I'm posting this mostly to draw attention to some specific comments

[conuly]

Covid 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.

Comments

[thawrecka]

A friend of mine developed Chronic Fatigue and a series of allergies after a bad case of mono, and while her doctors didn't dismiss her symptoms, her employers did dismiss the idea that they should accommodate for her disability (even though she works for disability services). Covid lockdown was literally the first time they let her work from home long term.

[sabotabby]

This scares the shit out of me and one of the reasons I'm so enraged that our politicians (with an assist from medical officials, school boards, and the complicity of many teachers as well as our unions) decided to mass-infect the children here. We don't know what it'll do to them down the road. As someone who got a weird tumour seven years ago and never fully recovered, even though I recovered sufficiently to be deemed a functional work-unit, I just feel like people don't get the stakes of chronic illness.

[fred_mouse]

As a post-influenza (type illness) chronic fatigue person, it is great that there is more awareness, but argh. There is such societal pressure to 'recover', that on good days it is so hard to believe how bad it can be, and one starts to gaslight oneself. There are going to be so many people trying to 'return to normal' and then burning out some years down the road who won't be recognised as post-covid.

[oracne]

Listening and learning. And angry all over again about the poor state of medical care in this country.

[the_siobhan]

A friend of mine is suffering from post-viral syndrome. She caught Covid back in early March, before our first lock-down and she still hasn't recovered fully.

I've been saying for a while we shouldn't be comparing this virus to the flu, we should be comparing it to polio. I'm old enough to have known some polio survivors and people who lost family members to the disease. Maybe then people would take it more seriously. (Or maybe not? Who the fuck knows with these assholes.)

[thewayne]

I have two friends with fibro, yeah, nasty stuff. One had to do a medical retirement before she hit 40! It was kind of funny: her employer insisted she get and pay for disability insurance, and she finally did. Then when she needed it and filed it, they didn't want to pay. She got quite the settlement out of them when the lawsuit cleared.

A friend of mine and his wife got COVID in early November. She was asymptomatic, he got pretty sick and recovered. And immediately went back to work. I was shocked. And apparently he found out that there are longer-term consequences to COVID and I think he ended back home.

Your fever being gone and you feeling better doesn't mean you're fully recovered and can go back to driving a pickup/delivery van through Phoenix traffic!

[conuly]

*hugs*

[conuly]

I hope your friend eventually has a full long-term recovery and doesn't end up Friend 3 with chronic illness.

[conuly]

It's not until their grandma dies or their spouse gets sick that they remember to care.

[conuly]

Well, that's sure shitty of those employers.

[gatheringrivers]

I know someone with post-polio (is at least partly in a wheelchair these days) and a few people with fibro. OMG the (fully justified!) bitching about doctors who don't listen...

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*

[greghousesgf]

I'm sorry anyone has to deal with doctors who are dismissive dickheads.

[alexseanchai]

wouldn't be surprised 🙁

[librarygeek]

I think you've got the bullseye, noticing that gender bias about long term medical needs.

My diagnoses: Congenital heart disease, eosinophilic gastroenteritis, PCOS, migraines, and "we don't know" but it's obviously painful and chronic. (Silent screaming)

[gatheringrivers]

Another friend elsewhere just got diagnosed with some level of thyroid problem (waiting for next round of tests to figure out which one) with her chronic pain, I don't know if they've tested that for you or not; if they haven't, it might be worth a look.

BTW, as a book lover, I love your journal name. :)

[bibliofile]

Oh FFS! Gah.

Also, thank you conuly for posting these comments. Important conversations, these are.

[conuly]

I want to email them to every asshat doctor who thinks the answer to "I don't know what this is and can't cure it" is "it's the patient's fault, obviously it's not real".

[silveradept]

We can only guess about what the long-term consequences of this will be, and yet we have people declaring that the best thing to do is get it. Even if it's only a small percentage of people who are long-haulers, that still means it's a lot of people in unnecessary pain and suffering and being told by people who aren't going to cure them that it's their fault or they're difficult or annoying or some other thing other than "we're going to keep trying on this until we know what it is and we've got it beaten."

[dandelion.livejournal.com]

My other concern is that everything will be put down to long Covid, when there are treatable causes of the same symptoms.

[conuly]

When doctors do treat them, which it seems from the comments they often don't.

[dandelion.livejournal.com]

Yup. To be fair, true chronic fatigue syndrome has no known good treatments so it is not easy for doctors to provide much to help, but that in itself is a failure that needs addressing.

Chronic fatigue syndrome is a diagnosis of exclusion - but good luck being sure they've excluded the right things. I am aware of acquaintances with thyroid disorders, vitamin b12 deficiency, specific sleep disorders, etc, that were all once mistakenly labelled as CFS. And once you're stuck with a label like chronic fatigue syndrome it is nearly impossible to convince people to keep looking. That's my concern with long Covid - because it will be very very easy for people to say "well, you did have Covid". And I'm not sure what treatments for long Covid will look like, based on the lack of stuff for CFS or post-viral fatigue or post-influenza illness.