I had a friend who got CF in the early 90s, and it was horrible. She went from a vibrant, fun person to someone who could barely get out of bed. It was truly awful. It was like she had the flu, basically forever. There was even less understanding then of what she was going through, and she had to go to like 15 doctors before she found someone to take her seriously. Even then they couldn’t do anything.
Our healthcare systems are failing people. Long COVID could have treatments if we had taken people with CFS seriously.
we'd certainly be further along towards helping people if there'd been more resources put into understnading and curing CFS I think. Hopefully there will be support for Sanders' moonshot bill...
Thanks for this. I have Long Covid, but like many, rarely tell people as there is a kind of stigma and disbelief then attached to me. I’ve encountered a number of doctors who still apparently have never heard that exercise is contraindicated or impossible with Long Covid. The most tragic part is (on the LC FB group) all the disabled young people (most of whom were extremely athletic) who are missing the normal things people do in their twenties, dating, sex, sports, grad school, etc., and the people who can’t work, are unable to get disability, lose their income, their partners, and often their houses. Everyone is trying so hard to get better that they spring desperately at every supplement or gadget that might help, as standard medicine dismisses them, as you say, and so far offers so little.
Yeah; it's hard not to turn to alternative medicine when the medical establishment is mostly offering what amount to quack cures! (CBT and exercise, which have been pretty much debunked as treatments, but which are still prescribed by many.)
"Vaccination in particular, with its connotations of penetration and invasion, seems almost designed to trigger masculine panic."
Hahaha -- I'm sorry, this is infuriating and sad, but also so funny. Masculinity! It's not news to many of us, but it's always nice when a man sees it for what it is.
Thanks for this. Sincerely. My partner has long covid and I have an ultra rare genetic condition known to exist in 100 people (on the planet, period, etc) and I have a subtype that severely impacts my mitochondrial function in a way that has similarities to CFS.
People really do find it super easy to gaslight such things.
Ty so much for this article. I got COVID in March of 2020 as a nurse still unprotected by masks. I got it at work. I have long covid. I was out of work 9 months and forced back after they refused to continue to provide care for me because it was Tooo looong.
I have had every symptom possible. I have an aneurysm and all kinds of cardiac issues I never had before. Gut issues, covid toes, exhaustion and brain fog among many other issues. I was working 3 jobs prior and now can barely maintain a 24 hour position. My job is strenuous and gratefully I am ready to retire but the push through long covid has taken a huge toll on me. My PCP refused to see me through covid. I live in Maine and work in Boston. There is no help. I have lost so much income and well being. I work for the mass general Brigham corp and I am not getting help. It is a travesty and I know I am not alone. Please keep speaking to this and ty so much!
I'm so sorry. I'm a summer Mainer and had excellent care with Long Covid (I suspect) cardiac issues. We spent 1.25 years in Maine during lockdown helping one of our kids and homeschooling our granddaughter. Maine is in my heart and soul. Your commute sounds awful and the lack of understanding from Brigham is discouraging. Thank you for all the nursing care you have given countless patients. I hope your retirement brings you joy despite your ongoing symptoms.
I have had Long Covid for a year. Symptoms are an out-of-whack vestibular system (for which I had 12 weeks of PT last summer) and some brain fog and more recently much worse asthma/breathing problems. Covid is no joke and because of politics it is going on much longer than it needed to, and not being treated seriously enough. Thank you for this article.
I have a friend with long covid. She works in the health industry, had two bouts of covid, then developed breast cancer. Nobody is making up having long covid, why would they, it sucks! It doesn’t surprise me about the medical establishment, they’ve long ignored women’s health. It took them forever to realize that women experience heart attacks differently than men. SMH. Props to Bernie Sanders for his bill.
My wife developed Fibromyalgia/Chronic Lyme Disease/Post Lyme Syndrome 20+ years ago. Various doctors have called it various things. One nice thing about the CDC being force to acknowledge Long Covid is that they had to acknowledge that Chronic Lyme is a thing too. It’s still hard to find a doctor to treat her, but it’s a change in the right direction.
I do not wish to disparage the medical profession, but sometimes they don't put out clear messages. Everyone I've ever met has suffered a headache, at least on some occasions; sometimes they can be linked, like toothaches leading to headache. The problem is they report headache as "phantom"; not necessarily meaning "fake" pain, but the implication is that phantom is fake.
Such is the case with a lot of the conditions mentioned, I imagine that Long-Covid is not nearly clearly defined when the medical profession says, 'Long-Covid exists, but we don't know why." The implication that many take is if they don't why, it's fake.
