Patient advocacy groups + Long COVID

Feb 18, 2022

Advocacy and support groups are important resources for patients, particularly those navigating chronic or rare conditions. Patient support groups bring together people with similar experiences, such as a common medical condition, to bridge their medical and emotional needs through sharing personal experiences, coping strategies, information about the disease and treatment, and resources. Participation in online patient support groups has been shown to lead to patient empowerment, including being better informed through exchanging information and finding recognition. 

Patient advocacy groups in their current form became prevalent in response to research and treatment for cancer and HIV/AIDS. While many began as support groups and continue to provide support and recognition for patients, patient advocacy groups differ in that they have increasingly become involved in policy as they push for resources and funding for research. 

Not surprisingly, a number of advocacy and support groups have formed during the current pandemic as more individuals experience the symptoms of Long COVID.

Need for patient advocacy and support groups for Long COVID

Many Long COVID patients have felt invalidated and frustrated by their search for answers to their symptoms. Long COVID is an evolving diagnosis, with a wide range of symptoms, no known outlook for those suffering, and there is not yet a clear understanding of why or how many COVID-19 patients will develop Long COVID. Patients visit their doctors but find that many providers are not familiar with Long COVID and unable to offer a long-term treatment or prognosis. 

Another complexity some patients have faced is the lack of an accurate diagnosis of their initial COVID-19 infection. Early in the pandemic, testing was sparse and reserved for severe cases or for the most vulnerable populations. Many individuals who were ill at the beginning of the pandemic and unable to get tested began experiencing Long COVID symptoms but were having difficulty validating their long-haul symptoms and attributing them to a disease for which they had never received a positive test result.

Benefits of patient advocacy groups

Peer support

One of the biggest benefits for patients is the supportive community that these groups offer. Long COVID patients have described feeling seen when they are able to discuss with others who are experiencing similar symptoms and feeling solidarity knowing they are not alone. This feeling of being understood and validated has been especially important for Long COVID patients because their experiences are often not confirmed by a clear medical diagnosis due to the nature of the illness being a new and poorly understood condition.

Advocate for & participate in research

Another important aspect of Long COVID support groups is the ability to have an impact on future research efforts. Members have joined together to form advocacy groups to work with public health organizations and policymakers to advocate for more research as well as learn about opportunities to participate in research studies to advance the science about Long COVID. Researchers are also able to learn about the experiences of Long COVID patients by using data collected from these public discussion groups. 

Additionally, these groups can bring together researchers, some of whom are also patients, to conduct their own research by combining their professional backgrounds with their experience as patients themselves. The Patient-Led Research Collaborative is an example of one group that conducts patient-led research on Long COVID. The multi-disciplinary group is made up of researchers with applicable skills and backgrounds in diverse fields including public policy and data collection and analysis. The Collaborative grew out of a support group on Body Politic and has published two reports about Long COVID symptoms based on responses to a survey posted to various Long COVID support groups.

Connect with resources and information

These patient support groups can be an educational resource for individuals to learn more about their condition from others who have similar experiences. Patients report that they are able to bring information that they learn from these online groups to their doctors to discuss potential options for their own symptoms if their provider is unfamiliar with Long COVID. Additionally, these groups can be a place where peers can share resources about where to get support and services for their condition as well as learn about accommodations for which they may be eligible if their symptoms are affecting their daily life.

Examples of groups

Below are some examples of Long COVID advocacy groups:

Survivor Corps – Survivor Corps is a grassroots organization of over 180,000 members who share personal experiences and resources on a Facebook page for people experiencing both acute and long-term symptoms of COVID-19. They also post resources on their website for those looking for more information about Long COVID and share where to find Post COVID Care Centers. Survivor Corps is also active in advocating for more research funding and partnering with institutions to conduct research and publish reports on Long COVID symptoms.

Long COVID Kids – Long COVID Kids focuses on education to raise awareness of Long COVID symptoms in children, advocacy and support for parents and caregivers, and prevention. They share information about Long COVID symptoms and recovery resources on their website, as well as information for parents about how to participate in research. They also provide links to join their advocacy and support groups on Facebook, which include chapters in the US and Canada in addition to the main group located in the UK.

Long COVID Alliance – The Long COVID Alliance brings together patient-advocates, scientists, disease experts, and drug developers to collaborate on and advocate for Long COVID research. Some of their successes to date include submitting recommendations to Congress about Long COVID research investments, securing funding for research trials at the NIH, and sharing research proposals for NIH consideration. They also share resources on their website regarding support groups, treatment, and research opportunities.

Body Politic – The Body Politic COVID-19 support group has over 11,000 members from all over the world who share their experiences and relevant resources on Slack channels specific to certain populations, including medical professionals, parents of children with COVID, LGBTQ+ individuals, BIPOC+, and individuals from different regions around the world. They also share resources on their site for patients about exercise, dysautonomia, employment and disability benefits, and peer support, as well as resources for providers and caregivers. As noted above, the Patient-Led Research Collaborative grew out of the Body Politic Slack support group.

LongCOVIDSOS – LongCOVIDSOS is a campaign created by Long COVID patients in the UK with aims of recognition, research, and rehab. They aim to raise awareness among the general public as well as policy makers. So far, they have been invited to a meeting with the World Health Organization to present their experience and have engaged NHS England in conversations about treatment and services for Long COVID patients. LongCOVIDSOS has also collaborated with university researchers to conduct and report their own research, including a survey on the impact of vaccination of Long COVID symptoms.

In summary, Long COVID patient groups can be an important source of peer support and advocacy for research and treatment. Individuals can visit the links above to learn more about how to get involved or to get connected to resources.

Please note that while these online support groups can be a helpful resource, the information provided here or on their websites is not a replacement for medical advice or professional care.

For inquiries related to the Long COVID Initiative, please contact long_covid_initiative@brown.edu