Art by Sally Jones
Many people who have survived Covid-19 are struggling with lingering challenges. Aside from complications from organ damage, one of the most common persistent symptoms is fatigue. Some people simply don’t seem to fully recover from the virus. It’s too soon to know how many of these people will return to their pre-Covid state. But it’s likely that many will join a long-ignored group of people who have failed to fully recover from other viral infections.
Dr. Anthony Fauci, whose wisdom we eagerly seek today regarding Covid-19, became a hero for doggedly seeking a deeper understanding of HIV/AIDS and pushing for successful treatments. Yet, ironically, Fauci has not paid much attention to people whose lives have been permanently derailed by other viruses. Will he address this oversight by committing resources to understanding the long term fallout of our novel coronavirus as well as past viral infections?
In his role as head of the National Institute of Allergy and Infectious Diseases, Fauci has been able to decide where to allocate millions of dollars for research. He has time and again neglected to fund projects that focus on finding ways to diagnose and treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ME/CFS often strikes people after ordinary viral illnesses. They simply don’t fully recover. The severity of ME/CFS varies from relatively mild (people can manage some self care but are often unable to work) to severe (people cannot manage self care and may be bedridden).
Even people with mild versions have their lives derailed more so than people with many conditions considered more serious. Simple activities such as basic shopping, housekeeping, and self-care must be spaced out over days to minimize the likelihood of Post-Exertional Malaise. PEM can take them down for days, weeks, or even longer if they are not careful. Physicians are often clueless about this key feature of ME/CFS, perhaps because people who, on a good day, can get to an office appointment and “look fine.” They are truly invisible when they are suffering.
Exercise seems to be the one recommendation that works for every patient, regardless of condition, yet it is the one practice that is counterproductive for anyone with ME/CFS. In fact, observing a person’s recovery after exercise is essential in diagnosing this disease. What’s a doctor to do when advice that works for “everyone” makes this particular patient’s life worse? Humility is in order. This is when listening skills become absolutely essential.
Dr. Fauci does not have patients, so he won’t be listening in person to stories of setbacks after a day of activity. But, he absolutely needs to listen to the stories that motivate researchers who submit grant applications for studying ME/CFS. Will one silver lining of Covid-19 be a focus on the people who do not fully recover? Please, Dr. Fauci, now’s the time to address this long-neglected group of people.
If you’d like to learn more about this disease and who’s dedicated to researching tools for diagnosis and possible treatments, here are some links to explore. You may well know someone who limits activities to manage these symptoms but is reluctant to tell you what’s going on due to the stigma associated with Chronic Fatigue Syndrome. Perhaps Covid-19 patients will be our wake-up call.
A final note: The Seattle Metro area, with all of its state of the art medical centers and robust research culture, is lacking medical providers who welcome patients with ME/CFS. Perhaps you know someone who’d like to help change this.