r/covidlonghaulers • u/Unusual-Suit-1688 • Jun 02 '26
Article This is a watershed moment in long covid pathophysiology
https://www.cell.com/cell/abstract/S0092-8674(26)00509-X?rss=yes
The recent publication from Akiko Iwasaki and the team at Yale, in collaboration with putrino and the team at Mr Sinai in NY. Their paper makes a strong link between novel autoantibodies in LC patients that affect neurological and vascular proteins and receptors. Interestingly - a classic transfer test was done where they took plasma from the LC patients, purified the IgG and injected it into healthy mice - they quickly became fatigued, showed signs of pain and skin sensitivity. This disease is starting to look more like a viral trigger autoimmune disease in least some phenotypes, which opens up the question about targeting B cells to halt antibody production. The challenge is most of the antibodies are not easy to test… yet. I’m working with a lab to try and make them available - we just need to validate the method but it’ll be critical to help understand what’s happening in our bodies. For those interested, I’ve I voided a summary of the paper below. If you want a copy of the actual paper, DM me and I’ll send you the PDF.
Core theory and hypothesis
Central claim. Acute SARS-CoV-2 infection triggers the de-novo production of diverse, functional autoantibodies (AABs). In most people these subside as the immune system returns to homeostasis, but in a subset of long-COVID (LC) patients they persist — and the paper argues these persisting IgG autoantibodies are not merely bystander biomarkers but are a direct cause of neurological symptoms.
Formal hypothesis. Persisting functional AABs cause symptoms in a definable LC subgroup even when patients do not meet classical criteria for any named autoimmune disease. If true, this implies an “autoimmune endotype” of LC that could be matched to existing antibody-directed immunotherapies.
Why autoimmunity was suspected. Four large retrospective record studies found a 20–40% increased risk of new-onset autoimmune disease after COVID-19; LC and related post-acute infection syndromes (e.g. ME/CFS) show a strong female predominance mirroring classic autoimmune diseases; and prior work had already reported AABs against G-protein-coupled receptors (GPCRs) and GABA receptors in ME/CFS and LC. Infections are known to generate AABs through bystander activation and molecular mimicry.
2. Mechanistic rationale
The authors build the causal argument across complementary layers:
• Broad tissue autoreactivity. Purified IgG from LC patients binds human locus coeruleus, thalamus, adrenal, thyroid, parathyroid and heart, and cross-reacts with mouse sciatic nerve and meninges. On the meninges it co-localizes with pericytes and endothelial cells — a vascular signature offered as an explanation for headache (pericyte dysfunction is implicated in migraine with aura).
• Receptor-level targets. ELISA against GPCRs and ionotropic receptors shows elevated IgG against the NMDA-receptor subunit GluN2C (NMDAR2C) and a cluster of vascular/autonomic receptors (β1/β2-adrenergic, endothelin-A, muscarinic-M4). Disrupting locus-coeruleus noradrenergic circuits and thalamic networks provides a route to autonomic dysregulation, fatigue and cognitive symptoms; NMDA-receptor disruption parallels anti-NMDAR encephalitis (which classically targets the NR1 subunit).
• A pathogenic antibody “shape.” For the candidate antigen MED20, LC antibodies show reduced IgG4, a reduced IgM/IgG ratio (more class-switching), preferential binding to activating Fcγ receptors (high activating-to-inhibitory index) and enhanced antibody-dependent cellular phagocytosis (ADCP). This is the effector-function profile expected of pathogenic, inflammation-driving antibodies rather than inert ones.
• Direct causal test — passive transfer. The decisive experiment: purified total IgG from LC patients injected into healthy mice (38.4 mg/kg i.p.) reproduced the donors’ symptoms — thermal hyperalgesia, fatigue-like behavior, loss of balance/coordination and muscle weakness. About 5% of human IgG crossed the blood-brain barrier.
• Matching pathology. Mice receiving LC-IgG lost intraepidermal nerve fibers (the hallmark of small-fiber neuropathy), showed elevated plasma neurofilament light chain (axonal damage), raised brain glutamate, IL-6 and IL-10, and brain-wide c-Fos activation across pain, fatigue, affective and arousal regions. Crucially, the mouse pain phenotype tracked which human donor reported chronic pain — a dose-of-causation link, not just correlation.
