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Are you worried about the Coronavirus?

TooPatient

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DH's Dr has redeemed himself. He wanted to see DH officially before doing any paperwork. We did a virtual visit which didn't allow him to run the tests he wanted, but did get him enough information to form a plan and let us know that we could get in despite his symptoms. (Plus assurances that the desk could call his office if they didn't want to let us both through.) That was Wednesday. Thursday we went in person. He agrees DH is very much not well and wants to find out why and see what we can do to help. He poked, prodded, and listened before moving forward with the plan he made after the virtual visit.

EKG is normal.
Spirometer was barely registering no matter how hard DH tried.
Chest x-rays taken.
Blood work to check for inflammation, heart failure markers, and a dozen other things.

A steroid inhaler will be in tomorrow. Going to try that and reevaluate Tuesday. May need to go to oral steroids if that doesn't do the job. Should have test results for everything within the next few days at the latest. Orders to stay off work plus agreement to fill out any forms needed for insurance, HR, etc.

His current thinking is that this may very well have been COVID-19 that is now resolved but left severe lung inflammation behind. He got more specific in medical terms, but I am tired and had too much to really keep all the terms straight.


If this is a routine outcome, then COVID-19 really is nothing to mess with!
 

missy

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DH's Dr has redeemed himself. He wanted to see DH officially before doing any paperwork. We did a virtual visit which didn't allow him to run the tests he wanted, but did get him enough information to form a plan and let us know that we could get in despite his symptoms. (Plus assurances that the desk could call his office if they didn't want to let us both through.) That was Wednesday. Thursday we went in person. He agrees DH is very much not well and wants to find out why and see what we can do to help. He poked, prodded, and listened before moving forward with the plan he made after the virtual visit.

EKG is normal.
Spirometer was barely registering no matter how hard DH tried.
Chest x-rays taken.
Blood work to check for inflammation, heart failure markers, and a dozen other things.

A steroid inhaler will be in tomorrow. Going to try that and reevaluate Tuesday. May need to go to oral steroids if that doesn't do the job. Should have test results for everything within the next few days at the latest. Orders to stay off work plus agreement to fill out any forms needed for insurance, HR, etc.

His current thinking is that this may very well have been COVID-19 that is now resolved but left severe lung inflammation behind. He got more specific in medical terms, but I am tired and had too much to really keep all the terms straight.


If this is a routine outcome, then COVID-19 really is nothing to mess with!
@TooPatient continued good thoughts and healing wishes being sent to B and to you as well. I hope the lung inflammation resolves and he starts feeling much better very soon! I am glad his doctor has redeemed himself and now I hope he can help B get all better!
 

Matata

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AGBF

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@TooPatient I am very happy and relieved for you and your husband. The news sounds very, very good (coincidentally because the doctor found out your husband's health had actually been very, very bad as you had claimed!).

@Matata, I do keep hearing more and more about blood clots and kidneys. I am at risk for both so I surely perk up and take notice! Thanks for all the updates.
 

Arcadian

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My niece has it. One of her kids has it. they're at home, feeling crummy but doing OK. 2 of the other kids show no symptoms. (one that we were most worried about has sickle cell and she's showing no symptoms)
 

AGBF

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All the best to you and your family, Arcadian. Please keep us updated. This virus can sometimes turn vicious suddenly. It scares me a lot. Prayers outgoing.

Deb
 

missy

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Sent to me by a friend.
Viewpoint from a cardiologist at UW, Dr James Stein.

COVID-19 update as we start to leave our cocoons. The purpose of this post is to provide a perspective on the intense but expected anxiety so many people are experiencing as they prepare to leave the shelter of their homes. My opinions are not those of my employers and are not meant to invalidate anyone else’s – they simply are my perspective on managing risk.

In March, we did not know much about COVID-19 other than the incredibly scary news reports from overrun hospitals in China, Italy, and other parts of Europe. The media was filled with scary pictures of chest CT scans, personal stories of people who decompensated quickly with shortness of breath, overwhelmed health care systems, and deaths. We heard confusing and widely varying estimates for risk of getting infected and of dying – some estimates were quite high.

