Long-Haulers Are Fighting for Their Future

September 1, 2021 5:26 PM

Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse. Despite long-haulers’ fight for recognition, any discussion of the pandemic still largely revolves around two extremes—good health at one end, and hospitalization or death at the other. This ignores the hinterland of disability that lies in between, where millions of people are already stuck, and where many more may end up.
posted by curious nu (38 comments total)

I think of the PTSD. Lifetime asthmatic. Not breathing causes severe anxiety/trauma. There are so many layers. Hugs everyone.
posted by lextex at 6:11 PM on September 1, 2021 [21 favorites]

Was it someone on metafilter who pointed out that the CDC website, briefly, had been updated to say that myalgic encephalomyelitis/chronic fatigue syndrome might have "numerous" causes including biological ones, but they've now, quietly, removed that line?

It's like they know, but it's politically inconvenient to admit the reality of long COVID because then the government is on the line for people's chronic disabilities caused by their own negligence.
posted by subdee at 7:04 PM on September 1, 2021 [18 favorites]

My dad is one of them, by the way. He recovered after a severe bout of COVID in March 2020 but then recently this year he relapsed and now he has trouble with memory. But he was also recently diagnosed with Lyme, another neurological disease with mysterious long term effects.
posted by subdee at 7:05 PM on September 1, 2021 [3 favorites]

I also have a friend with ME / Chronic fatigue who got COVID in the first wave and has been unable to work since then. She's not eligible for vaccine due to an autoimmune disorder. It sucks so much.
posted by subdee at 7:06 PM on September 1, 2021 [2 favorites]

This article was a nice companion to the Imani Barberin piece I read earlier this week, Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media: "Non-disabled people only saw the potential outcomes of the virus as either life or death — they didn't account for the gray. Disabled people live in the gray. Even after the virus has left the system and patients are in “recovery,” about one in three COVID-19 patients experience long-term symptoms and disability. They live in the gray now with us too."
posted by stellaluna at 7:19 PM on September 1, 2021 [24 favorites]

think of the PTSD. Lifetime asthmatic. Not breathing causes severe anxiety/trauma. There are so many layers. Hugs everyone.

I'm asthmatic too. I've written elsewhere on here about a really bad asthma attack I had in April 2020 during the height of the shutdown. I couldn't get prompt treatment, which probably exacerbated it. I really don't think I completely recovered from it until just last month.

At least, I'm pretty sure it was an asthma attack. I had a long conversation with my pulmonologist about it. He thought it was. I'm pretty sure I was counted as a COVD case, though. It might have been COVID, though I didn't have any of the other symptoms. I'll never really know for sure unless I get the anti-body test that distinguishes between vaccine and disease produced antibodies. Even then, I wouldn't know if I had an asymptomatic case of COVID in the year and a few months since my attack.

There definitely was a psychological component for me. Reading about COVID in the news, I would feel my chest tighten. I learned to use a flow-meter and blood oxygenation monitor to convince myself I wasn't having an attack. That helped. So did refraining from reading news reports about COVID.

I understand why the Long-COVID advocates are wary of assigning psychological causes to their condition, but it'd be a shame to discard a line of research that could help at least some people. I doubt there is any one cause. It strikes me that an intense infection is like firing a missile at a building. Trying to assign a single cause to the prolonged damage would be like focusing on a single destroyed wall or support. There probably are a lot of affected bodily systems that might be behind the lingering symptoms.
posted by eagles123 at 7:21 PM on September 1, 2021 [9 favorites]

but it's politically inconvenient to admit the reality of long COVID because then the government is on the line for people's chronic disabilities caused by their own negligence.

Note, the statute of limitations (in the US, for a claim of negligence against the federal government) is two years from the date that the claimant knew, or should have known, of the negligence so if you believe you have a claim you should get a lawyer ASAP as the clock is ticking.
posted by aramaic at 7:24 PM on September 1, 2021 [3 favorites]

then the government is on the line for people's chronic disabilities caused by their own negligence [...] you should get a lawyer ASAP as the clock is ticking.

Watching the richest country in the history of human civilization do this to themselves out of nothing more than greed, racism and spite is so awful.
posted by mhoye at 7:26 PM on September 1, 2021 [16 favorites]

It's like they know, but it's politically inconvenient to admit the reality of long COVID because then the government is on the line for people's chronic disabilities caused by their own negligence.

