In spring 2020, reports of COVID “long haulers” started showing up online and on TV news shows.

These are people whose COVID-19 infections have supposedly cleared, yet they continue to experience debilitating symptoms, particularly severe fatigue.

As such reports continue to emerge, the Lyme community seems to collectively nod its head in recognition and say, “Yep. Just like with chronic Lyme disease.”

Lyme-related social media posts often make this connection. But, the national news media overall have pretty much ignored it. Instead, they have appeared to view COVID long-haulers as a highly unusual phenomenon, as “novel” as the “novel coronavirus” itself.

Fortunately, this is starting to change.

This week, the New York Times ran an article acknowledging that long COVID is just the latest example of a pathogen causing persistent symptoms.

In her article, journalist Roxanne Khamsi notes:

Scientists have linked many infections to seemingly disparate ailments that crop up later. They’ve known for many years that an untreated case of strep throat, caused by streptococcal bacteria, can lead to a type of heart disease. More examples have piled up through the decades: Lyme disease can cause a form of arthritis. The bacterium Helicobacter pylori can produce ulcers and stomach cancer. Some strains of human papillomavirus can cause cervical, anal and throat cancer. Medicine has begun only to scratch the surface of how infectious diseases can cause damage far beyond the initial symptoms. (Click here to read the article.)

The following is from the news website Vox:

The subheading on this article by Julia Belluz sums it up nicely: “The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine.”  (Hear, hear.) She states:

The dominant narrative about long Covid has been that it’s a uniquely perplexing feature of Covid-19. Reports of “Covid brain fog” or “Covid dementia,” for example, suggest a disturbing and extraordinary ability of the coronavirus to destroy the lives of survivors. Even a year later, some patients are still struggling to return to work or have their illness recognized, let alone access disability benefits.

…Even with growing awareness about long Covid, patients with chronic “medically unexplained” symptoms — that don’t correspond to problematic blood tests or imaging — are still too often minimized and dismissed by health professionals….Post-viral syndrome and ME/CFS also parallel other contested and little-understood chronic disorders, including chronic Lyme disease. (Click here to read the article.)

Also this week, the Open Medicine Foundation announced a groundbreaking study investigating how long-haul COVID appears to convert into ME/CFS, an illness also known as chronic fatigue syndrome.

According to an OMF press release, the study seeks to find the biological differences between people returning to good health after COVID-19 and those who remain ill more than six months after infection and then develop ME/CFS.

“Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies,” the press release stated.

The world has grappled with the challenges of COVID-19 for more than a year now. Much has been learned in the process, and much still remains to be figured out. Let’s hope that placing a spotlight on medicine’s “frustrating blind spot” regarding persistent symptoms will benefit long-haulers of every kind. We all need it.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.