Key point #1: The COVID-19 we are facing now is the same disease it was 2 months ago. The “shelter at home” orders were the right step from a public health standpoint to make sure we flattened the curve and didn’t overrun the health care system which would have led to excess preventable deaths. It also bought us time to learn about the disease’s dynamics, preventive measures, and best treatment strategies – and we did. For hospitalized patients, we have learned to avoid early intubation, to use prone ventilation, and that remdesivir probably reduces time to recovery. We have learned how to best use and preserve PPE. We also know that several therapies suggested early on probably don’t do much and may even cause harm (ie, azithromycin, chloroquine, hydroxychloroquine, lopinavir/ritonavir). But all of our social distancing did not change the disease. Take home: We flattened the curve and with it our economy and psyches, but the disease itself is still here.

Key point #2: COVID-19 is more deadly than seasonal influenza (about 5-10x so), but not nearly as deadly as Ebola, Rabies, or Marburg Hemorrhagic Fever where 25-90% of people who get infected die. COVID-19’s case fatality rate is about 0.8-1.5% overall, but much higher if you are 60-69 years old (3-4%), 70-79 years old (7-9%), and especially so if you are over 80 years old (CFR 13-17%). It is much lower if you are under 50 years old (<0.6%). The infection fatality rate is about half of these numbers. Take home: COVID-19 is dangerous, but the vast majority of people who get it, survive it. About 15% of people get very ill and could stay ill for a long time. We are going to be dealing with it for a long time.

Key point #3: SARS-CoV-2 is very contagious, but not as contagious as Measles, Mumps, or even certain strains of pandemic Influenza. It is spread by respiratory droplets and aerosols, not food and incidental contact. Take home: social distancing, not touching our faces, and good hand hygiene are the key weapons to stop the spread. Masks could make a difference, too, especially in public places where people congregate. Incidental contact is not really an issue, nor is food.

What does this all mean as we return to work and public life? COVID-19 is not going away anytime soon. It may not go away for a year or two and may not be eradicated for many years, so we have to learn to live with it and do what we can to mitigate (reduce) risk. That means being willing to accept *some* level of risk to live our lives as we desire. I can’t decide that level of risk for you – only you can make that decision. There are few certainties in pandemic risk management other than that fact that some people will die, some people in low risk groups will die, and some people in high risk groups will survive. It’s about probability.

Here is some guidance – my point of view, not judging yours:

1. People over 60 years old are at higher risk of severe disease – people over 70 years old, even more so. They should be willing to tolerate less risk than people under 50 years old and should be extra careful. Some chronic diseases like heart disease and COPD increase risk, but it is not clear if other diseases like obesity, asthma, immune disorders, etc. increase risk appreciably. It looks like asthma and inflammatory bowel disease might not be as high risk as we thought, but we are not sure - their risks might be too small to pick up, or they might be associated with things that put them at higher risk.

People over 60-70 years old probably should continue to be very vigilant about limiting exposures if they can. However, not seeing family – especially children and grandchildren – can take a serious emotional toll, so I encourage people to be creative and flexible. For example, in-person visits are not crazy – consider one, especially if you have been isolated and have no symptoms. They are especially safe in the early days after restrictions are lifted in places like Madison or parts of major cities where there is very little community transmission. Families can decide how much mingling they are comfortable with - if they want to hug and eat together, distance together with masks, or just stay apart and continue using video-conferencing and the telephone to stay in contact. If you choose to intermingle, remember to practice good hand hygiene, don’t share plates/forks/spoons/cups, don’t share towels, and don’t sleep together.

2. Social distancing, not touching your face, and washing/sanitizing your hands are the key prevention interventions. They are vastly more important than anything else you do. Wearing a fabric mask is a good idea in crowded public place like a grocery store or public transportation, but you absolutely must distance, practice good hand hygiene, and don’t touch your face. Wearing gloves is not helpful (the virus does not get in through the skin) and may increase your risk because you likely won’t washing or sanitize your hands when they are on, you will drop things, and touch your face.

