Post-Acute Sequelae of SARS-CoV-2 infection (PASC), FKA Long-Haul Covid

March 9, 2021 10:34 AM

The National Institutes of Health has announced the first phase of its four-year, billion-dollar initiative to learn more about why some Covid-19 survivors have long-term symptoms, even after the virus has left the body. The group of patients is known as the "long-haulers," though the NIH is calling the condition "Post-Acute Sequelae of SARS-CoV-2 infection," or PASC. (The word "sequelae" comes from Latin, meaning a condition that occurs following a disease. The word "sequel" has the same origin.) -- NBC News, Feb. 24, 2021

There is good news, finally, for those “long haulers” suffering from the long-term effects of COVID, or what is now known as Post-Acute Sequelae of SARS-CoV-2 (PASC). Dr. Anthony Fauci, the chief medical advisor to the President and the director of the National Institute of Allergy and Infectious Diseases, appeared at the White House COVID-19 Response Team Briefing to announce that the National Institutes of Health is researching it, backed by $1.15 billion of funding. -- Yahoo News, Feb. 24, 2021

In January, Mount Sinai Medical Center in New York the Center for post-COVID Care (modeling the center after what they did for first responders after 9/11, but on a much larger scale) and Cedars-Sinai in Los Angeles launched the multidisciplinary COVID-19 Recovery Program, to "meet the needs of a growing number of COVID-19 patients who experience lingering symptoms weeks and even months after physicians say they are virus-free." Last November, the Smidt Heart Institute at Cedars-Sinai LA established a specialized cardiac clinic to care for COVID-19 survivors who may be subject to long-term heart damage.

6-month consequences of COVID-19 in patients discharged from hospital: a cohort study -- The Lancet, Jan. 8, 2021

Previously: COVID Is Making Younger, Healthy People Debilitatingly Sick For Months. Now They’re Fighting For Recognition (Buzzfeed, August 25, 2020) Across the globe, scores of COVID “long-haulers” have been fighting for doctors to believe and help them. On Friday, they finally got a meeting with the World Health Organization. [...] The long-haulers called in to the WHO meeting from places around the world — the US, the UK, India, Italy, Spain, France, Finland, Senegal, and South Africa — but they all shared largely the same story: I was young and active before this, and now I cannot seem to get better. I haven’t been able to get my doctor to believe me because I do not have a positive test result, and I need a lot of care that does not exist where I live.

Pandemic/Coronavirus/Covid/Covid19/Covid-19, previously on MetaFilter.

posted by Iris Gambol (24 comments total)

My relative is one of those long-haulers. They’ve been suffering for just about a year.
posted by 41swans at 10:54 AM on March 9, 2021

Post-Acute Sequelae of SARS-CoV-2 infection," or PASC

Can we agree that Long Covid is a better name? Technical names can have value, for example disambiguation, but I don't see any gain in precision here. Going latin, polysyllabic and acronymed adds nothing to the term that survivors developed for themselves.
posted by justsomebodythatyouusedtoknow at 11:20 AM on March 9, 2021 [10 favorites]

I got the first of 2 Moderna doses last week, with the second dose to be poked into my arm in a month. (In theory -- we shall see if/when the second dose shows up.) I feel lucky to have gotten Moderna; I'd have taken anything they offered but what I've read says Moderna is the best.

Reading this post has got me to noticing that I've been *way* less cautious since I got that first shot, a foolishness which has got to stop. I've got good masks and plenty of them; it's such an easy fix to protect myself (and you, possibly) from what is such a potential nightmare.

It's so easy to back-slide. To let down my guard. It's been so easy for me to lose that edge; caution above all else. I don't want to get this damned illness. No one in my social milieu has gotten it (that I know of) and I don't want to be the first. Or the second, either, nor any other number.
posted by dancestoblue at 11:43 AM on March 9, 2021 [2 favorites]

I have several colleagues that are suffering from long-term effects of COVID.
One was shocked when he tested positive for COVID back in May because he felt fine but then towards the end of 2020 he noticed he could no longer walk up a flight of stairs without getting seriously winded. He also was extremely fatigued to the point where he was asking to have his hours cut at work. He has since improved--- actually two or three weeks after the first dose of the vaccine he said he started feeling much better and is now back to "99%." Another colleague (who works in the same facility as the one mentioned above) said he never quite got back to 100% and has had shortness of breath since May (when he also tested positive.) His wife is his assistant and she tested positive after becoming symptomatic and has never really recovered either. She ended up having to quit her job. Finally a nurse I work with was out for 2 months with COVID and is no where near recovered. She ended up with a-fib that the cardiologist said was from COVID as well as chronic PVCs that she said she never had before COVID. She is not the same person as before-- she tires very easily, is always extremely pale and you can just see it in her eyes that she doesn't feel well.

