In the United States alone we have seen over 50 million cases of COVID-19 and over 800,000 deaths in total. There is a clear prevalence across the U.S. and worldwide that has and is impacting many. One side of the story that has picked up more awareness is “long COVID”. The media has called those impacted with COVID-19 and experiencing symptoms long after diagnosis “long haulers”. This is real for many regardless of how sick they felt upon initial diagnosis. Typically mild to moderate symptoms last around 2 weeks, but what happens after that typical period of recovery?

What is Long COVID?

Long COVID is associated with those that have been diagnosed or were positive at one time with the COVID-19 virus. They no longer have the active virus in their system though may still feel the debilitating effects of the damage the virus caused. The virus attacks the lungs, heart, liver, nervous system and other organ systems. The damage that was initially done can cause longer term impacts. Many continue to experience fatigue, “brain fog”, anxiety, change of heart beat, loss of appetite or bowel issues, and the list goes on. No organ system is spared and each individual experience is different. Long COVID is not only associated with physical symptoms after that initial recovery there is also the continued mental health impact especially seen in those that were hospitalized, isolated, experienced loss, or other personal experiences. If you have experienced any of these or other continued symptoms you are not alone.

For those that feel like they may be experiencing long COVID, you may be asking what options there are to help. While the prevalence of COVID long haulers continues to rise there is a need for continued research to better understand the why and what to do. Research is growing for example the Congress has invested 1.15 billion dollars into understanding and providing treatment for the debilitating effects of long COVID.

This is a great opportunity for the general public that has been impacted to participate in research for COVID and long COVID to help researchers better understand the virus and how to best treat those impacted.

Importance of Long COVID Research

There are many reasons to participate in long COVID research. Your personal motivation for participating in research could be to help others, move science forward, or gain access to the newest medical treatments. Find your purpose, your why, and learn more about options that fit your values.

For long COVID research the importance is to better understand the virus and determine safe effective treatment methods. It may feel as though COVID has been around for a long time and yes it has been a long two years. There is still much to understand about this virus, the impact on short term and long term health, initial and longer term treatment options, slowing the spread, etc.

It’s up to the public to help move long COVID research forward; researchers can not do it alone. Researchers need data driven outcomes to track the positives and negatives. Without volunteers to participate, research can not show the impact and improvements are halted. If in the back of your mind you’re thinking “well someone else will participate, so I don’t need to,” think again. Whether your motivation is personal or for helping others there is an overwhelming need for participants in clinical trials in general. Find ones that fit your values.

How to find Long COVID research studies?

Now that you know more about long COVID and the importance of long COVID research, the next big question is finding reputable clinical trials to participate in. There are many websites to start your search such as clinicaltrials.gov. This website allows you to search by keywords such as “Long COVID” and select the general area you are interested in participating in. Use your resources off the web and talk to healthcare providers, ask our doctors, nurse, respiratory therapist if they know of any opportunities.  If you are concerned about the legitimacy of a long COVID research study, read over this website from the federal trade commission for general information and red flags. Biggest takeaways: you should not pay money to participate in study, don’t share your financial information, and do your research. The NIH has great resources for finding available clinical trials, understanding clinical trials, and general awareness for clinical research.