Similarly to HIV/AIDS patients, COVID long-haulers are dealing with fear, ignorance and apathy as it relates to their illness.* While long COVID is not completely understood, countless stories show it has a wide range of effects that impact survivors’ day-to-day routines.

Patient grassroots communities have emerged where long haulers come together to share their experiences and collaborate on how to provide more education so science can properly guide doctors how to help these patients.

The Body Politic COVID-19 support group is one such group, and has more than 10,000 members, which include COVID-19 patients and their caregivers and families.

A member of Body Politic, Angela Meriquez Vázquez, spoke on the healing power of communities for long-haulers: “To talk about what is it like to be in this body with long COVID — to be able to name and label these symptoms with a diagnosis — is part of the transformation from being a person at the mercy of a virus to someone with information that they can use to understand, cope and even heal.”

Vázquez has personally suffered for over 13 months with migraines, sleeplessness, stomach problems, chest pains and heart palpitations, but now finds hope in the fact that she knows that doctors are beginning to understand it is a real issue. In fact, a new study found that the virus has affected more than 32 million people in the United States, and long COVID is said to affect one third of this population.

A Need for Long-Hauler’s research

In recognizing the lack of knowledge by the healthcare system as it relates to long COVID symptoms and appropriate treatments, these organizations are pushing hard for research.

The Body Politic has started independent research and even advised the National Institutes of Health (NIH). Additionally, these organizations are soliciting the help of physicians to further research on long COVID who are writing grant applications, and they are enlisting financial help from GoFundMe campaigns.

Patients are requesting that long COVID be treated immediately to prevent chronic conditions.  Emily Taylor of the Long COVID Alliance, another grassroots organization, explained: “We see a two-year window….and if we don’t get things done, many, many people will be disabled for many years to come, possibly for the rest of their lives.”

Thanks to these grassroots patient organizations, the effects of COVID-19 on a long-term basis have been amplified, and effective lobbying for more research is a result of this collaboration.

Now the NIH is allocating a $1.15-billion initiative to better understand its long-term effects. The Gates Foundation is also involved and has allocated $440,000 to The Survivor Corps group, which has more than 160,000 members. 

The group has given COVID survivors an opportunity to donate convalescent plasma, which is blood rich with virus-fighting antibodies, and information on how to participate in clinical trials.

It is through research that doctors can best help their patients with long COVID and so that the diagnosis can be considered a type of disability as many people across the country struggle with debilitating symptoms. This would allow patients time to recover, and doctors and patients to be reimbursed for treatment by insurers.

Approximately 40% of people with long COVID who received the vaccine have seen improvements in their symptoms, according to a small poll of 577 people on the Survivor Corps group. While this number is encouraging, it is still low enough that physicians should not focus on this as a panacea. Long COVID patients need their full health and wellness back through personalized, comprehensive care guided by science.

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.

Curwen, T. (2021, April 26). Activists fight for those with “long COVID” symptoms. Los Angeles Times. https://www.latimes.com/california/story/2021-04-26/activists-and-advocates-find-their-voice-in-the-long-haul