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conulyCovid Survivors With Long-Term Symptoms Need Urgent Attention, Experts Say
1. I have dealt with chronic symptoms following an infection and have been blown off, ridiculed, victim-blamed, told I’m lazy, sent for mental evaluation, and all manner of other offensive treatment by medical professionals. It disgusts me to see doctors saying they have never seen anything like this before. They have, and they couldn’t be bothered to help, and they passed the buck to a shrink. I hope more than anything that these long haul Covid patients never have to suffer what people who have preceded them in the chronic illness community have suffered, but I also hope that this finally makes doctors wake up to the millions of people who have already been suffering silently with nearly identical symptoms for decades.
2. When I was 17 years old in 1972, I developed a "drop-dead" flu and was unable to finish my junior year in high school. I recovered from the acute phase of influenza but for months afterwards was so fatigued that I could barely do anything. My joints hurt and even at that young age, I felt the brain fog. My poor mother and I made the rounds of doctors who dismissed my symptoms until I finally saw a pediatric infectious disease specialist at the Cleveland Clinic...a man ahead of his time, who diagnosed me with post influenza syndrome. Sound familiar? Because of my young age at the time, I recovered, but for years afterwards I was terrified every time I got the flu. I am 65 years old now and that experience stayed with me to the point that I am more worried about the long-term effects of COVID than the acute illness. My heart goes out to everyone suffering with this mysterious syndrome and to all those who suffer from CFS and fibromyalgia which I am certain all fall under the same umbrella of post viral illnesses.
3. Let "post-polio syndrome" be a warning. Polio is also an RNA virus causing serious acute health problems, even death, in some people - but most recovered. Now we have a vaccine for polio and its has been all but eradicated.
Decades later many "recovered" people began developing pain, fatigue, breathing problems and other debilitating symptoms. It will be decades before we have the full understanding of how bad it is to have been infected with Covid-19. People like "Dr" Rand Paul and "Dr" Atlas, who advocate getting infected should be arrested and prosecuted for attempted murder. At a minimum sue them before they manage to pass a law protecting themselves from being liable for their murderous speech.
4. Those with ME/CFS (myalgic encephalomyelitis) have long been dismissed as creating or exaggerating their symptoms, despite the science. I'm hopeful the spotlight on COVID long-haulers will help other similar "invisible" diseases also get the attention, funding and research they require. Clearly there are underlying viral outbreaks we have ignored that have widespread impact on people of all ages, causing folks to severely curtail their quality of life. Long-haulers are following a number of canaries in the coal mine that were not taken seriously.
5. This ISN'T a new thing . ANYONE who goes through a serious viral or bacterial invasion can develop these chronic debilitating health issues. I have all those symptoms plus a sleep disorder where I get only 1 episode of REM for every 6 hrs sleep , which is untreatable. Look in a year ; many of these "long haulers" will go from having joint pain to full fibromyalgia or some sort of CRPS. PICS (ptsd induced by ICU stay or just a very long stay in the hospital) is also a recognized issue. After surviving necrotizing fasciitis (flesh eating bacteria) 4 years ago my whole body it seems is still trying to kill me. The issue with ones teeth , I have that too , half have been pulled now. I could have pulled them out just with my own fingers while I was hospitalized. It makes me so upset that these issues are being talked about now ONLY in relation to some COVID survivors. I'm glad the public is being exposed to the difficulties people who survive a severe bacteria or virus face , but don't leave me or others like me out of the discussion.
6. Look into Dysautonomia/POTS, which can be brought on by viral infection. Doctors who have been brushing this aside as "all in your head" for years are now seeing that this is a very real and very debilitating condition that, in many instances, can't be cured. Symptoms can be treated to help lead a somewhat "normal" life but people won't ever be the same.
There's a host of other comments along that same vein. It's... a little infuriating to read, honestly.
1. I have dealt with chronic symptoms following an infection and have been blown off, ridiculed, victim-blamed, told I’m lazy, sent for mental evaluation, and all manner of other offensive treatment by medical professionals. It disgusts me to see doctors saying they have never seen anything like this before. They have, and they couldn’t be bothered to help, and they passed the buck to a shrink. I hope more than anything that these long haul Covid patients never have to suffer what people who have preceded them in the chronic illness community have suffered, but I also hope that this finally makes doctors wake up to the millions of people who have already been suffering silently with nearly identical symptoms for decades.
