"My lab found significant microclot formation in long Covid patients"

January 9, 2022 4:34 PM

"Could microclots help explain the mystery of long Covid? [...p]reliminary results indicate that treatments such as antiplatelet and anticoagulation regimens have shown promising results in long Covid cases."
posted by MollyRealized (28 comments total)

Whoa! That is fascinating!
posted by rrrrrrrrrt at 4:39 PM on January 9, 2022

This is especially great:

Even those without long Covid could benefit from such research, as symptoms noted in long Covid patients show many similarities to those seen in chronic and viral-related illnesses including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – another disease that has been dismissed as “psychological” for decades. Just because we have not yet identified a biomarker for long Covid does not mean biomarkers do not exist. We just need to look harder.

Persistence and lateral thinking in medical researchers are wonderful things. This is VERY intriguing news.

Thank you so much for posting this, WCityMike2!
posted by kristi at 4:50 PM on January 9, 2022 [12 favorites]

We've known about the vascular burden for a while - those labs are among the ones we check routinely in hospitalized Covid patients where I am - but I'm at a big research hospital and have that benefit.

While we can see the abnormal coagulation components, I don't think we've come to any prelim conclusions on treating in the long or chronic phases yet. Apheresis is a noble idea but absolutely untenable for a large population based on resource utilization. We already have a huge blood shortage and that requires partial blood products, special equipment, and special training.
posted by cobaltnine at 5:00 PM on January 9, 2022 [13 favorites]

I see. So they'll just stay like that, then.
posted by tigrrrlily at 5:44 PM on January 9, 2022 [2 favorites]

This is very interesting work. I hope we see a lot more on this very soon.

It's definitely too early to know if this is something that applies to the majority of long Covid patients or more specifically to the subset of patients that were referred to their clinic and then the ones they chose to include in their study. Promising results, but very small number of patients in total.

This certainly could be compatible with some of the findings using ME/CFS patient serum from Stanford and others in the last few years, as well as blood flow abnormalities, especially cerebral.

Apheresis is a noble idea but absolutely untenable for a large population based on resource utilization.

Dr. Pretorius is using anticoagulant and antiplatelet drugs, rather than apheresis. Apheresis is being used by a number of people, but I don't think there are any studies more significant than single cases out on this yet.
posted by ssg at 6:17 PM on January 9, 2022 [2 favorites]

From the Op-ed: "Desperately ill patients are told that their pathology test results are within normal/healthy ranges. Many are then told that their symptoms are possibly psychological and they should try meditation or exercise."

Boy howdy do I feel this one. I had a TON of tests that resulted with normal results. Honestly, I think my medical record could just contain pages of shrug emojis at this point. Like, I don't think people quite realize how they just didn't/don't even know what to test for let alone what to do with those results. I think the Dr. and I sort of reached the conclusion that I was (very slowly) getting better, nothing seemed dangerously wrong, and that more tests weren't really going to do much. I am thinking about scheduling a sort of "what's the state of research" appointments to see if there's anything new in the last 6 months that might help since I seem to have stalled out. But hey, I'll take stalling out where I'm at over where I was this time last year.

Luckily I was dealing with a clinic specializing in treating Long Haul COVID so they didn't suggest exercise or meditation once I got to that point, but the first round of trying to get the referral had me explaining to multiple doctors that I don't think my weight has anything to do with ______ symptom, because the weight gain happened after all the symptoms because I was struggling with chronic pain/fatigue/etc. and wasn't up to moving as much as I used to.
posted by Gygesringtone at 6:47 PM on January 9, 2022 [20 favorites]

I see. So they'll just stay like that, then.

