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Long COVID Support

Many people who were sick with COVID-19 recovered from their infection without lingering symptoms, but some developed long-term effects of the virus. These are known as post-covid symptoms or long COVID, and can include a range of issues that last weeks, months or even years following infection, such as fatigue, breathlessness, low mood, memory problems, joint pain and more.

A healthcare provider can help diagnose the condition and may refer you to specialists who can support you with symptom management. There is no single test for long COVID, and your GP will consider the diagnosis based on your health history and a health examination. The National Institutes of Health has launched a research initiative called RECOVER to understand why some people develop long COVID and what can be done to prevent it in the future. They are looking for participants to volunteer to share their experiences with scientists.

The CDC has resources on preparing to talk with your doctor about your symptoms, including a checklist and a fill-in-the-blank script. You can also download a free app called My Symptoms to track your symptoms, set reminders for appointments and find tips.

Depending on the severity of your symptoms, you might be referred to a specialist such as a pulmonologist or cardiologist, or to a mental health or physical therapy expert. You can also get help from a patient navigator or an aftercare program like Take Care’s AfterCare Resource Center.

If your symptoms are preventing you from working, or getting enough sleep, you might be eligible for disability benefits under the Americans with Disabilities Act (ADA). You can also apply to NYC Care, a program that guarantees access to low-cost or no-cost healthcare to New York City residents who don’t have insurance or do not qualify for coverage through other means.

Living with chronic illness of any kind can be isolating, but for those who have long COVID symptoms, the experience can be especially difficult. Some patients report that they feel stigma from loved ones and the wider community, and others have experienced discrimination in their workplaces. Often, these symptoms can be mistaken for depression or anxiety, so it’s important to have Long Covid support in place before your symptoms get worse.

The longer your symptoms persist, the more challenging they can be to manage and cope with. In the worst cases, they can impact your ability to work, study and engage in activities with family and friends.

Despite the prevalence of these symptoms, there is still so much we don’t know about them and how they affect people’s lives. It’s vital that any research on this group of symptoms is representative of (or oversamples) the populations that are most likely to experience them, and that it includes marginalized communities, such as those who identify as LGBTQ+ or are living in poverty. The NIH’s RECOVER initiative is a great opportunity to do this, but we need more partners to join us. If you’re interested in joining, please visit the RECOVER website to learn more and sign up.

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