Thank you Megan Armstrong for sharing your story. I do hope that you and other long covid sufferers eventually find relief.
The contempt shown by the Republican party for medical science (and science in general) is unforgivable. It is impossible to imagine how many people across the globe have needlessly suffered or died because of the Republican cruelty cult.
Thank you for sharing your story and please know that some of us continue to take covid seriously. I got my every 6 months vax yesterday, my 12th since 2021.
With RFK and his jokers running the CDC, NIH, etc. the next pandemic will be even more of a disaster.than Covid-19.
I am grieved by your unnecessary suffering, and horrified by the cruelty of some of the medical professionals you've encountered.
When did Americans decide that facing hard facts was optional? This virus probably won't ever vanish, given the know-nothings currently in power, so we all need to stop playing games with our lives, and our neighbors' lives.
My husband died of the effects of long covid that attacked his ability to stand up among other things. In addition. I have another relative and a close friend who both are suffering from long covid. When I saw that the Trump administration canceled the long covid research unit. I was furious. Thank you for putting this all out in writing. Maybe it will help get attention to this problem, because that virus is not going to go away.
The aftereffects of Covid and Long Covid are real and should never be disputed. Moreover, there is a need to investigate the permanent damage to other organs of the body. I was diagnosed and misdiagnosed during a seven-month bout with Covid. My dizziness and foggy brain would not resolve. In addition, I was experiencing shortness of breath. I had been in superior physical shape, keeping up with 30-year-olds (I'm 76) in Zumba class 3 times a week. Now I couldn't walk my dog a full block. My pulmonologist referred me to two specialists: one specializes in ILD, Interstitial Lung Disease and the other, a rheumatologist/immunologist. Now, I was diagnosed as having ILD, Emphysema and Pulmonary Fibrosis. None of this was detected before Covid. The medications for ILD were $2,000+ and $3,000 per month, not covered by insurance. Both meds make me worse, created bowl issues and severe weight loss. My inflammation markers remained high and I was told that could account for the continued dizziness. I was treated for the inflammation and while it helped my joints, it didn't resolve the other symptoms. I went to specialist after specialist seeking answers and was told that it was simply vertigo. I asked twice to have a brain scan and was told that I didn't need it. During a visit to my hematologist, I showed him a bulge in my neck, and he ordered a CT scan. Low and behold, I had a rather large aneurysm in the carotid artery in my brain that was pressing on my optic nerve and I needed immediate brain surgery. While that was not caused by Covid, if we still had doctors and scientists studying the effects of the virus, I'm confident they would have discovered this two years earlier. Our medical system is broken. Physicians are selling their practices because Medicare and insurance companies don't pay them adequately. There were no Federal funds to study the virus, which does attack our immune systems. We desperately need more research and better vaccines, but we will never see them under this administration.
The effects of long COVID are truly frightening and it's no surprise that Trump and RFK Jr want to sweep it under the rug. They politicized the pandemic and now they want to walk away leaving too many health disasters in their wake. They are absolute monsters.
BTW - if you want a video of what the hardships and heartbreak of long COVID, the YouTube channel Physics Girl tells you the terrible story. Because it happened to her, and 3 years out she's only starting to recover.
I'm reminded - in the worst possible way - of mainstream medicine's initial reaction when Lyme patients were still sick. The cruelty and complete abandonment of their professional obligations led to suffering and death.
I recently buried a friend who wasn't diagnosed until eighteen months after her first Lyme symptoms appeared; her positive diagnosis came from the Napa County Department of Public Health and she was still sent home and told to take NSAIDs and drink fluids. She did both, despite mounting seizures and golf-ball-sized swellings on all her joints. She got worse.
The problem with mainstream medicine not taking things like Lyme and Long Covid seriously is that, too often, it leaves the patient with no options beyond predatory quacks. My friend ended up with massive infusions of antibiotics. The results were catastrophic and did nothing for the Lyme.
I have friends suffering with long Covid and I hope to hell we find a way to fix this. Courage and strength to you.
Covid left me witha few left over symptoms too. GI tract specific. I am so sorry you have so many issues. Mine pales in comparison to yours. I hope you find some answers/ solutions for yourself.
So sorry you’ve had to suffer so much and for so with long covid. Having long covid most likely exacerbates symptoms of dysautonomia such as POTS. By now, you’ve probably heard the standard regimen for taking care of and minimizing symptoms of POTS. I too have POTS and have had covid, every case is different and everyone recovers at their own pace. I hope you find a sympathetic doctor who will take you seriously and help you regain your health as quickly as possible.
Thank you Megan. And please keep writing about this. As I read your post I was already thinking dysautonomia and mast cell activation before you said it. I am a physician who learned the hard way how much medical school simply does not teach us. But knowledge is expanding rapidly. Please keep looking for the best doctor for you. They are out there! And I now am taking care of patients that have been dismissed by other clinicians.
