A Family Guide To Long Covid by Access-Health

Access Health Press

A Family Guide to Long Covid: Questions and Answers

William A. Haseltine PhD

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All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping, or by any information storage retrieval system, without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews. All author proceeds from the sale of the A Family Guide to Long Covid will be donated to the nonprofit global think tank ACCESS Health International. iv

Advance praise for a Family Guide to Long Covid A timely, go-to guide from an internationally renowned scientist. Bill's compassion and determination to help people of all backgrounds is a gift to the world. - Donna Tetreault, National Parenting Journalist and Best-Selling Author.

Recent Books by William A. Haseltine Living eBooks on Covid-19 A Family Guide to Covid: Questions and Answers for Parents, Grandparents and Children; William A. Haseltine (2020)

A Covid Back To School Guide: Questions and Answers for Parents and Students; William A. Haseltine (2020) Covid Commentaries: A Chronicle of a Plague, Volumes I, II, III, IV, V, and VI; William A. Haseltine (2020)

My Lifelong Fight Against Disease: From Polio and AIDS to Covid19; William A. Haseltine (2020)

Variants!: The Shape-Shifting Challenge of Covid-19 Vaccine Evasion & Reinfection; William A. Haseltine (2021) Covid Related Post-traumatic Stress Disorder (CV-PTSD): What It Is And What To Do About It; William A. Haseltine (2021)

Natural Immunity and Covid-19: What it is and How it Can Save Your Life; William A. Haseltine with Josephine Gurch (2022)

Omicron: From Pandemic to Endemic: The Future of Covid-19 William A. Haseltine with Griffin McCombs (2022) Books on Healthcare

Affordable Excellence: the Singapore Healthcare Story; William A Haseltine (2013) Improving the Health of Mother and Child: Solutions from India; Priya Anant, Prabal Vikram Singh, Sofi Bergkvist, William A. Haseltine & Anita George (2014) vi

Modern Aging: A Practical Guide for Developers, Entrepreneurs, and Startups in the Silver Market; Edited by Sofia Widén, Stephanie Treschow, and William A. Haseltine (2015) Aging with Dignity: Innovation and Challenge is Sweden-The Voice of Care Professionals; Sofia Widen and William A. Haseltine (2017) Every Second Counts: Saving Two Million Lives. India’s Emergency response System.The EMRI Story; William A Haseltine (2017)

Voices in Dementia Care; Anna Dirksen and William A Haseltine (2018) Aging Well; Jean Galiana and William A. Haseltine (2019)

World Class. Adversity, Transformation and Success and NYU Langone Health; William A. Haseltine (2019) Science as a Superpower: My Lifelong Fight Against Disease And The Heroes Who Made It Possible; William A. Haseltine (2021)

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Coming soon by the same author:

In Long Covid Speaks, learn about the condition affecting millions—from those treating, researching, and living with it. From "first wavers" who developed Long Covid before it had a name to patients who, prior to onset, never had a serious encounter with illness or disability. This book gathers firsthand accounts of individuals coping with a condition that continues to elude definition. These stories appear alongside perspectives from the advocates, physicians, therapists, and researchers working to help them. viii

Welcome to A Family Guide to Long Covid: Questions and Answers!

This is what I have dubbed a living ebook, a format suitable for a

rapidly evolving pandemic such as Covid-19. The living ebook allows us to update the book regularly and enable the reader to

receive continued access at no additional cost. We intend to continue providing updates as they occur concerning knowledge

about this condition. The book is also available in hard copy, as print on demand.

I will continue to update A Family Guide to Long Covid as we learn

more about Long Covid. You may download these updates at no additional cost by visiting

www.williamhaseltine.com/longcovid

For the latest information about Covid-19 please visit

www.accessh.org/covid-19

Thank you for your interest.

To my wife, Maria Eugenia Maury, my children Mara and

Alexander, my stepdaughters Karina, Manuela, and Camila, my

three grandchildren Pedro, Enrique, and Carlos, and last but not

least our three dogs, Sky, Luna, and Ginger — members all of our precious bubble in this time of trouble.

Contents Introduction ...................................................................................................... 1 Chapter 1: What is Long Covid?................................................................ 4

Chapter 2: How is Long Covid diagnosed and treated?............... 21

Chapter 3: How can you prevent Long Covid? ................................ 34 Chapter 4: How are different populations affected by Long Covid?....................................................................................... 36 Chapter 5: How does Long Covid affect children? ......................... 38 Chapter 6: How does Long Covid affect senior populations? ... 43 Chapter 7: How does Covid affect the organs long-term? .......... 45 Chapter 8: How can we support people with Long Covid? ........ 65

Acknowledgements..................................................................................... 72 References....................................................................................................... 73

Introduction

ong Covid is a capacious term, a catch-all phrase for an array of longer-term manifestations of Covid–19. Somewhere between 10 to 30% of people infected with Covid—of all ages, including mild infections—will develop Long Covid. While Long Covid patients, also known as long haulers, have no shortage of shared experiences between them, individual cases are heterogeneous. Symptoms alone—any combination of the 200plus reported since the beginning of the pandemic—are not what define a Long Covid journey. In addition to medical and biological factors, access to healthcare, socioeconomic status, emotional support, and many other determinants influence the nature and duration of recovery.

For some, Long Covid means brain fog and fatigue, a fuzziness of body and mind that turns the simplest of tasks into laborious, if not impossible, chores. For others, symptoms extend to the lungs, brain, and/or heart, causing complications across multiple organs and bodily systems. And for most, no matter the symptoms, seeking diagnosis and treatment is a struggle. Long Covid is a new form of disease and disability most physicians have never encountered in all their years of practice. What a Long Covid patient experiences, especially if it cannot be detected or measured by existing tests, can verge on the indescribable—and yet it often falls to them to educate themselves and their care providers about their condition. Even once a consensus on diagnosis is reached, managing symptoms will likely be a matter of trial and error, as no broadly successful treatment exists. 1

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The definition of Long Covid is evolving as it should with time. My personal view is that in addition to symptoms without clear laboratory evidence, including fatigue, the definition of Long Covid should include damage done to any organ system, for example kidney or heart disease. Long Covid should not only be a diagnosis by exclusion, but include all long term, life altering conditions arising from SARS-CoV-2 infection.

This is not the first time a complex post-viral illness has perplexed the biomedical establishment. One prominent example is myalgic encephalomyelitis, known by its more common name as chronic fatigue syndrome. Prior to the Covid19 pandemic, as many as three million people across the United States had been diagnosed with chronic fatigue syndrome, which like Long Covid is characterized by fatigue, post-exertional malaise, and brain fog. Disabling post-viral illnesses also appeared after the influenza and polio pandemics, respectively. The upside of historical precedence is that those who have lived with these conditions for years can share guidance and resources with long haulers. But despite the recurrence of these mass disabling events, few treatments have been successfully developed, in large part due to lack of funding and awareness. Low-grade exercise and cognitive behavioral therapy can help alleviate symptoms, but a cure eludes us.

Prevention of Long Covid is as shadowy as treatment. Vaccination, in reducing severe disease and death from Covid19, also reduces the likelihood of Long Covid, but the long-term strength of protection remains uncertain. Right now, the only way to preemptively address Long Covid is to spread awareness and deepen collective understanding of the disease. This book is a continually updating guide for you as a family member to help other members of your extended family—both younger and 2

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older—to understand, prepare, and protect yourselves from this aspect of the pandemic.

William A Haseltine Fairfield County, Connecticut July 2022 June 2022

Authors note: As this first edition of A Family Guide to Long Covid went to print, a preliminary copy of a report on Long Covid from the US National Academies of Science, Medicine and Engineering was posted. I recommend it as an excellent source for those wishing to learn more about the current status of Long Covid research and treatment.

CHAPTER 1

What is Long Covid?

ong Covid is a broad range of symptoms following resolution of the acute phase of the disease. Those with Long Covid are no longer testing positive for traces of the SARS-CoV-2 virus but exhibit long-term symptoms that persist for weeks or even many months after initial infection.

Between 10 and 30% of Covid-19 patients are estimated to experience Long Covid symptoms. 1 For more debilitating symptoms that last more than a year, the estimate is between 2 and 5%. The likelihood of full or partial recovery from Long Covid varies from person to person.

This definition excludes long-term consequences attributable to organ damage that can occur as a result of Covid-19 infection.

Can Long Covid affect people of all ages?

Long Covid can affect people of all ages who are otherwise healthy, including children. Can Long Covid affect people who are healthy?

Long Covid affects people of all medical backgrounds, even those who are completely healthy. 1

GAO-22-105666, Science & Tech Spotlight: Long COVID 4

William A. Haseltine

Can asymptomatic individuals develop Long Covid? Long Covid is seen in those who were hospitalized with Covid19 and people who experienced very mild symptoms or were asymptomatic. Are there other names for Long Covid?

Long Covid is also described as Long-haul Covid, Chronic Covid, and Post-acute sequelae of Covid-19 (PASC). Long Covid was officially recognized by the US Centers for Disease Control and Prevention (CDC) with a diagnostic ICD-10 code in October 2021 known as U09.9 Post Covid Condition. There is also an ICD-11 code: RA02 for Post COVID definition. It is based on the World Health Organization (WHO) definition of Long Covid established in October 21: 2

“Post Covid-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of Covid-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new-onset following initial recovery from an acute Covid-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.” The WHO did not restrict their definition to confirmed infections only. Unequal access to Covid-19 testing, particularly at the A clinical case definition of post COVID-19 condition by a Delphi consensus, 6 October 2021 2

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beginning of the pandemic, entails that many people with Long Covid do not have serological proof of SARS-CoV-2 infection.

How does this book define Long Covid?

Definitions of Long Covid vary. This book defines Long Covid broadly in order to emphasize post Covid conditions and longterm complications of acute disease (see Chapter Seven).

The following criteria, based on a recent paper published in The Lancet, are what constitute the parameters of this condition in A Family Guide to Long Covid: 34 

        

Survival

Fatigue or exhaustion Pain

Post-exertion symptoms

Cardiovascular functioning Respiratory functioning

Nervous system functioning Cognitive functioning Mental functioning

Overall physical functioning

What is the cause of Long Covid?

The cause of Long Covid remains unclear. Research suggests that the symptoms experienced by Long Covid patients could be the A core outcome set for post-COVID-19 condition in adults for use in clinical practice and research: an international Delphi consensus study - The Lancet Respiratory Medicine 4 Key outcomes of Long COVID identified in international consensus study 3

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result of up to four different syndromes: permanent damage to vital organs; post-intensive-care syndrome; post-viral fatigue syndrome; and continued Covid-19 syndrome. 5

Long Covid may be the result of low levels of complete or partial viral persistence. It might also arise due to an autoimmune response caused by the initial Covid-19 infection. Long Covid may also result from chronic inflammation triggered by the initial infection. For more on this hypothesis, see the question “Is Long Covid an autoimmune disease?” in Chapter Two. How is Long Covid different from Covid-19?

Covid-19 is caused by the active replication of SARS-CoV-2 virus in the body, while Long Covid develops once replication during the acute phase of infection has ceased.

