S.F. Millennial was fit and healthy before COVID-19. He’s a disabled ‘long-hauler’ now.

[Tristan Loscha]

Is there evidence in radiological findings to be had? Is the fibrosis staying visible? I'm not sure why in a health-related forum it is so mindblowing that a viral disease with chronicity and persistence in signs and symptoms exists? Is Peat still of the same opinion, or did he changed his stance on that. There is a lung disease going on, the PCR testing is indeed problematic, but clinical empiricism is also a very valid mechanism for analysis, and that the rate of this type of syndrome increased, and causes persistence, is witnessed and plausible.

 

[freyasam]

Sounds like textbook ME/CFS with a viral onset. it can be brought on by many different viruses. If public health agencies and medical professionals hadn't been ignoring the millions of us with this disease for decades, they would know more about it by now.

 

[LucyL]

But you know what's even MORE inaccurate? Eyeballing a patient and diagnosing him or her with a "novel virus," either without a test. Or with a test that says he doesn't have that virus. Or MULTIPLE tests that says he doesn't have that virus.

I think this is the foundation. If you diagnose a patient with a "novel virus" you exempt yourself from all culpability for their health, because how could you be expected to know how to treat a novel virus? It's just another glimpse into the absolutely stunning failure of modern day healthcare.

Like @freyasam said above.

 

[RealNeat]

Since anything besides context is hysteria if anyone can somehow convince this long hauler to take my proposed questionnaire Questionnaire For Those Experiencing COVID19 Symptoms we can decipher if his correlation is actually causation.

Also the oft overlooked secondary bacterial infections can last a long time if antibiotics aren't given.

 

[JDreamer]

Always love these types of anomalous/outlier articles used to scare everyone thinking it might happen to them - essentially distracting from the obvious data suggesting a near 99% recovery rate.

Really shows you how the human psyche tends to gravitate towards fear/doom.

 

[tankasnowgod]

I think this is the foundation. If you diagnose a patient with a "novel virus" you exempt yourself from all culpability for their health, because how could you be expected to know how to treat a novel virus? It's just another glimpse into the absolutely stunning failure of modern day healthcare.

Like @freyasam said above.

It's a very easy, and currently profitable, way out. Docotrs and hospitals get more money if they diagnose something as "Covid." There is pressure on doctors to put COVID down from places they work for, and from governments as well.

 

[tankasnowgod]

Always love these types of anomalous/outlier articles used to scare everyone thinking it might happen to them - essentially distracting from the obvious data suggesting a near 99% recovery rate.

Really shows you how the human psyche tends to gravitate towards fear/doom.

This isn't new, though. Rare ailments are often featured in the media. When studying Iron Overload, I saw the case of Aran Gordon-



That clip is from a show called "Mystery Diagnosis."

The show ran for 10 seasons with 99 episodes. So stories like the one in the OP, are very rare in a person's life or among their acquaintances, but very common when you look at the population as a whole.

It's clear the patient's doctor took the easy way out, going along with the propaganda in the news media, rather than doing any sort of work that would qualify as good medicine.

 

[lvysaur]

There is a lung disease going on, the PCR testing is indeed problematic

It's not exactly a lung disease, it's more of a systemic disease that expresses as pulmonary in some people.

 

[Perry Staltic]

I'm starting to think long covid has turned into a cult religion for some people. It gives them a way to act out their mental illness by blaming others for their problems. Check out this twitter feed. The constant theme is hating others for not keeping them safe and blaming them for whatever problems they think they have. I personally would not even conceive of thinking like this; if I got sick, I would blame myself. Click on 3:13 PM · Dec 21, 2020 below to read full thread.

 

[JDreamer]

I'm starting to think long covid has turned into a cult religion for some people. It gives them a way to act out their mental illness by blaming others for their problems. Check out this twitter feed. The constant theme is hating others for not keeping them safe and blaming them for whatever problems they think they have. I personally would not even conceive of thinking like this; if I got sick, I would blame myself. Click on 3:13 PM · Dec 21, 2020 below to read full thread.

It really has.

They are mentally/emotionally married to it and view their entire world thru that lense right now. So if they're still experiencing some random/general symptom they can immediately reference the long hauler articles they're being bombarded with and blame it on COVID. It's highly likely the individual is simply not taking good care of themselves because let's be honest - health experts are not teaching that.

 

[Perry Staltic]

I'm starting to think long covid has turned into a cult religion for some people. It gives them a way to act out their mental illness by blaming others for their problems. Check out this twitter feed. The constant theme is hating others for not keeping them safe and blaming them for whatever problems they think they have. I personally would not even conceive of thinking like this; if I got sick, I would blame myself. Click on 3:13 PM · Dec 21, 2020 below to read full thread.