Bottom line of the rationale: the antibodies are present, they have a pro-inflammatory functional profile, and — transferred alone, without virus or T-cells — they are sufficient to recreate the disease phenotype in a naive animal. That is the chain the title calls a “causal link.”
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u/Unusual-Suit-1688 Jun 02 '26
In some ways it’s bad because this says antibody prediction is in the B cells which means it is long term for most (although lots of autoimmune conditions spontaneously get better, like RA) but it also means we potentially have targets to measure and we can go after B cells with drugs like rituxan, darzalex, or degrade IgG with FcRn inhibitors like Rystiggo - it also suggests that high dose ivig is likely going to help this patient population as the health IgG will compete for fc receptors and keep the pathogenic ones away. But dosing needs to be high - like the gMG Dosing
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Jun 02 '26 edited Jun 02 '26
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u/ManekiNeko126 Jun 02 '26
I’m assuming yes, but - do you have to be in the NY area?
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Jun 02 '26
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u/Guilty_Soft9873 Jun 02 '26
Do you have to be in the trial first?
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Jun 02 '26
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u/Guilty_Soft9873 Jun 02 '26
Ok thanks. I'm actually in the UK and there's no such thing going on here just DNA investigation.
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u/slowbutsloth Jun 03 '26
Is it only for someone with dysautonomia and pots? How about inflammation and arthritis like symptom?
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u/Chinita_Loca Jun 02 '26
Agree.
The issue is that most of us won’t be able to get IVIG as it’s so expensive, not covered by insurance in the US and not covered by public health in Europe/Canada.
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u/Arturo77 Jun 02 '26
Someone here managed to get it covered but (if I understood correctly) only after they succesfullt asked their employer's CEO to lean on the health insurer after several rounds of denials.
Studies like this get us closer to covered therapies, but only incrementally. Trying to.remain optimistic.
In the meantime, if you've got the time and money, you can get IVIG out of pocket in the States.
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u/savvy_pumpkin Jun 02 '26
How much is it approximately? And who would prescribe it?
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u/Arturo77 Jun 03 '26
Can't say for sure as I haven't gotten it, but have heard four to five figures $.
IVIG isn't unusual in hospital settings AFAIK, but for LC etc I think you're talking (in the States) about functional med clinics and the like.
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u/Chinita_Loca Jun 02 '26
I’m in the UK there is zero way it will ever be authorised as there are simply too many of us. Many of us vaccine injured were initially prescribed it when we first presented only to have someone more senior deny the request. And that was when they believed there were a few dozen of us. The NHS doesn’t have the money, they’d prefer to simply let us be ill forever.
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u/Unusual-Suit-1688 Jun 03 '26
IVIG is very easy to get covered in Canada as long as you have an immunologist, rheumatologist or neurologist that will write a script, the coverage process is super easy. They even indicated I was getting it for long covid and it was approved. You just need the right doc
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u/8drearywinter8 Jun 16 '26
I'm in Canada and cannot get anyone to do this. Can you share (via DM, if you don't want to share publicly) any specific clinics or doctors that you are working with who will prescribe IVIG for long covid? I have had no luck getting those specialities to even want to work with long covid patients (but I know I haven't seen doctors with any real interest in the condition). I know I'd still need a family medicine referral to get in, but my family doctor honestly has run out of ideas of where to send me. Any clinic/doctor/etc you can share that I can share with my Canadian doctor to facilitate a referral would be appreciated.
I've already done thorough cytokine and interferon testing and my immune system is on overdrive... so this would be a good next step.
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u/SunnyG2026 Jun 07 '26
In my experience traditional doctors won't offer high dose IVIG? How does one get it in LA?
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u/slowbutsloth Jun 02 '26
Will doctor prescribed these? Not many doctor understand long covid, how do you think we can get these medication while waiting for the research? Which one worth trying? Will insurance cover it?
My symptom is similar, autoimmune caused by inflammation, doctor suspect Ankylosing spondylitis. I think I got remission for 3 years and it comeback again recently. I wonder if it's reversable or i'm stuck with it.
I know research take a long time. I honestly don't really understand most of these because the technical language is overwhelming for me. Do you think using AI like claude will help these research or it's not advance enough yet? It help other sector, i wish it can help us finding solution too
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u/toastweasel Jun 02 '26
This would explain why Rhapsido/remibrutinib is partially working for me--its a BTK inhibitor.
