Living with long COVID: how clinical trials can shine a light on new treatments

The majority of people who contract COVID-19 go on to make a full recovery typically within a matter of a days. However, some people suffer with longer-term symptoms, with a condition that has become known as ‘long COVID’. It’s still poorly understood, and researchers are using clinical trials to learn more about the condition.

Here we explain what long COVID is, how researchers are trying to understand it, and how you can help by taking part in a clinical trial.

What is long COVID?

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Long COVID (also known as long-haul COVID or chronic COVID) is the term used to describe the recurring or ongoing health problems in people who have been infected with the virus SARS-CoV-2. SARS-CoV-2 is what is known as a ‘coronavirus’, part of a large family of viruses which cause upper-respiratory tract illnesses, like colds. Long COVID can now be considered a disability under the Americans with Disabilities Act (ADA).

Long COVID encompasses a wide range of health problems that occur four or more weeks after initially being infected; the World Health Organization notes that common symptoms include:

• Fatigue
• Shortness of breath
• Cognitive dysfunction

There’s still no clear pattern for who suffers with long COVID. Whether you initially had symptoms, your symptoms were mild, or you were only ill for a short period of time, you can still develop long COVID – with symptoms lasting weeks or even months. More and more research is being conducted to find answers and develop potential treatments for those affected.

Understanding long COVID

Many researchers across the world are looking into the effects of long COVID. As the condition has only been reported since early 2020, there’s still a lot that we don’t know about it. Having a better understanding of the disease may help scientists develop new treatments for those with longer term effects.

The main way that we learn about conditions like long COVID is through clinical trials. Researchers will look at different parts of a disease, including the symptoms and the duration, and may be able to find trends to predict who may be more likely to get it. The information obtained can also help them develop drugs or therapies for those in need.

A clinical trial is a study that allows scientists and clinicians to assess the safety of existing and investigational treatments (as well as diagnostics) in people. All medicines and treatments must undergo clinical trial testing before they can be approved for use and prescribed to patients. These studies rely on both healthy volunteers and those living with the condition to take part.

How can I join a clinical trial on long COVID?

By taking part in a clinical trial for long COVID, you could potentially receive an investigational treatment that would not otherwise be available to you. You may also get a better understanding of your condition through the close monitoring of your health that is likely to occur during a trial. You could also give help and hope for future long COVID sufferers by supporting this vital research.

There are several ways that you can find a relevant clinical trial for long COVID:

• Search for long COVID studies on the Clinicaltrials.gov database.
• Ask your healthcare provider if they know of any studies you may be suitable for.

Another of our recent blog posts also takes you through ways in which you can find a clinical trial in more detail. And if you have loved ones who are suffering with long COVID, you could share this post with them so they can consider volunteering for a clinical trial.

If you or someone you know is suffering with symptoms of long COVID, you may find the following resources helpful:

• Register to watch Labcorp’s webinar, with representatives from patient advocacy groups discussing engaging patients in long COVID studies.
• The Patient-Led Research Collaborative (PLRC) is collecting data on long COVID to understand more about the condition.
• Chimére L. Smith calls attention to the importance of Black voices in conversations on long COVID in urban communities.
• Long Covid Kids raises awareness of long COVID in children and supports families living with this.

What else do I need to know about clinical trials?

COVID has raised awareness of clinical trials as they were vital in helping the rapid development of vaccines and treatments. But with so much information available online, it’s hard to tell what’s reliable, and you may want to learn more about participating in a clinical trial. We recently debunked 9 common clinical trial myths to help support your decision.

It’s also important to know that there are several types of clinical trial, split into phases 1-4. The type of trial that you take part in will depend on what stage the potential treatment is in, and what treatments are available. Our article on the language of clinical trials may help you better understand how these are run.

There are both benefits and risks to taking part in clinical trials, and you should speak with your loved ones and your healthcare provider to help decide if this is the right choice for you. Participation is entirely voluntary, and you can withdraw from the clinical trial at any point (although please let your healthcare provider know).