As the article points out, it's also politically inconvenient because what would this say about the legions of doctors who spent decades telling people with ME/CFS that they were making it up/hysterical/they just need to go for a walk?
posted by threementholsandafuneral at 7:55 PM on September 1, 2021 [34 favorites]

Now i feel like I need a [cite] for my statement but I cannot remember where I read it...

On a positive note I've heard both that the increased focus on long COVID is pushing forward the research into other longterm viral infections (https://www.bbc.com/future/article/20210609-how-long-will-long-covid-last), and there's also some people who've had ME/CFS for a long time sharing anecdotes on twitter about how their symptoms seemed to lighten after getting the COVID vaccine. And now I've reached my quote for unsourced factoids for the night...
posted by subdee at 8:54 PM on September 1, 2021 [7 favorites]

That BBC article is really good though, it covers a lot of the science that HAS been done so far on long-COVID and possible biological mechanisms that could be leading to the different symptoms people are having.
posted by subdee at 8:59 PM on September 1, 2021

flames-on-side-of-face.gif

It has been painful and infuriating to watch as long COVID sufferers have received the same "fuck you" from the medical community that those of us with ME/CFS and similar conditions have gotten for many years. But it hasn't been surprising. As the article notes, had these other conditions been taken seriously and researched properly, we would likely be far ahead of the game on long COVID. Instead, another group of sick people is treated like fakers and malingerers and attention seekers.
posted by bryon at 9:21 PM on September 1, 2021 [39 favorites]

so if you believe you have a claim you should get a lawyer ASAP as the clock is ticking.

It's good advice, but also this process takes a lot of sustained energy, which is exactly what's in short supply here.
posted by trig at 12:26 AM on September 2, 2021 [4 favorites]

I think it's also important to recognize that SSI and SSDI claims are a direct reason for the US goverment not aknowledging these conditions and these long term effects of COVID.

Also the process for people getting disability due to long covid is still very new, and because of how long it takes to get disability very few claims have been processed for this condition to approval. In general somewhere between 20 and 30 percent (this was quick googling ) of applications for any disability are approved on the first go around, so processes to approval in actuality can take years.
posted by AlexiaSky at 12:58 AM on September 2, 2021 [6 favorites]

I strongly dislike clickbaity articles like this one. We're 18 or so months into a novel pandemic, and still fighting tooth and nail to put out a raging wildfire. Quibbling about who gets to name one manifestation of the disease, who's doing enough or not enough for people with that manifestation of the disease, and what the future holds, is ridiculous.
"science" is not a monolith, it's a process, and we're still relatively early in the process of figuring out this NEW disease. It's a miracle we have a vaccine so soon. it's a crime we aren't getting that miracle to every patient. once the world is vaccinated, and we are no longer fighting a frontline war on a wildfire, so many resources will become available to figure out and manage other manifestations of the affliction.
this is not to minimize the suffering of those who have contracted prolonged symptoms, or have developed a chronic covid condition, because it's obvious that physicians and researchers are gathering info and beginning the process. it's just crazy to expect "science" to actively try to fight a two-front war when one of the fronts is still a blitz.
posted by OHenryPacey at 4:04 AM on September 2, 2021 [18 favorites]

And yet, shockingly enough, there are millions of scientists in tens of thousands of labs. I'm pretty sure there's enough fight to go around.
posted by seanmpuckett at 5:10 AM on September 2, 2021 [14 favorites]

Note, the statute of limitations (in the US, for a claim of negligence against the federal government) is two years from the date that the claimant knew, or should have known, of the negligence so if you believe you have a claim you should get a lawyer ASAP as the clock is ticking.

The US is immune from suit except for certain, fairly specific waivers of immunity, none of which is “the government as a whole did a poo.”
posted by sinfony at 5:34 AM on September 2, 2021 [6 favorites]

"science" is not a monolith

I don't think the article is treating "Science" as a monolith, or really talking about "Science" at all in the way people are wont to do.

I would have liked the article to take a larger view. It does allude to the ethical and design issues around research into disability*, where researchers don't listen to their subjects and end up going off in directions that aren't particularly efficient in actually benefiting the group they claim to serve, but I would have liked more emphasis on "this is a systemic problem that perhaps we could attack systemically" rather than the sort of scolding tone it takes.

