C-19LAP Long Covid Dashboard.

WHAT IS LONG COVID?

Long COVID (LC) is a patient coined term describing the sequela of symptoms post-COVID infection, lasting at least 12 weeks. The CDC refers to Long COVID as "Post COVID Syndrome" (PCS) and the NIH refers to it as "Post Acute Sequela of COVID-19" (PASC). Unfortunately, Long COVID is a chronic condition. Many sick during the first wave of the pandemic in late 2019/ early 2020 are still suffering from Long COVID and have gone on to develop what we refer to as "Long COVID Associated Conditions" (LCAC), conditions like Dysautonomia, ME/CFS, Mast Cell Activation Syndrome and more. For this reason, we commonly refer to Long COVID as a collection of post-viral illnesses. The most prevalent theories about the cause of Long COVID are viral persistence, micro clots, and immune dysfunction/ autoimmunity. There is currently no standard assessment or treatment protocol for Long COVID. Symptoms experienced as part of Long COVID may wax and wane. It is important to note that symptoms can be ones you had during acute infection, completely new, and can even occur after asymptomatic infections and even in those vaccinated. The only way to prevent Long COVID is to prevent COVID by masking, social distancing, and vaccination.

WHAT ARE SOME OF THE MOST COMMON SYMPTOMS AND DIAGNOSES SEEN IN LONG COVID?

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Over 200 symptoms have been identified in Long COVID. Some of the most common are profound fatigue with non restorative sleep, cognitive dysfunction, post exertional malaise, orthostatic intolerance, tachycardia, shortness of breathe, widespread joint and muscle pain, headaches, palpitations, memory issues, abdominal pain, insomnia/ sleep disturbances, rashes, temperature dysregulation, tremors, nausea & vomiting, sore throat, and sensitivity to noise and light. There are several conditions that are frequently appearing in Longhaulers. Dysautonomia, which is dysfunction of the autonomic nervous system (it controls everything your body does automatically), has been found in nearly 70% of Longhaulers in moderate to severe form. Myalgic Encephalomyelitis (ME/CFS) has been found in nearly 50% of Longhaulers. We have less information on Mast Cell Activation Syndrome, but the numbers likely range between 30-50% of Longhaulers. Autoimmune diseases arising in Longhaulers are Lupus, Sjogrens Syndrome, Rheumatoid Arthritis, Hashimoto's Thyroiditis , and Antiphospholipid Syndrome. Fibromyalgia and Hypermobility Spectrum Disorder are also common conditions being diagnosed in Longhaulers. We are seeing a high prevalence of headache and migraine conditions, gastrointestinal and motility disorders like eosinophilic esophagitis and gastroparesis or rapid gastric emptying.

WHO CAN GET LONG COVID?

EVERYONE is susceptible to developing Long COVID if infected with COVID-19. There is A LOT of misinformation out there that has led people to believe children are not at risk of Long COVID or serious complications from infection. Community data shows ~15-20% of children develop Long COVID. Conversely, it has been said that elderly people are more susceptible to Long COVID. Community data shows that the majority of Longhaulers are women (85%) between the ages of 30-60. Having a prior COVID-19 infection does NOT prevent another infection. In fact, a recent study showed reinfection can occur in as soon as 23 days. There are also Longhaulers who have had COVID-19 multiple times in which they did not develop Long COVID during their first infection, but during a second or third. Recent research has come out showing multiple infections increases mortality. and morbidity. Vaccination also does not prevent Long COVID, but some research is beginning to show it may reduce its prevalence or severity. Whether you are a pediatric, adult or elderly adult, Long COVID can cause the same symptoms, associated conditions, and level of disability impacting all aspects of life. Everyone should operate assuming they are at risk for Long COVID because they are.

WHAT ARE THE LONG COVID CASE COUNTS & COSTS?

The CDC currently estimates 1 in 5 (20%) of those who get COVID-19 go on to develop Long COVID. They also estimate that only 1 in 4 cases are documented, indicating community spread is much higher than daily case counts indicate.

Long COVID Case Counts In The United States.

90M Documented COVID Cases= at least 18M with Long COVID.

Long COVID Cases may be as high as 72M (3/4 not documented)

Long COVID Case Counts Worldwide.

550M Documented COVID Cases= at least 110M with Long COVID.

Accuracy of worldwide documentation unknown.

Costs shown do not reflect daily costs of living such as housing, food, medical insurance, caretaker responsibilities and more.

Last Updated July 15th, 2022

Long COVID Economic Costs (Based on our estimates used in our open-letter)

Unites States (Heath care and lost income national average between POTS and ME/CFS.)= $36,400
United States Yearly Cost (Current 50%-9M Longhaulers Our of Work) =$327,600,000,000 ($300+B)
United States Yearly Cost (Current 50% non-documented cases-36M)=$1,303,000,000,000 ($1.3+T)
Missing from the workforce & Schools: 41% reported filing for or preparing to file for SSD. Many have not even begun the process out of fear, optimism, not knowing where to start, etc.
- At least 30% are Healthcare Workers, First Responders and Educators.
- At least 15% are pediatrics.
- At least 9% are single parents

HOW CAN I PREVENT LONG COVID?

