When Being Sick is Only Part of the Burden: Long-COVID, ME/ CFS and the need to be believed, understood, and supported
For many people living with Long COVID or ME/CFS, the illness itself is only part of the burden. There is also the exhaustion of trying to be understood, the uncertainty of not knowing what comes next, and the pain of having very real symptoms questioned or mistaken for something “all in their head.”
I had the privilege of collaborating on this article with a remarkable team of clinicians, researchers, patient advocates, and caregivers, many of whom I came to know through the NIH ME/CFS Research Network’s Community Advisory Committee at Columbia University. The article grew out of a shared hope that people living with Long COVID and ME/CFS might feel more understood, and that the professionals caring for them might have clearer and more compassionate guidance.
Drawing on decades of research, clinical experience, and the lived experiences of patients and families, the article offers guidance to people challenged by these complex illnesses, as well as to the clinicians and loved ones supporting them. At its heart is a simple but essential message: Long COVID and ME/CFS are biomedical illnesses, and those living with them deserve care that takes both their physical suffering and the profound emotional impact of that suffering seriously.
A New Clinical Challenge: Supporting Patients Coping with the Long-Term Effects of COVID-19
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