Advocates are calling for big changes within the health care system
Adriane Tillman, who has had ME/CFS for a decade and works with the advocacy group #MEAction, remembers trying to get doctors to understand the extent of her physical symptoms, which at first kept her bedridden—only to be diagnosed with depression.
Jaime Seltzer, director of scientific and medical outreach at #MEAction, says research on mental health needs to better account for the realities of chronic illness. For example, many depression screening questionnaires ask if the individual struggles to get out of bed in the morning, but fail to distinguish between feeling unable to get up and being physically unable to get up.
Emerging evidence about what does seem to work for patients also isn’t always shared widely among doctors. Güthe, for example, learned from a physician months after his wife’s death that a drug called trazodone may have helped her sleep despite her chest vibrations—something her own doctors didn’t mention. “Every general practitioner in the United States should be up to date on the basic guidelines for helping patients with Long COVID deal with the major symptoms,” he says.
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