Yesterday, I had an interaction with a doctor on Reddit that reminded me exactly why so many long COVID and ME/CFS patients end up traumatized by the medical system. I want to share it because it’s important for people in this community to understand that some of the worst gaslighting doesn’t just come from doctors in real life. It happens here too, in spaces where sick people come for help.

The OP in r/LongCovid simply asked:

>What doctor diagnosed you? They listed neurological issues, gait problems, NSVT, bradycardia, headaches, exhaustion, and memory issues that developed after their second bout of COVID. Not a single doctor had suggested long COVID. They didn’t even know it was a possibility until a friend mentioned it.

A doctor responded with false information. They said that doctors don't know what long COVID is. They told OP:

>A diagnosis won't direct a treatment that will fix things with this, and is functionally moot right now. Until and unless the researchers figure out what causes it and how to fix it.

That’s not only wrong, it’s dangerous. It’s exactly the kind of statement that keeps long COVID patients undiagnosed for months or years and makes them feel dismissed.

I replied with factual information. I explained that long COVID has diagnostic equivalents like Post Viral Fatigue Syndrome (PVFS). I explained that ME/CFS is often triggered by a post viral illness like COVID. I linked the systematic review showing that 51% of long COVID patients meet criteria for ME/CFS. I shared links to medications that are prescribed off-label for long COVID/ME/CFS and ME/CFS treatment guidelines. I shared my own story of being misdiagnosed with anxiety for almost a year before being diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, and MCAS.

I explained that my symptoms started immediately after COVID. I wasn’t believed for months. I’ve had to diagnose myself, advocate for myself, research my own symptoms, and fight my way into proper testing and referrals. Everything I have now is because I refused to accept being dismissed.

I commented:

>Doctor, nothing against you or your comment. But, your statements don't reflect the thousands of people's experiences who I've talked to and read about in the last two years. Please don't attempt to minimize or dismiss our actual lived experiences which include medical neglect, failure to provide proper medical care and attention, and even throwing sick people out of ERs or into psych wards.

The doctor’s response to this:

>As for ERs... ERs are for emergencies. Not chronic conditions, of any kind. It's not medical neglect to not be treated in the ER if you're not imminently going to die. Neither is not being told exactly what you want to hear. Or not handed a quick fix. Or not being told you're right when you're not.

This kind of dismissal is exactly what patients experience daily. People with long COVID/PASC, dysautonomia, MCAS, non-diabetic hypoglycemia, pulmonary and respiratory issues, ME/CFS, etc can and do face life-threatening crises and be treated as if their conditions aren't urgent. Miscommunication, minimization, or outright dismissal can be deadly.

This doctor didn’t even acknowledge that my comments were based not only on my own lived experience, but on talking to thousands of patients and reading their stories of medical neglect, misdiagnosis, and failure to provide proper care. That collective knowledge is what shaped my advice to the OP. Ignoring it shows exactly why so many patients feel dismissed and unsafe sharing their struggles.

This doctor’s response was to twist everything I said. They ignored every factual point. They said my lived experience doesn’t matter. They acted like I was attacking them simply because I corrected misinformation. They didn’t address the treatment resources I shared. They didn’t address the medications being used off-label. They didn’t acknowledge that long COVID patients are being abandoned in real time.

Instead, they insulted me. They called me unhinged. They said I “aggrandize myself as a savior.” They accused me of going on a “vitriolic rant” because I replied in multiple paragraphs. Anyone who uses Reddit knows that detailed responses are for the OP, not one random commenter. It’s normal to give extra info when the OP desperately needs it.

They deleted all their comments the moment I responded with facts they couldn’t refute. Then they accused me of “driving them away” from the community. As if correcting misinformation is an attack. As if pointing out gaslighting is violence. As if patients are responsible for a doctor’s inability to handle being disagreed with.

‼️Here’s the truth: We’ve been dismissed for years.