Covid-19 is easy to diagnose with rapid antigen or PCR tests. There is no one test to diagnose Long Covid and the symptoms are wide-ranging. The symptoms of a Covid-19 infection are temporary, normally lasting anywhere from a few days to one to two weeks. In contrast, Long Covid symptoms can last for months or years. 6

Long covid could be four different syndromes, review suggests Health outcomes in people 2 years after surviving hospitalisation with COVID19: a longitudinal cohort study 5 6

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Source: ACCESS Health International; Long-term complications of COVID-19

How is Long Covid different from Chronic Covid?

Chronic Covid and Long Covid are often used interchangeably to describe the long-term effects of Covid-19. Technically, there is a distinction between the two. Chronic Covid is defined by the persistent infection of SARS-CoV2, while Long Covid symptoms occur after SARS-CoV-2 infection. 7 People with Chronic Covid test positive for Covid-19 for long periods of time. 8 What are the symptoms of Long Covid?

The list of Long Covid symptoms continues to evolve as new research emerges. A recent study identified up to 200 symptoms 7 8

Longest Covid infection lasted more than 16 months, tests show - BBC News The man who tested positive for Covid 43 times - BBC News

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that could be associated with Long Covid. 9 The five most common symptoms found were fatigue (58%), headache (44%), attention disorder (27%), hair loss (25%), and dyspnea (24%). 10 The symptoms of Long Covid are many and diverse. Symptoms of Long Covid defined by the CDC include:             

fatigue that interferes with daily activities difficulty breathing heart palpitations

memory, concentration or sleep problems depression anxiety

lightheadedness stomach pain

altered sense of taste or smell change in menstrual cycles

joint pain rash

lingering cough

Long Covid can also damage many other organs, including brain, heart, kidney, liver, blood vessels and bone. Organ damage may lead to lasting health complications, including: 

long-term breathing problems

Characterizing long COVID in an international cohort: 7 months of symptoms and their impact 10 More than 50 long-term effects of COVID-19: a systematic review and metaanalysis 9

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   

heart complications

chronic kidney impairment stroke

Guillain-Barré syndrome, a condition that causes temporary paralysis

Chapter Seven of this book details how Long Covid can affect each organ.

Source: Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

William A. Haseltine

When does Long Covid begin? The majority of people recover from the acute phase of SARSCoV-2 infection within two to three weeks. If symptoms persist for more than four weeks after initial infection, a person can be classified as having Long Covid. 11 These symptoms may continue to present for months or even years.

Long Covid can also manifest in those who did not develop symptoms during Covid-19 infection. It is estimated that up to one in five Covid-19 patients with no symptoms end up presenting at least one Long Covid symptom. 12 In such cases, symptoms usually appear within three months of recovery from acute infection. 13 We do not know if there is an upper limit for the onset of Long Covid. If you or a loved one is experiencing a sudden onset of symptoms that mirror those commonly associated with Long Covid, even if it has been weeks or months since initial infection, don’t rule out the possibility from the get go. What are the psychological symptoms associated with Long Covid?

The most common psychological symptoms associated with Long Covid are anxiety, depression, and post-traumatic stress disorder (PTSD). Covid-19 PTSD (CV-PTSD) is a trauma that develops as a result of the threat of Covd-19 to one’s life and loved ones, including witnessing unexpected death and physical Long COVID or Post-COVID Conditions | CDC. FAIR HEALTH white paper – A Detailed Study of Patients with Long-Haul COVID 13 A clinical case definition of post COVID-19 condition by a Delphi consensus, 6 October 2021 11 12

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injury to another person. 14 More on CV-PTSD can be read in the book CV-PTSD: What It Is and What To Do About It. Altered smell/taste, brain fog, and sleep disorders also impact mental health.

There is no singular cause for these psychological symptoms. SARS-CoV-2 infection likely causes unknown neurological impacts on the brain and immune system. It could be a response to the unpredictable loss of physical ability or permanent disability caused by Long Covid, especially for those with persistent brain fog, difficulty breathing, or fatigue. 15 People hospitalized for Covid-19 may develop post-intensive care syndrome, thus compounding PTSD or depression. 16 Moreover, Long Covid is not widely recognized; the dismissal of symptoms from medical practitioners, one’s workplace or family can worsen frustration and anxiety. 17 The culmination of psychological and physical symptoms can be overwhelming for people with Long Covid and their families. There are no standard treatments for Long Covid’s psychological symptoms. At this time, the best practice is to find support— physically, cognitively, and emotionally. Consider some of the following: 

Medical advice for physical symptoms can help identify underlying causes (although this may not alleviate psychological symptoms).

Posttraumatic Stress Disorder during COVID-19 | Psychiatry | Michigan Medicine 14

COVID-19 Impact on the Brain and Psyche | Northwestern Medicine What is Long COVID? The Physical and Psychological Symptoms and Management | UCSF Department of Psychiatry and Behavioral Sciences 17 Impact of post-COVID conditions on mental health: a cross-sectional study in Japan and Sweden | BMC Psychiatry 15 16

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

A psychiatrist may screen your mental health and prescribe medication or nonpharmacological interventions to manage depression and/or anxiety. Psychotherapy—and cognitive behavior therapy in particular— may help people with Long Covid adjust to new cognitive and physical limitations. 18

Cognitive Rehabilitation Therapy (CRT) is a customized treatment plan which focuses on improving one’s memory, attention processing, and emotional regulation. 19 A neuropsychologist can screen if this newly developed therapy is right for you.

Long Covid advocacy groups update frequently with useful resources and self-management tools, and the community can bridge the loneliness and isolation that comes with Long Covid. Confide in loved ones who sympathize with the Long Covid experience.

If you or someone you know is experiencing a mental health crisis, please use any of the following 24/7 resources at any time: 



18 19

For potentially life-threatening situations, call 911

For someone who is suicidal or in emotional discress, call 988 to reach the National Suicide Prevention Lifeline (alternative: 1-800-273-8255)

For those who need immediate help of all kinds, text HOME to 741741 to reach a crisis counselor We need to talk about Long-Covid | The Psychologist Clinical Guidelines: Long COVID-19

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What are the neurological symptoms associated with Long Covid? Neurological symptoms form when the brain, spinal cord and/or nerves that connect them experience dysfunction. 20 Long Covid’s most common neurological symptoms include fatigue, difficulty concentrating, forgetfulness, sleep disturbances, limb weakness, and headaches. 21 22 A minority of people display symptoms of PASC-TAC, a newly identified Long Covid syndrome consisting of the following neurological symptoms: tremor, ataxia, and cognitive dysfunction. 23 People with PASCTAC can experience tremors; difficulty with coordination, balance and speech; memory impairment and decreased concentration. How long do PASC neurological symptoms last for?

Preliminary data suggests that neurological symptoms can resolve within 6 months; study participants who did not recover at that mark still saw some improvement. The results suggest that many, but not all, recover from Long Covid neurological symptoms, but also that the road to neuro-normalcy is not quick or easy. Those with persistent symptoms had no history of preexisting neurological conditions prior to infection and reported mild/moderate Covid-19 infections, emphasizing the jarring impact of Long Covid’s neurological symptoms. 5 neurological disorders: Symptoms explained Neurological outcomes 1 year after COVID‐19 diagnosis: A prospective longitudinal cohort study 20 21

Longitudinal evaluation of neurologic-post acute sequelae SARS-CoV2 infection symptoms 22

Longitudinal evaluation of neurologic‐post acute sequelae SARS‐CoV‐2 infection symptoms - Shanley 23

William A. Haseltine

If I had severe Covid-19, am I more likely to develop Long Covid? Patients with severe Covid-19 are at a higher risk of developing Long Covid. 24 Those who require hospitalization, and in particular those who require intubation in intensive care units, are especially at risk. 25 But studies also show that Long Covid remains a threat even if infection is mild. 26 27 Mild Covid-19 can still yield severe Long Covid symptoms. 28 Further reading 



Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19 | PLOS Medicine

Multiple early factors anticipate post-acute COVID-19 sequelae: Cell

What are the risk factors for Long Covid?

As far as we know, no additional risk factors beyond those that predispose someone for severe Covid-19. Risk factors for Long Covid can either be direct or indirect. Direct risk factors increase risk for Long Covid once you have already been infected by SARSCoV-2. Indirect risk factors increase your chances of being infected in the first place. Post COVID-19 condition diagnosis: A population-based cohort study of its occurrence, risk factors and healthcare use by severity of acute infection 25 COVID Symptoms, Symptom Clusters, and Predictors for Becoming a LongHauler: Looking for Clarity in the Haze of the Pandemic 26 Post COVID-19 Syndrome in Patients with Asymptomatic/Mild Form 27 COVID Symptoms, Symptom Clusters, and Predictors for Becoming a LongHauler: Looking for Clarity in the Haze of the Pandemic 28 Delayed catastrophic thrombotic events in young and asymptomatic post COVID-19 patients 24

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Indirect risk factors include obesity, being male, being older, and high blood pressure. 29 Individuals with compromised immune systems—organ transplant recipients on immunosuppressive medication, cancer patients receiving chemoor immunotherapy, individuals suffering from autoimmune diseases, and individuals with human immunodeficiency viruses (HIV)—are also more prone to infections.

The data on the direct risk factors of Long Covid is less clear, but there are a few factors that stand out. Many studies show that women are more likely to develop Long Covid than men. 30 31 32 This echoes what we know about gender bias and autoimmune diseases—which overlap symptomatically with Long Covid— more generally. Type 2 diabetes is another risk factor for developing Long Covid. 33

What are the non biological risk factors for Long Covid?

Once again, risk factors that determine Covid-19 infection are the same for Long Covid. In addition to biological and medical factors, social and economic factors determine who is at higher risk of developing Long Covid. These include factors such as socioeconomic status, access to education, food insecurity, Risk factors for SARS-CoV-2 among patients in the Oxford Royal College of General Practitioners Research and Surveillance Centre primary care network: a cross-sectional study 30 Female gender is associated with long COVID syndrome: a prospective cohort study 31 Clinical characteristics with inflammation profiling of long COVID and association with 1-year recovery following hospitalisation in the UK: a prospective observational study 32 Incidence and risk factors for persistent symptoms in adults previously hospitalized for COVID-19 33 Multiple early factors anticipate post-acute COVID-19 sequelae 29

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working conditions, and housing. Working class communities, for example, had a significantly higher risk of contracting Covid19 early in the pandemic, a disparity that likely persists today. 34

In the United States social and economic disparities are intimately linked to race and ethnicity. Since the pandemic began, prevalence of Covid-19 infections and severe Covid-19 has been higher in black and other minority communities. 35 36 The same is likely true of Long Covid, creating an impetus to include these populations in Long Covid studies. 37 Does breakthrough infection (Covid-19 infection after vaccination) increase my long term chance of severe Covid19 and death?

Some people with breakthrough infections do suffer adverse consequences like severe disease and death. The positive news is vaccination reduces the probability of severe consequences very substantially. Breakthrough infections also increase the chances of Long Covid, particularly outcomes associated with organ failure. 38

Are certain SARS-CoV-2 variants associated with an increased chance of getting Long Covid?

