Long COVID Shouldn’t Have Taken Us by Surprise

Long COVID’s symptoms seem to match those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition that millions have suffered from for decades.

Long COVID isn’t an anomaly. In fact, evidence that individuals would suffer symptoms weeks, months or even years after they’ve gotten COVID-19 and then “recovered” had been known for decades. Long COVID presents with symptoms very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and an advocacy group for those with ME/CFS wants the National Institutes of Health (NIH) and other federal agencies to consider the two conditions linked—and that the battle against one should also be the battle against the other.

A study published last July in The Lancet concludes that individuals suffering from long COVID contend with symptoms associated with ME/CFS, such as fatigue, foggy mind, exertional malaise, and orthostatic intolerance. More than eight million Americans will possibly develop long COVID, tripling the number of people with ME/CFS, according to a study published January 18 in Frontiers in Medicine.

“This comes as no surprise to the ME/CFS community,” Adriane Tillman, the editor at #MEAction, an advocacy organization for people with ME/CFS, writes in an email to Infection Control Today® (ICT®). “Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus and never recovered before the pandemic, and developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.”

The organization worries that this fact about long COVID might have been lost in the maelstrom of data besieging health care experts and the public during the pandemic. Even though some prominent health care experts have publicly acknowledged the connection.

Anthony Fauci, MD, the director of the National Institute of Allergy and Infectious Diseases and President Joe Biden’s chief medical advisor, said at a press conference in July 2020, that “there is no question that there are a considerable number of individuals who have a post-viral syndrome that really in many respects can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus….”

Symptoms that are highly suggestive of ME/CFS, Fauci added. “Brain fog, fatigue, and difficulty in concentrating so this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19,” Fauci said.

Walter Koroshetz, MD, the director of the National Institute of Neurological Disorders and Stroke, said on February 26, 2021 that “I think ME/CFS and long COVID overlap so much that over time they will become one and the same. ME/CFS is thought in most cases to be a post-some infectious illness. Only difference here is that we know what virus is driving it in large numbers of persons.” (Koroshetz made the comments at an interagency meeting between the NIH and the Centers for Disease Control and Prevention.)

Tillman writes to ICT® that “ME/CFS is a complex, chronic disease that affects multiple systems in the body. It is highly debilitating, leaving 75 percent unable to work and 25 percent home or bed bound. Recovery is rare.”

Drawing on data from past viral outbreaks, Tillman says that it’s possible that 10% to 12% of the nearly 73 million Americans who’ve been infected by COVID-19 could develop ME/CFS symptoms, or about 8.7 million individuals.

Advocacy groups for those with long COVID and ME/CFS want the NIH to include research in ME/CFS as part of the agency’s $1.15 billion RECOVER initiative, and Tillman writes that “ample research [already] exists on post-viral illness.”

She adds: “And yet, we continue to see amnesia and inaction from the NIH when it comes to building off the post-viral knowledge that already exists. Researchers with little experience in long COVID and no experience before COVID-19 are directing NIH-funded initiatives; this means people who have been in the field for six months are grantees over researchers with three decades’ experience.”

Those researchers who have decades of experience dealing with post-infection symptoms “need to be at the forefront of the long COVID research agenda, or we risk delaying our understanding and treatment of this illness,” writes Tillman.