❌️We’ve been told it’s anxiety.
❌️We’ve been told there’s nothing wrong.
❌️We’ve been misdiagnosed.
❌️We’ve been thrown out of ERs while unstable.
❌️We’ve been laughed at, minimized, ignored, or punished for being sick.

Long COVID patients are suffering because the medical system failed us. Many of us are suffering because individual doctors failed us. And when someone comes to a support sub desperate for answers, it’s dangerous for a doctor to tell them long COVID isn’t real, doesn’t matter, and has no treatments.

This is a warning to everyone here: There are doctors on Reddit who are helpful. But there are also doctors, and people pretending to be doctors, who will gaslight you just like the ones who dismissed your symptoms in real life.

❌️If someone tells you long COVID isn’t a diagnosis, it’s false.
❌️If someone says treatment doesn’t exist, it’s false.
❌️If someone dismisses your lived experience, it’s false.
❌️If someone gets defensive when asked to consider patient evidence, that’s a red flag.

Patients aren’t making this up. Patients aren’t attacking anyone. Patients are fighting for the right to be believed, treated, and helped. When we correct misinformation, we’re not being “mean.” We’re trying to save lives.

I’ll never apologize for advocating for this community. I spent 17 months 95% bedridden, in pain, dismissed, and gaslit. I’ve fought for every diagnosis I have. I’ve helped hundreds of people in these subs find doctors, get testing, and figure out what’s happening to them.

And I’ll keep calling out misinformation when I see it.

People come here to get support. They come here because they’re scared, confused, and abandoned by a system that still refuses to acknowledge the severity of long COVID. They deserve better.

---

TL;DR

A doctor in r/LongCovid told an LC patient that long COVID “isn’t a real diagnosis” and “doesn’t matter” (“A diagnosis won't direct a treatment that will fix things with this, and is functionally moot right now. Until and unless the researchers figure out what causes it and how to fix it.”). When I corrected their misinformation with facts, they insulted me, called me unhinged, said I think I’m a savior, deleted their comments, and claimed I “drove them away.” They even dismissed medical neglect in the ER (“As for ERs... ERs are for emergencies. Not chronic conditions, of any kind...”). They also ignored that my comments were based on thousands of patients’ lived experiences of neglect and misdiagnosis. This interaction is exactly why long COVID and ME/CFS patients don’t trust the medical system. Patients deserve better than dismissal, defensiveness, and misinformation, especially from people claiming to be doctors.

Update 12/10: I unsubscribed from r/LongCovid this morning.

https://preview.redd.it/gd2xc5o42tah1.png?width=1590&format=png&auto=webp&s=5982e53a89592906d9d44e20cfecf97c5ba544a7

The attack started a week ago and continues today.

The website is working now (if you have javascript enabled) - https://www.longhaulwiki.com/

But...

We need honest advocacy- and it's really expensive

I've been very critical of bad actors among researchers, doctors, advocacy groups, support group moderators, multi-level marketing targeting sick people, etc. All of these things get in the way of a cure and get in the way of better patient outcomes. The current reality is that the scientific literature is full of treatments that don't actually work. The authors say that their treatment works but they can't all be right. Because of that, it's difficult to do any kind of evidence-based medicine if most of the scientific literature is filled with junk.

All of this is difficult to fix because a lot of the bad actors will fight you.

I have Facebook DMs of somebody threatening me with physical violence because of what I said about a MLM scheme.

Does anybody have ideas? Sick people deserve a cure. Should we just raise lots of money into an honest advocacy venture?

Background

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition with limited treatment options and inadequate healthcare structures worldwide. We assessed the effectiveness of an integrated care model specifically adapted for ME/CFS.

Methods

In this prospective, open-label, non-randomized controlled intervention study conducted at Charité Fatigue Center we enrolled patients with ME/CFS between 2022 and 2023. Participants in the intervention group received multidisciplinary specialist assessment, comprehensive clinical management, and tailored inpatient rehabilitation, while the control group received a single outpatient consultation and a medical report for their primary physician. Primary outcome was change in physical functioning, measured using the SF-36 physical functioning subscale, at 12 months. Secondary outcomes included disability, symptom severity, quality of life, handgrip strength, and steps per day.