Covid-19 infections caused by the Omicron variant may be less likely to result in Long Covid, regardless of age or vaccination When lockdown policies amplify social inequalities in COVID-19 infections: evidence from a cross-sectional population-based survey in France 35 Assessing differential impacts of COVID-19 on black communities 36 COVID-19 Cases and Deaths by Race/Ethnicity: Current Data and Changes Over Time 37 Researchers fear people of color may be disproportionately affected by long Covid 38 Long COVID after breakthrough SARS-CoV-2 infection 34

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status. Recent data estimates 4.5% of Omicron cases led to Long Covid, compared to 10.8% of Delta cases. 39

Source: Risk of long COVID associated with delta versus omicron variants of SARS-CoV-2

There are currently five known Omicron sub variants in circulation—BA.1, BA.2, BA.2.12.1, BA.4 and BA.5—which have distinct transmission rates and acute disease presentations. The Long Covid risk for each Omicron subvariant is unknown. How does Long Covid impact my chances of Covid-19 reinfection?

Long Covid has no effect on reinfection. In general, reinfections can occur within three months or less of the last infection. 40 Protection acquired from previous infection(s) and vaccines wanes over time. 41 The best protection against reinfection is Risk of long COVID associated with delta versus omicron variants of SARSCoV-2 - The Lancet 40 For unvaccinated, reinfection by COVID-19 is likely, study finds | NSF 41 How Often Can I Be Infected With Covid-19? - The New York Times 39

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using preventative measures—wearing masks, handwashing, and getting vaccines and boosters. Are there biomarkers for Long Covid?

A clinical biomarker is a measurable indication of a biological process, condition, or disease. No definitive biomarkers have been established for Long Covid, which makes it difficult for physicians to diagnose.

At least one preprint study has documented the presence of the SARS-CoV-2 spike protein in the majority of its Long Covid patient cohort, meaning it might make a promising candidate for a Long Covid biomarker. 42 Researchers offered two possible explanations for the lingering spike protein. One is that very low levels of virus replication persist in a privileged cellular compartment. Another is the persistence of subgenomic viral RNAs that produce the spike protein. What is Long Covid Fatigue?

Fatigue that can last from weeks to months afflicts approximately half of patients with Covid-19. The term fatigue does not simply denote being tired during or after an infection, but being persistently and excessively tired after resting or having a good sleep even after the infection resolves. Following Infection, 13 to 33% of participants in most Long Covid studies had persistent fatigue at 16 to 20 weeks after the beginning of their Covid-19 symptoms. 43 This is also seen in many acute systemic infections, such as infectious Persistent circulating SARS-CoV-2 spike is associated with post-acute COVID19 sequelae 43 Long COVID and Post-infective Fatigue Syndrome: A Review 42

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mononucleosis. Fatigue has physical, mental, and psychosocial dimensions and usually is accompanied by other symptoms, demanding a comprehensive approach to assessing and treating it.

What is the difference between Long Covid and chronic fatigue syndrome?

It is true that notable overlap exists between Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome. 44 Fatigue consistently ranks as one of the most common Long Covid symptoms, inhibiting many long haulers from returning to work and resuming their usual routines. So do brain fog and postexertional malaise, two other symptoms frequently reported by patients with chronic fatigue syndrome. Not to mention chronic fatigue syndrome, like Long Covid, is also notoriously difficult to diagnose and treat due to conflation with psychosomatic conditions and/or clinical biases.

While the emergence of Long Covid can be traced back to the Covid-19 pandemic, no such genesis has been confirmed for chronic fatigue syndrome, though plausible causes abound, among them viral infection. Further research comparing the two is needed to determine with greater accuracy the extent of convergence. This has promise to yield breakthroughs in treatments for not only Long Covid and chronic fatigue syndrome, but complex post-infectious illnesses more broadly.

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology 44

CHAPTER 2

How is Long Covid diagnosed and treated?

Are there treatments for Long Covid?

ortunately there are treatments. Long Covid is a constellation of syndromes. No one treatment is appropriate for all. Long Covid care plans are as varied and individualized as Long Covid symptoms. Duration of symptoms, or how chronic the illness is, also determines how they should be treated. Since Long Covid often impacts multiple bodily systems either simultaneously or at discrete intervals, a holistic approach to treatment, involving numerous specialists and appointments and both physical and mental healthcare, is needed to accommodate its complex pathology. A comprehensive care plan might consist of a combination of the following: 

      

Graded exercise and graded activity (i.e. energy management therapy) Sleep therapy

Cognitive behavioral therapy, Nutritional therapy

Homeopathic therapy

Pharmacological therapy Immunotherapy

Antimicrobial therapy

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Only the patient can listen to their body with enough attention and regularity to understand the particularities of their condition. Deciding the terms of recovery must be a collaborative effort between patient and physician(s). Many patients have reported encounters with doctors who dismissed or mischaracterized their symptoms instead of offering understanding and support.

If you are a Long Covid patient who believes your provider does not take your symptoms seriously, strongly consider seeking care elsewhere. Further reading 

How to manage post-viral fatigue after COVID-19

Are there existing treatments for similar conditions that also work for Long Covid? Yes. Even if treatments aren’t available that might conveniently dovetail with Long Covid, there is a degree of overlap between symptoms of Long Covid and conditions similar to chronic fatigue syndrome and potential pathways for care management. Long Covid support groups including Body Politic, though indisposed to recommending medical solutions, circulate resources on pacing, low-exertion exercise, and other techniques for adjusting to new limitations on energy and capability. In these virtual spaces, a long-time sufferer of chronic fatigue syndrome can share advice with a recently diagnosed Long Covid patient, and vice versa. Guides to pacing and management outline strategies for coping with fatigue: monitoring symptoms, prioritizing activities, and enhancing quality of rest. Long Covid patients can borrow from 22

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and experiment with these techniques to develop their own routines for minimizing unnecessary stress and introducing new opportunities for comfort and ease. Further reading 

Pacing and Management Guide for ME/CFS

What do I do if my doctor is dismissing my Long Covid symptoms? Patient advocacy and support groups can connect you with doctors who recognize and treat people with Long Covid respectfully. There are opportunities to participate in clinical trials for new Long Covid therapies. If you have a trusted physician, consulting them is also a good place to start.

With the obvious exception of hospitals and health systems that have established post-Covid care centers, many physicians haven’t been trained to distinguish Long Covid symptoms from other health conditions. Those that can might have lengthy waitlists for appointments. Even so, connecting with other long haulers who share guidance and resources with one another ensures that when more post-Covid care centers open, you’ll be the first to know. Support Groups

Body Politic Support Group

Website: https://www.wearebodypolitic.com/covid-19 Long Covid Support Group (52.5K members)

Website: https://www.longcovid.org/ Facebook: https://www.facebook.com/groups/longcovid/ 23

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COVID Long-Haulers Support Group Canada (16.6K members)

Facebook: https://www.facebook.com/groups/920314451799658/ #MEAction Long Covid-19 Group (1.5K members)

Facebook: https://www.facebook.com/groups/205703087068863/

Advocacy Groups Body Politic

Website: https://www.wearebodypolitic.com/ Twitter: https://twitter.com/itsbodypolitic Patient Led Research Collaborative

Website: https://patientresearchcovid19.com/ Twitter: https://twitter.com/patientled Long Covid Physio

Website: https://longcovid.physio/ Twitter: https://twitter.com/LongCovidPhysio Long Covid Kids (UK-based)

Website: https://www.longcovidkids.org/ Twitter: https://twitter.com/LongCovidKids Long Covid SOS (UK-based)

Website: https://www.longcovidsos.org/ Twitter: https://twitter.com/LongCovidSOS Long Covid Scotland

Website: https://www.longcovid.scot/ Twitter: https://twitter.com/LongCovidScot 24

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Long Covid Europe

Website: https://longcovideurope.org/ Twitter: https://twitter.com/LongCOVIDEurope

Are better treatments for Long Covid on the way? Yes, but the timeline is unclear. Developing effective and accessible treatments will require a combination of more awareness and recognition of Long Covid and more funding for large-scale, long-term studies that meaningfully engage Long Covid patients and build lessons from previous research on postinfectious illnesses. Fewer than 20 clinical trials that focus on Long Covid are underway. 45 While major pharmaceutical companies including Vir Biotechnology and GlaxoSmithKline have alluded to ongoing efforts to test existing drugs for efficacy against Long Covid, whether they will prove successful remains uncertain. Is Paxlovid an effective treatment for Long Covid?

One antiviral developed by Pfizer, Paxlovid, is FDA-approved for high-risk Covid-19 patients and could help alleviate Long Covid symptoms as well. 46 A preprint study found that two Long Covid patients saw significant improvement in their symptoms after taking Paxlovid. 47 More antiviral drugs must be tested for therapeutic effects. What type of doctor treats Long Covid?

Begin by consulting a primary care provider, but the type of care Long Covid patients need depends on their symptoms. Some Drugmakers, scientists begin the hunt for long COVID treatments COVID drug paxlovid might also fight long COVID 47 Effect of oral nirmatrelvir on Long COVID symptoms: a case series 45 46

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patients see pulmonologists, who specialize in lung conditions, or cardiologists, who specialize in the heart. Other patients see physical therapists to work through limitations in mobility and speech therapists to regain the ability to speak during episodes of brain fog. How should I prepare for a visit to a doctor to discuss my Long Covid symptoms?

Begin recording your symptoms in a log or diary. Include descriptive detail and answer as many of the following questions as you can: 

      

What symptoms are you experiencing?

Where does the discomfort occur, and for how long?

What are you doing when symptoms occur? Are you active or resting? Is it night or day? What alleviates your symptoms? What makes them worse?

How do your symptoms impact your daily living and general functioning? Have you experienced these symptoms before? In what context? How does your experience of Long Covid compare with other viral illnesses? Have you recently experienced a loss or other life event that could be impacting your health?

Prior to your visit, review your symptom log and be prepared to summarize its contents for your physician. If possible, organize your symptoms head to toe by bodily system, beginning with the 26

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brain. Since Long Covid is a new condition many doctors don’t have experience treating, it is imperative you communicate your symptoms as clearly and concisely as possible. This might seem overwhelming, but know you can always enlist a loved one to help you prepare or accompany you to your visit.

Be prepared also to provide the physician with your medical and surgical history, family history, and social history (i.e. alcohol and drug use, medications, family history, smoking). Your medication list should include home remedies, or alternative medicines you are taking or have taken. Are there centers that specialize in Long Covid treatment/research? How can I find them?

Across the U.S., nearly 70 hospitals and outpatient care centers have established post-Covid clinics where physicians collaborate with patients to design comprehensive treatment plans consisting of a wide range of supports. 48

The Mount Sinai Center for Post-Covid Care, the first to open in New York, offers patients access to cardiologists, pulmonologists, physical and occupational therapists, psychiatrists, and other care providers across the healthcare system. Integration of Long Covid care saves patients precious time and energy otherwise lost to navigating a dense web of providers and services. Although creating a treatment plan suitable for a multisystem disease is almost always a timeconsuming process of trial and error, without easy access to a post-Covid clinic the journey is significantly more cumbersome. Reimbursement rates, geographic inaccessibility, lengthy waitlists, and exclusionary intake criteria—i.e., positive SARS48

66 hospitals, health systems that have launched post-COVID-19 clinics

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CoV-2 test results—are some of the barriers that limit the reach of post-Covid clinics. 49

To find a post-Covid clinic near you, consult the Survivor Corps database. Are there studies on Long Covid? How can I participate?