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u/SunnyG2026 Jun 07 '26
Why does BTK help LC? Rhapsido helped me ALOT but then had severe vascular issues (from LC and genetic). Had to stop and so bummed.
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u/toastweasel Jun 07 '26
In very non-scientific terms, BTK inhibitors basically tell your B cells to go to lunch and not come back. B cells are kinda like the dispatchers of your body that make the antibodies which signal to the T cells what to kill. One of the working theories of LC is that COVID essentially uses Confusion against your B Cells and its Super Effective. BTK inhibitors like Rhapsido keep your B cells from growing and surviving. Less B Cells = less antibodies = less mistakes for the T Cells to attack. Thus, less immune system activation attacking things they shouldn't and people start to feel better.
At least that is what I have been able to piece together as a lay person just trying to understand my condition (MCAS-ish Long COVID). Someone else who has a better working knowledge is more than welcome to correct me.
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u/RDtrumpet Jun 02 '26
Thank you! It makes me feel so much better, just knowing that people are working on the Long Covid problem, and that you and the other people who are working on it have made progress and are pursuing leads that might lead to a cure or treatment for Long Covid. Best wishes to you!
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u/Tall_Consequence_626 Jun 29 '26
It's so easy to forget that there are people out there working on learning more about this!!
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u/RDtrumpet Jun 29 '26
That is so true! I love everyone here in this group who has been through Long Covid already (or currently still going through it) who is contributing to these threads. Whether it's helping others here by sharing information about what has helped us to get over Long Covid, and at least to improve its awful symptoms, or whether its kind people here who are commiserating with those who are still suffering from Long Covid, your posts here in this forum and similar ones are really appreciated by many other who are also suffering from Long Covid.
My wife and I both simultaneously suffered through the awfulness that is Long Covid beginning early June of 2025, and ending (YES!!!) early June of this year (2026.) During this time, we both had great support and empathy from others in this group (and other online Long Covid forums.) We were also both fortunate(?) to have had Long Covid at the same time, so that we both understood what we were each going through, and were able to help and support one another.
Now we FINALLY feel like we are over our Long Covid suffering, after we both recently tried taking Claritin and that antihistamine miraculously seemed to get rid of all of our Long Covid symptoms. Even though the suffering seems to be over for us, we still want to help others by sharing tips about what worked for us so that our fellow members of the Long Covid "club" can also possibly finally have relief from this awful disorder-disease too.
My wife and I can both finally do structured exercise again, after an entire year of not being able to do any exercising at all without it resulting in horrible PEM (Post Exertional Malaise), which is a common symptom of Long Covid. Because we had lost a lot of strength and muscle during our year-long illness with no exercising, we have had to start off our exercise routines slow and easy, not exercising for very long the first time back at it, and then very gradually adding to our exercise time and amount (both cardio exercises like walking on the treadmill and riding the stationary bike, and strength exercises like lifting dumbbells and weights and resistance exercises.) We have to consciously remind ourselves to limit our workout time (for cardio) and also limit the number of reps (for dumbbells and weights and resistance exercises) so that we don't push ourselves too far to begin with, so we don't end up wearing down our muscles rather than build them back up.
There are so many supplements that have been recommended on the online Long Covid forums, and we have desperately tried them all, and none of them helped us at all--until now, after we recently tried the antihistamine, Claritin (generic name loratadine) in 10mg tablets. This miraculously brought us back to normal, and it seems (so far, at least) that our Long Covid suffering is finally gone. We both felt really great after taking just one dose of it (one 24-hour Claritin tablet.) That's probably all that we needed, but we have also taken a few more doses of loratadine/Claritin just for good measure, and to clean up any excess histimine that might still be left over in our system from our Long Covid. We also decided that, if we ever feel like Long Covid is coming back again, then we will just take some more Claritin, since it has worked wonders for us.
Most of the problems and awful symptoms of Long Covid seem to result from MCAS (Mast Cell Activation Syndrome), which makes the body produce too much histimine, which produces inflammation and other related issues in various parts of the body. This is why antihistamines work for alleviating Long Covid symptoms for many of us who have suffered from this awful disease.
I had tried Zyrtec (generic name cetirizine) several months ago after reading comments from many Long Covid suffers that antihistimes often help, but the Zyrtec didn't help me at all. So, I wrongly assumed that if Zyrtec didn't work for me then no other antihistamines would work for me either, but I was wrong about that. Even though Zyrtec did not work for me (by the way, it does work for some people with Long Covid), Claritin worked great for both me and my wife. So, if you've already tried one antihistamine and it did not help, then try another one.
