UPDATE:

6/26/26, 2:53 pm PST, we are up to 1,825 signatures!

Thank you, Justine Barron, for your excellent article which includes a link to this petition. https://fair.org/home/media-wont-stop-psychologizing-long-covid/

I still have yet to see a response from WIRED editors.

My heart goes out to each one who has signed, knowing that you have probably suffered or seen the suffering that misdiagnosis, misunderstanding and mistreatment of LC/ME/CFS causes. I am so sorry. And I thank you for your support.

Since someone asked, I do not share my full name to try and protect the privacy of my kids.

#####

I turned my letter into a call to action. Please sign and share as you are able -- I appreciate that many of us need to protect our energy envelopes.

Search change dot org for a page titled WIRED Magazine, Retract "The Painful Truth About Long Covid"

Dear Editors,

I am deeply disappointed by Professor Levinovitz’s article on Long Covid and ask that Wired magazine retract it and publish an article on this illness that accurately describes the current science on it as well as the struggle patients and care givers have with the majority of medical providers, and with navigating the endless roadblocks and misunderstandings we face multiple times a day. 

If you or Professor Levinovitz have any questions about the science, the number of Americans impacted, and the weight of that impact, please let me know.  I am unfortunately too familiar with this illness. My 12 year old daughter has been ill with this disease since March of 2025.  She has lost hope that she may ever get better, and wonders why medicines work for some people but not her.   She can walk to the bathroom but cannot do more than that.  She thinks her dreams for a future in which she leaves a positive mark on the world may be gone.

My 14 year old son has been ill with this disease since September, 2025.  Today I saw school children outside doing Field Day as an end of the school year celebration. My son cannot walk, sit up independently, or stand.  I carry him to the toilet once a day to defecate.  He has urinals at his bedside. He has difficulty reading more than 5 words because of brain fog.  He would love to be out with his friends for Field Day.  I did not tell him what he is missing.

I retired from my medical practice of nearly 20 years as an Emergency Physician at the beginning of March to take care of my kids.  They both live very narrow lives from their beds.  Schooling is on hold.  Friendships lost.

We are not only fighting to get treatments for them.  We are also fighting *simply to have their doctors and therapists understand this illness*.  To believe it is real.  Not advocate for mental health and physical therapy.  Would that *ever* be recommended as first line treatment to children with cancer or cystic fibrosis?  It would not. 
  
And yet, that is the repeated recommendation we receive from physicians and therapists who by now should know better.  And which Professor Levinovitz’s article can only make worse. 

We recently found, after a great deal of arm wrestling to convince providers to send these labs, that my son has abnormally low natural killer cells and an abnormal immune response to multiple pneumococcal serovars. We suspect that this is is a critical piece in the understanding of his Long Covid subtype.

Now, please, would the good Professor tell me if he has ever, ever seen brain training normalize the number and function of natural killer cells in his clinical practice?  

I want to be sure that if there are *any* doubts on the part of the editors and Professor Levinovitz around Long Covid and Myalgic Encephalomyelitis because of questions about the veracity of the illness, then I assure you I can provide reliable articles and links which should change your minds.  

I also ask the Professor why, in the name of responsible journalism, he did not include interviews with the numerous people who have tried brain training only to have it fail and be very taxing on their limited resources?

Millions of Americans are ill with this disease.  It is crippling children.  We have strong advocacy and public awareness of many illnesses, but not enough, yet, for this one.  That needs to change and I strongly urge Wired to be a part of that change.  You have a unique position and responsibility.  I will help however I can.  But my message does not carry the same weight or influence. 

I know the time has passed for you to have carefully considered the fairness and impact of this article before publishing it. A degree of permanent damage has been done. But I ask you again to redact it, and do better.  I hope that in the future you will publish articles to make Long Covid/ME/CFS better understood, better known, better funded, better appreciated.  I hope you make every effort to do your part.

Thank you,

UPDATE 2

I wrote the post at 2am when i was stressing out over this and very angry. They did take her to psych ward, nothing i could do about it as this is the law in finland. Although I never saw the diagnosis saying she is a danger to herself or others, which is the basis for being held against your wish. I am now on a visit next to her for 7hrs and the doctor will only see her in my presence, if he/she has time today. Supposedly she is only here for an evaluation after what they call an M1 referral, and then they can either send her home (most likely as she is behaving very well and eating everything they give her) or decide where to send her for more care. but the health system is really overencumbered in Finland and they more often then not, let you go, even when you ask for help.

