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How long do COVID symptoms last?

Long COVID (Post-Acute Sequelae of COVID-19) symptoms can last for weeks or months, causing difficulty for many people to maintain daily routines, work, school, relationships and other activities. These symptoms can also impact quality of life and affect access to services that can help with housing, transportation and more.

Some people who have experienced long-Covid symptoms long-Covid support groups say that the internet has spawned a “new breed of patient” — individuals doing their own research and planning care alongside their doctors. They say that online communities have filled a gap of information and support during this difficult time. However, a recent study found that while these online peer-support groups may have many benefits, they also come with notable flaws and limitations.

This study gathered qualitative data from participants in online long-Covid groups and interviewed them. The findings indicate that while online peer-support groups fill immense gaps in professional care, they do not fully address the challenges of coping with long-Covid symptoms. Several key themes emerged:

One was the sense of community that these online communities provide. They are a place where patients can share stories and learn about the unique and varying experiences of others who have been diagnosed with this disease. Many of these patients have been living with chronic illness for a long time and have often felt isolated during previous pandemics.

Another important theme was the role of these online communities in promoting engagement behavior amongst patients. They encourage patients to participate in their own medical care by sharing their symptoms, questions and concerns with others. This can lead to greater involvement in symptom monitoring, which is vital for improving medical outcomes. It can also lead to the development of self-care practices, such as keeping a journal and tracking symptoms, that can be valuable to medical teams.

While these online communities have numerous positive effects, participants also emphasized that the all-encompassing roles that they play can cause some negative consequences. For example, they can promote downward comparison, where individuals look to those who are worse off to see how their own symptoms compare. This can lead to feelings of fear or guilt.

Those experiencing Long COVID or who care for someone with it can connect to local, state and national resources that can help them meet their needs. These can include community-based programs that can assist with housing, transportation, personal care attendants and other services to help support those who are having difficulty maintaining their daily lives. These resources can also offer information on civil rights laws and how to apply for disability services, if necessary. In addition, New Yorkers can join online and in-person local advocacy projects to address long-Covid needs such as the Network for Long COVID Justice and #MEAction’s global, location-based and interest-based support groups, including a New York group for ME/CFS and Dysautonomia International’s autonomic disorder community.

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