All of which is why I rankle so easily when I see dumb comments on the internet about "cOvId hAs A sUrViVaL rAtE oF 99%".
posted by drstrangelove at 11:45 AM on March 9, 2021 [17 favorites]

I don't see any gain in precision here.

It is an important difference that these problems go on after the virus itself is gone. "Long Covid" is really easy to read as the virus still being present (or if that's not what it means, what does it mean to have Covid?).

"Long Covid" is catchier, but PASC is easy to say and spell and doesn't seem like a funny word, so, pretty good as an acronym.
posted by clew at 11:49 AM on March 9, 2021 [5 favorites]

I got my first Pfizer shot last week. By volunteering at a vaccine clinic. My job was to scan foreheads and ask the screening questions, and then collect folks paperwork and photo IDs. A bit after my shot, I realized I wasn't socially distancing from folks, (especially the Spanish speakers, as I can't pronounce Spanish, and had to basically show them the questions one at a time). But since then, I have still been wearing my mask, staying away, etc. But the relief one feels after a year of this is hard to ignore/overcome. It is hard not to feel that I am almost INVINCIBLE!!!11!1!
posted by Windopaene at 11:50 AM on March 9, 2021 [1 favorite]

Knowing several long-haulers is what forced me to really take the risk of infection seriously for myself. I'm relatively healthy and young-ish so for the first few months of COVID I was more acting out of concern for others. But I know about a half dozen people like me (around my same age, similar or better health) for whom long-term COVID has been pretty catastrophic. In that they weren't able to work for months, they can barely walk around the block, and so on. Seeing that this is what can happen to you if you get COVID - yeah, that wound up being the deciding factor that kept me home on more than a few occasions when I was tempted to relax my own protocols.

Many of my friends with long-term COVID were also treated TERRIBLY by health care professionals, including being accused of lying about even having had COVID in the first place (this happened to a friend who first contracted COVID in the early days when it was almost impossible to get a test). I'm glad this is being taken seriously.
posted by lunasol at 11:54 AM on March 9, 2021 [7 favorites]

Covid is not the official name either, so using the name Long Covid is similarly incorrect, and just as acceptable. COVID-19 refers to the disease and SARS-CoV-2 refers to the virus (note both awkward capitalization). Coronavirus is a reference to a family of viruses. Corona is the name of a beer brand. Corvid is the name for the crow family of birds which also includes rooks, and ravens.

Colloquially language can be especially imprecise because it usually doesn't require the kind of precision that others project onto it.
posted by fragmede at 11:55 AM on March 9, 2021 [1 favorite]

The three people I'm closest to who got COVID all have long haul symptoms. Each had very different severity of initial infection: One was mildly ill and had a fever, one had 72 hours of the worst bed-ridden illness he's ever experienced, and one had moderate symptoms but then such bad chest tightness we took her to the ER. All have had a bizarre succession of symptoms coming and going since: Chest tightness, exhaustion, brain fog, headaches and chest tightness accompanying menstruation, light sensitivity, etc. They come on for a few weeks and then lapse for a few months. Still bad nine or more months later. So confusing and terrifying.
posted by little onion at 11:57 AM on March 9, 2021

Really good first-hand account of long COVID. This piece is from August but I follow the writer on Twitter and she's still experiencing symptoms.
posted by lunasol at 12:04 PM on March 9, 2021 [7 favorites]

