The link between chronic fatigue and COVID's long haul

OCTOBER 5, 2021 — Editor’s note: This op-ed by Heidi Adams Rueda, associate professor in the Department of Social Work at UTSA, originally appeared in the San Antonio Express-News.

Nearly 30 million people worldwide diagnosed with chronic fatigue syndrome, or CFS/ME, perhaps have felt a sense of normalcy during the pandemic.

The name of this condition does little to describe the complex symptoms that keep many of them homebound and socially isolated.

“We can learn to reprogram our nervous systems and create cultures in which being ‘busy’ isn’t glorified but human ‘being’ is.”

CFS/ME is characterized by persistent and profound fatigue, sleep difficulty, brain fog, dizziness, pain, gastrointestinal issues and a worsening of symptoms following activity or exercise. Many with this illness cannot leave bed. Some use a wheelchair. Those with severe cases are tube-fed in dark rooms.

The National Institutes of Health, or NIH, reports just $15 million annually in federal funding is dedicated to CFS/ME research, even though up to 2.5 million Americans are diagnosed. This highly stigmatized condition is finally getting attention, however, because of the pandemic and the similar symptoms suffered by many with COVID-19 who are not fully recovering.

In 2020, the Centers for Disease Control and Prevention reported one in five people with COVID have continued illness six months after initial diagnosis. Individuals with long COVID experience debilitating symptoms similar to those of CFS/ME, including fatigue, pain, headaches and brain fog. Conservative U.S. estimates point to 3.7 million cases of long COVID. Many with CFS/ME hope the recently allocated $1.15 billion in NIH funding to long COVID will also unveil new understandings and a cure for the illness.

What can we learn from CFS/ME to prevent COVID from becoming a long-haul syndrome for some? First, like COVID long-haulers, many people with CFS/ME link the onset of symptoms to a viral infection. Second, stress around the time of a triggering infection, or during recovery, can be important in determining whether the person recovers. Finally, trauma during childhood can prime nervous system dysregulation, and thereby lowered immunity, later in life.

Whereas our public health approach for COVID has focused on mask-wearing and vaccines, CFS/ME research points to a different approach in potentially preventing long-haul COVID — the need to reduce stress, support mental health across the lifespan, and build teams of physicians and mental health practitioners who approach recovery holistically.

It is important to identify sources of stress since these lower immunity, thereby increasing vulnerability to opportunistic viruses. For me, a not-so-perfect storm of adverse childhood events, homesickness, a romantic breakup and striving to succeed in a doctoral program led to an eight-year recovery journey from CFS/ME.

My story reflects the #millionsmissing from public health conversations who have wisdom that could save lives in today’s pandemic world. For me, healing from CFS/ME has required a mind-body, psycho-spiritual approach to heal underlying emotional trauma and to gain insight into the societal narratives praising overachievement and perfectionism that — like so many — I had embodied. Our bodies speak to us — first in whispers and then, when that doesn’t get our attention, in symptoms.

There is hope for these conditions. We can learn to reprogram our nervous systems and create cultures in which being “busy” isn’t glorified but human “being” is.

Could CFS/ME and COVID long-haulers have similar not-so-perfect storms? It can’t do any harm to build our immune systems by attending to our mental health. While we’re at it, let’s leave our shoes out to honor those who can’t be on the streets and voice the need for more funding to research treatment for CFS/ME.