3. Be a good citizen. If you think you might be sick, stay home. If you are going to cough or sneeze, turn away from people, block it, and sanitize your hands immediately after.

4. Use common sense. Dial down the anxiety. If you are out taking a walk and someone walks past you, that brief (near) contact is so low risk that it doesn’t make sense to get scared. Smile at them as they approach, turn your head away as they pass, move on. The smile will be more therapeutic than the passing is dangerous. Similarly, if someone bumps into you at the grocery store or reaches past you for a loaf of bread, don’t stress - it is a very low risk encounter, also - as long as they didn’t cough or sneeze in your face (one reason we wear cloth masks in public!).

5. Use common sense, part II. Dial down the obsessiveness. There really is no reason to go crazy sanitizing items that come into your house from outside, like groceries and packages. For it to be a risk, the delivery person would need to be infectious, cough or sneeze some droplets on your package, you touch the droplet, then touch your face, and then it invades your respiratory epithelium. There would need to be enough viral load and the virions would need to survive long enough for you to get infected. It could happen, but it’s pretty unlikely. If you want to have a staging station for 1-2 days before you put things away, sure, no problem. You also can simply wipe things off before they come in to your house - that is fine is fine too. For an isolated family, it makes no sense to obsessively wipe down every surface every day (or several times a day). Door knobs, toilet handles, commonly trafficked light switches could get a wipe off each day, but it takes a lot of time and emotional energy to do all those things and they have marginal benefits. We don’t need to create a sterile operating room-like living space. Compared to keeping your hands out of your mouth, good hand hygiene, and cleaning food before serving it, these behaviors might be more maladaptive than protective.

6. There are few absolutes, so please get comfortable accepting some calculated risks, otherwise you might be isolating yourself for a really, really long time. Figure out how you can be in public and interact with people without fear.

We are social creatures. We need each other. We will survive with and because of each other. Social distancing just means that we connect differently. Being afraid makes us contract and shut each other out. I hope we can fill that space created by fear and contraction with meaningful connections and learn to be less afraid of each of other.

 

OboeGal

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"....you might be isolating yourself for a really, really long time."
Yeah, I'm totally fine with that.

I can talk with people on the phone. I can talk with them on Skype. I can text or message them multiple ways. I can interact with people here and on social media. And then I can live to hug them another day, when there is either a vaccine or a treatment. Then I won't lose my husband and can still hug him and grow old with him. Then neither he nor I will be disabled by long-term effects of the virus. Then I won't lose my profession that I've worked so hard for since I was 12 due to lung fibrosis.

I'm in this for the long haul. Long-term picture, baby.

I find this doctor to be a bit more cavalier about risk than the research supports.
 

Matata

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I hope this accessible. It's an interesting and scary read. I've used up my free reads and can't post the article which deals with the long term effects of the virus.

 

TooPatient

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I hope this accessible. It's an interesting and scary read. I've used up my free reads and can't post the article which deals with the long term effects of the virus.

Awesome article!

DH is on day 97. Interesting information in there as it is exactly what we have been dealing with. I hadn't realized the likelihood of testing negative was increased a week after first symptoms. Very helpful information. Thanks for sharing here!
 

Austina

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Interesting read. Our PM, Boris Johnson still doesn’t look well, after having had and ’recovered’ from CV.
 

missy

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I hope this accessible. It's an interesting and scary read. I've used up my free reads and can't post the article which deals with the long term effects of the virus.

For those who cannot access it here it is. Copied and pasted.

COVID-19 Can Last for Several Months
The disease’s “long-haulers” have endured relentless waves of debilitating symptoms—and disbelief from doctors and friends.
Calendars and coronavirus particles

Getty / Paul Spella / The Atlantic


For vonny leclerc, day one was March 16.