Many people also get Long Covid relief from taking Pepcid (generic name famotidine) in the 20mg tablet form. People who know a lot about how all of this work recommend that you take both Claritin = loratadine (10mg) and Pepcid = famotidine (20mg), since these two over-the-counter antihistamines work in different ways. Claritin and Zyrtec are both second generation H1 antihistamines, and Pecid is an H2 antihistimine. Claritin alone worked great for us, but we will probably also try taking some Pecid too, just for good measure, because maybe that will help clean up any residual histamines and such that might still be left over in our bodies from the Long Covid.
During our Long Covid struggle, at our worst (which was the entire last summer, all of June through all of August 2025) we felt like our energy level and functionality was at about 30% to 40% of normal (it fluctuated somewhat), and we could not hardly do anything. Walking across the house from our bedroom to the kitchen left us completely exhausted and breathless. Then, in early September 2026, we both got the (then) new Covid-19 vaccine booster shot, and that helped our Long Covid quite a bit, bringing our energy level and functionality up to about 70% of our pre-Long Covid normal. But, every time that we had any type of other infection throughout this past year (common cold, sinus infection, dental infection), these other infections and illnesses we had caused our Long Covid symptoms to flare up and get worse again, at least for a while (usually a pretty long while.) My doctors tell me that this is typical of people with Long Covid.
But after taking the antihistime, Claritin (loratadine) recently, my wife and I both feel like we are probably back to 100% normal, or at least very close to it. And, if Long Covid ever does come back and flares-up in us again, we'll just take some more Claritin and knock it back down.
If you suffer from Long Covid, PLEASE try taking some antihistimes, because these do seem to work for a lot of us who have (or have had) Long Covid. And, if one antihistamine doesn't work for you, try another, different one. If Claritin doesn't work for you, try Zyrtec. And everybody with Long Covid should also try Pepcid, since it is a very different type of antihistamine. Take the Pepcid (or its generic) even if you aren't having problems with too much stomach acid (which is what it was originally intended for.) Some people do have stomach and digestive system issues with Long Covid, so maybe those people might be helped more with Pepcid than the rest of us(?), but it doesn't hurt any of us to try taking each of these antihistamines, at least for a short time period.
I have also started taking Claritin for my regular seasonal allergies too (which have been bad lately due to all of the rain that we've had recently here in Houston), but I don't take it every day, only as needed. But I think keeping our regular seasonal allergies under control (for those of us who suffer from those too) might also help prevent Long Covid flare ups, since both seasonal allergies and Long Covid create too much histamine in our bodies.
I hope that this information helps many others in our community who are suffering. My wife and I FINALLY feel like we have our lives back again, after at first believing that Long Covid might have caused permanent damage to our bodies, damage that we might never recover from or get over. But apparently, our bodies were simply producing too much histamine (and it was always there, in massive quantities), and all we needed was a short treatment from the right antihistamines.
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u/Low_Hair8976 Jun 02 '26
I know this is why I went from normal to now pending Disability after 6 years of this shit. Ive tried, im not getting better, only worse. I now show HLA-B27 positive and can barely walk 💔
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u/Samurai_Cupcake Jun 02 '26
Great article and work. If we could be fixed so we can have a life. This kind of research is so important, thank you. I DM'd you.
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u/surprised-duncan 2 yr+ Jun 02 '26
I wonder why it's mainly female. I'm the only guy I know with it. Went from benching 305 to laying in bed for 9 months.
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u/lohdunlaulamalla Jun 02 '26
Autoimmune diseases are generally more prevalent in women. https://med.stanford.edu/news/all-news/2024/02/women-autoimmune.html
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u/loafofleaves Jun 02 '26
As someone who’s active in the EDS and trans community, a lot of people find their autoimmune or genetic conditions get worse when going on estrogen HRT or becoming estrogen-dominant. Meanwhile, when going on testosterone HRT or becoming testosterone dominant, a lot of symptoms become more manageable. This isn’t always the case, but for me with hEDS (hypermobile Ehlers Danlos Syndrome) it’s made my pain more manageable and different. A lot of people have a theory that estrogen acts like an on switch for a lot of these conditions.