I'm not saying that, what I'm saying is that some of the solutions that are currently proposed will be exceptionally difficulty to scale. But Antiplatelet and/or anticoag therapies are relatively cheap and already the subjects of trials in other related fields, including the one I'm currently in. It's absolutely a thing to trial, but it will be in trial phase because we can't just give meds to someone and hope it works, ethically or legally, outside of a trial. There may also be other possibilities that haven't been quite formulated yet, either with preexisting medications or therapies or with ones that are closely related. Maybe it has to be, for example, cliostazol and not aspirin, or a particular anticoag agent working on the Xa versus the direct thrombin, for particulars - I don't think anyone really knows yet, and while this is a subresearch interest of mine, it's not my focus and I sure as hell don't have a lab. The hematologists have been the ones to watch - I've been saying this since March 2020 when I was on the Covid wards - but it's not as sexy as other work and it's gonna need time.
posted by cobaltnine at 7:14 PM on January 9, 2022 [18 favorites]

I feel like there is a very strong incentive to find a treatment for Long COVID, in the same way that there was a strong incentive for a vaccine, and if it turns out to lead to breakthroughs for other chronic diseases, it'll be a boon.
posted by Merus at 8:20 PM on January 9, 2022 [6 favorites]

I would not wish Long Covid on anyone, but as someone with an idiopathic blood clotting disease which means they have no idea what is happening but the anti-clotting meds work, I am super excited about the new research/spotlight on this. There were years of tests and I am grateful to the rheumatologist who said idiopathic and explained that they are still discovering new types of clotting variants and made me feel less of a medical oddity. Hematology is fascinating and the research is very underfunded. I'm going to ask about this next appointment out of curiousity.
posted by dorothyisunderwood at 10:38 PM on January 9, 2022 [9 favorites]

This looks promising and I hope the research goes somewhere.

I don't like the "dismissed as psychological" line though. There's a lot of stigma against psychological conditions but they can be every bit as incapacitating, painful and terrifying as illnesses with a purely physical cause.
posted by TheophileEscargot at 5:08 AM on January 10, 2022 [6 favorites]

Everyone should take a miniaspirin daily. (Okay, not those with aspirin allergies.)
posted by dances_with_sneetches at 5:18 AM on January 10, 2022 [1 favorite]

I am thinking about scheduling a sort of "what's the state of research" appointments to see if there's anything new in the last 6 months that might help since I seem to have stalled out.

Same, Gygesringtone. I'm 22 months in to long covid, and in many ways back to normal, but still can't do any intense cardio exercise without getting sore lungs, followed by virus-like symptoms and fatigue two days later (and I used to run long distance - it was a huge part of my life that I miss bitterly). I still get occasional weirdness like a rapid heartbeat that won't come down when I'm lying still trying to get to sleep, or brain fog when I've done too much. Most of my tests came back normal and those that didn't, don't have an obvious link to covid, though I picked up a couple of minor chronic health conditions along the way as a result of those tests.

So now I'm OK enough to not really have a reason to go back to the doctor, but I'm not normal, and nobody has a way to find out why. I'm aware that GPs mostly run on the basis that if you've gone away, they assume that's because you're better. So I think it's going to be a matter of booking occasional "Hey, still here, anything for me?" appointments with the full expectation of being told no.

But mostly I'm glad that I'm better off than a friend of mine who has been in the same kind of holding pattern for the same length of time, but is still too fatigued to work full time, has constant chest pain and muscle aches, and tests that all come back normal.
posted by penguin pie at 6:02 AM on January 10, 2022 [5 favorites]

I don't like the "dismissed as psychological" line though. There's a lot of stigma against psychological conditions but they can be every bit as incapacitating, painful and terrifying as illnesses with a purely physical cause.