Results

89 intervention and 93 control participants were included in the per-protocol analysis. At 12 months, no statistically significant difference in SF-36 physical functioning scores was observed between groups. Secondary outcomes also showed no substantial between-group differences. Inpatient rehabilitation was completed by all participants who initiated it. Most participants reported that rehabilitation was helpful for learning disease management strategies, and for coping better with daily life. Post-rehabilitation Bell Disability Scale scores decreased in 42/94 (45%) and increased in only 13/94 (14%) patients.

Conclusions

The integrated multidisciplinary care model was feasible and associated with high retention but did not improve physical functioning or key secondary outcomes at 12 months. Current rehabilitative and management strategies may be insufficient to alter disease trajectory, underscoring the need for more effective, disease-modifying therapeutic interventions

Mecfs science thread - https://x.com/mecfsskeptic/status/2071862412727271662

this rehabilitation approach wasn't based on graded exercise but on pacing and learning to cope with the disease. It also included physiotherapy, relaxation-based interventions, pharmacological treatment and specialist diagnostic assessments.

It seems that this approach didn't work well. The primary outcome was physical function on the SF-36 scale. Patients receiving rehabilitation started with a score of 40 and after a year they declined to a score of 36, worse than the control group.

Similar results were seen on other outcomes. Handgrip strength slightly decreased. Step count remained the same around 4500 steps per day. Scores on the Bell Disability Scale decreased in 45% and increased in only 14% patients.

So what happened?

The authors write that patients found the management strategies helpful but that most "reported a temporary worsening either due to the travel to the rehabilitation facility or due to participation in the rehabilitation program itself."

The paper concludes that: "Given the risk of PEM which may be triggered already by travel to the rehabilitation clinic and the general exertion involved, the value of rehabilitation for patients with ME/CFS should be critically re-evaluated.

They also stated that severe patients (Bell score < 30) "should not be required to undergo rehabilitation. This is especially relevant given that participation in a rehabilitation program is often a prerequisite for eligibility for disability pension in Germany."

This is probably the main conclusion of the trial: multidisciplinary rehabilitation, even when when based on pacing designed for patients with post-exertional malaise, often doesn't work, it doesn't improve physical function and its value should not be overstated.

I have ME/CFS and POTS. And I can't listen to the comparisons anymore.

It's not the fatigue that disappears with coffee and 8 hours of sleep.
It's waking up after 10 hours of sleep feeling like my body ran a marathon.
It's a heart rate of 136 after getting out of bed.
It's a bus ride in the heat that leaves me out for two days.

And let's add to that, I constantly hear comparisons to what others are familiar with...
"I'm tired too," "get some exercise," "you need to motivate yourself."
They never imagined what it's like to be tired despite sleep, despite medication, despite trying.

And just hearing all of this...
everything my head perceives, I perceive as pain. Physical pain.

It's not laziness.
It's not a lack of motivation. It's a disease you can't see, but it destroys your entire life.

I wish I had "normal fatigue." I would honestly give anything for it.

Anyone else know this?

I know this happened years ago but it’s something that I just feel like I can’t seem to be able to get over.

I had a really bad reaction to the Covid vaccine. About six hours after the first dose of the Moderna vaccine, I felt high. The high was amazing. 10/10. I never felt better in my life. Then at midnight came the +40 C fever, hallucinations, physical pain so bad I was screaming, swollen lymph nodes, and two fingers on both hands going numb. The next day I couldn’t remember how to do things. Like I couldn’t remember how to brush my teeth. How to get dressed. How to type. How to play video games. I remember starring at the toothbrush and toothpaste like an idiot not knowing what to do. Despite knowing that I had done it thousands of times without even thinking about it.