*But also trans people, among others, but I don't know that 'marginalized groups' actually works as a catch-all here.
posted by hoyland at 5:34 AM on September 2, 2021 [1 favorite]

Ed Yong is one of the best science writers working on COVID. Referring to articles he writes as clickbait is a perspective I disagree with.
posted by medusa at 5:55 AM on September 2, 2021 [49 favorites]

Been following Yong's stuff for a while. He doesn't do clickbait.
posted by Pouteria at 6:14 AM on September 2, 2021 [10 favorites]

It’s a good article, I thought. It makes clear there isn’t any scientific consensus yet (how could there be when the disease is so new and the chronic condition lasts so long.) It describes work from researchers who are advocating for patients as well as researchers who are concluding that some patients are likely mistaken about having long COVID (i.e. have something different, not nothing) which is an important part of taking the disease seriously despite how it might feel to some of those individuals.
posted by michaelh at 7:41 AM on September 2, 2021 [1 favorite]

Many have been told by medical professionals that they’re just having anxiety or making up their symptoms. Even now, “it happens more often than not,” Lisa McCorkell of the Patient-Led Research Collaborative told me.

Somebody needs to do a study on how many people actually make up their symptoms to get attention from doctors. Because according to doctors, it's an epidemic of extreme proportions, a plague ravaging health care services around the world, and it's taking up enormous quantities of their time that would better be spent elsewhere.

Let's ignore for a moment how self-serving that sentiment is; doctors are convinced that people will fake a huge range of symptoms just to be prodded for a few minutes in an exam room. I'm not sure what they think is so outrageously wonderful about that experience that people will commit to acting miserable to get in there, but they're pretty certain that a vast swath of the population is malingering performatively to just bask in their presence.

On the other hand, if you go to any message board dedicated to any chronic disease, one of the most popular conversation is 'how long did it take to get your diagnosis.' Patients trade stories of how often their symptoms were attributed to attention-seeking and malingering until they were able to convince the right doctor to do the right test, at which point they got a diagnosis. And that's for diseases that have definitive tests available; I can't imagine how bad it is for diseases which are diagnosed through exclusion.

I walked around with a painful hernia for four years. I'd been diagnosed with Crohn's, and every doctor I went to said the pain was Crohn's-related, and that there was nothing they could do about it, and I was in remission so it couldn't be as bad as I was saying. I was told by one GI doc that the pain I was feeling couldn't be related to the hernia that showed up on my CT scan. That same doctor put a diagnosis of hypochondriasis on my chart. Over a year later, a different gastroenterologist noted that my pain was in the inguinal area, and had I considered that it might be a hernia?

And the test for a hernia is, you know, 'turn your head and cough.' Once a general surgeon did that test, he had me set up for surgery two days later.

The post-surgical pain from the hernia was less than the pain from the hernia itself within 24 hours.

When huge quantities of patients have to go through an ordeal to get relatively common, run of the mill conditions diagnosed, there's something deeply broken about the medical system. I keep thinking about every doctor I saw during those years I was experiencing enormous pain from an easily curable condition, and how they're all still convinced I was making shit up, and I'm struck by the fact that there's no way for them to learn from these mistakes. Doctors have no idea how many of their diagnoses were later revised or contradicted by other doctors, so they have no way to learn which patients weren't desperate for their attention, but for medical attention.

And now that we're seeing a disease that's difficult to diagnose spreading in this new plague, the condescending, dehumanizing, contemptuous chant of 'it's all in your head, it's anxiety, it's depression, go away' (never accompanied by a psych referral, strangely), is ringing out loud and clear. And until we figure out objective ways to measure things like pain and fatigue, they're going to keep dismissing genuinely sick people as attention-seeking malingerers unless we find a way to let them learn from their mistakes.
posted by MrVisible at 7:50 AM on September 2, 2021 [113 favorites]

The way that doctors are trained has to change.
posted by bleep at 8:45 AM on September 2, 2021 [12 favorites]

objective ways to measure things like pain and fatigue

And of course--and this is not remotely a rebuttal, just a complication--these things are very hard to come up with objective measures for in part because people adapt to them. If you are experiencing pain, say, that is worse than any other pain you have felt in your whole life, that actually isn't easy to compare on a one-to-one basis without knowing how much other pain you have felt.

This is why the traditional 1-10 pain scale and variants based on things like facial expressions is--not wholly useless, but very complicated, and almost immediately treated with a certain degree of cynicism when medical professionals try to use it in practice and find that some people go to a ten for almost anything and some people... don't. Then they fail to remove their cynicism when they encounter someone who is very calm and composed and explains they are feeling a five right now, but it's not really very alarming because their baseline is three or whatever, and then you eventually discover that they're actually living with the sort of pain that people without chronic pain would rate very highly indeed. The same goes for fatigue: these scales often assume a shared baseline for "normal" that does not exist and which people with chronic illnesses or long-term conditions cannot access. It is very easy to assume that one's baseline everyday is the same as everyone else's, and it's often very hard to check to see whether your assumption is right.

