🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it.
This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
theatlantic.com/health/archive…
This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
theatlantic.com/health/archive…
ME/CFS involves a panoply of debilitating symptoms that affect almost every organ system. People are intensely sick for years or decades. They spend much of that time getting stigmatized, dismissed, misdiagnosed. 2/ theatlantic.com/health/archive…
At the highest estimates, Americans with ME/CFS outnumber the populations of 15 individual states. But there aren’t enough ME/CFS specialists to fill a Major League baseball roster. Most patients never get a diagnosis, let alone any kind of care. 3/ theatlantic.com/health/archive…
Worse still, the ME/CFS specialists are ageing out. Most are at retirement age or near it. A US coalition of the big players includes just 21 names, of whom 3 are retired & 1 is dead. Most work in the coasts. There are zero in the Midwest. 4/
theatlantic.com/health/archive…
theatlantic.com/health/archive…
ME/CFS is mostly caused by infections & many long COVID cases are effectively ME/CFS by another name. The exact number is hard to define, but even with v. conservative estimates, the number of ME/CFS patients has more than doubled in the last 3 years. 5/
theatlantic.com/health/archive…
theatlantic.com/health/archive…
The immense overlap between ME/CFS and long covid means that the former’s patients & clinicians have so much to teach the latter’s. But this need to educate people new to complex chronic illnesses is draining their time even further. 6/ theatlantic.com/health/archive…
ME/CFS specialists are now torn between patients whose needs they already couldn’t meet, new long-haulers who also need their help, & clinicians who’d benefit from their knowledge. Which means some ME/CFS patients risk losing the little care they had. 7/ theatlantic.com/health/archive…
But long COVID also presents an opp to rectify the decades of neglect & prejudice that people with ME/CFS & other complex chronic post-viral illnesses have faced. More recognition, respect, research, treatments are necessary, but maybe now possible. 8/ theatlantic.com/health/archive…
This piece looks at why ME/CFS has been so dismissed for so long, why it’s crucial for everyone to redress that legacy, and the people who are working their hardest to do so. I encourage everyone—healthcare workers, especially—to read it. 9/ theatlantic.com/health/archive…
*Everyone* I’ve spoken to in the ME/CFS community saw long COVID coming well before most of the scientists & medical professionals I know. That alone should prompt some serious reflection. The community has so much wisdom & knowledge to offer. 10/ theatlantic.com/health/archive…
Much about ME/CFS is uncertain, but the “mystery illness” framing makes for a convenient excuse. There’s a lot *to know* about testing for & treating it; ME/CFS specialists & patients are wellsprings of knowledge, esp. for long COVID. 11/ theatlantic.com/health/archive…
Thanks so much to all the patients, clinicians, and advocates who spoke to me for this story. I hope it was worth whatever spoons you used up. 12/ theatlantic.com/health/archive…
And as with the earlier brain fog piece, I've recorded an audio version for anyone whose brain fog makes reading difficult. It'll be added to the piece sometime later this morning. 13/ theatlantic.com/health/archive…
Update: the audio version is now up. theatlantic.com/health/archive…
• • •
Missing some Tweet in this thread? You can try to
force a refresh
　