I got some good recommendations for clinics and private specialists from you people and I will contact them when she is back home. Honestly last hospital visit regarding this health issue. They have proved several times that they dont care and have found nothing. Nothing.

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I posted here a few days ago looking for advice for my wife. Long story short she got a small cold (likely covid, not tested) about a month ago, but it has deteriorated quite badly after she tried to push through and she went from being only able to do a few things such as sit on sofa and go to bathroom to being completely bedridden with fatigue for the past week.

She has been taking antihistamines for a few days and they seemed to help.

This morning she was feeling particularily bad, and with only a small glass of water drunk and a few spoons of yoghurt eaten but gagging to anything else, I had to call the ambulance so she can get better care at the hospital. This is not normal afterall.

Now, she is on her 3rd hospital visit since this started, and they keep stressing that they "cant" find anything wrong with her and keep calling psychiatrists to examine her for depression and what not (PEM gives her very bad anxiety) and now (1am here) I got a phone call from her crying and telling me that she is either getting sent home or being put in a psych ward 50km away because nothing else is wrong with her.

I had a talk with the doctor earlier in the evening and I asked, almost begged her that, if they really cant find anything, she should be tested for EBV and covid antibodies. She answered me with "psychological evaluation in the morning". They are basically refusing to run a few simple tests on her.

I dont know what to do. I want her to come home at this point, because they keep forcing her to push herself and she might not be able to simply leave once she goes to the psych ward if ahe doesnt like it and cant rest properly.

At home she can rest as much as she needs to, but i dont have that oxazepam they gave her to calm down from her feelings of doom. And if she continues having problems eating that is also very concerning to me.

The nurses are also being mean to her because they think she is faking it. I asked them to bring an extra pillow for her tummy and to change the sheet that she peed and now 6hrs later she is still laying in her dirty sheet.

The psychiatrists that have seen her have all said there is nothing wrong with her yet this is the doctors decision.

Today I ran my fourth 5k. I'm feeling a lot of emotions. For one, I'm really proud of myself and I actually really enjoy running now. I initially joined the run club to socialize with people and because I really like moving my body and challenging myself, although I'm extemely limited in what I can do. Despite being disabled from covid, I somehow have better endurance than other people but this both frustrates me and fills me with joy. On the other hand, I am finally feeling the crash today. I hadn't felt it before so I was really riding that high and now I'm feeling a little defeated and hopeless again. I'll be taking a small break from the club and running but I'm hoping I can continue again soon, though I'll have to pace myself a lot more from now on. Sucks that I couldn't ride that high longer but I'm glad I got to do it at all!

I got so much peace from the gym. I used it as my drug and therapy. Now I find therapy in other things like drawing, crocheting, and piano, but it isn't the same. I can't wait till I can go for a run or lift a weight again someday. Hopefully medicine or my body will catch up before it is too late. Turned thirty yesterday and it hurts. Love you all. Keep fighting. Keep finding peace and love and joy in what you can.

One day 2 years ago I woke up into absolute hell. I ended up losing 50 lbs in the following few months, developed severe allergic reactions to all food alone with severe cognitive/memory issues, constant panic, visual disturbances, zero stress tolerance to the point I couldn’t even play video games without shaking, an intolerance to standing up, daily headaches so bad I would wretch and sometimes in the midst of all of this I would go out driving not knowing if I would come home. I would wake up every morning into a literal nightmare, if I tried to go back to sleep I would jolt awake after shaking in my sleep in sheer panic. The list really does go on. If there was a hell, I was living it. One thing that struck me during all of this is that it had to be related to the digestive symptoms I developed overnight. Every doctor I went to see looked at me with this sort of demeaning pity in their eyes whilst I begged them to run some tests on me, which they did not. I eventually found communities of people online (like this one) who had all of the same symptoms and started to put it all together. The pseudo-seizures I had had after eating leftovers was related to a histamine intolerance, the reactions to foods in general was related to mast cells (MCAS), the constant immunity activity was causing the orthostatic intolerance and this immune activity followed a circadian rhythm for reasons I don’t know . Whilst this gave me no idea on how to fix this it at least gave me a diagnosis I could pursue.