Like in order to be able to do anything, I had to pay 100% attention to the thing that I was attempting to do. Otherwise disaster would happen. I would poke myself in the eye with the toothbrush instead of getting it into my mouth. Or get tangled in my clothes, etc… And since paying attention 100% of the time for tasks that should be automatic is very difficult, disaster happened all the time. And that’s for tasks that I could replicate by thinking about them. Things like typing properly or gaming or writing I was not able to replicate. Because I have no idea how to consciously guide my hands to do those things. I was only able to do them once memory kicked back in. And then there were things like cooking that I didn’t even attempt to do due to being too scared of screwing up and harming myself.

My hands also felt a lot weaker than usual, and I also had severe headaches that would come and go whenever they pleased. Usually, I only had a headache around one time a year. After about two weeks everything cleared up. My hands almost went back to normal again.

I thought what happened to me wasn’t just improbable. It was impossible. This is the type of story conspiracy theories are made of. I decided everything that happened must have been a coincidence. It had to be. I told my doctor about what happened, and he also thought it was a coincidence. My mom even asked before I got the second dose, “you do realize it will happen again, right?”
And I said, “Don’t worry it was a coincidence. It won’t happen again. Correlation doesn’t mean causation” (God. How much do I now hate that phrase).

So I, being an idiot, got the second dose. And the exact same reaction repeated again. It was like “copy and paste” from the first one. With the high, followed by the fever, hallucinations, physical pain, etc.. followed by me forgetting how to use my hands. Only this time around, it took me about a month to completely remember how to do things (although the first two weeks were the worst). And over a year and a half for the headaches to completely go away. I also felt fatigue, had trouble concentrating, slept for over 16 hours a day at one point, had hallucinations, and would feel cold (usually together with the headaches). I would have hallucinations where I would look at forks and see spoons or look at my brother and see a stranger. I also would have those episodes where the world around me would turn into cubes and break on itself. I also would feel dizzy and nauseous from time to time but that was more rare. Although at that point it was hard to tell if all of that was being caused by the vaccine or the medication I was taking to help with the headaches (my doc had prescribed Clonazepam and clomipramine hydrochloride). I have now completely recovered. At least I hope I have completely recovered.
I still am worried it might rear its ugly head. Whatever “it” was. I don’t even know what “it” was.

To me it didn’t feel worth it. If I knew with 100% certainty it would have happened to me, I would have not chosen to get it done. I would have chosen to isolate myself instead and not gotten sick with Covid that way. Social isolation would have been way better than that Hell I lived through. (I’m saying this because “well… it was better than Covid” is an argument that everyone kept on telling me and it’s just getting very annoying because I really don’t care.) But I didn’t know what would happen. Or I guess after the first dose I did, but refused to accept reality. Because reality was just way too painful for me to accept. I also felt angry at myself for wasting so much time bitching, moaning, and complaining about things that were within my control to change. I had two perfectly working hands and a brain. I could have actually done things to fix my situation in life instead of just complaining how I suck at everything.

The worst part about it was that I felt like a slave to my own biology. If my body didn’t want me to go to sleep when I wanted to, I would have a headache. When my body didn’t want me to wake up when I wanted to, I would have the attention span of a goldfish and would be forced to go to sleep. If my body didn’t want me to wear what I wanted to, I would feel way too cold or warm and hence would be forced to change into something else. I felt like my body was running my life. My doctor insisting on trying lifestyle changes made this feeling way worse. After about two weeks of all of that, I didn’t want to go on living anymore. Not like that. I decided that had I not seen enough progress within six months after the second dose, I would kill myself. I had the exact date in mind and everything planned out. It’s really weird to remember. The second that I made that decision, I did not feel scared. Or angry. Or upset. Or anything else anymore. I just felt at peace. I stared into the abyss and found it comforting. My suffering being over in six months one way or the other was the only thing that could comfort me.

