Researchers do not know a lot about what causes ME/CFS or long COVID, but both conditions appear to follow an infection, among other similarities. Members of the ME/CFS community are hopeful that research into long COVID will help shed light on their own struggles, which currently have no known cause or treatment.
“Nothing new here but good to see the premier research organisation in America – the National Institutes of Health – fully recognising the clinical and pathological overlaps between Long Covid and ME/CFS.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association
The National Institutes of Health in the USA has a report on ME/CFS research being stimulated by the interest in Long COVID.
Extracts
The article interviews Avindra Nath, M.D., the clinical director of the National Institute of Neurological Disorders and Stroke who addresses issues related to the study of both Long COVID and ME/CFS.
What is difficult about studying long COVID and ME/CFS?
It’s difficult studying a disease which is subjective in nature. Without a specific test, you’re left with the ability of people to express themselves and describe their symptoms. People use language in different ways. That makes it very challenging.
The pressing question is, can you find a biological reason for the condition? That’s what everybody’s after: to find a biological marker, like a blood test or something, that will describe it. We probably won’t find one thing, but we might find a few things that will point to some biological cause. And that will give us some indication of what part of the body’s systems aren’t working right.
What are you looking for?
I want to understand what’s happening with the immune system and what it is doing to the brain. The immune system has a lot of different parts to it. It can affect every organ in the body. And I want to understand which parts of the immune system are normal and which parts are acting up. If I can find the parts that are acting up, then I can figure out how to shut them down.
So what is causing long COVID?
That’s the question. Is the virus persisting in the body somewhere? Or is long COVID some kind of an immune reaction that continues on after SARS-CoV-2 is gone? There’s probably evidence for both. There’s no doubt that the immune system continues to be activated. But we aren’t sure what is driving that persistent immune activation. It’s possible that there’s some residual virus sitting someplace that’s driving it.
Or long COVID might have nothing to do with the virus. It might be that once the immune system gets stimulated, it just self-perpetuates — there are a lot of other autoimmune diseases like that. In lupus or multiple sclerosis, you never find any infection. The immune system just kind of activates. It might be triggered by something at first, but then that trigger is gone, and the activation persists.
“We believe your disease. We know that you’re suffering. And we’re doing something about it. We may not have all the answers for you today, but it’s not from a lack of trying. If you talk to anybody in United States right now, everybody knows of someone who’s suffering from something related to COVID-19. So the motivation level for everyone who can do anything about it is extremely high. The desperation is shared by all of us.”
Avindra Nath, M.D., clinical director of the National Institute of Neurological Disorders and Stroke.