The U.S. National Institutes of Health has launched at least one $1.15 billion initiative called RECOVER that will take place over the next four years. But Long Covid advocacy groups have raised concerns that without a robust structure for patient involvement, whereby a panel of patients and researchers work collaboratively to provide input on trial design and implementation, it is unlikely the results of the RECOVER initiative will adequately address the needs and experiences of long haulers. 50

Another major study, run by the University College of London and funded by the National Institute for Health Research, is testing four drugs on 4,500 Long Covid patients over a span of two years. 51 The results of the study, STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding Long Covid to address and transform existing integrated care pathways), will uncover whether these drugs improve the ability of participating long haulers to live, work, and alleviate suffering.

To participate in the RECOVER trial, find your nearest study site. The Long COVID Experience: Evidence from Patient-Led Research and the Patient Community 50 List of Concerns About the RECOVER Initiative November 2021 51 Convalescence long COVID Study 49

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Is there a bias in Long Covid studies? A problem endemic not just to Long Covid research but complex chronic conditions at large is the lack of symmetry between the demographics of study participants and real-life patients. While post-infectious illnesses affect a broad segment of the population, the proportion able to enroll and participate in studies is much more restricted.

Biases around gender, socioeconomic status, geography, and access to healthcare, to name a few, can distort the data collected on the trajectory, treatment, and prevalence of conditions like Long Covid. Misrepresentative data has downstream effects on drug development, policy decisions, and the overall welfare of those most vulnerable. What do I do if my doctor attributes my symptoms to anxiety?

Long Covid is not well understood even by some medical professionals. Know that, although psychological symptoms can be involved, Long Covid is not simply caused by stress or anxiety. 52 If your doctor insists what you are experiencing is anxiety, you may need to self-advocate, to assert your own interests, needs and rights to others. 53

Share resources that connect Long Covid and your symptoms with your doctor. If you have one, show a log of your tracked symptoms to demonstrate your experience. Point out your condition before SARS-CoV-2 infection—this includes your productivity, daily lifestyle and history (or lack thereof) of psychiatric illness. All of the above may illustrate how the 52 53

Are these Cocoa Krispies-loving hamsters a key to cracking long Covid? What is Self-Advocacy?

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aftereffects of Covid-19 disrupt your baseline status, and how you’re trying to regain it.

If all fails, it may be necessary to seek another professional to treat your Long Covid. Is Long Covid an autoimmune disease?

Some forms of Long Covid may be the consequence of virus induced autoimmunity. Other symptoms may have diverse causes. Research is underway to discover the cause of many of the Long Covid symptoms.

We know that regardless of disease severity, SARS-CoV-2 infection can lead to a broad autoantibody response that persists for many months. 54, 55, 56 Some of the autoantibodies found in people who have recovered from acute Covid-19 are also seen in hallmark autoimmune diseases such as lupus and rheumatoid arthritis. The autoantibodies found post-infection are frequently implicated with multi-organ or multi-system issues, which may help to explain more general symptoms such as fatigue, rashes, and muscular weakness. However, presence of certain autoantibodies may not be associated with disease, as has been seen in other post-viral conditions.

Another factor linking Long Covid and autoimmunity is that both Long Covid and autoimmune diseases are more prevalent in

Autoimmunity is a hallmark of post-COVID syndrome | Journal of Translational Medicine | Full Text 55 Paradoxical sex-specific patterns of autoantibody response to SARS-CoV-2 infection | Journal of Translational Medicine | Full Text 56 New-onset IgG autoantibodies in hospitalized patients with COVID-19 | Nature Communications 54

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females than in males. 57, 58 This may be because of differences in immune response between the two sexes. Would therapies for autoimmune diseases help?

There are many treatments for autoimmune disease which attack the cause, notably the symptoms. Some may be useful for Long Covid. This is a subject of active investigation. Future editions of the Family Guide to Long Covid will bring you the latest developments. Who establishes treatment guidelines for Long Covid?

Formal treatment guidelines for Long Covid have been compiled by the CDC. 59 These are recommendations that aim to create best practices amongst physicians to optimize patient care. They are developed through a systematic analysis of the scientific literature and available evidence. 60 Treatment guidelines provide general suggestions for patient care but should not be understood as a one-size-fits-all approach. The CDC lists the following key points: 

The term “Post-COVID Conditions” is an umbrella term for the wide range of physical and mental health consequences experienced by some patients that are present four or more weeks after SARS-CoV-2 infection,

Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App | medRxiv 58 Why autoimmunity is most common in women 59 Interim Guidance on Evaluating and Caring for Patients with Post-COVID Conditions | CDC 60 Clinical Practice Guidelines Development Process - The American Academy of Audiology 57

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

including by patients who had initial mild or asymptomatic acute infection.

Based on current information, many post-COVID conditions can be managed by primary care providers, with the incorporation of patient-centered approaches to optimize the quality of life and function in affected patients. Objective laboratory or imaging findings should not be used as the only measure or assessment of a patient’s well-being; lack of laboratory or imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms or conditions. Healthcare professionals and patients are encouraged to set achievable goals through shared decision-making and to approach treatment by focusing on specific symptoms (e.g., headache) or conditions (e.g., dysautonomia); a comprehensive management plan focusing on improving physical, mental, and social wellbeing may be helpful for some patients.

Understanding of post-COVID conditions remains incomplete and guidance for healthcare professionals will likely change over time as the evidence evolves.

Is there a diagnostic code for Long Covid?

Yes. As of October 1, 2021, Long Covid has been given a diagnostic code in the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM): Post COVID-

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19 condition, unspecified (U09.9). 61, 62 This is an addition to the diagnostic code already present for Covid-19. There is also an ICD-11 code: RA02 for Post COVID definition.

How does a diagnostic code affect insurance coverage?

Diagnostic codes are used by health professionals to specify the type of care they provided their patient. This helps insurance companies understand why the care a patient received was necessary — without a diagnostic code, or with the wrong diagnostic code, insurance companies will likely deny payment. This leaves the patient having to shoulder not only any copays and coinsurance costs, but the full amount. 63 The addition of Post COVID-19 condition to the International Classification of Diseases is a critical step towards enabling insurance coverage for the long-term care those suffering from Long Covid will need.

61 New ICD-10-CM code for Post-COVID Conditions, following the 2019 Novel

Coronavirus (COVID-19)

62 2022 ICD-10-CM Diagnosis Code U09.9: Post COVID-19 condition, unspecified 63 ICD-10 Diagnosis Codes Decide Whether or Not Medicare Will Pay

CHAPTER 3

How can you prevent Long Covid?

How can I avoid Long Covid?

he best way to prevent Long Covid is not to be infected with SARS-CoV-2. Preventing Covid-19 infections includes measures such as social distancing and mask-wearing, especially in crowded venues. There are some prophylactic drugs, such as Evusheld, which reduce the risk of SARS-CoV-2 infection preexposure, but these are not yet widely available. For those eligible, schedule your mRNA vaccines as soon as possible. 64 Immunodeficient diseases such as diabetes or asthma increase the chances of Long Covid post-infection. 65 Those with greater risks can continue to take extra precautions when attending social events to prevent infection in the first place. Do vaccines prevent Long Covid?

Vaccination may reduce the likelihood of Long Covid. Vaccines appear to protect against severe disease and death from the current generation of variants, but how durable that protection is and whether or not it will protect against future variants is uncertain. By reducing the risk of Covid-19 infection, vaccines reduce the risk of Long Covid. Studies also show that vaccinated individuals 64 65

Evidence grows that vaccines lower the risk of getting long COVID New Research Hints at 4 Factors That May Increase Chances of Long Covid

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are less likely to experience Long Covid symptoms that impact their daily functioning. 66 67 Do antiviral drugs reduce my chance of developing Long Covid?

We do not have enough information to answer this question definitively. There is early evidence Paxlovid may reduce severity and length of Long Covid symptoms. 68 Whether Paxlovid taking during infection reduces incidence of Long Covid remains in question. 69

66 Long Covid after breakthrough SARS-CoV-2 infection | Nature Medicine 67 Efficacy of Long Covid Vaccination

68 Can drugs reduce the risk of Long Covid? What scientists know so far 69 The Promising Treatment for Long Covid We're Not Even Trying

CHAPTER 4

How are different populations affected by Long Covid?

Am I at high risk for Long Covid because I have a weak or damaged immune system?

mmunocompromised people have a higher risk of developing severe symptoms during an initial Covid-19 infection. This may increase the chance of Long Covid and of chronic COVID because of their compromised immune response. If I have had severe Covid-19 symptoms, am I more likely to have Long Covid?

Yes, the more severe the symptoms during Covid-19 infection, the more likely you will develop Long Covid. Is Long Covid more common in women or men?

Women are more likely to develop Long Covid-related health consequences months after infection compared to men. 70

A review published in June 2022 aggregating data from 35 studies found that incidence of Long Covid symptoms in women was 22% higher than in men. 71 The authors called for more research that can provide insight into the disparity, which has Sex-Related Differences in Long-COVID-19 Syndrome | Journal of Women's Health 71 Sex differences in sequelae from COVID-19 infection and in long COVID syndrome: a review 70

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also been observed in chronic fatigue syndrome, autoimmune disorders, and other complex chronic conditions. 72

How does Long Covid impact disadvantaged communities?

Severe instances of Long Covid require significant care, either at home or at the hospital. Disadvantaged families face income limitations, lack of access to affordable hospitals, two workingparent homes, and more. Racial minorities may be particularly impacted by Long Covid in reference to caregiving. One in 310 Black children experienced the loss of a parent or caregiver in the first year of the pandemic compared to 1 in 738 white children. 73

Poor families may experience similar difficulties. Among married-couple families, 62.3% had both parents employed in 2021. 74 Most of these are by necessity to pay rent, bills, food and education costs, and so on.

The Covid-19 pandemic also catalyzed economic downturns that particularly affected low and middle-income families. Many inperson workers were furloughed or lost their jobs entirely in 2020. In 2022, as many as two-thirds of American families live paycheck to paycheck and many millions are uninsured or underinsured. 75 Extended hospitalizations can cost tens of thousands and upwards of millions of dollars. In-home care is similarly unaffordable. 72

How Long Covid Is Shaping Up To Be A Feminist Fight

Long Covid Could Do Serious Damage in the Black Community - The Sacramento Observer 74 Employment Characteristics of Families - 2021 75 As inflation heats up, 64% of Americans are now living paycheck to paycheck 73

CHAPTER 5

How does Long Covid affect children?