The ONLY way to prevent Long COVID is to prevent a COVID-19 infection. Social distancing, masking and vaccination are your best options for preventing Long COVID by preventing COVID-19 infection. People with asymptomatic, mild, moderate or severe cases of COVID-19 infection can all go on to develop Long COVID. Community data shows 80% of Longhaulers were never hospitalized. It is also essential to note that vaccination does not prevent Long COVID, though there is some recent data suggesting that it may reduce the prevalence of Long COVID. Community data shows 44% of Longhaulers are completely out of work with 67% out over a year and 51% were reduced to part time work with 63% out for over a year. 41% reported filing for or preparing to file for social security disability. 30% were healthcare workers, first responders or educators, 9% were single parents. Only 5% reported being able to work at 100% pre-COVID capacity. Having "only an asymptomatic or mild case" can still mean lifelong disability. Being infected while vaccinated can still mean developing Long COVID. Being outdoors can still result in an infection. Preventing Long COVID begins with preventing COVID infection and understanding myth vs fact.

WHAT SHOULD I DO IF I SUSPECT I HAVE LONG COVID?

If you are experiencing lingering symptoms after a COVID-19 infection, one of the most important things to do is recognize that it may be Long COVID. It is important to fight the urge to "push through it" and utilize "Stop. Rest. Pace." Your next step is to document the symptoms you are experiencing and then seek out a medical provider who addresses those issues. For most people, that will start with going to their primary care provider for referrals to a specialists or a Post-COVID Clinic. One of the most important things you can do is to educate yourself on Long COVID and its Associated Conditions (LCAC). You need to be able to verbalize what you are asking the provider to do for you (labs, imaging, other forms of testing, documentation, etc.) especially when many providers are unaware of how to navigate and attend to Long COVID. Connect with credible, trusted Long COVID groups like ours, stay up to date on research, new centers, enrolling studies and more. Continue to seek out a provider who believes you, listens to you, is willing to learn along the way and work in partnership with you to improve your quality of life. It is especially important, if you become unable to work, that your provider is willing to document the impacts to your activities of daily living to ensure you can apply for social supports like food assistance, temporary cash assistance, social security, and other forms of disability, including school and workplace accommodations. Please review the resources we have made available to the community here on our website.

WHAT RESOURCES ARE AVAILABLE FOR THOSE WITH LONG COVID OR THOSE WANTING TO LEARN?

Credible Long COVID support groups have been the only hub for Long COVID resources most of the pandemic and have informed legislation, research and national health and government agencies. You can find our resources under the "Our Work" tab, or listed under the "Resources" tab. We recommend that everyone review our Comprehensive Guide for Longhaulers and Providers, our COVID Competent Providers List (CCPL), the Long COVID Roadmap Advising Community Endpoints (LC-RACE)The CDC has a website for post-COVID Conditions, and the NIH RECOVER Initiative also has some information available on their website. Information about Long COVID and its Associated Conditions is coming out more frequently, so it is important to ensure the resources you are utilizing are up to date. We encourage all Longhaulers, caretakers, providers, researchers, lawmakers, community leaders and community allies to learn about Long COVID and contribute to helping us create better resources and expand community outreach. Longhaulers should learn about assistance programs like food assistance, temporary cash assistance, housing assistance, Medicaid/ Medicare, short and long term disability, FMLA and workers compensation laws. There are some legal and social services that will assist people with applications to some of these programs. Several reputable organizations and universities hold educational webinars and conferences that are always beneficial to join. We have 51 state chapter groups and 9 special populations groups on Facebook where people can find more local or specialized resources. Below you will also find an interactive map allowing for identification of Post COVID Care Centers, RECOVER Sites, Centers of Excellence, COVID Competent Providers and research enrolling.

HOW CAN I RAISE AWARENESS ABOUT LONG COVID, GET INVOLVED & HELP THE COMMUNITY?

Longhaulers, caretakers, providers and researchers can help raise awareness about Long COVID by sharing your stories and experiences with the media, on social media, by serving as advisors or representatives for research studies, by reaching out to your providers, colleague, medical institutes to educate others about Long COVID and its Associated Conditions (LCAC). Community allies and journalists can assist in sharing and elevating our stories, experiences and needs. There are many ways to get involved and we personally have several. We have state advocacy teams and state chapter support groups, we have 9 special populations chapters and support groups, we have a general volunteers list that is often utilized for calls to action. We post media requests often that need participants, and we meet with lawmakers who like to have their own constituents in meetings as well. Anything you can do to share and elevate our message is greatly appreciated. Whether this is combating general misinformation, or sharing our resources with the general public, it all matters and helps tremendously. Donating to our organization to support our work, become a sponsor, offer pro bono or in-kind services is also a huge help to us and we are grateful for all forms of assistance as we work to fight for our community and expand resources available to them and the broader chronic illness and disability community.