I mean, you're 100% right about this, but it's kind of a separate problem. Dismissing, wrongly, is exactly what's happening here. People with ME/CFS and related issues like long Covid have debilitating physical illness that are routinely misdiagnosed as psychological and treated accordingly, which makes them much sicker, often dangerously so. The only officially approved treatment for ME/CFS is CBT and graded excercise therapy, and prescribing excercise for a condition defined by being made sick by physical exertion is like prescribing extra gluten to someone with coeliac disease on the basis that if they eat enough of it they'll build up a tolerance. People with coeliac cannot process gluten, and the more they eat the sicker they get and the less able their body is to cope with it. People with fatigue syndromes basically cannot process exertion the way healthy people do, and the more they exert themselves the sicker they get.
And CBT in this context is basically gas lighting patients into believing that if they can pretend to be well hard enough, they'll get well.
This is pretty well established now, it's not a fringe theory, and yet we persist in treating these syndromes as psychological to the detriment of patients' health. That's the issue here.

Plus, I promise, when most doctors say psychological they very much do mean there's nothing wrong with you, go away and stop being neurotic, even if that's not what psychological should mean. It is a dismissal.

TL;DR, "Psychosomatic symptoms and mental health issues are real and debilitating and we need to increase understanding and decrease stigma of them," is a real and important point, but it's a solution to a different problem than the one we have here.
posted by BlueNorther at 6:16 AM on January 10, 2022 [20 favorites]

If long-covid is anything ME/CFS it will turn out to be only part of the story for some of the people. I suspect long-covid will be another of the frustrating class of diseases like some mental illnesses, dementias or immune related disorders where it turns out there are a multitude of ways to end up at similar seeming destinations and the complexity of this pretty effectively hides the causal factors and confounds attempts at finding clear diagnostic markers and treatments.

My hope is that so many people are now looking at long-covid and some countries with actual national health care systems like the UK will be able to better tease apart what is going on using their access to population level test data with an unfortunately large "experimental" condition that should be able to uncover a multitude of different causal paths that lead to the symptoms grouped together under the long-covid classification.
posted by srboisvert at 6:35 AM on January 10, 2022 [1 favorite]

Everyone should take a miniaspirin daily. (Okay, not those with aspirin allergies.)

No, this is not true and you shouldn't be telling people on the internet what they should do medically. Daily aspirin (even mini-aspirin) is not recommended for everyone.
posted by cooker girl at 7:01 AM on January 10, 2022 [17 favorites]

Cooker girl, you are right, but I disagree with that article. You shouldn't take miniaspirins if you are already taking a blood thinner or have clotting deficits. Miniaspirins however, do have a very low risk of the problems you would have from regular strength aspirin. Also miniaspirins have many other health benefits than heart attack. In the articles discussion of whether to take them, they divide it out by risk of heart attack. They also do a good job in lowering strokes and colorectal cancer. (They may increase other cancers in patients over 70.)
Miniaspirins are safer than most any other blood thinner. (Of course, you may need a stronger blood thinner for specific conditions.)
It seems that in October 2021 the official uses of miniasprins was changed to not include those with a low risk of heart attack. I wasn't up to date on that.
posted by dances_with_sneetches at 7:26 AM on January 10, 2022 [1 favorite]

I don't like the "dismissed as psychological" line though. There's a lot of stigma against psychological conditions but they can be every bit as incapacitating, painful and terrifying as illnesses with a purely physical cause.

Yes that’s part of the problem being described. taking psychology symptoms seriously means not using it as a catch all for all the stuff you haven’t figured out another diagnosis for. Sort of like the other half of that statement, where blaming everything on weight adds to the stigma of being overweight.

Also it is incredibly cruel for doctors to suggest to someone with brain fog to meditate. I literally have had the exact same symptoms that my wife experienced with her concussion for the last almost two years, and any cognitive work for the first year or so of that would have just been impossible.

Oh and I’ll just ask people who aren’t long haulers to remember that there many of us here are, so be careful that you’re not talking about us rather than with us.
posted by Gygesringtone at 7:42 AM on January 10, 2022 [13 favorites]

Cooker girl, you are right, but I disagree with that article.