Can children under the age of 15 contract Covid-19?

hildren under the age of 15 can contract Covid-19. Unlike adults, they are less likely to become severely ill. 76

Babies are at slightly higher risk for serious illness than older children, but overall Covid-19 infant and child mortality is rare. 77 Do children experience the same Covid-19 symptoms as adults?

Children display the classic signs of Covid-19—cough, fever, sore throat, runny nose, diarrhea, nausea—though more mildly than in adults. A child may have very few or many symptoms, but in either case will rarely need to be hospitalized. Most can recover at home. Children can also display no symptoms. Studies estimate up to half of infected children have either very mild or no symptoms at all. 78 This age group is most likely to spread Covid-19 without knowing, as they remain infectious despite the lack of symptoms. 79 COVID-19 in babies and children - Mayo Clinic Children and COVID-19: State-Level Data Report 78 Asymptomatic SARS-CoV-2 infection: A systematic review and meta-analysis | PNAS 79 Virologic features of SARS-CoV-2 infection in children | medRxiv 76 77

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How do newborns contract Covid-19? In the hospital, newborn transmission occurs primarily through close contact with sick caregivers after birth, not through the womb. 80 Parents can mitigate risks by wearing a mask and washing their hands before and after caring for their child. If a caregiver does test positive once at home, CDC protocols recommend isolating and allowing a healthy caregiver to care for the baby in the meantime. 81

Covid-19 is also unlikely to spread through breast milk. 82 As a general rule, regardless of Covid-19 status, it is best to wash hands with soap and water before breastfeeding/expressing breast milk. Can children get Long Covid?

Though it is not as common as it is in adults, children can develop Long Covid symptoms.

Around 13-35% of children who recover from Covid-19—mild cases included—experience Long Covid symptoms. 83 Doctors and parents of children with Long Covid have reported that symptoms interfere with their ability to complete schoolwork and attend class. 84

Fatigue and brain fog are the most commonly reported symptoms. This age group is more prone to headaches and abdominal pain than older cohorts and less prone to post-Covid FAQs: Management of Infants Born to Mothers with Suspected or Confirmed COVID-19 81 Breastfeeding and Caring for Newborns if You Have COVID-19 | CDC 82 COVID-19 in babies – here’s what to expect 83 Preliminary evidence on long COVID in children 80

Researchers are studying long COVID in kids -- here's what they know so far 84

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lung damage. 85 Other pediatric symptoms include loss of taste and smell, frequent headaches, muscle soreness, joint pain, general weakness, trouble sleeping, feelings of anxiety/mood changes, and even rashes. 86 87

Is multisystem inflammatory syndrome in children (MIS-C) the same as Long Covid?

Long Covid and Multisystem Inflammatory Syndrome (MIS) are two distinct post-Covid syndromes.

Multisystem inflammatory syndrome is a rare complication of SARS-CoV-2 infection. It is characterized by an excessive immune response and extensive inflammation of the body and organ systems—the heart, brain, kidneys, digestive system, lungs, skin, and eyes. 88 It is most frequently seen in school-aged children, labeled multisystem inflammatory syndrome in children (MIS-C), but has since also been confirmed in adults (MIS-A), defined as anyone 21 years of age or older. 89, 90

Since the beginning of the pandemic, 8,210 pediatric Covid-19 patients in the United States have met the MIS-C case definition. There have been 68 total deaths. 91 Data from a Danish study suggests the incidence of MIS-C in both vaccinated and What is long covid? Current understanding about risks, symptoms and recovery. - The Washington Post 86 Pediatric Post-COVID Program | Children's National Hospital 87 An 11-year-old with long Covid says it is 'very difficult and frustrating'. 88 Multisystem Inflammatory Syndrome (MIS) 89 MIS-C and COVID-19: Uncommon but Serious Inflammatory Syndrome in Kids and Teens | Johns Hopkins Medicine 90 Clinical Characteristics of Multisystem Inflammatory Syndrome in Adults: A Systematic Review | Global Health | JAMA Network Open 91 CDC COVID Data Tracker 85

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unvaccinated children and adolescents infected by the Omicron variant is lower than with previous strains. 92

Long Covid and MIS-C share some overlap in symptoms, especially heart palpitations, dizziness, and shortness of breath. The hallmark symptom of MIS-C is a high fever that persists for three or more days in combination with gastrointestinal issues such as diarrhea, abdominal pain, and vomiting. Bloodshot eyes, the onset of a rash, and in severe cases, pale or blue-colored skin and lips, are also associated with MIS-C. 93 If caught in time, MIS-C cases are treatable via intravenous antibodies, steroids, and anti-inflammatory drugs. These are clear therapeutic interventions that can help patients recover. How do I support the educational needs of my child with Long Covid?

Students with Long Covid are eligible for accommodations under the Individuals with Disabilities Education Act (IDEA) 94 and Section 504 of the Rehabilitation Act of 1972 (S. 504). These laws indicate that students with disabilities are entitled to free equal and appropriate access to educational opportunities at federally funded schools. 95 These laws state that eligible students may be entitled to special education and related services based on their health Risk and Phenotype of Multisystem Inflammatory Syndrome in Vaccinated and Unvaccinated Danish Children Before and During the Omicron Wave 92

Clinical Characteristics of 58 Children With a Pediatric Inflammatory Multisystem Syndrome Temporally Associated With SARS-CoV-2 | Adolescent Medicine | JAMA 94 Long Covid under Section 504 and the IDEA 95 Workbook focuses on supporting students with Long Covid 93

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impairment. If Long Covid prevents a student from attending school in person, they may be entitled to virtual or assisted learning opportunities. Other possible accommodations could include “extended time on tests, reduced-distraction testing environments, audio recording for classes, note-taking support, alternative text materials, priority scheduling, and reduced course load.”

In addition to difficulties people with Long Covid may face in the classroom, there are added stresses to returning to schools, such as in-person social dynamics, navigating between classes on large campuses, and close-quarters interactions with students that may be infected.

In most cases prior to the pandemic, schools could allow sick students to complete work from home and resume classes whenever possible, but Long Covid introduces the unknown characteristic of the disease course. Nobody knows exactly how long a ten-year-old child with Long Covid will experience trouble concentrating, fatigue, or vision problems.

CHAPTER 6

How does Long Covid affect senior populations?

Are seniors more likely to get Long Covid?

ata from the CDC shows that roughly one in four seniors (age 65+) experienced Long Covid after Covid-19, compared to one in five adults (18-64). 96 The exact frequency of Long Covid in adults ranges from roughly 15 to 30%, but seniors are certainly more likely to face long-term health complications. What precautions should seniors take when recovering from a Covid-19 infection?

There is preliminary evidence that the early use of Paxlovid may lower the chance of developing Long Covid after a Covid-19 infection. These reports are unconfirmed and require additional research.

The best precaution for an elderly person recovering from Covid-19 is to monitor symptoms in the weeks after infection to monitor symptom dissipation. If issues persist, immediately contact a physician to treat symptoms or damaged organs. How can seniors tell the difference between Long Covid symptoms and age-related complications?

"Long COVID" or "post-COVID" symptoms affect 1 in 4 seniors who survived infection, study finds - CBS News 96

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Common symptoms of Long Covid include fatigue, shortness of breath, elevated heart rate, muscle and joint pain, sleep disruption, and brain fog. More severe symptoms include blood clots and damage to major organs such as the heart, lungs, and brain. It is difficult to attribute these symptoms to Long Covid in the elderly as older adults regularly experience these issues later in life. 97 Physicians may write off Long Covid in the elderly as aspects of growing older. This could lead to improper treatment, the use of less effective medication, or a lack of treatment altogether.

97' That's Just Part of Aging': Long Covid Symptoms Are Often Overlooked in

Seniors | Kaiser Health News

CHAPTER 7

How does Covid affect the organs longterm?

cute SARS-CoV-2 infection may result in short or long-term damage to critical organs. This section will include organ damage as a feature of Long Covid in order to acknowledge the lasting disability that can occur.

For treatment and reimbursement purposes, as long as there is clear and specific organ damage, the condition will not be classified as Long Covid but rather injury to that specific organ (e.g. kidney disease, not Long Covid kidney disease). Long Covid is a diagnosis of exclusion, meaning there is no other clear medical evidence such as measurable damage to a specific organ or tissue. Patients will be diagnosed with Long Covid for the purpose of medical treatment only if the underlying cause of the symptoms cannot be directly pinpointed. 98 Can acute SARS-CoV-2 infection cause long-term lung damage?

SARS-CoV-2 infection can affect the lungs, causing complications such as pneumonia, sepsis (infection that spreads through the bloodstream), and bronchitis. It can take months to a year for the lungs to recover to pre-Covid levels. 99 This is especially true for Recognizing the Clinical Sequelae of COVID-19 in Adults: COVID-19 LongHaulers - PMC 99 COVID-19 Lung Damage | Johns Hopkins Medicine 98

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more severe Covid-19 cases, in which the damage to the lungs takes months to heal. 100

Covid-19 lung fibrosis, or scarring, develops as a result of severe lung inflammation. Acute infection causes the lung’s air sacs to scar and thicken, leaving them permanently unable to oxygenate blood. 101 This is often seen when Covid-19 pneumonia progresses to Acute Respiratory Distress Syndrome (ARDS), a type of lung failure. Other scarring risk factors include smoking, advanced age, comorbidities such as diabetes, hypertension and coronary artery disease, and prolonged ICU stay/mechanical ventilation for Covid-19. 102 Lung fibrosis is irreversible and can cause lasting impacts on breathing and exercise beyond acute SARS-CoV-2 infection. Common lung symptoms include shortness of breath/difficulty breathing (dyspnea), cough, chest pain and/or fatigue. 103 Difficulty breathing, especially during exercise, and fatigue in particular are often reported in people with Long Covid. 104 How can I assess lung damage caused by Covid-19?

Clinical professor Alejandro Comellas recommends requesting a computed tomography (CT) scan to look for small-airway abnormalities; a standard breathing capacity test is unlikely to detect anything unusual for those with Long Covid, but a CT scan might. 105 Treatment plans would focus on treating symptoms and rehabilitating lung function. 100 101 102

COVID-19 Lung Damage | Johns Hopkins Medicine

Treatment for pulmonary fibrosis | Asthma + Lung UK Post covid 19 pulmonary fibrosis. Is it real threat?