2. When I was 17 years old in 1972, I developed a "drop-dead" flu and was unable to finish my junior year in high school. I recovered from the acute phase of influenza but for months afterwards was so fatigued that I could barely do anything. My joints hurt and even at that young age, I felt the brain fog. My poor mother and I made the rounds of doctors who dismissed my symptoms until I finally saw a pediatric infectious disease specialist at the Cleveland Clinic...a man ahead of his time, who diagnosed me with post influenza syndrome. Sound familiar? Because of my young age at the time, I recovered, but for years afterwards I was terrified every time I got the flu. I am 65 years old now and that experience stayed with me to the point that I am more worried about the long-term effects of COVID than the acute illness. My heart goes out to everyone suffering with this mysterious syndrome and to all those who suffer from CFS and fibromyalgia which I am certain all fall under the same umbrella of post viral illnesses.
3. Let "post-polio syndrome" be a warning. Polio is also an RNA virus causing serious acute health problems, even death, in some people - but most recovered. Now we have a vaccine for polio and its has been all but eradicated.
Decades later many "recovered" people began developing pain, fatigue, breathing problems and other debilitating symptoms. It will be decades before we have the full understanding of how bad it is to have been infected with Covid-19. People like "Dr" Rand Paul and "Dr" Atlas, who advocate getting infected should be arrested and prosecuted for attempted murder. At a minimum sue them before they manage to pass a law protecting themselves from being liable for their murderous speech.
4. Those with ME/CFS (myalgic encephalomyelitis) have long been dismissed as creating or exaggerating their symptoms, despite the science. I'm hopeful the spotlight on COVID long-haulers will help other similar "invisible" diseases also get the attention, funding and research they require. Clearly there are underlying viral outbreaks we have ignored that have widespread impact on people of all ages, causing folks to severely curtail their quality of life. Long-haulers are following a number of canaries in the coal mine that were not taken seriously.
5. This ISN'T a new thing . ANYONE who goes through a serious viral or bacterial invasion can develop these chronic debilitating health issues. I have all those symptoms plus a sleep disorder where I get only 1 episode of REM for every 6 hrs sleep , which is untreatable. Look in a year ; many of these "long haulers" will go from having joint pain to full fibromyalgia or some sort of CRPS. PICS (ptsd induced by ICU stay or just a very long stay in the hospital) is also a recognized issue. After surviving necrotizing fasciitis (flesh eating bacteria) 4 years ago my whole body it seems is still trying to kill me. The issue with ones teeth , I have that too , half have been pulled now. I could have pulled them out just with my own fingers while I was hospitalized. It makes me so upset that these issues are being talked about now ONLY in relation to some COVID survivors. I'm glad the public is being exposed to the difficulties people who survive a severe bacteria or virus face , but don't leave me or others like me out of the discussion.
6. Look into Dysautonomia/POTS, which can be brought on by viral infection. Doctors who have been brushing this aside as "all in your head" for years are now seeing that this is a very real and very debilitating condition that, in many instances, can't be cured. Symptoms can be treated to help lead a somewhat "normal" life but people won't ever be the same.
There's a host of other comments along that same vein. It's... a little infuriating to read, honestly.
no subject
Date: 2020-12-09 08:38 pm (UTC)I *suspect* the only reason "long covid" is even *getting* the attention these days is because a lot of the MEN are getting hit with this - because a large portion of patients ARE men.
"Oh shit, dudes get this? Well, this is SRS BZNS now!"
*/cynical grump*
no subject
Date: 2020-12-09 11:10 pm (UTC)no subject
Date: 2020-12-10 12:28 am (UTC)My diagnoses: Congenital heart disease, eosinophilic gastroenteritis, PCOS, migraines, and "we don't know" but it's obviously painful and chronic. (Silent screaming)
no subject
Date: 2020-12-10 03:09 am (UTC)BTW, as a book lover, I love your journal name. :)