Hours after British Prime Minister Boris Johnson instated stringent social-distancing measures to halt the SARS-CoV-2 coronavirus, LeClerc, a Glasgow-based journalist, arrived home feeling shivery and flushed. Over the next few days, she developed a cough, chest pain, aching joints, and a prickling sensation on her skin. After a week of bed rest, she started improving. But on day 12, every old symptom returned, amplified and with reinforcements: She spiked an intermittent fever, lost her sense of taste and smell, and struggled to breathe.

When I spoke with LeClerc on day 66, she was still experiencing waves of symptoms. “Before this, I was a fit, healthy 32-year-old,” she said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.” Despite her best efforts, LeClerc has not been able to get a test, but “every doctor I’ve spoken to says there’s no shadow of a doubt that this has been COVID,” she said. Today is day 80.


COVID-19 has existed for less than six months, and it is easy to forget how little we know about it. The standard view is that a minority of infected people, who are typically elderly or have preexisting health problems, end up in critical care, requiring oxygen or a ventilator. About 80 percent of infections, according to the World Health Organization, “are mild or asymptomatic,” and patients recover after two weeks, on average. Yet support groups on Slack and Facebook host thousands of people like LeClerc, who say they have been wrestling with serious COVID-19 symptoms for at least a month, if not two or three. Some call themselves “long-termers” or “long-haulers.”

Read: Why some people get sicker than others

I interviewed nine of them for this story, all of whom share commonalities. Most have never been admitted to an ICU or gone on a ventilator, so their cases technically count as “mild.” But their lives have nonetheless been flattened by relentless and rolling waves of symptoms that make it hard to concentrate, exercise, or perform simple physical tasks. Most are young. Most were previously fit and healthy. “It is mild relative to dying in a hospital, but this virus has ruined my life,” LeClerc said. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”

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A U.S. map shaded in with coronavirus particles
Even though the world is consumed by concern over COVID-19, the long-haulers have been largely left out of the narrative and excluded from the figures that define the pandemic. I can pull up an online dashboard that reveals the numbers of confirmed cases, hospitalizations, deaths, and recoveries—but LeClerc falls into none of those categories. She and others are trapped in a statistical limbo, uncounted and thus overlooked.


Some have been diagnosed through tests, while others, like LeClerc, have been told by their doctors that they almost certainly have COVID-19. Still, many long-haulers have faced disbelief from friends and medical professionals because they don’t conform to the typical profile of the disease. People have questioned how they could possibly be so sick for so long, or whether they’re just stressed or anxious. “It feels like no one understands,” said Chloe Kaplan from Washington, D.C., who works in education and is on day 78. “I don’t think people are aware of the middle ground, where it knocks you off your feet for weeks, and you neither die nor have a mild case.”

The notion that most cases are mild and brief bolsters the belief that only the sick and elderly need isolate themselves, and that everyone else can get infected and be done with it. “It establishes a framework in which ‘not hiding’ from the disease looks a manageable and sensible undertaking,” writes Felicity Callard, a geographer at the University of Glasgow, who is on day 77. As the pandemic discourse turns to talk of a second wave, long-haulers who are still grappling with the consequences of the first wave are frustrated. “I’ve been very concerned by friends and family who just aren’t taking this seriously because they think you’re either asymptomatic or dead,” said Hannah Davis, an artist from New York City, who is on day 71. “This middle ground has been hellish.”


Read: What will you do if you start coughing?

It “has been like nothing else on Earth,” said Paul Garner, who has previously endured dengue fever and malaria, and is currently on day 77 of COVID-19. Garner, an infectious-diseases professor at the Liverpool School of Tropical Medicine, leads a renowned organization that reviews scientific evidence on preventing and treating infections. He tested negative on day 63. He had waited to get a COVID-19 test partly to preserve them for health-care workers, and partly because, at one point, he thought he was going to die. “I knew I had the disease; it couldn’t have been anything else,” he told me. I asked him why he thought his symptoms had persisted. "I honestly don’t know," he said. "I don’t understand what’s happening in my body."