Long COVID or Post-COVID Conditions | CDC Phenotyping long COVID | European Respiratory Society 105 Long COVID May Bring Long-Term Lung Damage | Health News | US News 103 104

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Can acute SARS-CoV-2 infection cause long-term Kidney damage? SARS-CoV-2 can cause long-term kidney damage. The kidneys are a direct target for the Covid-19 virus, which can invade highly specialized kidney cells called podocytes. 106 Kidney injury can also occur as a consequence of inflammation in other parts of the body after viral exposure, or a lack of oxygen in the blood as a result of Covid-related pneumonia. 107 The long-term result of such damage is kidney disease and/or kidney failure. More information can be found on Covid-19 and podocytes in the article, Targets for Infection: How SARS-CoV-2 Damages the Kidneys. Contracting Covid-19 increases the likelihood of kidney damage no matter the severity of one’s symptoms. People who were hospitalized or went to the ICU for SARS-CoV-2 infection have the highest risk—about 30% for those hospitalized, and more than 50% for those in ICU. 108 People with severe cases should take special precautions. 109 Kidney impact may change as Covid19 variants continue to evolve, as experts believe newer variants may be less capable of infecting kidney cells. 110 About 90% of people with kidney injury do not experience pain or other telling symptoms. 111 It is important to detect and treat early on. 112 Severe kidney damage can lead to kidney failure, and Frontiers | SARS-CoV-2 Employ BSG/CD147 and ACE2 Receptors to Directly Infect Human Induced Pluripotent Stem Cell-Derived Kidney Podocytes 107 COVID-19 can directly infect and damage human kidney cells -- ScienceDaily 108 Coronavirus: Kidney Damage Caused by COVID-19 | Johns Hopkins Medicine 109 Kidney Outcomes in Long COVID | American Society of Nephrology 110 COVID-19 can directly infect and damage human kidney cells -- ScienceDaily 111 COVID-19 long-haulers at risk of developing kidney damage, disease 112 Kidney Disease: The Basics 106

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the only treatment options at that stage are dialysis or kidney transplant surgery. 113 How can I assess kidney damage caused by Covid-19?

After catching Covid-19, the best course of action is to request tests which identify kidney damage: an Albumin-Creatinine Ratio (ACR) urine test and a glomerular filtration rate (GFR) blood test. If kidney damage is detected early, a doctor can prescribe treatments to keep the kidneys functioning for as long as possible. 114 Lifestyle changes to diet and exercise may also be recommended, especially if that person has other risk factors such as diabetes and hypertension.

Can acute SARS-CoV-2 infection cause long-term heart damage?

Covid-19 can have long-lasting impacts on the heart. The SARSCoV-2 virus damages the heart’s blood vessels without infecting the cells directly. 115 The dysfunction to these cells—pericytes— seemingly accounts for Covid-19’s vascular complications. More on Covid-19 damage to heart pericytes can be found in the article Pericyte Damage: Surprising Cause of Covid-Related Myocarditis.

Covid-19 infection increases the risk of several heart issues. This includes blood clots (thrombosis), heart inflammation (myocarditis or pericarditis), irregular heartbeat (dysrhythmias), heart attacks (myocardial infarction), and heart Choosing A Treatment For Kidney Failure Early Kidney Disease Treatment in Baltimore | University of Maryland Medical Center 113 114

The SARS-CoV-2 Spike protein disrupts human cardiac pericytes function through CD147 receptor-mediated signalling: a potential noninfective mechanism of COVID-19 microvascular disease 115

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failure. 116 This could be caused by Covid-19 damaging the right side of the heart. 117

Contracting any form of Covid-19—be it severe, mild or asymptomatic—increases risk of heart complications. People who did not have heart problems or pre-existing conditions to begin with still experience this heightened risk. 118 Cardiologist Saurabh Rajpal describes Covid-19 itself as a risk factor for heart disease, as one would obesity or diabetes. 119

Lingering Covid-19-related heart issues manifest through chest pain, shortness of breath (dyspnea), fatigue, palpitations, arrhythmias (irregular heartbeats), fainting (syncope), and others. 120 Elevated blood pressure is also possible. 121 These issues can cause problems with exercise ability and general mental/physical well being. Current data suggests these heartrelated symptoms may persist for more than a year. 122 Treatment for Covid-19-related heart complications depends on an individual’s type of heart disease. For example, those suffering with rare Covid-19-related myocarditis may receive immunosuppressive drugs (e.g. corticosteroids) and be Long Covid: post-acute sequelae of COVID-19 with a cardiovascular focus | European Heart Journal | Oxford Academic 117 Right ventricular dysfunction in patients with COVID‐19 pneumonitis whose lungs are mechanically ventilated: a multicentre prospective cohort study McCall - - Anaesthesia - Wiley Online Library 118 Long-term cardiovascular outcomes of COVID-19 | Nature Medicine 119 Five months post-covid, Nicole Murphy's heart rate is still doing strange things 120 Long Covid: post-acute sequelae of COVID-19 with a cardiovascular focus | European Heart Journal | Oxford Academic 121 2022 ACC Expert Consensus Decision Pathway on Cardiovascular Sequelae of COVID-19 in Adults: Myocarditis and Other Myocardial Involvement, PostAcute Sequelae of SARS-CoV-2 Infection, and Return to Play 122 Long-term cardiovascular outcomes of COVID-19 | Nature Medicine 116

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monitored to prevent worsening symptoms. 123 Athletes with myocarditis will likely abstain from training for three to six months. 124 Other possible heart diseases include cardiomyopathy (heart muscle disease) and ischemic heart disease (heart disease caused by narrowed heart arteries). Some people may experience cardiovascular syndrome rather than heart disease. 125 In these cases, it is difficult to pinpoint the exact cause of the issues experienced. Evaluation and management will address the most prominent symptoms instead. People suffering from exercise intolerance or a rapid heart rate may be advised to slow all activities in favor of rest, or to replace all standing exercises with lying exercises (i.e. rowing, swimming or cycling). 126 Each person should discuss their case and tailor their options with a medical practitioner.

123 2022 ACC Expert Consensus Decision Pathway on Cardiovascular Sequelae

of COVID-19 in Adults: Myocarditis and Other Myocardial Involvement, PostAcute Sequelae of SARS-CoV-2 Infection, and Return to Play

124 ACC Issues Clinical Guidance on CV Consequences of COVID-19 - American

College of Cardiology.

125 3 tips for doctors trying to manage long COVID's cardiac symptoms |

American Medical Association

126 ACC Issues Clinical Guidance on CV Consequences of COVID-19 - American

College of Cardiology.

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Source: Cardiac Complications After SARS-CoV-2 Infection and mRNA COVID-19 Vaccination — PCORnet, United States, January 2021– January 2022

Does Covid-19 cause blood clots?

Acute SARS-CoV-2 inflammation can lead to abnormal blood clotting in the body—in the lungs, legs, brain, kidneys and peripheral blood vessels. 127 This is seen most often in people hospitalized for Covid-19, but obesity, diabetes and heart disease can increase this risk. 128

While the body naturally dissolves some clotting, issues arise when the clots form faster than the body can dissolve them. Serious hypercoagulation to the lungs (pulmonary embolism) can cause shortness of breath, chest pain, lightheadedness and more. A ministroke or stroke occurs if clots block vessels in the brain, heart attack if blood flow is reduced in the heart. An uncommon symptom caused by blood clotting is “Covid toe”: an Long COVID-19 Exercise Capacity Linked to Abnormal Blood Clotting Markers - Hematology.org 128 Coronavirus and Blood Clots: Risks, Complications, Prevention 127

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itchy, reddish-purple rash around the toes that resembles frostbite. 129

The risk for blood clots can persist for months after the acute phase for both mild and severe cases. Bleeding events can last for up to two months, blood clots in the leg (deep vein thrombosis) up to three months, and pulmonary embolism up to six months. 130 Do blood clots associated with acute infection contribute to Long Covid?

New studies suggest that microclots—blood clots which can only be seen under a microscope—could create the common symptoms of Long Covid and worsen them. 131 Microclotting during the acute phase which usually normalizes does not settle and develops into Long Covid microclots. The clots circulate, reducing oxygen and blood cell flow throughout the body. This mechanism may contribute to Long Covid brain fog and fatigue. When left untreated, severe microclotting could cause irreparable cell damage to organs like the heart or brain.

Typically, blood thinner medication is prescribed to slow down clot production. 132 HELP apheresis is another alternative which filters out microclots in a dialysis-style treatment. 133 The hope is to implement blood-clotting therapies early in treatment to Are COVID Toes and Rashes Common Symptoms of the Coronavirus?. Post-COVID Risk for Blood Clot Lasts at Least 6 Months 131 A central role for amyloid fibrin microclots in long COVID/PASC: origins and therapeutic implications | Biochemical Journal | Portland Press 132 Combined triple treatment of fibrin amyloid microclots and platelet pathology in individuals with Long COVID/ Post-Acute Sequelae of COVID-19 (PASC) can resolve their persistent symptoms 133 Could microclots help explain the mystery of long Covid? | Resia Pretorius | The Guardian 129 130

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alleviate Long Covid symptoms. Note that this type of Long Covid treatment is new, and may be difficult to acquire. How can I assess damage caused by Long Covid microclots?

People with Long Covid will have a hard time confirming if microclots are causing their maladies. The symptoms could be a result of several complications besides microclotting, and there are currently no standard blood tests readily available at hospitals or laboratories. 134

Can acute SARS-CoV-2 infection lead to lasting thyroid complications?

Covid-19-related thyroiditis often creates hormone imbalances that impact body functions. Between 15 and 30% of people with Covid-19 develop thyroid problems after infection, with some having issues for 12 months or more. 135 Thyroiditis is the inflammation of the thyroid gland, which regulates hormone production that impacts the metabolism and other major organs.

Two common thyroid dysfunctions following Covid-19 infection include hypothyroidism and thyrotoxicosis. 136 Hypothyroidism is where the thyroid does not create and release enough thyroid hormone into the bloodstream. Thyrotoxicosis is where excessive levels of thyroid hormone circulate in the bloodstream. Both dysfunctions cause serious damage to the host. Covid-19-related thyroid complications are treatable in most cases. Hypothyroidism is treated with synthetic thyroid Could Microclots Be a Hidden Cause of Long COVID Symptoms? How does COVID-19 impact the thyroid? 136 Thyroid and COVID-19: a review on pathophysiological, clinical and organizational aspects 134 135

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hormone levothyroxine. Thyrotoxicosis is treated with antithyroid drugs such as methimazole and propylthiouracil, as well as radioactive iodine.

The biggest concern for people with thyroid-related Long Covid is thyroiditis. The typical treatment for thyroid inflammation is aspirin and rest, or steroids in prolonged cases. If thyroid dysfunctions continue for months after infection, contact a specialist to discuss the best approach, as rest and aspirin are likely not enough. Can acute SARS-CoV-2 infection lead to lasting gastrointestinal issues?

Persistent infection of the gastrointestinal tract may cause at least some fraction of Long Covid. Increasing evidence suggests the virus may persist in the gut undetected that could give rise to systemic damage.

Some of the most common Covid-19 symptoms are gastrointestinal, including nausea, vomiting, and diarrhea. Roughly one third of people with Covid-19 report gastrointestinal complaints. One study found that 17.6% of people with Covid-19 experience gastrointestinal symptoms. 137 Diarrhea is the most common, affecting 11.5%.

Those with severe Covid-19 are in danger of a wide range of gastrointestinal issues. These include, but are not limited to, elevated liver transaminases, acute cholecystitis, acute pancreatitis, ileus and feeding intolerance, and mesenteric ischemia. The mortality rate for people with mesenteric ischemia is as high as 40%. This is an artery blockage that cuts COVID Long-Haulers: Gastrointestinal System | The Coronavirus Visualization Team 137

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blood flow to the intestines, damaging related organs and often resulting in organ failure.