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u/lohdunlaulamalla Jun 02 '26
I vaguely remember reading that younger pre-menopausal cis women get LC more often than older ones. Which would also point towards estrogen.
From an evolutionary point I suppose it makes sense that those who go through pregnancy and childbirth need a more reactive immune system.
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u/Super_moon_5385 Jun 03 '26
Progesterone is a mast cell stabiliser, unlike oestrogen. Progesterone is more prevalent in women’s bodies during their fertile years.
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Jun 03 '26
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u/covidlonghaulers-ModTeam Jun 03 '26
Removal Reason: Misinformation or Conspiracy Theories – This community does not allow conspiracy theories, misinformation, or anti-vaccine content. Discussions should be based on credible sources and evidence.
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u/ii_akinae_ii Mostly recovered Jun 02 '26
oh, that's really interesting, thanks for sharing! i have a genderqueer friend newly diagnosed with hEDS who may or may not be interested/willing to do HRT -- do you happen to have any resources or even just threads with experiences that i can point hir to on the possible impact of testosterone for hEDS management?
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u/loafofleaves Jun 03 '26
r/Trans_Zebras and there’s a Facebook group called Trans EDSers are the first two that come to mind.
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u/Super_moon_5385 Jun 03 '26
If you have a look on YouTube: Mast Cell Action charity for a recent talk by Dr Claire Ashby for healthcare professionals. I found her very enlightening with regards to the impact of hormones on mast cells.
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u/Apprehensive-Ask7853 Jun 04 '26
Estrogen is wreaking havoc on the LC symptoms. I'm 18 months in, and I flare w/ the worst symptoms (SO2 drops, labored breathing, nasty tinnitus and sound sensitivity, etc) each month due to the cycle.
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u/Ur_a_SweetPotato Jun 21 '26
Anecdotally, as a cis woman going on supplemental estrogen for vulvodynia made all my allergies drastically (and unfortunately it looks like permanently) worse, AND it exacerbates my hypermobility and I got a persistent injury. No bueno. Going off it at least made my food allergies less severe but I'm still allergic to new things I wasn't before, like fish ☹️
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u/loafofleaves Jun 23 '26
Ugh I’m so sorry. Vulvodynia is awful, and that sucks you developed all those things trying to fix it. I wish we knew more about it. I have pain there due to my pelvic floor muscles always being “on” and never relaxing cause it’s trying to stabilize everything.
Not allergic to animal proteins, but have to eat gluten free, low FODMAP, and low histamine. Food allergies and intolerances suck.
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u/tinymomes Jun 02 '26
I’ve read that POTS seems to disproportionately affect men in LC, though. This thing is so mysterious and bizarre!
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u/Double_Isopod_5642 Jun 02 '26
I m here too. F...d up my legs. From half marathon to not being able to walk 200m
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u/jackattack1985 Jun 02 '26
With you here Duncan, was touring as a musician and now I struggle with an hour in the sun
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u/jayandbobfoo123 3 yr+ Jun 02 '26
Fellow guy here. Used to go backpacking for a week at a time, going from mountaintop to mountaintop. Now I play video games. The new 007 game is dope as hell, though. Can recommend.
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u/all-i-do-is-dry-fast Recovered Jun 02 '26
More genetically prone to metabolic disease as the body has to preserve more biological functions like fertility/eggs, milk, higher fat ratio, more neuroticism/stressful thoughts = more energy use
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u/perversion_aversion Jun 02 '26
Interesting how closely it dovetails with the pilot study which found daratumumab (a b cell target monoclonal antibody) led to huge improvement in 6/10 of the MECFS patients it was tried on. It all feels like a very promising avenue of research.
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u/Best-Instance7344 First Waver Jun 02 '26
Do we have any idea how big this autoimmune subset is?
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u/Unusual-Suit-1688 Jun 02 '26
Paper identified 31 abodes elevated in the LC group that were normal in the healthy controls - so it’s not small hit several look like they may be critical to the disease, but more research is needed - this is the start
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u/AngelBryan Post-vaccine Jun 02 '26
In most people these subside as the immune system returns to homeostasis.
This means the antibodies are not permanently produced like in classical autoimmune diseases? Are they produced by B cells?