On march 17, a day after LeClerc came down with her first symptoms, SARS-CoV-2 sent Fiona Lowenstein to the hospital. Nine days later, after she was discharged, she started a Slack support group for people struggling with the disease. The group, which is affiliated with a wellness organization founded by Lowenstein called Body Politic, has been a haven for long-haulers. One channel for people whose symptoms have lasted longer than 30 days has more than 3,700 members.

“The group was a savior for me,” said Gina Assaf, a design consultant in Washington, D.C., who is now on day 77. She and other members with expertise in research and survey design have now sampled 640 people from the Body Politic group and beyond. Their report is neither representative nor peer-reviewed, but it provides a valuable snapshot of the long-hauler experience.


Of those surveyed, about three in five are between the ages of 30 and 49. About 56 percent have not been hospitalized, while another 38 percent have visited the ER but were not admitted. About a quarter have tested positive for COVID-19 and almost half have never been tested at all. Some became sick in mid-March, when their home countries were severely short on tests. (Most survey respondents live in the U.S. and the U.K.) Others were denied testing because their symptoms didn’t match the standard set. Angela Meriquez Vázquez, a children’s activist in Los Angeles, had gastrointestinal problems and lost her sense of smell, but because she didn’t have a cough and her fever hadn’t topped 100 degrees Fahrenheit, she didn’t meet L.A.’s testing criteria. By the time those criteria were loosened, Vázquez was on day 14. She got a test, and it came back negative. (She is now on day 69.)

A quarter of respondents in the Body Politic survey have tested negative, but that doesn’t mean they don’t have COVID-19. Diagnostic tests for SARS-CoV-2 miss infections up to 30 percent of the time, and these false negatives become more likely a week after a patient’s first symptoms appear. In the Body Politic survey, respondents with negative test results were tested a week after those with positive ones, on average, but the groups did not differ in their incidence of 60 different symptoms over time. Those matching patterns strongly suggest that those with negative tests are indeed dealing with the same disease. They also suggest that the true scope of the pandemic has been underestimated, not just because of the widespread lack of testing but because many people who are getting tested are receiving false negatives.


Read: Why the coronavirus is so confusing

COVID-19 affects many different organs—that much is now clear. But in March, when many long-haulers were first falling sick with gut, heart, and brain problems, the disease was still regarded as a mainly respiratory one. To date, the only neurological symptom that the Centers for Disease Control and Prevention lists in its COVID-19 description is a loss of taste or smell. But other neurological symptoms are common among the long-haulers who answered the Body Politic survey.

As many people reported “brain fogs” and concentration challenges as coughs or fevers. Some have experienced hallucinations, delirium, short-term memory loss, or strange vibrating sensations when they touch surfaces. Others are likely having problems with their sympathetic nervous system, which controls unconscious processes like heartbeats and breathing: They’ll be out of breath even when their oxygen level is normal, or experience what feel like heart attacks even though EKG readings and chest X-rays are clear. These symptoms wax, wane, and warp over time. “It really is a grab bag,” said Davis, who is a co-author of the Body Politic survey. “Every day you wake up and you might have a different symptom.”

It’s not clear why this happens. Akiko Iwasaki, an immunologist at Yale, offers three possibilities. Long-haulers might still harbor infectious virus in some reservoir organ, which is missed by tests that use nasal swabs. Or persistent fragments of viral genes, though not infectious, may still be triggering a violent immune overreaction, as if “you’re reacting to a ghost of a virus,” Iwasaki says. More likely, the virus is gone but the immune system, having been provoked by it, is stuck in a lingering overactive state.


It’s hard to distinguish between these hypotheses, because SARS-CoV-2 is new and because the aftermath of viral infections is poorly understood. Many diseases cause long-lasting symptoms, but these might go unnoticed as trends unless epidemics are especially large. “Nearly every single person with Ebola has some long-term chronic complication, from subtle to obviously debilitating,” says Craig Spencer of the Columbia University Medical Center, who caught the virus himself in 2014. Some of those persistent problems had been noted during early Ebola outbreaks, but weren’t widely appreciated until 28,600 people were infected in West Africa from 2013 to 2016.