One study found that 44% of those with Covid-19 report gastrointestinal symptoms 90 days after Covid-19 hospitalization. The most common symptom was loss of appetite (24%), but other symptoms included nausea (18%), acid reflux (18%), diarrhea (15%), abdominal distension (14%), and abdominal pain (7%). The typical recommendations for these symptoms are rest, drinking plenty of fluids, eating certain fiber-rich foods (e.g. bananas), and over-the-counter medications such as laxatives. However, if these symptoms extend several weeks or months after infection, please contact a specialist about next steps.

Can acute SARS-CoV-2 infection lead to lasting brain damage?

Many of the most common Long Covid symptoms relate to the brain. Between 50 to 90% of hospitalized Covid-19 patients develop at least one type of cognitive or functional impairment. 138,139 Impairment can last up to 12 months after initial infection, and likely beyond. Persistence of cognitive issues three months after infection is correlated with an increase in depression one year on. Cognitive issues have also been

Trajectory of cognitive impairments over 1 year after COVID‐19 hospitalisation: Pattern, severity, and functional implications 139 A prospective study of long-term outcomes among hospitalized COVID-19 patients with and without neurological complications 138

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recorded in patients with only mild infections that did not require hospitalization. 140,141

Cerebrospinal fluid (CSF) helps cushion the brain from injury and helps provide it with vital nutrients. Inflammation of the brain can change the protein content of cerebrospinal fluid. In many Covid-19 patients, the cerebrospinal fluid is filled with inflammatory proteins. 142 The presence of such markers in the brain is correlated with a loss of gray matter, meaning the brain shrinks. Such shrinkage has been observed in the brains of people with Covid-19 no matter the severity of infection. 143 Whether this damage is permanent is not yet known.

The loss of brain size in those who required hospitalization for their Covid-19 mirrors the loss in size seen between the ages of 50 and 70. This is roughly equivalent to losing 10 IQ points. 144 The area of the brain responsible for memory is particularly strongly affected, with a reduction of brain mass ranging from 0.2% to 2%. Middle aged adults and beyond lose only around 0.2% to 0.3% of brain volume a year.

There are currently no specific treatment options for the cognitive impairment caused by Covid-19. Can acute SARS-CoV-2 infection lead to lasting liver damage?

Frequent neurocognitive deficits after recovery from mild COVID-19 | Brain Communications | Oxford Academic 141 Persistent COVID-19-associated neurocognitive symptoms in nonhospitalized patients | SpringerLink 142 Brain cortical changes are related to inflammatory biomarkers in hospitalized SARS-CoV-2 patients with neurological symptoms | medRxiv 143 SARS-CoV-2 is associated with changes in brain structure in UK Biobank | Nature 144 Lasting brain impacts of severe COVID-19 equivalent to 20 years of ageing | Imperial News 140

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Liver damage has been reported in hospitalized Covid-19 patients with a rate of incidence ranging from 10.6 to 69%. 145 Abnormal liver function manifests itself as elevated aspartate amino transaminase (AST), alanine aminotransferase (ALT), and bilirubin levels. Although more common in severe cases of Covid-19, liver damage can still occur in mild cases. 146, 147

Liver damage in Covid-19 patients is usually mild to moderate, and returns to normal after recovery from acute infection without the need of any special treatment. 148, 149 Severe liver damage is rare, and usually lasts only a short period of time; patients can be given drugs such as L-ornithine-L-aspartate to help with recovery. 150 Research is ongoing to understand the pediatric implications of Covid-19-related liver damage. A case study reports the delayed development of hepatitis in children who had mild/asymptomatic Covid-19. 151 The mechanism is not yet understood, but the authors speculate the cause to be a postinfection immune reaction (similar to MIS-C). Another alternative explanation is that SARS-CoV-2 infection causes Liver injury in COVID-19: clinical features and treatment management | Virology Journal | Full Text 146 Manifestations and prognosis of gastrointestinal and liver involvement in patients with COVID-19: a systematic review and meta-analysis - The Lancet Gastroenterology & Hepatology 147 Hematologic, biochemical and immune biomarker abnormalities associated with severe illness and mortality in coronavirus disease 2019 (COVID-19): a meta-analysis 148 Potential Effects of Coronaviruses on the Liver: An Update | Medicine 149 Liver injury in critically ill patients with COVID-19: a case series | Critical Care | Full Text 150 Etiology and management of liver injury in patients with COVID-19 151 Long COVID-19 Liver Manifestation in Children 145

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immune dysregulation, leaving the body vulnerable to other infectious agents that cause hepatitis. Can acute SARS-CoV-2 infection lead to lasting pancreatic damage?

In rare cases, SARS-CoV-2 can damage the pancreas. 152, 153, 154 This is evidenced by raised amylase and lipase levels, both of which are biomarkers for pancreatic damage. Generally, this damage manifests as acute pancreatitis—a condition where the pancreas becomes inflamed for a short period of time. Symptoms of acute pancreatitis include: nausea, vomiting, fever, and the sudden onset of extreme abdominal pain. Most patients recover fully from acute pancreatitis within a week. 155

Preliminary evidence suggests SARS-CoV-2-induced damage to the pancreas may also lead to high blood sugar (hyperglycemia), altered glucose metabolism, and, in some cases, the onset of type 1 diabetes. 156, 157, 158 Onset of type 1 diabetes was not associated with any pre-existing risk factors such as obesity, pre-diabetes, or recent administration of corticosteroids. Further research is required to confirm these findings. 152 Frontiers | Emerging Clinical Features of COVID-19 Related Pancreatitis: Case

Reports and Review of the Literature 153 Pancreatic damage in COVID‐19: Why? How? - Bacaksız - 2021 - International Journal of Clinical Practice - Wiley Online Library 154 COVID-19 induced acute pancreatitis after resolution of the infection ScienceDirect 155 Acute pancreatitis - NHS. 156 Consequences of COVID-19 for the Pancreas | HTML 157 SARS-CoV-2 infects and replicates in cells of the human endocrine and exocrine pancreas | Nature Metabolism 158 New-Onset Diabetes in COVID-19: Time to Frame Its Fearful Symmetry | SpringerLink

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If you are experiencing a sudden onset of symptoms that mirror type 1 diabetes following Covid-19, reach out to a healthcare provider. If necessary, they may refer you to an endocrinologist. What’s the relation between Long Covid and the vagus nerve?

There hasn’t been sufficient research on the impact of SARSCoV-2 on the vagus nerve to establish whether it may be contributing to Long Covid symptoms.

There is only one study—still unpublished and yet to undergo peer-review—that suggests SARS-CoV-2 may be able to damage the vagus nerve. 159 The authors note: “In this pilot evaluation, most Long Covid subjects with vagus nerve dysfunction symptoms had a range of significant, clinically-relevant, structural and/or functional alterations in their vagus nerve, including nerve thickening, trouble swallowing, and symptoms of impaired breathing. Our findings so far thus point at vagus nerve dysfunction as a central pathophysiological feature of Long Covid.”

Until more research is conducted in this field and additional data gathered, it remains unclear to what extent damage to the vagus nerve plays a part in Long Covid. It is possible, but currently there is a paucity of evidence. Can acute SARS-CoV-2 infection lead to lasting eye damage?

Most likely, no. The Covid-19 virus does affect the eyes in 11 to 32% of cases. Studies suggest the SARS-CoV-2 virus can infect cells in the eye and rapidly replicate within the first 42 hours of Pilot study suggests long COVID could be linked to the effects of SARS-CoV-2 on the vagus nerve 159

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infection. However, after 72 hours virus-caused plaque settles to levels seen at the 24 hour time point. 160 This process is further explained in the article In the Eye of the Storm: How Covid-19 Impacts the Eye. The symptoms caused by this process seem to be short term and normally do not cause visual impairment. Some short-lived ocular symptoms include soreness, dryness, itchiness, tearing, a foreign body sensation, and blurred vision. 161 162 Conjunctivitis—typically known as pink eye—is the most common eye disease associated with post-Covid infection. 163 This eye inflammation occurs in 1 to 3% of Covid-19 cases 164, manifesting as redness in one or both eyes days—or weeks— after initial infection. 165 Avoid touching the discharge from a pink eye; this can contaminate surfaces and eventually spread it to others. 166 The redness should subside with doctor-prescribed eye lubricants and preservative-free eye drops.

In rare cases, Covid-19 infection may increase the risk of developing blood clots in the eye (retinal vein occlusion) in a similar way the virus does to other blood vessels in the body; this could be from the infection itself, or a side effect from lack 160 SARS-CoV-2 infects and replicates in photoreceptor and retinal ganglion cells

of human retinal organoids 161 Sore eyes as the most significant ocular symptom experienced by people with COVID-19 162 Ocular Manifestations of COVID-19: A Systematic Review and Meta-analysis - PMC 163 Prevalence of and Short-term Changes in Conjunctival Manifestations Among Patients With SARS-CoV-2 Infection | External Eye Disease | JAMA Network Open 164 Conjunctivitis and COVID‐19: A meta-analysis - Loffredo - 2020 - Journal of Medical Virology - Wiley Online Library 165 COVID-19 and Eye: A Review of Ophthalmic Manifestations of C... : Indian Journal of Ophthalmology 166 Eye Care During COVID-19: Masks, Vaccines and Procedures - American Academy of Ophthalmology

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of physical activity or worsening systemic blood pressure. Preexisting conditions such as diabetes, hypertension or hyperlipidemia may further this risk. 167 Generally, vein blockages in the eye can increase blood pressure in the eye or cause fluid to leak there, leading to diseases which distort vision: glaucoma and macular edema respectively. 168 In these cases, an ophthalmologist might prescribe anti-VEGF to lessen the swelling. 169 How does Covid-19 contribute to hair loss?

Hair loss is not a direct symptom of Covid-19. 170 However, in the months following severe fever, noticeable hair loss is often reported. Fever is one of the most common symptoms of Covid19, meaning many severe Covid-19 cases may lead to some hair loss.

Hair typically begins to shed two to three months after illness ends. This occurs due to a higher than average amount of hair entering the shedding phase at the same time, which is forced by fever. Hair loss could continue up to nine months after it begins, however almost all instances of Covid-19-related hair loss will conclude and hair volume will return to normal in due course.

Hair loss can also be triggered by physical and emotional stress, which is common in those with Covid-19. However, if you believe your hair loss is not related to fever or stress, consult a dermatologist for potential treatment. Changes in the Incidence of Retinal Vascular Occlusions After COVID-19 Diagnosis | Ophthalmology 168 Retinal vein occlusion: MedlinePlus Medical Encyclopedia 169 Practical Guidelines for RVO Management - Retina Today 170 Can COVID-19 cause hair loss? 167

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Can acute SARS-CoV-2 infection cause bone damage? Infection with SARS-CoV-2 can cause quick and significant bone loss in severe and even mild cases. One study using mouse models observed a 25% decrease in bone mass within two weeks of infection and a 63% increase in osteoclasts. 171 This suggests the disease also leads to increased chance of osteoporosis, causing brittle and weak bones. This puts the elderly at high risk as they are least likely to naturally regenerate lost bone matter. A more recent study on Syrian hamsters corroborates the mouse findings. 172 The Syrian hamsters showed similar decreases of bone mass and increases of osteoporosis indicators. How does Covid-19 affect sense of smell?