Medical practitioner are supposed to know why, if you go to the doctor and he tells you I don't know why you want to find a doctor who does know why. Right or wrong, doctors are always expected to know why.
Medicines are supposed to work for everyone, but they don't always, and we blame the doctor. It has created a culture where patients want a symptom reduced, doctors comply. So symptoms are not always connected and people suffer.
We don't know why Long-Covid exists; or even if it is something residual from covid, if it was a prior condition, aggravated by covid; or perhaps something different that resulted from covid.
Long long time ago I had measles. Measles can lead to blindness. After having measles I could no longer see in direct sunlight. I had to begin to wear dark glasses at age five, but otherwise my sight was normal. But many thought I was "faking".
The problem is we have come to expect too much; and things they can't be cured, are, therefore, "fake."
It can then translate those who may feel sexual inclinations against the norm, are not real desires, but sinful desires. People are 'dumb" if they disagree; news can be faked and called real; conspiracy theories can abound; newspapers like Nat. Enquirer open the door to broadcasts on Fox, and people who think the government does not address their concerns must be stealing their votes.
I don't wish to make it that simple, or suggest denial of Long-Covid is somehow linked to disbelief in honest elections.My suggestion is that whenever people begin to believe incomplete promises of any kind have to be complete, then we open the door to those who can say, "Ah, here's the solution."
The promise of modern medicine is that it is too often seen as a "complete solution" even though, no more than "democracy" is a complete solution.
There seems to me to be a need for education opening the door from answering questions, to teaching that every answer leads to more questions. Somehow we need to learn that we can continue to look for solutions and anything that "explains everything" is probably not an answer to anything.
With no answer about Long-Covid, then Long-Covid is not real, if one expects medicine to always have the answer. Which is something I don't think medical researchers have ever claimed. But others do with "Cure now in sight" for something, everyday, somewhere, too many are making claims for medicine that it can not actually meet.
I had a friend who got CF in the early 90s, and it was horrible. She went from a vibrant, fun person to someone who could barely get out of bed. It was truly awful. It was like she had the flu, basically forever. There was even less understanding then of what she was going through, and she had to go to like 15 doctors before she found someone to take her seriously. Even then they couldn’t do anything.
Our healthcare systems are failing people. Long COVID could have treatments if we had taken people with CFS seriously.
we'd certainly be further along towards helping people if there'd been more resources put into understnading and curing CFS I think. Hopefully there will be support for Sanders' moonshot bill...
Thanks for this. I have Long Covid, but like many, rarely tell people as there is a kind of stigma and disbelief then attached to me. I’ve encountered a number of doctors who still apparently have never heard that exercise is contraindicated or impossible with Long Covid. The most tragic part is (on the LC FB group) all the disabled young people (most of whom were extremely athletic) who are missing the normal things people do in their twenties, dating, sex, sports, grad school, etc., and the people who can’t work, are unable to get disability, lose their income, their partners, and often their houses. Everyone is trying so hard to get better that they spring desperately at every supplement or gadget that might help, as standard medicine dismisses them, as you say, and so far offers so little.
Yeah; it's hard not to turn to alternative medicine when the medical establishment is mostly offering what amount to quack cures! (CBT and exercise, which have been pretty much debunked as treatments, but which are still prescribed by many.)
"Vaccination in particular, with its connotations of penetration and invasion, seems almost designed to trigger masculine panic."
Hahaha -- I'm sorry, this is infuriating and sad, but also so funny. Masculinity! It's not news to many of us, but it's always nice when a man sees it for what it is.
Thanks for this article, Noah!
Thanks for this. Sincerely. My partner has long covid and I have an ultra rare genetic condition known to exist in 100 people (on the planet, period, etc) and I have a subtype that severely impacts my mitochondrial function in a way that has similarities to CFS.
People really do find it super easy to gaslight such things.
Ty so much for this article. I got COVID in March of 2020 as a nurse still unprotected by masks. I got it at work. I have long covid. I was out of work 9 months and forced back after they refused to continue to provide care for me because it was Tooo looong.
I have had every symptom possible. I have an aneurysm and all kinds of cardiac issues I never had before. Gut issues, covid toes, exhaustion and brain fog among many other issues. I was working 3 jobs prior and now can barely maintain a 24 hour position. My job is strenuous and gratefully I am ready to retire but the push through long covid has taken a huge toll on me. My PCP refused to see me through covid. I live in Maine and work in Boston. There is no help. I have lost so much income and well being. I work for the mass general Brigham corp and I am not getting help. It is a travesty and I know I am not alone. Please keep speaking to this and ty so much!
that is horrible. I'm really sorry.
