(NewsNation) — Researchers and advocates are asking the National Institutes of Health to create an office specifically dedicated to researching post-infectious conditions like long COVID and chronic Lyme even as the number of Americans reporting long COVID symptoms has jumped dramatically.
New data from the Centers for Disease Control and Prevention shows 6.8% of Americans report long COVID symptoms, which can include fatigue, brain fog, nerve issues, breathing problems and gastrointestinal problems.
While some health officials have argued against using the term long COVID, stating it is no different than other post-viral conditions, even non-COVID related post-viral illnesses can be debilitating for patients.
Scientists have known that patients can develop a number of conditions following a virus, including autoimmune diseases, mast cell activation syndrome, Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS) and myalgic encephalomyelitis, also known as chronic fatigue syndrome.
While many of these conditions have been around for a long time, research into them has been underfunded and many lack treatment options. Patients can also face difficulties receiving a diagnosis, often waiting years for answers.
Advocates argue that one of the issues with research is these conditions don’t fit neatly into the categories used by the NIH, which usually organizes research by affected organs or disease process. Scientists still don’t know exactly how some of these conditions work and many of them affect multiple organ systems.
POTS, for instance, can cause cardiac, neurological and gastrointestinal symptoms. Many of the conditions also cause symptoms that can’t be measured with tests or labs like fatigue and brain fog. They can also resemble other illnesses. For example, mast cell activation syndrome has the same symptoms as an allergic reaction, but is not caused by a specific allergen.
Long COVID has drawn attention to these conditions but patients still report struggling with being believed by doctors and having their symptoms taken seriously.
People with severe cases of long COVID describe it as a life-altering illness, suffering from debilitating fatigue and symptoms like brain fog that can cause difficulty with everyday tasks. People who were previously healthy and active describe becoming unable to work or complete tasks like basic errands due to their symptoms.
Advocates who want a new NIH office dedicated to these conditions say they have often relied on private funding to research these conditions because of the challenges of gaining funding under current organizational systems and point to the creation of an Office of Autoimmune Diseases as an example of how to address that challenge.
In the meantime, patients are left waiting for answers and treatments that could help them return to the life they had before.
