Thursday, August 27, 2020

COVID-19 Long-Haulers and ME/CFS

A new term has emerged in the medical community and the news media in the past few months: COVID-19 long-haulers. This refers to those patients who recover from COVID-19, their respiratory and other viral-specific symptoms clear up, but they continue to be severely ill, suffering from heavy fatigue, general pain, and a strange worsening after even mild exertion.

Sound familiar?

ME/CFS Known to Begin After Various Infectious Triggers
Many of us who've lived with ME/CFS for years expected this to happen almost as soon as the coronavirus pandemic began. After all, about 75-80% of ME/CFS patients begin their chronic illness after some sort of infectious trigger, so why wouldn't a novel coronavirus do the same?

One of the earliest scientific studies to confirm this suspected relationship between infectious triggers and lingering ME/CFS was the Dubbo study in Australia. They studied 253 people who contracted either Epstein-Barr Virus (EBV which causes mono aka glandular fever), Q fever, or Ross River virus and found that approximately 11% of them went on to develop ME/CFS. This basic concept (and percentage) has been proven in many more studies since: after certain infections, about 10-11% of the patients do not fully recover and instead develop ME/CFS. This relationship was further born out by the many "cluster outbreaks" that have occurred over the years (documented as early as 1955 in London), including the Incline Village, NV, and Lyndonville, NY, outbreaks in the 1980's that finally got the CDC involved. Over the years, Lyme disease, enteroviruses, and other infectious agents have been positively identified as triggers for ME/CFS, in addition to the three infections studied in Dubbo.

Given this well-documented history, it only makes sense that a coronavirus could be a trigger, too. In fact, my two sons first showed symptoms of ME/CFS at the same time in 2004, just after one son and their dad had a run-of-the-mill respiratory virus. The virus included a nasty cough that lasted for six weeks, making me wonder now whether it was also a coronavirus.

When headlines started to emerge all over mainstream media like this one, "No One Knows Why These COVID-19 Patients' Symptoms Keep Relapsing," I found it quite frustrating. I felt like shouting, "Yes, we DO know why! There's no mystery!"

ME/CFS in the News

Finally, the medical community and mainstream media began to catch on that this "mystery" of the so-called COVID-19 long-haulers might be ME/CFS. It's always a thrill when ME/CFS makes it into the mainstream news since we are so used to being ignored and invisible. Soon, it began to pop up in articles and news stories all over the world.

This article from venerated news magazine The Atlantic from June, "COVID-19 Can Last for Several Months," was one of the earliest to not only mention ME/CFS but include some solid scientific information about our illness, toward the bottom of the article. It mentions the Dubbo study, accurately describes ME/CFS, including the exertion intolerance, and provides the alarming news that the 2003 SARS epidemic in Hong Kong left 27% of its patients with ME/CFS. This is alarming because all other studies of other infectious agents have found that 10-11% go on to develop ME/CFS and because COVID-19 is related to SARS.

By July, the news was filled with articles about COVID-19 long-haulers, with many of them mentioning ME/CFS. The Scientist, another very well-respected journal, published "Could COVID-19 Trigger Chronic Disease in Some People?" This article includes detailed, accurate information about ME/CFS, including a cool infographic, and emphasizes the severity of the illness and the way that its patients have been ignored over the decades.

This news story from the UK includes an interview with a COVID-19 patient who seems to have developed ME/CFS and a doctor who describes ME/CFS in an accurate, detailed way:

Even Dr. Anthony Fauci, our national hero, mentioned ME/CFS several times in his press conferences, interviews, and other public appearances. Here, CNN reported that Fauci said those not recovering from COVID-19 were "highly suggestive" of ME/CFS. More recently, in August, CNN published a far more detailed article about ME/CFS and COVID-19, with quotes from Dr. Fauci - check out the 1-minute video at the top of that article.

This doctor describes his own experience as a COVID-19 "long-hauler" in this segment on the Today show (their "expert" mentions ME/CFS, though he's clearly not really an expert in it!):

More Research!

All of this unusual attention on ME/CFS is having two positive effects: research into whether COVID-19 long-haulers have ME/CFS and an increased interest in funding ME/CFS research in general. As usual, Cort Johnson at Health Rising has summed this up nicely. As Cort's article explains, the US's National Institutes of Health has already undertaken two studies on the long-term effects of COVID-19, including effects on the immune system.

The largest and most in-depth study on COVID-19 and ME/CFS has been initiated by one of the top ME/CFS research organizations, Open Medicine Foundation. This page describes the study they have undertaken to determine for certain whether COVID-19 long-haulers have developed ME/CFS and what percentage of patients fall into that category.

This study on Medscape, "Research Examines Link Between Long COVID and ME/CFS," provides an overview of the data already gathered, plus previous studies on infectious agents (including SARS) that have triggered ME/CFS.

Whether all of the studies on COVID-19 long-haulers underway--and those to come--mention ME/CFS by name or not, their research will help those of us with ME/CFS by investigating deeply the mechanisms by which inflammation and immune dysfunction keep people sick after the infections have cleared up.

Bottom line is that it's horrible that so many more people are being added to the ranks of those with ME/CFS because of COVID-19, but in the long run, the increased attention to our normally-ignored disease will hopefully lead to some answers and possibly treatments.

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