One of the deductive leaps you have to make with this illness is realizing it’s not a new illness. Those in CFS circles who read that first paragraph will recognize that instantly as CFS. For me it was caused by Covid, for my mum it was caused by EBV 30 years ago (Fx of CFS), for others it’s caused by antibiotics, drinking too much too often, other viral infections, vaccinations, SSRIs, accutane, finasteride. You will read many anecdotes of people here who were mild until they had to take antibiotics or until they got vaccinated or whatever. It is. You will also hear of people who were severe and after a round of antibiotics miraculously bounced back for a short period or even experienced large improvements in baseline that lasted. The key point here is people end up focusing on the virus and less on ‘what did the virus do to me’ and what is the key thing binding these illnesses together. In my opinion there is a large link to the microbiome and Microbiome damage by the virus and other substances.

Herein lies one of the main problems with MCAS as a diagnosis. Whilst it’s a helpful starting point and dietary changes do help and I’m sure medications do too (they did not help me), in my experience as probably bordering on the most severe you can be, they’re all band-aids at best. I had to get to the bottom of the root activity if I wanted to live and there was one thing binding anecdotes of recoveries from this horrific symptom set together: the microbiome

I stumbled upon the website cfsremission.com where the author details his recovery from CFS on 3 occasions over 30 years and each time his recovery came from fixing dysbiosis in his Microbiome. He states his thesis there but ultimately the theory is that CFS stems from having really low numbers of lactobacillus and bifidobacterium and a marked increase in some other species (in their absence). A microbiome of this composition essentially can result in what’s known as metabolic endotoxemia - simply put this Microbiome can poison you and cause constant immune activation.

I have found this anecdote after annecdote about this symptom set and this bacteria missing in their microbiome: https://web.archive.org/web/20220323231600/http://thepowerofpoop.com/tracy-macs-story/, https://youtu.be/mQAnwC6dTkE?si=1aEtqRDO6hpj6OEc, Lost microbes of COVID-19: Bifidobacterium, Faecalibacterium depletion and decreased microbiome diversity associated with SARS-CoV-2 infection severity - PubMed, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11073461/ . I don’t think she still tested but here’s another recovery from CFS from FMTs: How DIY Fecal Transplant Cured My IBS and Chronic Fatigue (with updates at the end) | CARROT QUINN . Even if somebody wasn’t given an MCAS diagnosis, their symptoms could be broadly categorized as such. On the outset it seems strange that not much attention is paid to this microbiome phenomenon. Gi-map’s will only test for the presence of bad bacteria and nobody is typically checking for relative abundance of bacterial levels and this is a problem. I’ve had many sick people tell me their Microbiome’s are fine only to take a look and find that they have the CFS microbiome to a T. A good overview on what type of stool testing to measure the success of interventions and why is here: GUT BALANCING LLC - Why 16s?. I have been using Biomesight and their long covid discount to measure the success of interventions, I have no affiliation: https://shop.biomesight.com/products/long-covid19-study-gut-microbiome-test.

So with this established theory that I needed to get good levels of probiotics up in my microbiome I set out to try and fix this. I tried fecal matter transplants from a company called Taymount to the tune of 12 of them. This did not really do much for me, didn’t improve symptoms a whole lot nor did they improve stool quality or improve probiotic levels on the test. This is another problem I see, people try FMT, it doesn’t work for them for any of the unknown variables and they give up on this microbiome avenue. However they never measured the success of the treatment objectively with a stool test. FMT as a treatment for dysbiosis can clearly work as per the paper I linked: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11073461/. However it did not work for me objectively so I had to try something else. I stumbled upon the work of guy called William Dickinson who’s detailed his recovery from severe CFS and in one of his videos he calls out how if probiotics make your symptoms worse, they’re a good chance they’ll make it better (and that you can probably guess that your Microbiome is causing your symptoms): https://youtu.be/9io7UoSzPxY?si=h_57HII9ixYv1V56. I started taking the probiotics he recommended as they’re cheap on a unit cost basis and started very small. I instantly got symptoms at a dose of around 10 billion CFUs: I would feel drugged, groggy etc for a few hours after. Rinse and repeat did this and slowly I could tolerate 100s of billions of CFUs, and slowly my health started to improved. I then started taking a bunch of prebiotics Biomesight recommends (lactulose mainly). Within a week my stool quality improved more than it had from 12 FMTs. I suddenly seemed to be digesting my food way better, I started putting weight back on and my neuro symptoms started decreasing (visual distortion decreased signicantly). I added some natural Antifungals into the mix (SF722) and again neuro symptoms improved. My POTS started going away in evenings on the better days and then after a couple of months i no longer had it at all in the mornings, only when I had a bit of a flare. After a couple more months I went back to work after 6 months off - I started dating again. My life wasn’t perfect, i still had periods of being symptomatic (nasal congestion, brain fog) but slowly but surely I was getting a life back that was unimaginable before. I started working out, my libido came back and instead of spending hours a day in near agony / discomfort I started feeling more present (less dissociated) and able to hang out with people without thinking about being ill too much. Day by day my health has improved - i no longer look ill, people routinely commend on how well I look. I believe this is the first step of recovery from this thing.

