is we don't know if/when you'll recover, but you'll feel better with the right treatment." (7)
For people living with POTS before becoming infected with COVID-19, POTS symptoms may temporarily worsen (6).  However, there is no evidence to date that there are permanent effects on the ANS or the progression of the disorder.  Treatment for Post COVID POTS is similar to POTS treatment unrelated to COVID. Frequently a pharmacological approach combined with life-style alterations and exercise, as tolerated, gives the patient the most long-lasting benefits.(6) However, in both acute COVID illness and mild illness, physical therapy and/or rehabilitation may be necessary to help with reconditioning due to the multisystem involvement caused by COVID.(6) Each patient should have an individual treatment plan developed and monitored by a physician knowledgeable about POTS and ANS function to be the most effective.
Complicating treatment is that the number of physicians familiar with the diagnosis and treatment of POTS is insufficient for the numbers of new cases of Post COVID POTS (4) Dr. Rowe says he expects the lack of medical treatment to worsen. (8) The waiting lists for specialists in ANS dysfunction can be 6 - 12 months or longer and the multi-disciplinary approach necessary for the treatment of POTS is rarely available in clinics where appointments may be open.  In an American Autonomic Society article addressing these concerns, Dr. Satish Raj and associates comments "These patients have complicated medical conditions that will require longer visits and more allied health care personnel (including nurses, physiotherapists and psychologists) to deliver the needed care. In other words, it will not be possible to address the needs of this population without a commitment not just from the providers, but also hospitals and medical center administration." (4)
Although the mechanism causing Post COVID POTS is unknown, recent findings suggests inflammatory, auto-immune responses and the generation of auto-antibodies  to be at play (3) It is postulated that the cytokine storm from the COVID-19 infection results in sympathetic dysregulation, causing the abnormal autonomic response in POTS (3) Further studies are needed to determine whether post-COVID-19 autonomic disorders are rooted in autoimmunity and what type of antibodies or cytokines may be mediating the autoimmune and/or inflammatory process.(1) Congress has allotted 1.5 billion in funding to the National Institute of Health over the next four years to study post-COVID conditions (4).  The light at the end of the devastation caused by COVID-19 may be the awareness it is bringing to some of the less familiar, yet debilitating illnesses like POTS and CFS into the forefront of the medical community.   
To learn more about COVID-19, watch Dr. Blitshteyn's video
Resources and References
1. Postural Orthostatic Tachycardia Syndrome (POTS) and other autonomic disorders after COVID infection: a case series of 20 patients, Dr. Svetlana Blitshteyn  and Sera Whitelaw
https://link.springer.com/article/10.1007/s12026-021-09185-5
2. Characterizing long-COVID in an international cohort: seven months of symptoms and their impact.
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext#seccesectitle0048
3. Management of Long-COVID and Postural Orthostatic Tachycardia Syndrome with Enhanced External Counterpulsation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8555928/
4. American Autonomic Society Long COVID-19 and Postural Orthostatic Tachycardia Syndrome: An American Autonomic Society Statement (with Dr. Satish Raj)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7976723/
5. Post-COVID-19 Syndrome (Long Haul Syndrome): Description of a multidisciplinary clinic at Mayo Clinic and characteristics of the initial patient cohort
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00356-6/fulltext
6. COVID-19 and POTS: Is there a link?
https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/covid19-and-pots-is-there-a-link
7. @dysclinic Twitter, S. Blitshetyn MD, Dysautonomia Clinic #longCovid
8. Little known illnesses turning up in COVID long-haulers
https://khn.org/news/article/covid-long-haul-illness-pots-autonomic-disorder/
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NOTE:  If you are a part of a support group or and would like to receive printed materials to share with family, or local medical community, please contact webmaster@dinet.org DINET supports your efforts!
You have what?  You may have said words like that to your friend or family member when they told you they had a diagnosis.  When they began trying to explain things like dysautonomia, autonomic dysfunction, tachycardia and the many other rarely heard words, you may have felt it was all too obscure, too medical to understand.  You're right, those are a lot of complex processes and difficult concepts to tie together.  Even a large part of the medical community doesn't know about it.  
If you have a friend or family member who has been diagnosed with an illness falling under the umbrella term "dysautonomia", this guide will hopefully help you understand it and better help support your loved one.
What is dysautonomia?