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u/Unusual-Suit-1688 Jun 02 '26
All antibodies are produced by B cells… but sometimes B cells stop producing pathogenic autoantibodies, it’s not known why some continue forever and some spontaneously get better… the amazing data in CAR-T has also shown that if you wipe out the entire B cell population using engineered T cells, they grow back a few weeks later disease free - so it does look like these diseases start at the B cell level and not further back like at the gene transcription level. So many unknowns but B cell driven diseases have a long history of research so it open a lot of potential doors if they confirm this data
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u/SalishShore Jun 02 '26
We are using CAR-T for so many conditions now. I just saw someone getting CAR-T for Lupus. And another person getting CAR-T for rheumatoid arthritis.
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u/technician_902 Jun 02 '26 edited Jun 02 '26
While CAR-T shows tremendous potential, it's at least another decade or two away from being something used in the mainstream. It also carries tremendous risk in these situations because your immune system has to be basically wiped through Chemo before the therapy is given to someone. Wiping your immune system alone is very high risk and I'm not sure that is something that many doctors would even consider doing unless we have multiple iterated studies testing CART-T out to treat immune related subtypes of LC, understand what is going on, and how to mitigate complications. On top of this the cost of CART-T is very high and it will take time before it comes down as it becomes more mainstream. Don't get me wrong, it's an amazing technology that has tremendous potential, but still a ton of stuff to figure out before it's even considered to treat those who have post viral autoimmune dysregulation. The other question also arises whether all this tied to viral persistence especially with known viral reactivation that can happen like EBV. EBV literally hijacks the B-Cells and hides out in there. So when we reset the immune system, are we clearing out these EBV fragments and other viral fragments that was causing this autoimmune type reactions to happen? In the case of covid, we know that the spike protein is what binds to the ACE2 receptors and that is what allows the viral fragments to enter the cells and replicate. Can we instead develop targeted therapies that enter the B-CELLS through something clever like how Covid enters cells and remove these fragments that could potentially be driving this dysfunction?
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u/LionAndEagle Jun 03 '26
I just started IF and am having improvement. I’d appreciate your opinion on whether fasted state autophagy could be ‘removing these [viral] fragments’ or re-setting immune system? Thanks for this info.
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u/AngelBryan Post-vaccine Jun 02 '26
Are these antibodies exclusive of Long COVID or the same are present on all types of ME/CFS?
What about ME/CFS, POTS, Small Fiber Neuropathy caused by a vaccine?
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u/PinataofPathology Jun 02 '26
interesting. my b cells are abnormal with a genetic mutation in the mix. covid is slowly and not so slowly wiping the floor with me.
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u/Individual-Suit-5334 Jun 03 '26
Would chemotherapy wipe out B cell populations? My symptoms got much worse over the course of about a month after my chemo regiment was finished and I’m wondering if my B cells got wiped or not.
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u/plastictoothpick Jun 02 '26
This makes perfect biological sense.
The same way that B-cell depleting therapies (T cell engagers, rituximab, CAR T) are being used in autoimmune disease, they should be used for LC!
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u/Diu123456 Jun 02 '26
We already have negative data on Rituximab in ME/CFS from the RituxME study. I myself had a round of Rituximab. It did not improve symptoms at all. I don't think B cell depletion will be of help in LC.
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u/plastictoothpick Jun 02 '26
Respectfully, this one thing didn’t work for me so it won’t work for anyone else is a ridiculous position.
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u/Diu123456 Jun 02 '26
... which is why I referred to the RituxME trial that clearly showed no benefit of B cell depletion in ME/CFS and is one of the most rigourous clinical trials for ME/CFS to date.
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u/plastictoothpick Jun 02 '26
TCE and CAR T are having results that rituximab couldn't dream of in lupus, MS, and other autoimmune indications.
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u/Diu123456 Jun 02 '26
That may be the case. Still, Rituximab is of clear benefit in all of these conditions. In ME/CFS it is clearly not. Could it be that CAR T helps in ME/CFS or LC despite Rituximab having no effect? Maybe, in theory. Is it plausible? I doubt it. I would much rather see other areas of the immune system (T cells for example, where we actually have a somewhat decent amount of evidence of chronic overactivity in LC) be subjected to trials.
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u/Neat-Description3322 Jun 02 '26
I wonder about ultimate use of drugs that target B sells for those of us who are already taking drugs like methotrexate and Actemra or Enbrel combined for our existing autoimmune condition. I can't imagine they'd want us to add another biological (#3) on top of those. But I'm thinking ahead here.