I'm so sorry. I'm a summer Mainer and had excellent care with Long Covid (I suspect) cardiac issues. We spent 1.25 years in Maine during lockdown helping one of our kids and homeschooling our granddaughter. Maine is in my heart and soul. Your commute sounds awful and the lack of understanding from Brigham is discouraging. Thank you for all the nursing care you have given countless patients. I hope your retirement brings you joy despite your ongoing symptoms.
Hi Mary
Ty for your empathy. Yes I adore Maine. I moved here in 2016 and I agree it is heart and soul.
Where in Maine do you live in your summers? I am in Bath.
I am glad you got good long Covid support. I have had to continuously advocate for myself and that is not my nature! Being a nurse helps.
Ty again for your kindness.
P.S. do you have relatives in NJ? I have dear friends from NJ with your name. Sadly our dear friend died of Covid in 2020
I have had Long Covid for a year. Symptoms are an out-of-whack vestibular system (for which I had 12 weeks of PT last summer) and some brain fog and more recently much worse asthma/breathing problems. Covid is no joke and because of politics it is going on much longer than it needed to, and not being treated seriously enough. Thank you for this article.
long term breathing trouble I think is pretty common, and very disturbing. I wish we were making some effort to address these issues!
Thank you.
I have a friend with long covid. She works in the health industry, had two bouts of covid, then developed breast cancer. Nobody is making up having long covid, why would they, it sucks! It doesn’t surprise me about the medical establishment, they’ve long ignored women’s health. It took them forever to realize that women experience heart attacks differently than men. SMH. Props to Bernie Sanders for his bill.
My wife developed Fibromyalgia/Chronic Lyme Disease/Post Lyme Syndrome 20+ years ago. Various doctors have called it various things. One nice thing about the CDC being force to acknowledge Long Covid is that they had to acknowledge that Chronic Lyme is a thing too. It’s still hard to find a doctor to treat her, but it’s a change in the right direction.
I do not wish to disparage the medical profession, but sometimes they don't put out clear messages. Everyone I've ever met has suffered a headache, at least on some occasions; sometimes they can be linked, like toothaches leading to headache. The problem is they report headache as "phantom"; not necessarily meaning "fake" pain, but the implication is that phantom is fake.
Such is the case with a lot of the conditions mentioned, I imagine that Long-Covid is not nearly clearly defined when the medical profession says, 'Long-Covid exists, but we don't know why." The implication that many take is if they don't why, it's fake.
Medical practitioner are supposed to know why, if you go to the doctor and he tells you I don't know why you want to find a doctor who does know why. Right or wrong, doctors are always expected to know why.
Medicines are supposed to work for everyone, but they don't always, and we blame the doctor. It has created a culture where patients want a symptom reduced, doctors comply. So symptoms are not always connected and people suffer.
We don't know why Long-Covid exists; or even if it is something residual from covid, if it was a prior condition, aggravated by covid; or perhaps something different that resulted from covid.
Long long time ago I had measles. Measles can lead to blindness. After having measles I could no longer see in direct sunlight. I had to begin to wear dark glasses at age five, but otherwise my sight was normal. But many thought I was "faking".
The problem is we have come to expect too much; and things they can't be cured, are, therefore, "fake."
It can then translate those who may feel sexual inclinations against the norm, are not real desires, but sinful desires. People are 'dumb" if they disagree; news can be faked and called real; conspiracy theories can abound; newspapers like Nat. Enquirer open the door to broadcasts on Fox, and people who think the government does not address their concerns must be stealing their votes.
I don't wish to make it that simple, or suggest denial of Long-Covid is somehow linked to disbelief in honest elections.My suggestion is that whenever people begin to believe incomplete promises of any kind have to be complete, then we open the door to those who can say, "Ah, here's the solution."
The promise of modern medicine is that it is too often seen as a "complete solution" even though, no more than "democracy" is a complete solution.
There seems to me to be a need for education opening the door from answering questions, to teaching that every answer leads to more questions. Somehow we need to learn that we can continue to look for solutions and anything that "explains everything" is probably not an answer to anything.
With no answer about Long-Covid, then Long-Covid is not real, if one expects medicine to always have the answer. Which is something I don't think medical researchers have ever claimed. But others do with "Cure now in sight" for something, everyday, somewhere, too many are making claims for medicine that it can not actually meet.