I feel like we are on the cusp of a revolution in our democracy and in how we take care of each other. Medicine needs a huge transformation. Never give up!
Thank you, Megan, for this excellent article. Chronic illnesses are especially difficult to deal with when the medical community dismisses symptoms as ‘nerves’ or ‘psychological issues'. Johns Hopkins continues to provide resources for a variety of post-Covid illnesses: https://www.hopkinsmedicine.org/coronavirus/pact. My daughter-in-law suffers from long Covid and she has spoken positively of the treatment she has received at Johns Hopkins.
Megan, your post is courageous. One of my dear relatives has received multiple covid vaccinations and still became ill, and now has a a form of long covid less debilitating than yours. In your research, do you know of studies examining relationships of various covid vaccines, people succumbing (or not) to covid, and long covid? Add to that, I have also read, and cannot remember where, that covid may accelerate the spread of some cancers. Also, I recall reading a recommendation from Moderna about a year or more into vaccine administration their suggestion of reduced dosing for women b/c of women having more severe reactions to the vaccine. I have searched PubMed several times and come up with nothing. My very best wishes to you.
Thank you for writing this. Your advocacy is appreciated! I developed Long Covid (primarily ME/CFS, dysautonomia, and POTS) in 2024 that left me bedbound for months. I am forever thankful to the multidisciplinary team at the UNC Chapel Hill Long Covid Clinic (now closed due to lack of funding) for helping me, and I encourage you to keep seeking effective and compassionate care. You deserve a medical team that sees you and supports you. We can heal, please do not give up.
Thank you for this essay, and sending best wishes to you. You and other readers may be interested in this impressive piece about long covid by artist Angela Bandurka, which really helps to communicate the experience:
I am sorry for your pain and the ways health care providers have regarded your troubles. I’ve had Lyme disease several times (dang yard work) and have many of the same kinds of symptoms you discuss in your excellent article. I’m looking for some action in that health area too. Some state health agencies do better than other state’s. Now I get to blame some of my woes on old age :). Good luck.
Thank you Megan Armstrong for sharing your story. I do hope that you and other long covid sufferers eventually find relief.
The contempt shown by the Republican party for medical science (and science in general) is unforgivable. It is impossible to imagine how many people across the globe have needlessly suffered or died because of the Republican cruelty cult.
Thank you for sharing your story and please know that some of us continue to take covid seriously. I got my every 6 months vax yesterday, my 12th since 2021.
With RFK and his jokers running the CDC, NIH, etc. the next pandemic will be even more of a disaster.than Covid-19.
Megan -
Thank you for your essay.
I am grieved by your unnecessary suffering, and horrified by the cruelty of some of the medical professionals you've encountered.
When did Americans decide that facing hard facts was optional? This virus probably won't ever vanish, given the know-nothings currently in power, so we all need to stop playing games with our lives, and our neighbors' lives.
I wish you better health.
My husband died of the effects of long covid that attacked his ability to stand up among other things. In addition. I have another relative and a close friend who both are suffering from long covid. When I saw that the Trump administration canceled the long covid research unit. I was furious. Thank you for putting this all out in writing. Maybe it will help get attention to this problem, because that virus is not going to go away.
The aftereffects of Covid and Long Covid are real and should never be disputed. Moreover, there is a need to investigate the permanent damage to other organs of the body. I was diagnosed and misdiagnosed during a seven-month bout with Covid. My dizziness and foggy brain would not resolve. In addition, I was experiencing shortness of breath. I had been in superior physical shape, keeping up with 30-year-olds (I'm 76) in Zumba class 3 times a week. Now I couldn't walk my dog a full block. My pulmonologist referred me to two specialists: one specializes in ILD, Interstitial Lung Disease and the other, a rheumatologist/immunologist. Now, I was diagnosed as having ILD, Emphysema and Pulmonary Fibrosis. None of this was detected before Covid. The medications for ILD were $2,000+ and $3,000 per month, not covered by insurance. Both meds make me worse, created bowl issues and severe weight loss. My inflammation markers remained high and I was told that could account for the continued dizziness. I was treated for the inflammation and while it helped my joints, it didn't resolve the other symptoms. I went to specialist after specialist seeking answers and was told that it was simply vertigo. I asked twice to have a brain scan and was told that I didn't need it. During a visit to my hematologist, I showed him a bulge in my neck, and he ordered a CT scan. Low and behold, I had a rather large aneurysm in the carotid artery in my brain that was pressing on my optic nerve and I needed immediate brain surgery. While that was not caused by Covid, if we still had doctors and scientists studying the effects of the virus, I'm confident they would have discovered this two years earlier. Our medical system is broken. Physicians are selling their practices because Medicare and insurance companies don't pay them adequately. There were no Federal funds to study the virus, which does attack our immune systems. We desperately need more research and better vaccines, but we will never see them under this administration.