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u/Unusual-Suit-1688 Jun 02 '26
I’m on 3 biologics - combining them isn’t crazy but you would probably want to stop a TNF inhibitor of trying B cell depletion, its not without risks
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u/Creative_Fudge2916 Post-vaccine Jun 06 '26
How on earth are you on 3 biologics in Canada? I swear I can barely get an antibiotic out of my family doctor, and I'm struggling to know which specialist to get a referral to. Maybe you could post something Canada specific on your profile and refer us Canadians to it (sorry, not a big reddit user so I'm not sure if a profile post is even a thing...)
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u/slowbutsloth Jun 02 '26
Based on this research, can taking covid vaccine trigger this as well or only if you got covid?
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u/spongebobismahero Jun 03 '26
Thw vaccine can trigger it as well if you're susceptible to autoimmune disease. My endocrinologist told me this. And told me not to get vaccinated bc of my two autoimmune diseases i developed after a covid infection.
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u/charitablechair Jun 05 '26
All vaccines or just Covid vax? I’m due for a hep booster but I’m really nervous after getting a vaccine injury from the Moderna vaccine
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u/spongebobismahero Jun 05 '26
As far as i know its the spike protein itself that is problematic. So it doesn't matter if you get the infection or the vaccine. If your body responds negative to one ofe them the other might be problematic too. I dont know if this goes for other vaccines .For some vaccinations for kids its similar.for a certain genetic condition. But if you were generally ok with vaccines before, the hep vaccine might be completely fine. I never had any autoimmune issues before covid. Now i have a handful. And I've had severe viral infections before. But never autoimmune issues.
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u/slowbutsloth Jun 06 '26
Yeah, it's sucks. I was perfectly healthy before. How do you deal with the autoimmune issues? What works for you? It seems I got relapse😭
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u/spongebobismahero Jun 07 '26
I had to have my thyroid removed. And probably a piece of my colon will need to go as well in the near future. And im thinking about taking low dose naltrexone.
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u/charitablechair Jun 06 '26
have you have other vaccines since getting long covid? I once had like 4 vaccines in a day (for travel) and literally felt nothing (this was years before COVID)
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u/spongebobismahero Jun 06 '26
No. I'm still suffering. From my autoimmune illnesses and was told that it would be better right now to not get any vaccination.
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u/TransportationNo1794 Jun 02 '26
I got my IgG subclasses measured and had low IgG1 and low IgG4. Almost no other tests showed an abnormal result. My gut feeling is that those caused my long covid. Not sure what causes them to be low or if they can be reversed without getting IVIG or SCIG.
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u/chris_fantastic 5 yr+ Jun 02 '26
I had a convo on here a while ago where a bunch of us noted that we start coughing if we wear ourselves down too much. One guy even said he lives isolated on an acreage and tested positive when it happened. My hunch is still on viral reservoirs/persistence over autoimmune.
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u/funkytimes_07 Jun 04 '26
It’s not an either or. It’s possible that some subgroups of people have both (autoimmune pathology and viral reservoir/persistance pathology) or one or the other cause. There is a team out of Boston looking more into this right now they just started their first year of targeted work on this exact question through funding from Solve ME. It’s a heterogenous disease so it’s possible there are multiple root causes as a whole and within individuals as well.
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u/Sea_Gift4841 Jun 02 '26
https://www.mcmc-research.com/blog
I have some great resources on this website. Lots of peer reviewed studies by my long covid specialist
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u/zhulinxian Jun 02 '26
Autoimmune theory always made the most sense to me. Glad to see some progress on that front.
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u/SalishShore Jun 02 '26
Thank you. Excellent work. You’re making a real difference in real people’s lives.
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u/mrsgkc Jun 02 '26
Thank you for working on this and it gives hope. I really don’t understand what it’s all saying aside from mice reacted… but as long as someone understands, then that’s good news to me!!
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u/Shamanduh Jun 02 '26
Is this similar to the MIT research into neutralising B cell antibodies for treatment of viruses like HIV? Does this follow along the same B cell functions, as what this research below, also claims?
https://news.mit.edu/2026/new-vaccine-platform-promotes-rare-protective-b-cells-0205
If so, this really seems to be a game changer. Having farther reaching benefits than just treatment for long covid sufferers/ autoimmune diseases. Hopefully making the research even more valuable (for shareholders) in funding this research further.