The sheer scale of the COVID-19 pandemic, which reached more than 6 million confirmed cases worldwide in a matter of months, means that long-haulers are now finding one another in sufficient numbers to shape their own narrative.

As the pandemic continues, long-haulers are navigating a landscape of uncertainty and fear with a map whose landmarks don’t reflect their surroundings. If your symptoms last for longer than two weeks, for how long should you expect to be sick? If they differ from the official list, how do you know which ones are important? “I’m acutely aware of my body at all times of the day,” LeClerc told me. “It shrinks your entire world to an almost reptilian response to your surroundings.”

If you’re still symptomatic, could you conceivably infect someone else if you leave your home? Garner, the infectious disease expert, is confident that this far out, he’s not shedding live virus anymore. But Meg Hamilton, who is a nursing student in Odenton, Maryland—and, full disclosure, my sister-in-law—said that her local health department considered her to be contagious as long as she had a fever; she is on day 56, and has only had a few normal temperature readings. Davis said that she and her partner, who live in different apartments, talked through the risks and decided to reunite on day 59. Until then, she had been dealing with two months of COVID-19 alone.


The isolation of the pandemic has been hard enough for many healthy people. But it has exacerbated the foggy minds, intense fatigue, and perpetual fear of erratic symptoms that long-haulers are also dealing with. “It plays with your head, man,” Garner said. Some feel guilt over being incapacitated even though their cases are “mild.” Some start doubting or blaming themselves. In her fourth week of fever, Hamilton began obsessively worrying that she had been using her thermometer incorrectly. “I also felt like I wasn’t being mentally strong enough, and by allowing myself to say that I don’t feel good, I was prolonging the fever,” she said.

Then there’s the matter of who to tell—and when. At first, Hamilton kept the news from her parents. She didn’t want them to worry, and she assumed she’d be better in two weeks. But as two weeks became three, then four, then five, the omission started feeling like an outright lie. Her concern that they would be worried morphed into concern that they would be mad. (She finally told them last week; they took it well.)

Other long-haulers have been frustrated by their friends’ and families’ inability to process a prolonged illness. “People know how to react to you having it or to you getting better,” LeClerc said. But when symptoms are rolling instead of abating, “people don’t have a response they can reach for.” They ask if she’s improving, in expectation that the answer is yes. When the answer is instead a list of ever-changing symptoms, they stop asking. Others pivot to disbelief. “I’ve had messages saying this is all in your head, or it’s anxiety,” LeClerc said.


Read: Friends are breaking up over social distancing

Many such messages come from doctors and nurses. Davis described her memory loss and brain fog to a neurologist, who told her she had ADHD. “You feel really scared: These are people you’re trying to get serious help from, and they don’t even understand your reality,” she said. Vázquez said her physicians repeatedly told her she was just having panic attacks—but she knows herself well enough to discount that. “My anxiety is thought-based,” but with COVID-19, “the physical symptoms happen first,” she said.

Athena Akrami, a neuroscience professor at University College London, said two doctors suggested that she was stressed, while a fellow neuroscientist told her to calm down and take antidepressants. “I’m a very calm person, and something is wrong in my body,” said Akrami, who is now on day 79, and is also a co-author on the Body Politic survey. “As a scientist, I understand there are so many unknowns about the virus, but as a patient, I need acknowledgment.” Every day, Akrami said, “is like being in a tunnel.”

To be sure, many health-care workers are also exhausted, having spent several months fighting a new disease that they barely understand, without enough masks and other protective supplies. But well before the pandemic, the health-care profession had a long history of medical gaslighting—downplaying a patient’s physical suffering as being all in their head, or caused by stress or anxiety. Such dismissals particularly affect women, who are “less likely to be perceived as credible witnesses to our own experiences,” said LeClerc. And they’re especially common when women have subjective symptoms like pain or fatigue, as most long-haulers do. When Garner wrote about those same symptoms for the British Medical Journal’s blog, “I had an unbelievable feeling of relief,” Callard, the geographer, told me. “Since he’s a guy and a professor of infectious disease, he has the kind of epistemic authority that will be harder to discount.”