Dysautonomia, simply put, refers to a sort of misfiring of the processes in your body that normally function without you needing to think about them. For example, when you go from a dark room to a backyard on a sunny day, you don't make your pupils contract to protect your eyes from the bright light.  And you don't have to think about whether your pupils will dilate to allow more light in, when you return to the dark room.  For a person with a dysautonomia illness, their pupils may not react automatically.  That dysfunction of an automatic system/response in the body is autonomic dysfunction - the core of dysautonomia.
Why does my friend/family member have so many different complaints?  There can't be that many things wrong with them, can there?
The example above doesn't sound too hard to live with maybe, but if you stop and think about all of the functions of the body that we don't have to think about - all of the autonomic functions - we can quickly understand how debilitating this illness can be and how widespread.
There are many types of dysautonomia (about 15 types) but they all involve the autonomic nervous system (ANS).  The ANS controls:
regulating a constant internal temperature regulating breathing patterns keeping blood pressure steady - regardless of body position regulating the heart rate urination/excretion pupil dilation The next time your friend or family member is sweating profusely, has a migraine headache and can't stand up without feeling faint, you will understand better how this can all be happening.
What are the symptoms?
The symptoms vary depending on the type of dysautonomia, but the most common symptoms are:
lightheadedness & fainting tachycardia or fast heart rate chest pains shortness of breath stomach upset exhaustion - far beyond normal tiredness over-sensitivity to temperatures (extreme sweating regardless of temp) "brain fog" - confusion or memory loss that passes What can I do to help?  When do I call 911?
If in doubt call 911, especially if the person loses consciousness or can not speak or help themselves.  It is always better to call than to risk the results of not calling when you should have.  But, most cases of fainting or lightheadedness, extreme tachycardia or BP, will resolve itself if the person returns to a lying down position.  But that is very dependent on the type of dysautonomia and the other illnesses present. Always call if you are concerned.
Understand, support and spread the word!  There is nothing that feels better to a person struggling to live through an illness, than to be believed and understood.  Too many times patients go through years of being told by the people around them that they are anxious or stressed or they need to push passed their symptoms.  When your body feels so out of your control, the last thing that you need to hear is that you should be able to control your symptoms somehow. Once you understand the illness, advocate for your loved one and help them be heard.
Remind and support their efforts to be well.  Remind them to hydrate.  Good hydration with electrolyte products is essential to feeling well.  Read more about the effects and pick up a coupon for an electrolyte drink - Banana Bag.
Keep them from feeling alone.  One of the tough parts of this illness is feeling as though the world is going on without you.  On their bad days, instead of trying to push the person to try and do what you can do, try adapting yourself to what they can do.  If you invite them to go for a swim and they can't, change the plan to playing cards, listening to music, or just a visit.  Your company will go a long way.
 
To learn more about illnesses classified under the dysautonomia umbrella, visit the Information Resources section of our site, or visit MedicalNewsToday for a fantastic article about the different types of dysautonomias.
 
 
 
 
 
understanding dysautonomia.pdf
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How to prepare for an ER trip or a visit to a new medical practice.
Going to the ER or to a new doctor’s office can be a stressful experience.  To complicate things, dysautonomia is not very well understood and by nature includes the dysfunction of a complex set of multiple systems within the body.  
The best way to combat these issues is to be well prepared.  Let’s face it, it can’t be easy for the ER team, to have a patient in front of them talking about illness and treatments that they know little, if anything, about.  So since they can’t prepare, it falls to you.
Here are some suggestions to help you get ready in advance.
Long before you are in need of new services, create a medical notebook.  Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks.  It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you.   As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction.  For example,  in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium.  This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses.  Be sure to include the HR range and BP range that is “normal” for you.   And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy.  You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you.  If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly.   Patient Guide - medical trips.pdf
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