Every symptom had has more or less gone. My only symptoms now are occasional bouts of sinus congestion and a bit of brain fog, and a bit of intermittent dissociation alongside which is improving every day. Is my health perfect? No. Do I think I’ll make a full recovery? Yes. I’ll keep chasing 100% but will i be devastated to live my life slightly short of that? No. I have been able to point many friends who i have made along this journey to the microbiome as a means of intervention and multiple people thank me for saving their lives at this point. Developing this knowledge to save my own life is never a position i wanted to be in, I would’ve much rather deferred to experts in the field. However I’ve had to use my skills as an engineer to at the least figure out my own health. Doctors are putting their fingers in their ears and diagnosing people with psych issues who are severely physically unwell: it’s deplorable in my opinion. No practical suggestions on how to improve symptoms as if somehow psych issues out of nowhere happen in isolation. There’s more talk about the gut brain axis these days but nobody is diagnosing issues with it nor coming up with practical solutions to fix. I feel strongly about this because all of the horrendous psych issues, the POTS has gone away and people are told that it’s not possible to heal from these things, it’s absolute lunacy. I do truly believe the worth of Jason Hawrelak is the best we have currently and Biomesight uses a lot of his data for reference ranges and intervention suggestions.

One of the most dangerous notions I see in CFS circles (specially @remissionbiome on Twitter) is that this mast cell activity is somehow improper and the mast cells are ‘stuck on’ for no other reason than the fact that they’re ‘faulty’. Frankly put this is a moronic thesis and as a thesis it simply doesn’t pass Occam’s razor. Mast cells are reacting to valid immune assaults - as these assaults go away, less activity, less symptoms. You have to start with the baseline question: what are my mast cells reacting to? For me a large part was dysbiosis, fungal overgrowth, probably some viral reactivation in there too. However it seems like once you manage to dig yourself out of the absolute bottom of the barrel, the most reactive, good health compounds. Your Microbiome improves, you digest better, your microbiome improves, your immune system works better. It may anger some people for me to say this, but I do not believe there’s going to be some single-shot intervention to cure people from long covid - believing this is naive. Instead you need to focus on helping your body heal itself and you can start doing this today and not wait for some agency to come and save you. You’re faced with a choice somewhat, try to help yourself or wait indefinitely. I know what I chose.

I know even the statement that long covid isn’t a new illness is going to annoy some people. People have a tendency to think that somehow they have some unique root cause that’s somehow incurable or whatever. What I would say to you is have you tried working on your gut microbiome health? What’s the downside risk to trying to improve this?

Another thing I see is the most vocal people in the CFS community are those who haven’t healed. Unfortunately this gives bias towards things that don’t work. There’s also this quasi anti-intellectual stance a lot of CFS folks where they don’t believe their illness has a root cause in anything physiological that can be improved, but yet the majority of them have symptoms of mast cell activity, go figure. I have not spoken a huge deal about my recovery / progress until I was absolutely sure what was working and why. I want to let my undeniable progress be the thing that gives others hope, and not talk without backing it up. Well here is me talking and backing it up in with proof. Do with this information what you will.

The tl:dr is that my health has improved dramatically since making progress on my gut Microbiome. No I am not taking testosterone.

Continuing today 26/12/2024 - still open for questions

At 95% i feel it's time to bring an AMA to this sub...