This is actually a comment in the link above. I can't tell if it's real or sarcasm.

We are getting more people saved and discipled this year... Yassss!! You know this means you have to get more involved with people ba? It means entering DMs, checking up on old and new friends and generally being more available and friendly.

 

[Perry Staltic]

I don't have a twitter account, but if I did I'd be tempted to post a comment on that thread saying I found a cure for long covid, and post a link to the Outstanding stack for higher libido (and bigger balls) thread just because it sounds funny.

 

[Drareg]

Here is an extremely interesting and novel take:

Are Geophysics Dramatically Changing COVID19 Outcomes in Some Locations? We May Find Out the Hard Way March 2021.

It also explains why the COVID could be seen as a NAD+ deficiency, and why supplementing with niacinamide and NAD cofactors has cured many long haulers.

Thanks for this, it is worth a thread, very interesting speculation.

 

[Drareg]

The guy has something now to feel relevant and important after the shutdown ruined his former life. It's all about him and long covid now.

https://twitter.com/loscharlos

The market for self promotion around the covid19 narrative is huge, covid19 influencers are all the rage.

 

[Drareg]

I'm starting to think long covid has turned into a cult religion for some people. It gives them a way to act out their mental illness by blaming others for their problems. Check out this twitter feed. The constant theme is hating others for not keeping them safe and blaming them for whatever problems they think they have. I personally would not even conceive of thinking like this; if I got sick, I would blame myself. Click on 3:13 PM · Dec 21, 2020 below to read full thread.

Spot on, many folks burnout in their early 30’s, unmet expectations in life, the usual expectation is not being a multi millionaire for just being you and being great, it’s like the manic self promoting brigade who listen to Tony Robbins or the visualize and manifest cult.
In reality they spent most of their time watching 4 hours of reality TV every evening, now in your 30’s the chickens are coming home to roost and an excuse is needed.

People should work extremely hard in their 20’s and build skills/ability, this will pay off in your 30’s and "sabbaticals" can be taken if needed throughout your 30’s.

 

[S-VV]

It's a clear cut case of ME/CFS probably with POTS, precipitated by some virus and predisposed by a high stress lifestyle.

The guys life is crumbling around him, understandable that he would have breakdowns. I hope he finds a competent doctor that can prescribe symptomatic treatment so that he can have a semi-normal life.

 

[Angel45]

Twilight at Spreckels Lake in Golden Gate Park couldn’t be quieter. Senior citizens chat on benches or circle the lake, canes in hand. Toddlers feed the ducks. And Charlie McCone, on a good day, tries to walk around the tiny lake once.

“It feels like I’m an 80-year-old in not great health,” McCone said as we slowly looped around the lake.

But he’s only 31. A year ago, McCone bicycled 10 miles round trip to his South of Market marketing job at the San Francisco Parks Alliance. He played tennis, soccer and volleyball. He managed the local indie pop band, the French Cassettes. He and his girlfriend socialized a lot — dining out, hitting bars, hiking — and talked about getting married.

And then March 16 hit. And McCone got very sick. He developed chest pain and extreme fatigue. He couldn’t take a deep breath. His lips turned blue. He could barely get out of bed.

“There were definitely nights where I was scared to go to sleep,” he recalled.

He couldn’t get a coronavirus test from Kaiser which, like many health providers, wasn’t testing people at the start of the pandemic unless they were hospitalized, had traveled to countries where the virus was prevalent or had come into close contact with someone who had tested positive for the virus.

By the time he got tested a month later, the result was negative. An antibody test three months after his initial symptoms also came back negative, but he showed me his Kaiser health summary in which his doctor explained that antibody tests are often inaccurate and that he probably did have COVID-19. The symptoms and timing match up. And numerous Kaiser specialists and tests haven’t found anything else to explain his sudden debilitation.


It seems he’s part of a small, but growing, club that nobody would ever want to join. They’re called the COVID-19 “long-haulers,” which means their symptoms linger for weeks or months. Many, like McCone, still aren’t better 10 months later.

As we whipsaw between one fresh horror after another — A pandemic! A terribly slow vaccine rollout! An attempted coup at the U.S. Capitol! A deranged president! — it can be hard to stay focused on avoiding the virus ourselves. Ten months into this misery, many of us are tired of holing up at home. Many young adults in particular are socializing because, chances are, they’ll recover just fine if they get the virus.

But maybe they won’t. Maybe they’ll wind up like McCone, their lives and hopes damaged.