There's an article in the Atlantic that I found very interesting, looking at the possible relationship of long COVID to other poorly-understood long-term disorders or syndromes (e.g., ME/CFS, chronic Lyme), which also touches on the ways all of these have been pooh-poohed by many doctors, as lunasol mentions above. Reading the article made me very glad I've been super-cautious all year. I could face the possibility of getting sick and being in the minority who die of the disease, but the prospect of being incapacitated and not knowing if you're ever going to get well again is terrifying. I'm very lucky to have gotten scheduled for my first shot tomorrow morning at 7:15 (not that I'm counting the minutes or anything), and it's a huge huge relief; given the clusterfuck that the Oregon vaccine rollout has been, I'd been gloomily looking toward the possibility of waiting another month or two.
posted by Kat Allison at 12:31 PM on March 9, 2021 [11 favorites]

The prospect of being incapacitated and not knowing if you're ever going to get well again is terrifying

This has been looming so prominently in my mind that last month, when I had a quite severe case of poison oak, I was still very much relishing the fact that even though I was miserable, the symptoms are pretty unambiguous and the timeline for complete recovery is reasonably short and extremely predictable.
posted by aubilenon at 1:34 PM on March 9, 2021 [1 favorite]

I'll bet the official unemployment rate is skewed by long covid, since it only counts people actively looking for work and not those still suffering from symptoms. Not to mention all kinds of knock-on effects in the future like mental health issues, increased health care use, absent parenting, etc.
posted by meowzilla at 3:20 PM on March 9, 2021 [3 favorites]

This is what has always irritated me about the "oh it's just like a really bad flu" or "if you're healthy, you'll recover and be fine" rhetoric folks spout (usually while bitching about having to change their behaviours and wear a mask, as though they didn't share the planet with other people). Hey, maybe you do fully recover, but given that a lot of folks are left with potentially permanent health problems, and if you live in a country like the US where healthcare adds up fast, you don't want to get COVID full stop. I have a friend in the UK who got sick from it last March, and she hasn't been able to taste or smell anything for almost a year. (Plus constant fatigue and brain fog she didn't have previously.) And her doctors don't know if those senses will come back.

Despite the vaccine being more available--I got my first shot Sunday because I am a healthcare worker--and the variations of a lockdown being lifted, I still live my life like the first lockdown. COVID ain't going anywhere, even we achieve fabled herd immunity, and frankly, I'd like myself and others to remain as healthy as possible. I am lucky that I live in a part of Ontario where we have been in a green zone since this started, but I constantly worry about my mother who lives in South Carolina. My sister got COVID from her job--she worked at a gym, where she and five other workers got sick--and she still doesn't feel a 100 percent. The gym was also in South Carolina, and even though their employees got sick, they still refused to take responsibility.
posted by Kitteh at 4:08 PM on March 9, 2021 [5 favorites]

PASC is easy to say

I find it to be unpleasant and somewhat labor-intensive
posted by thelonius at 6:34 PM on March 9, 2021

He has since improved--- actually two or three weeks after the first dose of the vaccine he said he started feeling much better and is now back to "99%."
posted by drstrangelove

Which suggests the possibility that, pre-vaccination, the virus had not in fact been cleared from the body, and the standard measures of viral presence are failing to detect it after the initial infection and illness phase has passed.
posted by Pouteria at 7:28 PM on March 9, 2021 [2 favorites]

About Long Covid vs PASC, for what it’s worth all the folks in my support group self identify as long haulers, except those of us over 10 months, we’re ultra long haulers.
posted by Gygesringtone at 8:19 PM on March 9, 2021 [1 favorite]

"EXCLUSIVE: Britain has started infecting volunteers with #coronavirus in the world's first study of this kind, the Department of Health and Social Care has confirmed to me."

https://twitter.com/LarissaSchwedes/status/1368557188629868544

Monitoring of these participants will give a more accurate picture, especially association with the acute phase of the syndrome.
posted by daksya at 12:39 AM on March 10, 2021 [2 favorites]

Which suggests the possibility that, pre-vaccination, the virus had not in fact been cleared from the body, and the standard measures of viral presence are failing to detect it after the initial infection and illness phase has passed.

Pouteria, that's basically what he thinks might have happened.
posted by drstrangelove at 3:48 AM on March 10, 2021 [1 favorite]

daksya, thanks for the Twitter link! Larissa Schwedes (UK & Ireland press correspondent) tweets, via Thread reader: EXCLUSIVE: Britain has started infecting volunteers with #coronavirus in the world's first study of this kind, the Department of Health and Social Care has confirmed to me. Since saturday, young and healthy adults are "exposed to the virus in a safe and controlled environment, with medics and scientists on hand to monitor and look after them 24 hours a day", a spokesperson told me.