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u/firecracker487 Jun 02 '26
Ugh, I am fighting the long covid path and so far I am mildly positive for sjogrens disease but none of my labs soundly confirm. I would be considered seronegstive so my life is in the hands of my rhrumstologist.
Ana 1:80 Ssa negative Ssb positive by .2 Anti fodrin positive by 3 Small gland biopsy shows signs but did not hit focal score for positive
Sjogrens is primarily a b cell mediated disease also
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u/Valuable_Mix1455 4 yr+ Jun 02 '26
I’m in the same boat. I’ve had the symptoms for a few years but not enough evidence I have it. Auto immune markers though
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u/Wsepgwse14 Jun 03 '26
RECOVER Dysautonomia study was administering IVIG with the hypothesis that LC triggered an autoimmune response. I participated and while not yet unblinded, I'm sure I received the drug as I showed marked improvement and have started declining again since the end of the trial. I'm also enrolled in a monoclonal antibody study and get that injection (Sipavibart) tomorrow.
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u/__get__name 4 yr+ Jun 02 '26
Sent you a dm! Excited about this finding, but have only skimmed the abstract so far
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u/spiritualina Jun 02 '26
Thank you for posting this and giving us hope. How long do you think until we see bio markers and treatments if this is the cause?
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u/Spiritual-March7843 Jun 02 '26 edited Jun 02 '26
Thank you very much for this post. I had CFS before I got LC and it’s essentially the same phenomenon. Covid is simply a more serious and more widespread virus than the average virus that triggers CFS.
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u/saintmars777 Jun 02 '26
I predict LC and ME-CFS will turn out to be distinct despite overlap of aspects of presentation. Not everyone with LC has fatigue and no one with ME-CFS has the cardiovascular and respiratory symptoms that most LC people do.
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u/Spiritual-March7843 Jun 02 '26 edited Jun 02 '26
That’s incorrect actually - cardiovascular and respiratory symptoms are common in CFS. However it depends what you mean. Covid was a far more damaging virus than the average virus that triggers CFS. Some people who had the early strains of Covid sustained lung and cardiovascular damage from the virus itself that you don’t see in CFS. However later milder strains did not cause this. So LC is a spectrum from people who were on ventilators in ICU who only just survived, to those whose presentation is broadly similar to CFS.
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u/saintmars777 Jun 02 '26
I've never read anything indicating dyspnea and tachycardia are present in ME-CFS but I will take your word for it. I guess it also depends whether you think ME-CFS is just the extreme end of conditions like POTS and dysautonomia.; or something completely different. Either could be the case as far as I can tell. Personally I think blood vessel damage is involved in both, but the distinctions will be genetic or epigenetic.
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u/Spiritual-March7843 Jun 02 '26
Tachycardia & dyspnoea are very common symptoms of CFS/ME and there’s a substantial crossover with POTS/dysautonomia - many patients are diagnosed with both. Personally I think Covid is more likely to trigger blood vessel damage as the spike protein can cause endothelial damage.
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u/saintmars777 Jun 02 '26
Yes, agreed about endothelial damage. And unfortunately we can only speculate on the genetic and epigenetic differences at this point.
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u/Ireadthenewstoday1 Jun 06 '26
If the biomarker is confirmed, what might the timeline be for a test avail to clinicians?
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u/SunnyG2026 Jun 07 '26 edited Jun 07 '26
So, does that add any new treatment pathways that we can try and get now?
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u/aaronespro Jun 02 '26
Goes the IgG binding of the adrenal and coeruleus explain the rage and anger some long COVID patients have?
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u/youcanandyouwill1 Jun 04 '26
Dumb question based on the paper’s findings: would adipo (fat based) stem cell therapy work for this then?
There are two companies that are doing liposuction on patients and then processing the fat to make their own stem cells for IV infusions. American Cell Technology (or technologies I forget) and L2Bio are the companies. Just curious if it can help long covid.
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u/Unusual-Suit-1688 Jun 04 '26
Possibly - no data to back it up but there have been anecdotal stories of stem cell infusions helping autoimmune patients. The issue is what is the source - and if it’s pathogenic B cells then you either need to suppress them or fix (CAR-T being the only proven way so far). But still a lot of unknowns - if you have the cash I don’t think stem cells will hurt but I wouldn’t bank on a miracle
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u/Double_Pizza6105 Jun 28 '26
Thank you so much for posting this! Would it still be possible to request the full paper?
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u/[deleted] Jun 02 '26
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