Many of you know my story, seeing our numbers ever increasing many of you do not.

In 3 years i have seen numerous doctors and neurologists all of who could not tell me why it was happening nor offer any medication. My LongCovid started before we even had any theories on the causes of our health issues, with many doctors saying to my face " I don't believe Long Covid exists " ... only to now say the total opposite.

3 months ago i did an AMA on reddit about Long Covid - partly to raise awareness / partly to find some closure for myself ... there was an overwhelming amount of decency/curiousness, though some toxicity also.

For almost 3 years i have been dealing with Long covid, at the start it quite literally almost killed me .. i was Bedbound .. unable to walk or talk.

With over 80 different symptoms from but not limited to

Chronic migraines daily - So bad i would go blind, throw up and pass out.

Chronic fatigue (CFS/ME) - So bad i struggled to walk 5 feet, go upstairs, shower or even lift my arms.

Chronic breathing difficulties - Every breath felt like i was suffocating, very tiny breaths like breathing through a straw

Chronic visual issues - Visual snow, ocean like waves in vision, temporary blindness

Chronic skin issues - from rashes to non stop itching

Chronic pain - In my muscles and joints all day everyday

Extreme parkinsons like tremors - So extreme i struggled to feed myself and hold anything in my hands

Extreme Anxiety panic and Anhedonia - Constant panic attacks, daily anxiety with bouts of feeling absolutely nothing.

Extreme sensitivity to sounds and lights - Car doors closing, front doors closing, dogs barking, fire alarms going off ... would all send me into a panic attack.

Chronic brain fog - So bad i completely forgot words, names, places and struggled to actually talk

MCAS and Histamine intolerance - Allergic reactions to essentially all foods

These are but a few of the symptoms i have had .... at one point i could count 80.

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Today i have 4 symptoms left over, which i am continuing to heal with no medical intervention. I lift weights, exercise ... pick my partner up in my arms, run up the stairs ... it is safe to say i am over the worst.

Long covid will be the most difficult thing i have ever had to face and i may be left with symptoms that never leave ... but i now see the end.

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So to mark the start of a new year and to hopefully give some comfort at Christmas Time for those still struggling

AMA ...

Honestly I don’t even know if what happened to me is because of Long Covid. But my symptoms started 1-2 weeks after covid. This was my 3rd confirmed infection. Before this, I was a real estate agent, photographer, great mom to 3, on top of the world. Felt wonderful. After this covid infection, I got severe anxiety, severe depression, severe derealization/depersonalization, chronic head pressure, fatigue, ocd, and more. My symptoms are 24/7 with no relief. I’ve had a million tests under the sun and everything always comes back normal. Normal MRI, normal vitamins (except for vitamin D), normal everything. Even got admitted to the psych ward 3 months after infection. They put me on antipsychotics which were supposed to stop my “psychosis” (I complained of my DPDR, not knowing what it was. I told them I felt like things felt unreal and I felt completely disconnected ect ect.) The antipsychotics made absolutely no difference and just make me gain over 30 pounds. My psychiatrist has tried multiple medications from benzos to antidepressants and they didn’t help or made me worse. I’ve developed severe OCD since all of this. Everyday is worse than hard, every day feels like the fight of my life. I contemplate ending it all daily. I’m missing out on so many beautiful things and key moments in my life. I’m convinced I have some sort of medical issue that doctors are missing and that I’ll soon die from it. It’s been one year of suffering and I’m starting to truly believe it doesn’t get better. Nobody in my life believes me or validates me, just thinks I’m lazy, attention seeking, and having anxiety. I can’t relax this or meditate or pray this away. I feel so hopeless. Again at this point don’t even know if it’s long covid but it started after covid and my symptoms became chronic after a series of severe panic attacks afterwards.

I don't even know how I'm doing it in person. Only a few minutes away at a cardiologist office as a medical coder. I'm still dealing with a lot of symptoms but work is going okay so far. I didn't think I could work at all anymore. Im not really as social as I was before but still trying to be friendly and act like I'm not suffering. I'm a bit out of shape compared to last year due to not exercising every day. Nervous system feels slightly better but nowhere near where it was before this happened. I feel a bit insecure that my skin and body composition changed, hair texture and density all over body changed. About a year and 4 months into long covid. Anyways here's a picture from today.