"The Human Challenge Programme will improve and accelerate the development of vaccines and treatments against COVID-19, and the first group of volunteers have now started the virus characterisation study at the Royal Free Hospital in London."

From her article, Britain first to infect healthy volunteers with coronavirus for study (dpa.com, March 7, 2021) The first tests in the study, which involves volunteers who have not received the Covid-19 vaccine yet [...] For the study, scientists selected up to 90 volunteers who are young, healthy and unlikely to contract severe Covid-19, the lung disease caused by the coronavirus. They are initially to be exposed to the lowest dosage of virus necessary for infection.[...]

German scientists have criticized such human challenge trials, saying infections in a lab are not the same as infections in real life. The German Association of Research-Based Pharmaceutical Companies (VfA) said these studies are unethical and might produce distorted results, as they are only conducted with young, healthy respondents and the findings might not be applicable to elderly people.
posted by Iris Gambol at 11:46 AM on March 10, 2021 [1 favorite]

Iris Gambol: German scientists have criticized such human challenge trials, saying infections in a lab are not the same as infections in real life. The German Association of Research-Based Pharmaceutical Companies (VfA) said these studies are unethical and might produce distorted results, as they are only conducted with young, healthy respondents and the findings might not be applicable to elderly people.

This objection could be extended to stop *all* research. The only way to know what happens to John Smith is to conduct the research on John Smith. Instead, research is conducted on subjects genetically and physiologically "close enough", starting with small animals, working up to non-human primates, and then humans if the phenomenon in animals doesn't closely mirror that in humans. In the case of SARS-CoV-2, it doesn't since few animal species develop severe disease with this virus.
posted by daksya at 10:18 PM on March 10, 2021 [2 favorites]

daksya, I copied the Schwedes twitter thread and excerpted from the article to add context and to tone down my own excitement at this development.

In re: animals, but particularly the outbreaks on mink farms; Nature's March 2 article, The search for animals harbouring coronavirus — and why it matters, has a chart: The World Organisation for Animal Health (OIE) tracks outbreaks, reported by individual countries, of SARS-CoV-2 in animals. An outbreak consists of one or more cases, identified by the presence of viral RNA in an animal. Countries had reported 458 outbreaks by 15 February 2021. Mink accounted for 336 of the 458, and at least 60 people are suspected to have caught the virus from mink.
posted by Iris Gambol at 10:41 PM on March 10, 2021

Can vaccines help long-haul COVID-19 sufferers? (CBS, March 19, 2021) While most people who contract COVID-19 will later test negative for the virus and recover weeks after infection, an undetermined percentage of people who also test negative continue to report symptoms for months on end. Testimonies from people in this group, known as COVID "long-haulers," who say they found relief after receiving the vaccine, have offered a new clue into the ongoing mystery of so-called "long COVID."

(h/t to Artifice_Eternity)
posted by Iris Gambol at 12:55 PM on March 23, 2021 [1 favorite]

Mysterious Ailment, Mysterious Relief: Vaccines Help Some COVID Long-Haulers (NPR, March 31, 2021) There are several leading theories for why vaccines could alleviate the symptoms of long COVID: It's possible the vaccine clears up leftover virus or fragments, interrupts a damaging autoimmune response, or in some other way "resets" the immune system. [...] In the absence of large studies, researchers are culling what information they can from patient stories, informal surveys and clinicians' experiences. For instance, about 40% of the 577 long COVID patients contacted by the group Survivor Corps say they felt better after getting vaccinated. Among the patients of Dr. Daniel Griffin at Columbia University Medical Center in New York City, "brain fog" and gastrointestinal problems are two of the most common symptoms that seem to resolve post-vaccination. [...]

But not all clinicians are seeing the same level of improvement. Clinicians at post-COVID clinics at the University of Washington in Seattle, Oregon Health & Science University in Portland, National Jewish Health in Denver and the University of Pittsburgh Medical Center tell NPR that so far, a small number of patients — or none at all — have reported feeling better after vaccination, but it wasn't a widespread phenomenon.
posted by Iris Gambol at 5:24 PM on April 3, 2021