You can disagree all you like but you still shouldn't be dispensing medical advice on the internet unless maybe you're a doctor specializing in aspirin (and even then you shouldn't be dispensing medical advice on the internet).
posted by cooker girl at 7:45 AM on January 10, 2022 [5 favorites]

I misread the post title as 'microdot-formation' and thought we were talking about vaccines containing RFID chips.
posted by MtDewd at 8:10 AM on January 10, 2022 [1 favorite]

TL;DR, "Psychosomatic symptoms and mental health issues are real and debilitating and we need to increase understanding and decrease stigma of them," is a real and important point, but it's a solution to a different problem than the one we have here.

And to this I would like to add: even for physical symptoms which genuinely do seem to be being caused primarily by psychological stress or other issues, CBT alone is usually insufficient support. If you're dealing with a psychological condition severe enough that it is creating those kinds of problems for you, the problems you're grappling with are probably not simple cognitive distortions you can think your way out of. You have to work with the limbic system, which is notoriously resistant to CBT anyway. But because CBT is the panacea talk therapy, it offers a tempting solution that patients who are complex and not responding to the toolkit doctors have can be shunted to... with the additional advantage that you can then blame the patient for not trying hard enough when the CBT fails to meaningfully manage the problem.

Also it is incredibly cruel for doctors to suggest to someone with brain fog to meditate.

I... don't have much to add to this except that it had not actually occurred to me that this might happen very seriously and oh my god, I hate it. Talk about setting patients up to fail.
posted by sciatrix at 8:13 AM on January 10, 2022 [15 favorites]

Sciatrix, YES to all of that.
And my God, meditation and mindfulness...I have A Lot To Say about that, most of which isn't really relevant here, but trying to insist on meditation as a medical treatment can go so bad in so many ways. I'm autistic & have ADHD, and for me that adds up not just to Cannot Successfully Meditate but to Meditating Makes Things Bad. I've been told many times to try meditation, for chronic pain, for insomnia, for all sorts, and I can't do it. My brain can't do it. Brain fog and executive dysfunction are part of the reason - I'm just not capable of that kind of focus- but also, the way I handle chronic pain and sensory overload is to distract myself. Purposely removing all distractions sends me into meltdown for days.
You're right, Gygesringtone, it's cruel. "Oh, you can't focus or think clearly? Have you tried focusing really really hard? That should help!"
posted by BlueNorther at 8:44 AM on January 10, 2022 [9 favorites]

Is 50g fluvoxamine/fluoxamine, aka SSRI/Prozac, taken daily a way to significantly reduce inflammation from COVID? Assuming clotting issues arise from inflammation in the vascular system...?

https://www.nature.com/articles/s41380-021-01432-3

In November 2021, Oskotsky et al. [27] reported the results of retrospective cohort study of COVID-19 patients treated with SSRIs using electronic health records of 87 health care centers across the US. This study included COVID-19 patients (n = 470) receiving fluoxetine only, COVID-19 patients (n = 481) receiving fluoxetine or fluvoxamine, and COVID-19 patients (n = 2898) receiving other SSRIs. Compared with matched untreated control COVID-19 patients, relative risk of mortality was reduced among patients treated with any SSRI (relative risk = 0.92, 95% CI = 0.85–0.99, adjusted P = 0.03), fluoxetine (relative risk = 0.72, 95% CI = 0.54–0.97, adjusted P = 0.03), and fluoxetine or fluvoxamine (relative risk = 0.74, 95% CI = 0.55–0.99, adjusted P = 0.04). In contrast, there was not significant (relative risk = 0.92, 95% CI = 0.84–1.00, adjusted P = 0.06) between SSRIs other than fluoxetine or fluvoxamine and risk of death. Among SSRIs, fluoxetine and fluvoxamine may be prophylactic SSRIs for COVID-19.

(I'm not in the habit of interpreting scientific papers, and my stats foo is terrible, so I googled a bit: "If relative risk and the confidence interval are both entirely below 1.0, then people are LESS AT RISK of developing the outcome as a result of treatment or exposure, denoting a 'protective effect." I think this is saying infected folks on SSRIs are getting a 25-30% reduction in severity...)