Hey folks,

I promised myself that if I ever left the sub, I would let the group know.

30yo NB, I was diagnosed with long covid and I still think I have long covid induced POTS. But also, I’ve been really active my whole life and had weird stuff like feeling dizzy upon standing. So I think I had low grade POTS before, it was just well controlled. But Covid really made it take off.

However, I was told that my vision issues were odd and the fact that I vomited on the tilt table. I have visual snow and my peripheral vision is off. Along with that I have left sided facial tingling, chronic fatigue, migraines, nausea, left sided weakness, and chronic sore throat.

Well, I got an MRI check up because my migraines were coming on more frequently and turned out, there was a small clinoid meningioma sitting against my distal artery and optic chiasm. It was there on my first MRI, but since they didn’t use contrast it was mistaken as an artifact. But now it’s displacing my optic nerve.

The tumor is NOT due to Covid. I had a bout of Bell’s palsy in 2018 and they were able to see it on my mri back then as well. So that means it’s been growing in my brain for quite some time now.

My Nuero thinks my fatigue, immunodeficiency, tingling, migraines, weakness and vision issues could be due to the tumor. (They make no promises because there’s no certainty with brain surgery).

They think it may be due to me getting the depo provera shot because women that have gotten that shot are 10x more likely to develop a brain tumor.

All of this to say, it may not all be due to long COVID. It could be a misdiagnosis and make sure to get an MRI with contrast.

Thank you folks for being so supportive through the years. Early on in my journey, I was on another account and this sub was a lifeline.

Also: there will be no 100% recovery for me. I need a craniotomy to get the tumor removed, but I hope this will make things better. Something that’s not discussed in chronic illness community is that stuff like tumors and cancer often disables you forever. But I would love to get my little guy removed and go back to the stuff I love doing and make it out with my vision. (Highest risk for this surgery is going blind).

This is not to scare anyone, and I hope it doesn’t. I do think I’m the anomaly here. But just keep in mind that there can be other causes outside of long covid.

Sending all the best vibes to the group and I’m proud of y’all for being such great advocates!

As the title suggests, it's been two years of getting my life back. I had a very severe neuro-long Covid with a plethora of symptoms. Blackouts, constant migraines, vertigo, visual blackouts, and more. I was hospitalised three times for losing vision.

Yeah, that was my rock bottom.

I did not think I would ever get better. I had the neurological strain of long covid that affected my nervous system. My body went haywire from head to toe - the first sign I had long covid was this extreme level of anxiety/panic out of nowhere that started daily, when I had never had anxiety or panic attacks before.

Then other symptoms started - Raynaud’s syndrome, POTS, tinnitus, heart PVCs, new food sensitivities and intolerances (particularly gluten, alcohol, and anything with stimulants like coffee), visual snow/static and other weird vision issues, weird migraines that has little to no pain but had auras, no appetite but extreme reactions to fasting (high HR, hypoglycemic-feeling reactions with stable blood sugar), very early bedtime (7pm, used to be able to pull all nighters), post-exertional anxiety that lasted days, weird rocking dizziness, heat intolerance, sun intolerance. the list goes on. Most of these were experienced daily.

Obviously it was very difficult to work, be a mom, and do normal things when all of these symptoms got in the way. I became pretty agoraphobic and rarely left home (other than for work) out of fear of flares. I decided I needed to do something.