A hallmark Covid-19 symptom is the loss of smell and taste. In most cases, the sense of smell restores itself after a few weeks, but 12% of people continue to report complete loss of smell months after the initial infection. 173

Olfactory cells are a major factor in taste recognition, but research shows that the SARS-CoV-2 virus binds to and depletes sustentacular support cells, which surround olfactory receptors in the epithelium. 174 Unlike receptor neurons, sustentacular cells express ACE-2 and TmPRSS2 membrane proteins that the SARS-CoV-2 uses to attach to and invade cells. Despite the fact IU School of Medicine researchers discover ties between COVID-19 and bone loss 172 SARS-CoV-2 infection induces inflammatory bone loss in golden Syrian hamsters | Nature Communications 171

Losing the Sense of Smell: How Covid-19 Infection Induces LongLasting Symptoms 174 Mechanism Revealed Behind Loss of Smell with COVID-19 173

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that olfactory receptors are not directly infected, they do sustain significant damage from the infection of neighboring cells.

Can Covid-19 cause long-term damage to the female reproductive system?

One study suggests that SARS-CoV-2 infection can increase the risk of placenta complications in unvaccinated pregnant women. 175 SARS-CoV-2 placentitis changes the placenta, making it difficult to deliver oxygen and nutrients to the baby. 176 The asphyxiation caused can lead to higher chances of stillbirths. The CDC states that, although rare, contracting Covid-19 can elevate the risk for stillbirths (notably during the Delta wave). 177 Can Covid-19 cause long-term damage to the male reproductive system?

The male reproductive tract is at risk of infection and damage by SARS-CoV-2. 178, 179 This damage can be long lasting, persisting up to 4 months after initial infection. The consequences of infection to the male reproductive tract are not limited to one single tissue. Instead, damage can span across four major areas: the testes, the prostate, the penis, and the pampiniform plexus. New research shows impacts of COVID-19 on reproductive health Placental Tissue Destruction and Insufficiency From COVID-19 Causes Stillbirth and Neonatal Death From Hypoxic-Ischemic Injury | Archives of Pathology & Laboratory Medicine 177 Risk for Stillbirth Among Women With and Without COVID-19 at Delivery Hospitalization — United States, March 2020–September 2021 178 An immunoPET probe to SARS-CoV-2 reveals early infection of the male genital tract in rhesus macaques | bioRxiv 179 Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Infection by Intranasal or Intratesticular Route Induces Testicular Damage | Clinical Infectious Diseases | Oxford Academic 175 176

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Testosterone levels can drop following SARS-CoV-2 infection, leading to significant testicular shrinkage, a decrease in sperm quality and quantity, and a decrease in overall fertility. 180, 181 In the prostate, there is a noticeable increase in prostate-specific antigen (PSA), a protein associated with prostate cancer. Covid19-induced damage to the prostate can also decrease sperm quality. Infection of the penis can lead to erectile dysfunction and Peyronie’s disease. Infection of the pampiniform plexus —a mass of small veins that helps regulate testicular temperature— can lead to the formation of blood clots, chronic testicular pain, and testicular atrophy. Preliminary evidence suggests vaccination may help protect from lasting damage to the male reproductive tract.

180 Implications of testicular ACE2 and the renin–angiotensin system for SARS-

CoV-2 on testis function | Nature Reviews Urology

181 Review Article Impact of COVID-19 on Male Fertility

CHAPTER 8

How can we support people with Long Covid?

Does Long Covid qualify as a disability?

ong Covid qualifies as a disability under Titles II and III of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Affordable Care Act. 182 But whether a Long Covid patient receives long-term disability coverage depends on their ability to provide medical evidence of their condition—a requirement some simply can’t meet. Even those who can should expect a waiting period that might stretch on for months, as the Social Security Administration works through the backlog of claims that built up when the agency had to cease its in-person operations. The difficulty of qualifying for disability benefits without evident documentation, such as a positive Covid-19 test result or laboratory scans, is borne by many sufferers of post-infectious illnesses. Lack of research, training, and specialization in rare chronic diseases entails that some patients might not receive an accurate diagnosis for years. Even if their symptoms are severe enough to seriously limit or obstruct their ability to work, obtaining disability coverage remains an uphill battle. Some

182

Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov

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Long Covid patients were approved based on extensive documentation of health visits or inability to work. 183

Legislation qualifying Long Covid as a disability has also advanced outside the United States. In June 2022, a Scottish court ruled in favor of a Long Covid patient seeking compensation from their former employer on the grounds of disability discrimination. 184

Do workplaces offer support for people with Long Covid?

Long Covid may qualify as a disability under the Americans with Disabilities Act, which provides some accommodations to workers who have or develop a disability that “substantially limits major life activities.” 185 These requirements of employers include, but are not limited to, providing or modifying equipment or devices; part-time or modified work schedules; reassignment to a vacant position; or adjusting/modifying examinations, training materials, and workplace policies. Employers are not required to provide accommodations that remove essential job functions or lower production standards, nor provide personal need items such as hearing aids and wheelchairs. For instance, if a truck driver develops Long Covid symptoms that include increased tiredness, fatigue, or difficulty concentrating, an employer is required to provide accommodations for that employee, potentially including Another Struggle for Long Covid Patients: Disability Benefits - The New York Times 183

Caretaker successfully claims that 'long COVID is a disability' in landmark ruling 184

Workers With Long Covid-19: You May Be Entitled to Workplace Accommodations | US Department of Labor Blog 185

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reduced driving hours or transfer to another role. If the employee’s symptoms lower production standards or impede essential job functions, the employer is not required to keep that employee on staff.

Workers with Long Covid may be furloughed or fired in cases of extended leave, but legal professionals should be consulted in these situations. What challenges are people with Long Covid experiencing in the workplace?

Long Covid workers receive little to no additional worker compensation at a time when Long Covid is fueling labor shortages.

A recent study from the United Kingdom found that one in five hospitalized people with Covid-19 had not resumed work five months after their Covid infections. 186 This suggests people are dropping out of the workforce as a direct repercussion of Long Covid, whether in the short term to address their health, or longterm via early retirement. 187

186 Long Covid: the invisible public health crisis fuelling labour shortages |

Financial Times

187 Back-to-Office Pressure Is Creating a Crisis for Long Covid Patients

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Source: Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

How do I talk to my family and friends about Long Covid? Long Covid has impacted millions of people in the United States and around the world. Those experiencing isolation or difficulty explaining their situation are not alone.

Whether your Long Covid consists of a lingering cough or extensive immunodeficiency, understanding the widespread nature of Long Covid will inform a conversation with others. If someone is ignorant of the issue, inform them of your struggles and the struggles of many. If they continue to not understand, know that you did your best and your experience is valid. 68

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One way to better understand Long Covid, whether as a person with Long Covid or someone hoping to learn more, is to connect with Long Covid advocacy groups, which are becoming much more common as we learn more. Akin to support groups for other major disabilities, these groups connect those that have Long Covid, provide reading materials for those wishing to learn more, and advocate publicly for the policy rights of persons with Long Covid.

What resources can help me support loved ones living with Long Covid?

While tangible resources to help support caregivers are unfortunately limited, there are some labor and education protections as described above. These are available to people with Long Covid who may also be entitled to disability and social security compensation in some instances, but anecdotal reports suggest difficulty with less severe symptoms. 188

The Centers for Disease Control and Prevention emphasize the mental health of caregivers, reiterating the importance of managing stress, anxiety, and uncertainty of caring for people with Long Covid. 189 They provide external links to support groups and additional resources. Codified benefits or compensation are limited to nonexistent. The American Academy of Physical Medicine and Rehabilitation provides an extensive and updated list of Long Covid medical resources on their website. 190 These resources include the latest COVID-19 Long-Haulers May Have Tough Time Getting Long-Term Disability Benefits 189 Caring for People with Post-COVID Conditions | CDC 190 Long Covid (PASC) Resources 188

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updates for ongoing studies, CDC and NIH policy updates, international research, etc. The Administration for Community Living also provides a policy-focused list of resources on their website, such as disability and civil rights policy updates. 191

How can we better communicate the risks of Long Covid in public health messaging?

Public messaging on Long Covid has often been incomplete or sparse, especially in comparison to news on acute SARS-CoV-2 infection.

Partial information contributes to the widespread minimization of Long Covid—people with Long Covid lack the vocabulary to express their experiences; unaware healthcare providers dismiss complaints; government officials fail to consider the long-term population-level impacts of the condition. 192 These factors worsen the illness uncertainty and frustration felt by those with Long Covid. 193

To avoid further pitfalls and to inform the public productively, public health messaging should aim to be accurate and diverse. 194 New findings should be shared critically, without downplaying study limitations and other uncertainties of Long Covid. It will be helpful to compare Long Covid to similar chronic conditions, too; this way, healthcare providers and people with Resources for People with Long Covid | ACL Administration for Community Living 192 Omitting long Covid from pandemic messaging is harmful for public health 193 The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial | medRxiv 194 Long COVID coverage often falls short, but here's how reporters can do better 191

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Long Covid can borrow from the work of these communities and pursue treatment accordingly. Finally, reporters should highlight a range of testimonials to illustrate Long Covid’s wide breadth of presenting conditions. In the absence of published data, these stories become essential to identifying and understanding an individual's unique presentation of Long Covid.

Acknowledgements

would like to thank the excellent team at ACCESS Health for their tireless effort in contributing questions and answers. In particular I’d like to single out Courtney Biggs, Josephine Gurch, Amara Thomas, Kolo Rath, and Griffin McCombs. As always, I am deeply grateful to my wife, Maria Eugenia, my children Mara, Alexander, Karina, Manuela, and Camila, and delightful grandchildren Pedro Augustin, Enrique Matias, and Carlos Eduardo, for their loving support and companionship through this difficult time.

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Bajos, N., Jusot, F., Pailhé, A., Spire, A., Martin, C., Meyer, L., Lydié, N., Franck, J.-E., Zins, M., Carrat, F., & SAPRIS Study Group. (2021). When lockdown policies amplify social inequalities in COVID19 infections: evidence from a cross-sectional population-based survey in France. BMC Public Health, 21. https://doi.org/10.1186/s12889-021-10521-5 Batiste, L. C. (2021, July 6). Workers With Long COVID-19: You May Be Entitled to Workplace Accommodations. US Department of Labor Blog. https://blog.dol.gov/2021/07/06/workers-withlong-covid-19-may-be-entitled-to-accommodations Belluck, P. (2022, January 25). New Research Hints at 4 Factors That May Increase Chances of Long Covid. New York Times. https://www.nytimes.com/2022/01/25/health/long-covidrisk-factors.html

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A Family Guide To Long Covid

Articles inside

Chapter 7: How does Covid affect the organs long-term?

Chapter 5: How does Long Covid affect children?

Chapter 3: How can you prevent Long Covid?

Chapter 8: How can we support people with Long Covid?

Chapter 4: How are different populations affected by Long Covid?

Chapter 1: What is Long Covid?