Long Covid Resources

Find a Long Covid Care Center

If you can’t locate a doctor in your area that is familiar with Long Covid, your best choice may be to work with a doctor who is actively willing to help you and learn about your condition. Whether you find care at a PCCC, a specialist, or with your primary care doctor, it is important to have a provider who is a partner in your medical care and listens to your needs. These resources can help you find the right care for you:

Many people with Long Covid focus also finding doctors who are willing to be a partner in their medical care and listen to their needs.  

For individuals looking for resources specific to navigating Long Covid care, check out this article from Solve M.E. Board Member, Cynthia Adinig. 

Tracking your Symptoms

Keeping track of your symptoms through journaling or charting, especially early on, can help you identify your personal limitations and provide valuable data for your medical team. 

If your initial symptom tracking begins at a time when you are very ill, be kind to yourself and use whatever materials are easily available to you. Pen and paper, a monthly calendar, or cell phone calendar are all perfectly fine options. You can use the You + ME Symptom Tracking App to track your symptoms and contribute to Long Covid research at the same time.

Securing a Personal Support System

It is crucial to have a personal support system of family, friends, or caregivers to help you through this difficult, debilitating disease. It is important that this support system understands what you are going through so they can help in supportive, empathetic ways. However, it can be difficult to find reliable information and avoid misinformation.

Resources for Caregivers

Caregivers are an essential part of a patient’s support network, but caregiving isn’t easy. Caregivers face their own emotional, financial, and physical challenges that can lead to burnout, mental health difficulties and other hardships.

CaringInfo.org created an amazing resource for caregivers navigating the legal and logistical challenges of severe illness. While designed for people facing life-threatening conditions, many medical resources such as palliative care and hospice, financial resources such as Medicare and insurance, or other items like advance directives or bereavement care, can be helpful for those seeking to learn more. For additional support for caregivers, see the below resources:

Children and Teens with Long Covid

As with adults, the degree to which a child or teen’s life is impacted by Long Covid depends on a number of things, including disease severity. If the child is mildly affected, he or she might benefit from a slightly modified school schedule and a reduction in social activity as long as parents and guardians recognize the need to avoid triggering and worsening symptoms. If the child is moderately ill, the school and parent/guardian will need to work together to establish a substantially modified plan of education which might include private tutoring, remote learning, or some type of home-schooling. Children who fall into the moderate-to-severe range are generally unable to attend school at all and need help with even the most basic personal care.

Work and the Disability Process

One of the most horrific effects of Long Covid is the inability to work and the often crippling loss of income. If you are unable to work, or if you feel yourself struggling to continue to work, do not hesitate to file for disability insurance sooner, not later. The time from applying for disability to the time of approval can take from six (6) to twelve (12) months, or longer.

Remember: You have a right to reasonable accommodations at school or work for your health!

There are multiple sources for disability insurance in the United States. Some large corporations provide disability insurance for their employees, private disability insurance can be purchased from insurance agents — prior to the onset of illness. A few state governments provide disability insurance payments for their government employees, and the federal government provides two types of disability, Social Security Income (SSI) and Social Security Disability Insurance (SSDI).

Learn more about navigating work accommodations and the disability process from the resources below:

Post Exertional Malaise (PEM) and Pacing

As a person with Long Covid, you need to determine your individual limits for physical and mental activity, and plan your day accordingly. Sounds easy? It’s not! But, through trial and error, and careful charting of your symptoms after differing types of activities, you can find your rhythm to avoid “crashes.” Rest is the main ingredient for reinstating your physical equilibrium.

Activity Management, also called pacing, is critical to navigating life with Long Covid. Learn more about pacing below:

Warning: Graded Exercise Therapy (GET) Can Cause Harm

Graded Exercise Therapy is NOT the same as pacing. GET requires you to increase your activity over time, and has been reported by many patients to be harmful and has left some patients significantly worse than they were before they started. For more information, read the open letter to healthcare providers from the Workwell Foundation.

Mental Health

Long Covid is not a psychiatric illness. However, it is common for people with serious medical issues to experience secondary anxiety and depression, and patients with post-infection diseases are no exception. Feelings of anger, grief, hopelessness and guilt are common as well. It is important to address the issues of loss in regard to Long Covid. 

These support groups and forums all take place online, some are volunteer led and some are professionally facilitated:

Get Involved in Research

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You + ME Registry (Solve M.E.)

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RECOVER (National Institutes of Health)

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All Of Us (National Institutes of Health)​

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Clinical Trials (U.S. Nat'l Library of Medicine)​

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