Read: The doctor doesn’t listen to her. But the media is starting to.

Garner’s descriptions of his illness are similar to those of many long-haulers who have been taken less seriously. “It wasn’t like he wrote those posts in some arcane language that’s steeped in authority,” said Sarah Ramey, a musician and author in Washington, D.C. “If you took his words, put my name on them, and put them up on Medium, people would say, ‘Ugh, who is this person and what is she talking about?’”

Ramey can empathize with long-haulers. In her memoir, The Lady’s Handbook for Her Mysterious Illness, she writes about her 17-year ordeal of excruciating pain, crushing fatigue, gastro-catastrophes, and medical gaslighting. “Being isolated and homebound, incredible economic insecurity, the government not doing enough, testing not being up to snuff—all of that is the lived experience of someone like me for decades,” she says. “The illness itself is horrible and ravaging, but being told you’ve made it up, over and over again, is by far the worst of it.”

Formally, Ramey has myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) and complex regional pain syndrome. Informally, she’s part of a group she has dubbed WOMIs—women with mysterious illnesses. Such conditions include ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome. They disproportionately affect women; have unclear causes, complex but debilitating symptoms, and no treatments; and are hard to diagnose and easy to dismiss. According to the Institute of Medicine, 836,000 to 2.5 million people in the U.S. alone have ME/CFS. Between 84 and 91 percent are undiagnosed.


That clusters of ME/CFS have followed many infectious outbreaks is noteworthy. In such events, some people get better quickly, others are sick for longer with postviral fatigue, and still others are suffering months or years later. In one Australian study, 11 percent of people infected with Ross River virus, Epstein-Barr virus, or the bacterium behind Q fever were diagnosed with ME/CFS after six months. In a study of 233 Hong Kong residents who survived the SARS epidemic of 2003, about 40 percent had chronic-fatigue problems after three years or so, and 27 percent met the CDC’s criteria for ME/CFS. Many different acute pathogens seem to trigger the same inflammatory responses that culminate in the same chronic endgame. Many individuals in this community are worried about COVID-19, according to Ramey: “You’ve got this highly infectious virus sweeping around the world, and it would be unusual if you didn’t see a big uptick in ME/CFS cases.”

ME/CFS is typically diagnosed when symptoms persist for six months or more, and the new coronavirus has barely been infecting humans for that long. Still, many of the long-haulers’ symptoms “sound exactly like those that patients in our community experience,” says Jennifer Brea, the executive director of the advocacy group #MEAction.

LeClerc, Akrami, and others have noted that their symptoms reappear when they try to regain a measure of agency by cleaning, working out, or even doing yoga. This is post-exertional malaise—the defining feature of ME/CFS. It’s a severe multi-organ crash that follows activity as light as a short walk. It’s also distinct from mere exhaustion: You can’t just push through it, and you’ll feel much worse if you try. The ME/CFS community has learned that resting as much as possible in the early months of postviral fatigue is crucial. Garner learned that lesson the hard way. After writing that “my disease has lifted,” he did a high-intensity workout, and was bedridden for three days. He is now reading literature about ME/CFS and listening to his sister, who has had the disease. “We have much to learn from that community,” he says.


The symptoms of ME/CFS have long been trivialized; its patients disbelieved; its researchers underfunded. The condition is especially underdiagnosed among black and brown communities, who are also disproportionately likely to be infected and killed by COVID-19. If the pandemic creates a large population of people who have symptoms that are similar to those of ME/CFS, it might trigger research into this and other overlooked diseases. Several teams of scientists are already planning studies of COVID-19 patients to see if any become ME/CFS patients—and why. Brea says she would welcome such a development. But she also feels “a lot of grief for people who may have to walk that path, [and] grief for the time we could have spent over the last four decades researching this so we’d have a better understanding of how to treat patients now.”

