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Tired and Misunderstood

I have been in primary care for several decades.

Pretty much anyone who has been a primary care provider (PCP) knows there is a group of patients we all have seen who suffer from being tired, exhausted, and basically feel poorly for which we are unable to find a specific cause. We would listen, do a careful exam, order appropriate bloodwork, and refer to specialists for additional insight and still not have a clear idea about what is going on.

Unfortunately, some providers would dismiss these patients. If unable to uncover some abnormal finding on exam, bloodwork, or other, they would be tempted to discount their symptoms or label them as malingering or having psychological “issues.”

Many conditions have been implicated as possible causes over the years. I am old enough to remember the “yuppie flu.” Other labels which have been used include chronic flu, fibromyalgia, chronic Epstein-Barr, various food insensitivities, and others.

Now, another condition is revealing some overlap with these conditions; a “gift” of our recent pandemic. I am referring to long COVID-19, long haulers, post-COVID-19, chronic COVID-19, or post-acute sequelae of SARS-CoV-2 (PASC). All have been used.

Lingering symptoms including fatigue follow various types of infectious illnesses. These “postinfectious” fatigue syndromes seem to resemble what is being called myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Most of the time, this condition itself often follows an infectious-like illness.

Following acute COVID-19, whether hospitalized or not, many patients continue to experience debility and symptoms for many months. Some of these “long-haulers” may have symptoms reflecting organ damage. This could involve the heart, lung, or brain. Other long-haulers feel unwell despite having no clear evidence of such organ damage. In fact, patients who feel sick still after six months following a bout with COVID-19 report many of the same symptoms as ME/CFS. We may see a doubling of people with these symptoms following the pandemic. Unfortunately, just like others, many are reporting being dismissed by health care professionals.

Myalgic encephalomyelitis/chronic fatigue syndrome affects between 836,000 and 2.5 million Americans of all ages, ethnicities, genders, and socioeconomic backgrounds. Most are undiagnosed or misdiagnosed.  Some groups are disproportionately affected:

  • Women are affected at a rate three times that of men.
  • Onset often occurs between ages 10 to 19 and 30 to 39. The average age at onset is 33.
  • Blacks and Latinxs may be affected at a higher rate and with greater severity than other groups. We do not know exactly since prevalence data are lacking in people of color.

While the patient’s age at diagnosis is bimodal, with a peak in the teenage years and another peak in the 30s, but the condition has been described in people from ages 2 to 77.

Many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Because of this, nine out of 10 patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. And now, because of the COVID-19 pandemic, these problems are becoming even more prevalent.


These patients typically experience a proven or nonspecific infection but fail to recover as expected and continue to be ill weeks to months later.

The use of exercise therapy and psychological interventions (particularly cognitive behavior therapy) to treat fatigue related to cancer, inflammatory conditions, neurologic conditions, and fibromyalgia have been used for years with generally good effect. However, when the population suspected of having ME/CFS was given the same treatments, they consistently did worse, not better, with exercise and activity.

The “Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine” looked at the data and came up with criteria. They, in essence, called for a redefining of this illness. This was published in the National Academies Press in 2015. The challenge is many health care providers are not yet familiar with these criteria. Now with the increase of patients brought on by post-COVID-19, the interest has escalated considerably. The criteria:

  • A substantial reduction or impairment to engage in pre-illness levels of work, school, or social activities that persists for more than six months accompanied by fatigue, often profound, which is not due to exercise exertion and is not improved by rest.
  • Post-exertional malaise – which means following activity, there is significant fatigue or loss of energy.
  • Unrefreshing sleep.
  • And at least either:
    • Orthostatic intolerance – prolonged standing makes these patients feel much worse.
    • Cognitive impairment – just unable to think clearly.

(Patients should have these symptoms at least half of the time of mild, moderate, or severe intensity.)

  • Many people with ME/CFS also have other symptoms. Additional common symptoms include:
    • Muscle pain
    • Pain in the joints without swelling or redness
    • Headaches of a new type, pattern, or severity
    • Swollen or tender lymph nodes in the neck or armpit
    • A sore throat that is frequent or recurring
    • Chills and night sweats
    • Visual disturbances
    • Sensitivity to light and sound
    • Nausea
    • Allergies or sensitivities to foods, odors, chemicals, or medications

Even after diagnosis, patients struggle to obtain appropriate care and have often been prescribed treatments, such as cognitive-behavioral therapy (CBT) and graded exercise therapy (GET), that could worsen their condition.

New York Times best-selling author Meghan O’Rourke recently wrote a book called “The Invisible Kingdom: Reimagining Chronic Illness.” A note from the publisher introduces the topic as:

“A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. The author delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.”

Finally, there have been several studies which suggest the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and workmates. This label can minimize how serious this condition is for those afflicted. The IOM committee recommends a new name to replace ME/CFS: systemic exertion intolerance disease (SEID).

Naming this condition SEID would actually highlight the central feature of this disease. Namely, exertion of any sort (physical, cognitive, or emotional) – can adversely affect patients in many ways.


“The Invisible Kingdom: Reimagining Chronic Illness” Meghan O’Rourke