Socially, I feel like a heretic. Half of my friends think I’m crazy. And the other half are actually crazy. I’ve been called a lunatic, told that I should move to Florida “to live in my natural habitat with the anti vaxers”, and of course there are the classic “what will you do if you got beaten by a racoon?” jokes. These weren’t just random people online. Those were my friends. Or I guess people that I assumed were my friends. I knew most of them for years. And I couldn’t even be angry at them because I used to make the exact same jokes. When I had no right to make them. I now am forced to have empathy, compassion, and understanding for people that I used to hate.

I also was ignored by medical professionals. Some doctors did agree that what I was experiencing was real and that it was from a vaccine. But they said contradictory things. One said it was small fiber neuropathy and that my immune system started attacking my nervous system due to mRNA/LNP. He also did a half ass attempt at trying to treat me. And by a half ass attempt, I mean he took 10 minutes to look at my hands and then prescribed some vitamins, to which I ended up with an allergic reaction to. And didn’t run any tests. When I called him and said that I was screaming in pain, he also said “it’s normal. It’s just your immune system working” and didn’t give me the right pain meds on time, which is really the least he could have done. (To be fair he did said he would refer me to a specialist as far as my hands went but by the time he got around to that, they have gotten better on their own).

Another said it was long covid due to the spike protein. None of those doctors had any real clue on how to help me though. I got a brain MRI about a month later (which I paid for out of pocket because otherwise I would have s had to wait for a year) after the second dose which was clear and I also had a general blood test done, which also came back clear.

Other doctors also said that I was lying, I wouldn’t be able to prove anything, it was all in my head, it was anxiety (which to be fair, I was freaking out when this happened to me but I feel like not freaking out under the circumstances would have been unusual). That it was caused by me reading too many conspiracy theories and my mind manifesting it. One doctor said that I should “travel, party, and get drunk.” I was prescribed Clonazepam and clomipramine hydrochloride, which looking back at it didn’t do anything to help.

I somehow managed to recover and I have no idea how. My best guess is time and an insane amount of luck. I now am constantly scared that my body will stop working. And that I will run out of time. That I will fail to use the second chance I’ve been given wisely. Whenever I feel any numbness in my leg or hands or when I accidentally miss click while gaming or when I find some random objects to be too heavy, I start freaking out. That I’m sick with something extremely serious and that this time I will not get a third chance. I constantly feel like I’m on borrowed time.

I’m also scared of vaccines. Whenever I read in some study that they “generate a robust immune response”, I automatically think “that’s a terrible idea that will go horribly, horribly wrong. Run. Run for the hills.”
I haven’t had most of my childhood vaccines done (my mom pick and chose) and wanted to finish the schedule after Covid. Me wanting to prove her wrong and shove it in her face was a major motivating factor but instead I managed to prove her right (in the narrative sense not scientific one). But now I’m way too scared to do that (maybe one day I will get over it but that day will not be today). I can’t think of them as safe no matter how hard I try or what the statistics say. And it feels like blasphemy for me to admit it. My doctor recommended for me to get the booster for Covid (the J&J one). I googled adverse events, came across an article about some poor guy being paralyzed, decided that would be my fate with my bad luck, and declined it. I have no idea if it would have harmed me or not but I was way too scared to find out.

I now have recurring nightmares about being vaccinated against my will while I try to tell the doctor and nurses to stop and that they will hurt me. But they refuse to listen and proceed anyways. And then I end up being paralyzed due to the vaccine. And then I die in the snow. It’s always snow and always peaceful. I feel embarrassed about it. I mean, I’m an adult. I shouldn’t be scared of vaccines.

I used to love science and I feel like this isn’t me. I was excited about mRNA tech (I viewed it like sci fi magic) and really wanted to take the Covid vaccine. I feel like I’m not allowed to love science anymore or look towards it for hope. At least that’s what a lot of people told me.