(And horribly, both pain and fatigue do in fact have strong psychological components--you really can change how much pain someone experiences from a procedure by distracting them or modifying the amount of fear and anxiety and expectations they feel going into it. But just as socially constructed concepts are nevertheless also real things with tangible impacts, psychological components do not mean that any given experience of pain or fatigue does or does not have a mechanical cause, and that deserves to be explored. Doctors need to stop expecting patients to lie to them, full stop.)

I like the various versions of the functional pain scale instead, which doesn't ask people to try to imagine a range of pain experiences and rank themselves within them. It asks what you are able to do right now in the context of the pain you are experiencing instead.
posted by sciatrix at 8:50 AM on September 2, 2021 [47 favorites]

Rogue antibodies could be driving severe COVID-19
posted by asra at 8:59 AM on September 2, 2021 [4 favorites]

When huge quantities of patients have to go through an ordeal to get relatively common, run of the mill conditions diagnosed, there's something deeply broken about the medical system.

I want to quote this whole comment (flagged as fantastic) but will settle for this bit. My experience was somewhat the opposite of yours in that I got a test for my condition but the test was inadequate and the interpretation outdated. In other words, I had all the classic symptoms of the condition but because the test didn't "show" it then I could not possibly be suffering from that condition. So I got the usual "eat less and exercise" runaround and at some point it was suggested that I was "depressed" even though I had NO symptoms of depression and ALL the symptoms of the condition. But you know, there isn't a "test" for depression so it's easier to just diagnose that and send the patient on their way. Oddly enough, as soon as I found a doctor who would treat my symptoms, not my test result, the symptoms resolved.

To bring it back closer to the topic, long Covid is the reason I'm refusing to go back to my office although management keeps implying that all we need to do is be vaccinated and wear a mask if we are walking around the office (but not at your desk because we'll all be six feet apart-we measured it! and we installed new filters!) and we are all perfectly safe. I have no interest in taking my chances on a "mild" case of Covid given the state of our medical system and what this article says about how long Covid is being addressed.

That's assuming I survive. A friend of a friend, fully vaccinated and who took all of the precautions but had some of the same comorbidities as I have, just died after catching Covid from her niece who brought it back from her unvaccinated, maskless schoolmates.
posted by Preserver at 9:29 AM on September 2, 2021 [30 favorites]

We definitely need to change how doctors are trained, but the problem goes much deeper than that. When we look at ME/CFS, we have fifty years of psychologists and doctors going to great efforts to try to make what was formerly considered an entirely physiological illness into a psychological problem. It's not like this came about by accident. There's a clear history, with key players who have pushed the psychological angle very hard, ignoring evidence, ignoring patients, denying obvious conflicts of interest, fiddling with study design and data and more. These people harmed so many people and they prevented decades of real research.

We need to take a systematic look at how this happened, what the incentives were for people to make these claims or to support these positions, and figure out how to avoid this in the future. Medical science has a horrific track record of treating physiological illness as psychological that includes many diseases that are without a doubt physiological. The discipline needs to take stock and figure out what is rotten that causes this pattern. Otherwise, we'll continue to see people, like those with long COVID, suffer at the hands of a medical establishment that makes the same error, again and again.
posted by ssg at 10:05 AM on September 2, 2021 [20 favorites]

The lack of media coverage around long covid is also a bit of a missed opportunity to help convince people to get vaccinated and take this epidemic seriously. It's more than just "a bad flu".
posted by WaterAndPixels at 10:28 AM on September 2, 2021 [21 favorites]

Totally agreed, WaterAndPixels. A former colleague of mine, who had no pre-existing conditions, has long covid and it is chilling to see what he is up against. Not only is it the physical symptoms but then having to spend hours on the phone with health insurance begging/berating them to cover the various services he now needs.
posted by rogerroger at 11:48 AM on September 2, 2021 [9 favorites]

Chiming in to say that Ed Yong's consistently excellent science reporting led me to subscribing to the Atlantic this last year. I was going to say "I expect he should be considered for a Pullitzer", but I see now that he did in fact receive the2021 Pulitzer for explanatory reporting.
posted by bumpkin at 12:53 PM on September 2, 2021 [7 favorites]

The pain scale can be useful for tracking pain (physical or emotional) over time but yeah I think it should be part of a holistic evaluation.

