You made it. There are any number of reasons you should not have been confirmed, but Republicans were afraid to buck Trump. They voted in lockstep (except polio survivor Mitch McConnell, who Trump then ridiculed), and now you are the most powerful man in the world when it comes to health care. There are many people — especially sick people — who are understandably concerned about what you are going to do with that power, especially since the administration has already made clear that it intends to cut funding for medical research. You have promised to make America healthy again. You have testified that we pay too little attention to chronic illness. Now is your chance. Prove it.
Cure long Covid.
Susan Estrich
Long Covid is an umbrella term for a host of symptoms that come after a Covid infection. Long Covid has many symptoms in common with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia and postural orthostatic tachycardia syndrome (POTS). Research estimates that half the people with long Covid meet ME/CFS diagnostic criteria.
Let me put this in English. My daughter has it. It is a nightmare, and there is currently no cure. We need you, Secretary Kennedy.
They changed the name of “chronic fatigue syndrome” to myalgic encephalomyelitis because CFS made it sound like you were just tired and needed a good night’s sleep. It’s more like you’re paralyzed and just can’t move. If you do too much — physically, intellectually or emotionally — you get post-exertional malaise (PEM), also known as “crashing.”
A crash comes 12 to 48 hours after you exert yourself too much, and it pretty much means that you are bed-bound. Doing too much doesn’t mean running a marathon; it may mean as little as taking a shower, brushing your teeth and getting dressed without taking a break in between to rest. POTS means that your heart rate goes up dramatically if you stand up and sit up straight. Your body thinks you’re running a marathon when you’re only walking the dog. And then you crash. Physical exercise — the answer for so many chronic conditions, including the depression that inevitably comes with long Covid — is often contraindicated.
Estimates of how prevalent long Covid is vary widely. In 2022, researchers using data collected from nearly half a million Americans in the U.S. Census Bureau’s Household Pulse Survey found that 14% of the survey respondents reported suffering long Covid. A study last year found that some 8% of U.S. adults reported having long COVID, a huge number with enormous impact on our nation’s well-being and our economy.
What are your chances of getting long Covid after a Covid infection? Enough to be far more worried than most of us are today about getting Covid. According to the Mayo Clinic, researchers have found that 10% to 35% of people who have had COVID-19 went on to have long Covid.
With time, some people recover. Many people don’t. Various medications help with some symptoms, but there’s no cure for ME/CFS. And the scariest part is that it can get worse. There are people with long Covid who literally find themselves spending their lives living in bed in a dark room. That can happen if you don’t “pace” yourself, which means living within the strict limits on normal life. It’s a terror that hangs over every person with long Covid.
And getting help isn’t easy. While a number of major medical centers have established special programs for long Covid, most doctors still don’t recognize it for the serious illness it is. The first doctor my daughter went to see dismissed her symptoms by saying that everyone gets tired sometimes. Not OK. Things got worse, and we managed to find a doctor who specializes in long Covid and immediately recognized her disease. But so far, he’s throwing spaghetti against the wall — using drugs developed for other purposes in the hopes that they will alleviate the symptoms — and cautioning her that given her compromised immune system, she has to take extraordinary steps to avoid getting another infection. It is no way to live.
Secretary Kennedy, I beg you. You have the ability to help millions of people. We came up with a cure for AIDS. We came up with a vaccine for Covid. We can do this. You will be a hero. I beg you.
To find out more about Susan Estrich and read features by other Creators Syndicate writers and cartoonists, visit the Creators Syndicate website at www.creators.com.