I now feel like I’m being anti science. And like I became the person that I used to hate. I now just can’t look at them as routine no matter how hard I try. I feel like this isn’t me. When I read studies about vaccines or new clinical trials, I feel either fear, dread, anger, or guilt. And I hate this. I hate it so much. It keeps me awake at night. I feel dirty, impure, like I’m a biohazard. Like I’m turning into my mom. Like I don’t have the right to learn anything math/stats/science related until I get all of them done. Like I should call my doc, apologize for saying no to the booster, and get all of them done.

I remember I got harassed by the school nurse growing up. And parents of other kids said they didn’t want kids who were unvaccinated around their kids. They didn’t know I didn’t had all my vaccines done. But if they did, I know they wouldn’t want me around. This was way before Covid. It made me feel like what did the nurse want me to do? She did this for years. Like I even tried to go behind my parents’ back when I was 18 but the doc said she felt uncomfortable to do it without my parents’ consent.

l disagreed with my mom and she also had some wacky beliefs as well. Like she was a creationist, etc… and I wanted to be nothing like her. Most of my friends were pro vaccines and I made fun of anyone who claimed that they had a bad experience with them. Also times when I tried to show some nuance or some sympathy for them, my pro vax friends made it clear I was in the wrong so I doubled down on the jokes. And when the point came that I had my own money, it was Covid and so I decided to start with the Covid one and then get all of the other ones done that I had missing (my mom did gave her agreement to the Covid vaccine due to the pandemic and also how highly I spoke of the vaccine before getting it done). And then everything went wrong. And now I feel like my body and my blood is impure due to me being more likely to carry some disease.

Hi all! I'm back to celebrate the one-year anniversary of my recovery from Long Covid (ME/CFS, dysautonomia, mast cell disease, etc). If you missed my recovery story, here it is: This week marks 6 months of 100% recovery : r/LongHaulersRecovery

The tl;dr is that I watched a Dr. Sarno video on TMS and had a conversation with a personification of my Long Covid, which I visualized as a snake wrapped around my brainstem while I was really high a few years before. I explained to it how much it was hurting me and asked it to let me go, and it listened.

I've maintained my wellness by journaling (shoutout to Nicole Sachs), trauma release exercises, EMDR, and an uncomfortable amount of introspection. For the first time in my life, I actually believe that I am in the driver's seat of my body.

I'm generally in the Cell Danger Response camp of ME/CFS. I will never know why I was sick, what was happening in my body, or why talking to an imaginary snake made it go away. BUT, it did, and I'm here to share the good news that I made it an entire year without PEM. IMy hypermobility is much better too. My baseline pain level is a 0, which hasn't been the case since... childhood?

I dealt with really severe anxiety, panic attacks, and night terrors for the first 9 months of my recovery. I'm happy to report that over the last couple of months, this has largely subsided. I credit it to EMDR and some absolutely feral trauma releases. I don't get riled up as easily. Irritations roll off me more readily. I don't ruminate as much, and I don't worry about perfection anymore.

I got COVID over the holidays and had some symptoms flare up for a few weeks. Not PEM or severe fatigue, but some autonomic stuff and a few allergy symptoms. I recovered smoothly. With it in mind that Long Covid happens when the sickness cycle doesn't complete, I drew a bunch of circles throughout the days and did yoga routines that start and end in the same position. I also accepted that I couldn't strong-arm my way out of being sick, and that I had to just let go of control and allow it to do its thing. Weird, yeah, but it worked; that's been the case for pretty much everything else I've done.

I'm tapering off of levothyroxine for my idiopathic hypothyroidism that onset while I was sick. So far, so good.

I had some (probable) mast cell issues before COVID, and those have flared up on 3 occasions over the last year, but they quickly returned to my baseline of no symptoms. I don't have to restrict my diet at all. I continue to take Xolair because sometimes physical and emotional stressors can flare up symptoms. It's infrequent and still profoundly less problematic than it ever was before I got COVID, but I like having the guardrails. Xolair doesn't prevent reactions, but it blunts the severity of symptoms. It's not the reason I'm in remission. It just makes my life a little less bumpy, and also I love that I don't have seasonal allergies, so anyone can pry it out of my cold dead hands.