OTOH, if the other option is just providing medications/other interventions at the doctor's discretion, we know that providers do not necessarily treat everyone's pain the same. A scale like this, directly asking people what their subjective experience of pain is at this moment, can start the discussion of what that person's lived experience of pain is.
posted by tivalasvegas at 4:30 PM on September 2, 2021

And yet, shockingly enough, there are millions of scientists in tens of thousands of labs. I'm pretty sure there's enough fight to go around.

So everybody work on COVID now?

Those of us living with diseases that are currently not only incurable but invariably fatal might point out that there's never enough money for all worthwhile scientific research nor are there enough scientists. It's bad enough that people aren't able to get actual proven treatment because hospitals are overwhelmed with COVID cases. Let's remember that there are many devastating diseases for which there are no vaccines, no mitigating strategies for prevention, and in some cases no treatment at all. Research focused on those diseases remains essential.
posted by FencingGal at 6:23 AM on September 3, 2021 [18 favorites]

Honestly this is exhausting.

I haven't been able to work since I caught Covid in March 2020. I'm not receiving any treatment, because I've been on the waiting list for several different specialists for sixteen months, and whenever I do get to see them the treatment they can offer will have an extremely limited evidence base. I am not optimistic of recovery. I'm not even optimistic of effective symptom management. I already had a disability but this has been a completely different level of pain and incapacitation.

It should be possible for people in my position to say we need help without it being classed as quibbling, impatience, or an expectation that all scientists everywhere should be working on our problem at the expense of other conditions. Come on.
posted by Ballad of Peckham Rye at 11:21 AM on September 3, 2021 [16 favorites]

It should be possible for people in my position to say we need help without it being classed . . . an expectation that all scientists everywhere should be working on our problem at the expense of other conditions.

I'm sorry your situation is so tough. It sounds awful. Of course you need help, and I hope you get it. But I wasn't responding to people in your situation saying you need help. I was responding to a specific comment that did indeed suggest that all scientists everywhere should be working on COVID.
posted by FencingGal at 11:27 AM on September 3, 2021

No. It was implied upthread that the focus on vaccine development meant that resource couldn't yet be allocated to long covid, and the line you quoted was pointing out that not all labs need to be dedicated to one thing. How does "there's enough fight to go around" equate to saying "all scientists everywhere should be working on covid"? They are exactly opposite sentiments.
posted by Ballad of Peckham Rye at 8:25 AM on September 4, 2021 [2 favorites]

Johns Hopkins School of Medicine assistant professor Megan Hosey in The Guardian: Post-illness symptoms like long Covid are probably more common than we think

For what it's worth, I think this is correct; and I think that we will one day accept that the damage from an infection may be long-lasting or even permanent; and in any event persists long after the infection itself has been defeated. The contrary belief just doesn't make any sense: we wouldn't treat the victim of a shooting as if the injury was basically over at the moment the bullet or had been removed; the same must apply to any serious infection.
posted by Joe in Australia at 2:22 PM on September 12, 2021 [3 favorites]

I think the idea that long COVID and other post infectious diseases are damage from an infection is possibly true, but only one potential explanation and one that doesn't easily explain the facts. I think if we look at it through that lens, we risk closing off a lot of other possibilities. What we do know is that many people with serious long COVID did not have severe COVID symptoms and other people who were in the hospital are now fine. If damage from the infection was the cause, you'd expect it would correlate pretty strongly with severity of the initial infection, but that's not the case. You also would expect people to gradually get better over time, which is certainly the case for some people and very much not for others.

It could also easily be true that some people who were in the ICU do have something akin to damage, while other people have something entirely different. Personally, I think that's probably likely.

I think it would be more productive to accept that we simply don't know what long COVID and other post infectious illnesses are and cast a wide net when looking for mechanisms. We also want to avoid pushing people into rehabilitation that may ultimately make them worse, which is not the case when we're dealing with a physical injury like a gunshot wound.
posted by ssg at 3:37 PM on September 13, 2021 [1 favorite]

Or maybe just that viruses have a lot of different ways of fucking you up before, during and after the time that other humans can recognize your immune system is fighting something, and that's why viruses should be avoided.
posted by bleep at 4:08 PM on September 13, 2021 [1 favorite]