Long Covid: The end of the public health emergency leaves many fearful they will be forgotten

Physicians and patients alike say the threat is clear: that long covid could lose the funding that had raised hopes of solving the mysteries behind a slew of apparently post-viral conditions. And fears have crept in that long-haulers will face a fate akin to that of people with chronic fatigue syndrome — marginalized and misunderstood, with a lack of medical evidence to explain or treat their symptoms and little impetus for researchers to dedicate their careers to such confounding cases.

“Those fears are very well-grounded,” said Emily Taylor, vice president for advocacy and engagement at Solve M.E., a nonprofit for people with myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.

“What we know from ME/CFS and other post-viral diseases is that the recovery rate drops after about four years,” Taylor said.

Taylor helped organize an April meeting in Washington where long-haulers joined with Solve M.E. to lobby lawmakers to devote dollars to addressing a range of post-viral conditions through the Care for Long Covid Act.

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What navigating the pandemic has come down to is individual choices,” said Maria Town, president of the American Association of People With Disabilities who noted that hundreds of people are still dying from covid every day while others become disabled. “With the end of the public health emergency, it is going to be even harder for people to make informed decisions.”

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