I'm re-reading The Mindbody Prescription by Dr. Sarno this week. I like having the reminders and it's kind of a comfort book at this point lol. I also got a celebratory fro-yo with a grotesque amount of toppings because that was one of the things I was most excited about being able to eat again last year.

I'm doing great :)

ETA: Please ask your questions in the comments here! I love y'all but I get the same DMs over and over lol it's just more efficient if one person asks and then everyone else with the same question can read my answer!

Results at a Glance

• Polarizing results: 53% improved, 20% no change, 28% worsened
• Brain fog (44%), fatigue (37%), exercise tolerance (27%) most commonly improved symptoms
• Top side effects: nausea (30%), constipation (20%), post-dose fatigue (19%)
• POTS subtypes fared worst: 46% improved, 32% worsened - while GI and MCAS patients both saw 60% improvement
• Severe patients were the least likely to improve (35% vs 58% for mild) and most likely to worsen (40% vs 25% for mild)
• Tirzepatide: 3x more “very much improved” outcomes than Semaglutide
• Most improvements noticed within 1–2 weeks of starting or dose-increasing

Highlights

•Long COVID features autoantibodies targeting neural and vascular tissues

•Patients’ IgG shows increased ADCP activity against MED20

•Passive transfer of IgG induces pain and fatigue-like phenotypes in mice

•Mouse pain behavior after IgG transfer correlates with patient-reported chronic pain

Summary

Acute SARS-CoV-2 infection triggers the de novo production of diverse, functional autoantibodies (AABs) that remain elevated in long COVID (LC), but their pathogenic role remains unclear. Using tissue-based immunofluorescence, ELISA, human protein array, and mass spectrometry assays, we identified a broad range of AAB targets among individuals with LC. Individuals with neurocognitive symptoms showed increased AABs against central nervous system (CNS) and peripheral nervous system proteins. Purified immunoglobulin G (IgG) reacted with human locus coeruleus, thalamus, adrenal gland, and thyroid and cross-reacted with mouse sciatic nerve and meninges. CNS-reactive AABs correlated with several neurological symptoms. MED20-targeting IgG from patients with LC showed enhanced antibody-dependent phagocytosis. Passive transfer of IgG from individuals with LC into mice induced fatigue-like behavior, loss of balance/coordination, thermal hyperalgesia, small fiber nerve damage, and increased pain-related neuronal activity, recapitulating patients’ symptoms. These findings suggest that targeting AABs might offer therapeutic benefits for this LC subgroup.

Yale article about the study

Yale study links some long COVID patients to autoimmune responses | Yale News

Kristi Simmonds and two other medical professionals appeared on The Highwire ep 226, speaking about their vax injuries. The three women were able to get the vax very early on in the pandemic because they worked in healthcare. Unfortunately I didn't see them speak before I decided to get the vax.

My friend Angelia has put up a video on her Facebook - https://www.facebook.com/watch?v=27337513239241396 - about what Kristi did and explains why she should get her recognition.

More info on Kristi Simmonds from a GoFundMe page for Simmonds' Family:

>Most of you know Kristi Simmonds, and if you don’t, let me tell you a little about the incredible woman she is.

>Five years ago, Kristi made the decision to receive the COVID-19 vaccine with the hope of protecting her family, her patients, and those around her. Within days, she experienced a severe allergic reaction that quickly turned into a devastating medical journey. What began as swelling and difficulty breathing soon progressed into uncontrollable muscle movements, body convulsions, and excruciating pain.

>Over the past five years, Kristi has fought harder than most of us could ever imagine. Through countless doctor visits, hospital stays, setbacks, and unimaginable suffering, she has continued to show incredible strength, courage, and faith. If you know Kristi, you know she has never stopped fighting.