Graeme Wood: What’s behind the COVID-19 racial disparity?

Some long-haulers will get better. The Body Politic Slack support group has a victories channel, where people post about promising moments on the road to recovery. Such stories were scarce last month, but more have appeared in the past weeks. The celebrations are always tentative, though. Good days are intermingled with terrible ones. “It’s a reverse-circling of the drain,” Vázquez said. “It has gotten better, but I track that trajectory in weeks, not days.” The COVID-19 dashboardfrom Johns Hopkins shows that about 2.7 million people around the world have “recovered” from the disease. But recovery is not a simple matter of flipping a switch. For some, it will take more time than the entire duration of the pandemic thus far.


Some survivors will have scar tissue from the coronavirus’s assault on their lungs. Some will still be weak after lengthy stays in ICUs or on ventilators. Some will eventually be diagnosed with ME/CFS. Whatever the case, as the pandemic progresses, the number of people with medium-to-long-term disabilities will increase. “Some science fiction—and more than a few tech bros—have led us to believe in a nondisabled future,” says Ashley Shew of Virginia Tech, who studies the intersection between technology and disability. “But whether through environmental catastrophe, or new viruses, we can expect more, exacerbated, and new disabilities.”

In the early 1950s, polio permanently disabled tens of thousands of people in the U.S. every year, most of whom were children or teenagers who “saw their futures as able and healthy,” Shew says. In the ’60s and ’70s, those survivors became pioneers of the disability-rights movement in the U.S.

Perhaps COVID-19 will similarly galvanize an even larger survivor cohort. Perhaps, collectively, they can push for a better understanding of neglected chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients’ subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.
 

MrsBlue

Shiny_Rock
Joined
Jan 30, 2013
Messages
148
I hope this accessible. It's an interesting and scary read. I've used up my free reads and can't post the article which deals with the long term effects of the virus.

Thank you so much for this! I experienced waves of dizziness and exhaustion weeks after being sick and was really confused about it.
 

AGBF

Super_Ideal_Rock
Premium
Joined
Jan 26, 2003
Messages
21,351
Yeah, I'm totally fine with that.

I can talk with people on the phone. I can talk with them on Skype. I can text or message them multiple ways. I can interact with people here and on social media. And then I can live to hug them another day, when there is either a vaccine or a treatment. Then I won't lose my husband and can still hug him and grow old with him. Then neither he nor I will be disabled by long-term effects of the virus. Then I won't lose my profession that I've worked so hard for since I was 12 due to lung fibrosis.

I'm in this for the long haul. Long-term picture, baby.

I find this doctor to be a bit more cavalier about risk than the research supports.
I'm with you. Unfortunately, I live with two people who are out in the world more than I am. I am much more likely to be one of those "elderly people who got it at home" if I get it. Not that my daughter and her fiancé are in crowds. But they are always going to Walgreen's or the gas station for a drink or to Baskin Robbins. Or they go for take out. They go out multiple times a day. Once in a while he has work (outdoors). When outdoor dining became possible, they did it. And so forth. I go to a grocery store once a week at most.
 

Matata

Ideal_Rock
Premium
Joined
Sep 10, 2003
Messages
6,990
@TooPatient I'm so happy you could read that article. I had you specifically in mind when I posted it and meant to tag you but my aging brain and 2 glasses of wine prevented me from doing both things.
 

Matata

Ideal_Rock
Premium
Joined
Sep 10, 2003
Messages
6,990
@missy, thanks for posting the entire article.
 

Demon

Brilliant_Rock
Joined
Feb 16, 2009
Messages
907
Michigan has 4928 new cases according to worldometers! Yeah, I'm still worried.


And now it says 5298?
 
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BMI

Shiny_Rock
Joined
Apr 17, 2014
Messages
181
I thought this article might be helpful as people start seeing extended family members again.

 
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