The effects of long COVID are truly frightening and it's no surprise that Trump and RFK Jr want to sweep it under the rug. They politicized the pandemic and now they want to walk away leaving too many health disasters in their wake. They are absolute monsters.
BTW - if you want a video of what the hardships and heartbreak of long COVID, the YouTube channel Physics Girl tells you the terrible story. Because it happened to her, and 3 years out she's only starting to recover.
https://www.youtube.com/watch?v=vqeIeIcDHD0
I'm reminded - in the worst possible way - of mainstream medicine's initial reaction when Lyme patients were still sick. The cruelty and complete abandonment of their professional obligations led to suffering and death.
I recently buried a friend who wasn't diagnosed until eighteen months after her first Lyme symptoms appeared; her positive diagnosis came from the Napa County Department of Public Health and she was still sent home and told to take NSAIDs and drink fluids. She did both, despite mounting seizures and golf-ball-sized swellings on all her joints. She got worse.
The problem with mainstream medicine not taking things like Lyme and Long Covid seriously is that, too often, it leaves the patient with no options beyond predatory quacks. My friend ended up with massive infusions of antibiotics. The results were catastrophic and did nothing for the Lyme.
I have friends suffering with long Covid and I hope to hell we find a way to fix this. Courage and strength to you.
Covid left me witha few left over symptoms too. GI tract specific. I am so sorry you have so many issues. Mine pales in comparison to yours. I hope you find some answers/ solutions for yourself.
Good luck and thanks for the post.
So sorry you’ve had to suffer so much and for so with long covid. Having long covid most likely exacerbates symptoms of dysautonomia such as POTS. By now, you’ve probably heard the standard regimen for taking care of and minimizing symptoms of POTS. I too have POTS and have had covid, every case is different and everyone recovers at their own pace. I hope you find a sympathetic doctor who will take you seriously and help you regain your health as quickly as possible.
Thank you Megan. And please keep writing about this. As I read your post I was already thinking dysautonomia and mast cell activation before you said it. I am a physician who learned the hard way how much medical school simply does not teach us. But knowledge is expanding rapidly. Please keep looking for the best doctor for you. They are out there! And I now am taking care of patients that have been dismissed by other clinicians.
I feel like we are on the cusp of a revolution in our democracy and in how we take care of each other. Medicine needs a huge transformation. Never give up!
Thank you, Megan, for this excellent article. Chronic illnesses are especially difficult to deal with when the medical community dismisses symptoms as ‘nerves’ or ‘psychological issues'. Johns Hopkins continues to provide resources for a variety of post-Covid illnesses: https://www.hopkinsmedicine.org/coronavirus/pact. My daughter-in-law suffers from long Covid and she has spoken positively of the treatment she has received at Johns Hopkins.
I wish you well.
Megan, your post is courageous. One of my dear relatives has received multiple covid vaccinations and still became ill, and now has a a form of long covid less debilitating than yours. In your research, do you know of studies examining relationships of various covid vaccines, people succumbing (or not) to covid, and long covid? Add to that, I have also read, and cannot remember where, that covid may accelerate the spread of some cancers. Also, I recall reading a recommendation from Moderna about a year or more into vaccine administration their suggestion of reduced dosing for women b/c of women having more severe reactions to the vaccine. I have searched PubMed several times and come up with nothing. My very best wishes to you.
This is an excellent article. Thank you.
Thank you for writing this. Your advocacy is appreciated! I developed Long Covid (primarily ME/CFS, dysautonomia, and POTS) in 2024 that left me bedbound for months. I am forever thankful to the multidisciplinary team at the UNC Chapel Hill Long Covid Clinic (now closed due to lack of funding) for helping me, and I encourage you to keep seeking effective and compassionate care. You deserve a medical team that sees you and supports you. We can heal, please do not give up.
Thank you for this essay, and sending best wishes to you. You and other readers may be interested in this impressive piece about long covid by artist Angela Bandurka, which really helps to communicate the experience:
Angela explaning her Long Covid Journal: https://www.facebook.com/share/v/1FdmgN6kpW/?mibextid=wwXIfr
https://www.blurb.com/b/12012381-long-covid-journal?fbclid=IwVERDUAQnoFtmZGlkFlAyl8jtqqS_wC-ApAzHgEIHsZxyMHBleHRuA2FlbQIxMABzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEegV9DX86hVn7N8Hcoey0HcMS21hy2QAdgjwoVCdO2k6SMNGBDQfNqnR5AVIY_aem_Jfz48ccoEuTCqG8FaKQ4aA
I am sorry for your pain and the ways health care providers have regarded your troubles. I’ve had Lyme disease several times (dang yard work) and have many of the same kinds of symptoms you discuss in your excellent article. I’m looking for some action in that health area too. Some state health agencies do better than other state’s. Now I get to blame some of my woes on old age :). Good luck.
Megan Armstrong, I hope you’ve found Eric Topol and his research at Scrips in California. I am grateful you felt you could write about your illness.