>Throughout this entire journey, her husband, Nigel Simmonds, has been by her side every single day. He became Kristi’s full-time caregiver, dedicating his life to ensuring she received the love, care, and support she needed. Because of his commitment to caring for Kristi, Nigel has been unable to work, making this journey not only emotionally devastating but financially difficult as well.

>Sadly, after five long years, Kristi’s body has begun to shut down. She has now been placed on hospice and has been told she has only days left. As her family focuses on spending every precious moment together, we want to help ease the financial burden they are facing so Nigel can focus on being with Kristi and honoring her wishes without the added stress of financial worries.

>If you are able, please consider donating. Every contribution, no matter the amount, will go directly toward supporting Nigel and their family during this heartbreaking time. If you’re unable to donate, we completely understand—please help by sharing this fundraiser and keeping Kristi, Nigel, and their loved ones in your thoughts and prayers.

>Thank you to everyone who has followed Kristi’s journey over the past five years and has continued to surround her family with love, encouragement, and support. Your kindness means more than words can express. ❤️

Just had my post removed for expressing thoughts of self harm. I was not aware that this level of censorship was present in this sub. Just wanted to let you guys know they are still censoring us HARD for our experience.

Haven’t been on here in forever. I still consider myself severe 5 years later. I am at my wits end. I am completely out of money and will be homeless in a few days. My family is somehow blaming me for this. I don’t live with them they live across the country. The way they’ve talked to me for the last 5 years is nothing Short of ignorant and atrocious. I have a suspicion they literally still don’t even believe me even after everything and all the evidence that’s came out and how severe I am. I was told today I’m an adult and need to “move forward”. I fucking hate them and will never speak to them again once this is over. Oooooh I cannot wait for that fucking day. Gonna write a nasty letter to those stupid fucking people and that’ll be that. Anyway once I get evicted I might jump off the nearest bridge or building. Haven’t decided yet. I live in the most expensive city in the country. It’s actually insane how isolated and alone I am though. No government programs will help me. Not even food stamps. I hate this fucking society. I wish I was literally any other nationality cause at least I wouldn’t be forced to be homeless after the government destroyed my life.

Back in 2023, they failed to find spike protein in the blood. Despite the data, they said that they found spike in the blood. (They moved the goalposts around and went against their previous assay validation work.) Because that's how you get research funding. Now in 2026, they say this:

>SARS-CoV-2 antigens circulate in plasma up to one year after infection in a minority of individuals, regardless of whether they develop Long COVID or not, and become rarely detectable later on. Therefore, current evidence does not support its use to guide clinical monitoring or treatment decisions in Long COVID.

Sometimes, the scientific literature is trash.

Their paper is here - https://www.clinicalmicrobiologyandinfection.org/article/S1198-743X(26)00326-5/abstract

My hosting provider said this:

>We want to notify you that our network monitoring system has detected a significant DDoS attack targeting the website longhaulwiki.com. The attack is generating around 444.0 connections per second, which is overwhelming your network port capacity and rendering the site unreachable.

To protect the server and network stability, we have restricted access to the website.

Archive.org shows what the website used to look like - https://web.archive.org/web/20260101145236/https://www.longhaulwiki.com/index.php/Main\_Page

I guess I'll sign up for a free Cloudflare account and see if that's good enough, but why on earth would somebody be against a chronic illness wiki?!

I keep asking myself this question. It's not just the mrna shots either, it's all of them. Heck, the fda inserts provided by the drug manufactures admit all the horrible adverse events that can happen, and still, they're so protected and so unquestioned.

The rest of Reddit is proof of how locked down the conversation is. I can't even have a sane talk with my friends or family about it. The topic is just completely off-limits. People will blame absolutely anything for the rise in cancer and chronic illnesses, as long as they do not blame the shots.

The very first page of the pfizer and moderna shots straight up tell us about myocarditis. They literally tell us these shots can lead to heart issues. How have they not been pulled from the market? Why is no one in jail? Tf?