Long Covid: Waiting for a Cure

Susan Estrich on Apr 11, 2026

My daughter is suffering from long COVID. I have written about it before. I wish I had good news. I don't.

It is a nightmare you should do everything you can to avoid.

Most people who get COVID get well and move on. That's what we want to believe. No one wants to remember, much less relive, the pandemic, for reasons too numerous to count.

Which is all well and good for most people. But most people aren't everyone, or almost everyone.

According to the best estimates out there, as many as 8% of the people who get COVID do not get better. The "lingering symptoms" aren't COVID. They are worse, and there's very little to be done with any of them.

There's ME/CFS, which used to be just called chronic fatigue syndrome, but now has a fancy new name -- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome --to make it seem more real. Trust me, it's real. ME/CFS is a complex, chronic, neuroimmune disease characterized by profound, unrefreshing exhaustion that lasts over 6 months and is not improved by rest. Key symptoms include severe fatigue, post-exertional malaise (PEM), cognitive dysfunction ("brain fog"), and sleep disturbances. If you overdo it, and that may involve doing almost anything, you crash, your baseline gets worse, and you're even further in the hole. Some people spend their lives in dark rooms with no stimuli.

Then there's POTs, Postural Orthostatic Tachycardia Syndrome, which means your heart rate increases over 30 beats per minute when you stand up, so your body thinks it's running a marathon when you get up in the morning and take a shower. Standing is often accompanied by dizziness, lightheadedness and fainting.

Other common symptoms include severe fatigue, brain fog, palpitations and headaches, which are relieved by lying down. Back to the dark room. And there's Mast Cell Activation syndrome, and hyperlipidemia, not to mention anxiety and depression, and severe digestive problems. Anything else miserable that I'm missing? Did I mention that while COVID targeted the weak and disabled, long COVID is most prevalent among young, healthy people, most of them (as is true of many autoimmune diseases), women. Is that why we haven't funded the necessary research?

The first doctor my daughter went to see had clearly never heard of long COVID, and didn't diagnose it. The blood work was fine. Get more sleep, he told her. Then she got covid again.

The doctor I found for her, a "long COVID doctor," told her she had an incurable disease for which there was no real treatment other than to try to address the symptoms piecemeal -- with stimulants for the exhaustion, heart medicine for the POTs, anti-histamines and Pepcid and the rest, each of the medications bringing with it risks and side effects of its own. And none of it a cure for the underlying problems. I'm not sure which doctor was worse.

What to do? You hope. You pray. You search for the cutting-edge treatments. You search for the doctors who seem to know more. You try to talk your way into more tests, although tests are the last thing you want. You keep looking for a problem they can solve, something they can fix.

This is what we need the government to do. To do the research. To find the cure. It's not out there for the taking. It will require the same sort of commitment we made to fighting HIV. We did this. We cured AIDs. We found a vaccine that is highly effective against COVID. Is there any reason we cannot cure this disease?

If only we had the will to do it. One of my friends used to pray that a rich and famous celebrity would be stricken with her kind of rare cancer. I try hard to wish no ill on anyone, but if someone could only get to President Donald Trump and Robert Kennedy Jr. -- if only they could see, for a day, how my daughter and so many of her fellow sufferers live, would they do something?

What RFK Jr. has done to date is to close the long COVID office and cut the research funding. We are left to beg for help.

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