“I don’t think the public is well informed around this possible outcome, and I think if they were, younger folks might exercise more caution and prudence,” he said. “This is just not being well-articulated enough.”

And that’s why he laid out in such detail what life as a long-hauler is really like.

He describes the feeling as carrying a 50-pound backpack at all times — while having a weight on his chest and a bad hangover. Sometimes, just walking to the kitchen elevates his heart rate to 140 beats per minute. He has a hard time talking or staying in any one position for long. He can barely work and is considering quitting the job he loves to go on disability.

He lives in the Outer Sunset just a couple of blocks from Golden Gate Park, but can only get to Spreckels Lake for his walks by driving — something he never would have done before. That’s often his only venture out of the house all day. He hasn’t ridden his beloved bicycle since he got sick. He can’t run.

He said he’s had some nervous breakdowns, pulling his hair out and crying. He and his girlfriend, Katie Purtill, have gone from talking about long-term plans to just getting through the day as patient and caretaker.

Purtill said it’s exhausting caring for McCone, doing all the housework, keeping up with her own job and waiting for a breakthrough that never seems to come.

“There’s no fun part,” she said. “Probably the only enjoyable part of our day is watching Netflix together. I feel like we’re living our senior years now.”

They live together, but haven’t exchanged vows. So what does the future hold?

“I really don’t know,” she said. “That’s the elephant in the room with all this. I love him, and he’s my best friend. I don’t go there too much because if I do, it’s definitely a lot to process.”

McCone said he feels awful that Purtill is shouldering so much on her own. But he doesn’t want anyone else entering their home for fear of reinfection, and he doesn’t have the energy to interact much with others.

“It’s a lot of, ‘How are you doing? Are you better?’ It’s hard to keep saying the same thing which is, ‘Not so good,’” he said.

He hasn’t even seen his mom, Carolyn, in nearly a year because he doesn’t want her driving from her home in the foothills to San Francisco and risk getting sick. But they talk on the phone all the time. She can’t quite believe her son — the very healthy, straight-A student who got a black belt in tae kwon do when he was 10 — can barely function.

“He was always this superachiever, and now his life has just been put on hold,” she said. “I wish they could just give him answers. That’s the worst part. He just doesn’t understand.”

McCone worries that with the current surge, even more people will be left with long-term symptoms of COVID-19 — and there will still be few answers. Several clinics have opened around the country to study and treat long-haulers, including one in October at UC Davis, but McCone hasn’t been able to get a referral from Kaiser to see a doctor outside its system.

Kaiser didn’t respond to a request for comment.

Dr. Michael Peluso, an infectious disease doctor at UCSF, is running a study tracking people after they have COVID-19 — and he said the long-hauler phenomenon is real, little understood and a major problem for patients and the health care system. There’s little good data about how common it is or when and if people can expect to recover.

“Even if only 1% of people develop persistent symptoms after their infections, it’s still a huge absolute number of people,” he said. “This is not a problem that can be ignored.”

With more than 21 million infections across the U.S., even just 1% would mean 210,000 people potentially with the syndrome. And there could be many more.

Peluso said doctors at the beginning of the pandemic were categorizing patients into two categories: those who survived and those who died. But Peluso said there are many in the “survived” category whose lives have been hugely changed for the worse.

As many as half of people who develop COVID-19 have at least one persistent symptom one to three months later, he said. And there are many previously healthy people like McCone who had mild enough symptoms to avoid hospitalization, but remain sick for much longer.

“The fact that so many people who are experiencing this issue are telling their stories has made the medical community and the scientific community start to take this really seriously, as we should,” Peluso said. “It’s a tough problem. It’s upsetting.”

McCone and I finished our walk around Spreckels Lake in 10 minutes. That was enough for him. He was tired and winded. He climbed back in his car to drive home. Maybe tomorrow would be a better day.

S.F. Millennial was fit and healthy before COVID-19. He’s a disabled ‘long-hauler’ now

Charlie McCone had it all: a great job, an active social life, perfect health, wedding...

www.sfchronicle.com

Hahahaaaaaaaaaahahghghahahaaaaaaaaaahghhghahahaaaa I can't!

 

[Mito]

Congress recently allocated $1.15 billion to the NIH to study post-acute COVID syndrome.

 

[Tarmander]

I was expecting to read "up until this point, his health was immaculate. He got his flu shot every year, ate low fat, and kept an eye on his cholesterol."

In all seriousness though, he should get on this forum and start digging himself out

 

[Perry Staltic]

Congress recently allocated $1.15 billion to the NIH to study post-acute COVID syndrome.

That guarantees that they'll never figure it out.