If so, that might be quite encouraging as a treatment path in the interim. Also assuming it'll take 6-12 months or more for Paxlovid, the Pfizer antiviral, to be available behind the counter.
posted by Jubal Kessler at 9:37 AM on January 10, 2022

My mum has had a lifelong idiopathic clotting disorder and inflammatory disease so this is good information and a little scary. But it makes me hopeful we might learn more if indeed this is the case. I feel for people who are suffering or will suffer Long Covid, because man, it can impact a lot.

Everyone should take a miniaspirin daily. (Okay, not those with aspirin allergies.)

Just reiterating that this is really not true. I have a strong family history of stroke and I'm over 50, but each of my neurologist and my briefly-consulted hematologist were opposed to starting it. It's not like a vitamin.
posted by warriorqueen at 9:51 AM on January 10, 2022 [5 favorites]

Re : fluvoxamine

The Ontario guidelines for use for mildly ill patients who have a high or moderate risk of severe disease:

"Fluvoxamine 50 mg PO daily titrated up to 100 mg PO TID for 15 days may be considered for these patients if they present within 7 days of symptom onset.
This recommendation is based on very low certainty evidence of reduction in hospitalization, "
posted by yyz at 1:31 PM on January 10, 2022

The only officially approved treatment for ME/CFS is CBT and graded excercise therapy,

Less so than before, at least officially.

Even the home of this nonsense (UK) has started backing off from it. Though what actually happens at the clinical level is still a major issue. There is serious resistance within the profession and NHS to the changes. Coz empires, egos, incomes, political debts, etc, are all in play.

See the recently updated clinical guidelines in the UK. Still problematic, but a major critical step forward in the long overdue dismantling of one of modern medicine's greatest failures.
posted by Pouteria at 5:55 PM on January 10, 2022 [1 favorite]

To maybe kind of recenter the conversation away from general gripes and back onto the people the study is about helping:

I think one thing I'm very impressed with from that short Op-ed is the respect for those with Long Haul coming from Dr. Pretorius. As I've said, I've been mostly lucky with my experience seeking treatment, even if ultimately there hasn't been much better treatment than some Vitamin D and getting told that I need to give myself enough rest to heal (both of which have helped in different ways). But I've heard lots of horror stories from others detailing the problems with getting the medical community to believe them.

I think one of the things that is making it so difficult is that there seem to be 3 or 4 different clusters of symptoms some of which make sense together and some of which don't and a lot of which are hard to describe. Especially with the way brain fog effects the ability to put together coherent thoughts, or for that matter to form memories. Then there's the fact that one set of the symptoms getting ALL THE ATTENTION from the general public and medical community so like if you don't have that you might be more likely to get ignored or gaslit about what you're feeling, which is the one thing that did happen my first go round of trying to get a referral. It also doesn't help that like everyone is suddenly dealing with a very different world, and so like everything is a bit weird right now, and so teasing that general wierdness out from folks with the less dramatic symptoms is pretty night impossible.

Oh and there was a lot of early weirdness for those of us who got sick when the tests weren't really widely available so didn't have "proof" that we had COVID.
posted by Gygesringtone at 7:34 PM on January 10, 2022 [7 favorites]

Coming in late to say that you should not take daily aspirin unless one has coronary disease, atrial fibrillation, or a history of stroke, and have been instructed by your provider to do so.
posted by neuron at 9:33 PM on January 11, 2022

News from National Jewish hospital. The idea that my bodies just isn't making energy right on a cellular level sure jells with how I've been experiencing my energy levels. My go to example is that I feel like I'm an old iPhone, sleep works to charge me, but I just don't hold as much energy. It doesn't matter how much rest I get, I'm never going to get past that 66% charge.

Not super happy they choose to oncee again highlight how awful it is that an athlete doesn't have the energy they used to, but oh well.
posted by Gygesringtone at 3:08 PM on February 2, 2022 [1 favorite]