ME/CFS: The disease is cruel. Life remains tender and terribly beautiful

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Written By Maya Cantina

This article is part of TIME on weekendsissue 19/2024.

I have been retired for a few weeks now. I’m in my mid forties. If someone had told me this two years ago, I probably would have laughed, shook my head and typed a few more appointments into my calendar. Then, in April 2022, came the Covid infection. And nothing has been the same since.

I am in the most severe form of Long Covid being ill with a disease with the tricky name ME/CFS. This is the abbreviation for two different names for the disease, both of which are suboptimal and do not add up better: ME stands for Myalgic Encephalomyelitis, which means “inflammation of the brain and spinal cord with muscle involvement”; CFS stands for the misleading name Chronic Fatigue Syndrome.

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