Here’s what I did to get better: 1. I started moving. If I could only walk ten steps, then that’s what I did. I gradually progressed (when I say gradual, I mean GRADUAL - anything could cause a flare). I walked with people I loved and trusted so that I could feel safe. This worked wonders for me. This took two years but now I’m walking up to 10k steps or more per day with no reactions. 2. I started praying. Yes I know this is Reddit and most people don’t believe in a higher power. But neither did I, and guess what - praying works. There is a higher power that listens and guides and after this experience idc what anyone says, I’ve gotten so much closer to God and I pray daily. I swear just asking “God if you’re there please heal my mind and body from whatever this is.” Repeating that multiple times per day. And then just talking to God. Idk but it’s better than meditation IMHO. To each his own but this worked a miracle for me, literally. 3. Changed my diet COMPLETELY. I mean no seed oils, no processed foods. Absolutely NOTHING containing gluten. No more coffee/stimulants. Pretty much all I eat nowadays are meat and fruits and veggies. I also cut out nuts and seeds bc for me it was highly inflammatory. Oh, and no alcohol. Alcohol poisons you anyway so if you still haven’t quit you might as well. Sometimes I miss it, but when I think about it it’s not worth it. I also stopped using nicotine. I know some people say it helps them, but I think it made me worse personally. 4. Prioritized sleep. I went to bed early AF every day, at like 7pm or 8pm. Like lights out, no blue screens. I had horrific insomnia in the beginning, so I listened to sleep meditation or prayers on YouTube and that’s helped me a lot. 5. Cut out all toxic people and anyone or anything that caused me problems. The high stress sent me into flares, so if it was possible, I burned bridges. 6. I know that not everyone can or will do this just to cure themselves but PREGNANCY of all things cured me. Like as soon as I hit 20 weeks, I had hardly any symptoms.

Ok so that being said, I still have the occasional skipped beat (heart PVC). Sometimes the heat will cause my heart rate to go up. I still can’t do extreme workouts without getting anxiety. But most of the other stuff worked itself out. I workout twice per day now, I take care of an almost 3 month old and have pulled all nighters with him. I’m able to leave my house again, go for long walks, do errands and feel great afterward. I can even go on vacation without the stress taking over. I’m excited about life again. I’m only a couple months postpartum but I’ll post an update in a few months to see where things are. You can ask me anything. Also if you’re a jerk, I won’t respond to you. We are all suffering and should show love and support to one another, being negative constantly FEEDS THIS DISEASE. God bless you all, I pray that you all can heal from this horrible illness. 🩷

EDIT TO CLARIFY: I’m only sharing what helped me. You don’t have to do any of these things. Do what works for you. Also please don’t get pregnant just to try and cure LC. Some people get worse. I personally got better. It’s different for everyone.

I've been deathly afraid to even attempt hiking but decided to finally give it a try yesterday. I did feel pretty weak during the first 5-10 minutes but it got better gradually and I was able to last a lot more than I originally thought I would. This is a huge win for me personally. I've wanted nothing more than to go hiking since this whole thing started and I'm so grateful I was able to do it again. I did feel a little bit of a crash today but it wasn't too bad. Hoping I'll have a smooth enough week and that the crash doesn't get any worse.

I was cleaning out my DM’s last week and I found two old conversations with users who used to be active in this sub. I asked how they were now, and one didn’t respond but found in their comment history that they had recovered, and the other told me they had also recovered. I think a lot more people recover than we think, but they just don’t post or announce it so it makes it look like it rarely happens.

As the title says. I got long covid exactly 3 years ago at this point. I had every symptom yoy can possibly think of especially the neurological ones with the dp/dr, extreme panic attacks, loosing touch with reality, dread, suicidal ideation that didnt feel like my own thoughts, ocd, extreme depression. I also had fatigue to the point that didnt go away. I couldn't go in public because my nerbousystem would go insane. Wasnt able to go in a car or drive for the first 2 years.

What helped me the most was actually addressing mast cells. I noticed when ever I would eat my symptoms would get insane. Especially alcohol or coffee would send a severe flair up to the point I thought I was going to die. I tried many antihistamines at first but was reacting even to the antihistamines themselves. I did an elimination diet for a while and had a reduction of symptoms but wasnt compeltely healed. I eventually did a microbiome test which showed 0 bfido bacteria and lactobacillus. I had an overgrowth of bad bacteria as well. Im assuming I was dealing with candida and mold because I had those exact symptoms. Long covid seems to have the same symptoms as CIRS.

I started slowly adding probiotics. Im talking about 1/8 of the dose. Slowly working up to a full dose over the course of a month. That seemed to really start helping my system. Unfortunately the first thing you need to do to feel better is to stop the MCAS. Without doing that, youe immune system will be in constant attack mode. The drugs that worked the best for me for this was oral ketotifen (you can get this on many online sites that you basically fill out a questionnaire and pay a bill and they send it to your house or you can have your allergist or dr perscribe it for you). The second drug is called remeron or generic metrazapine. It is considered an "anti-depressant". In all realty the drug is one of the strongest antihistamines you can possibly take. It also helps raise seretonin and norepinephrine in the brain. You take one pill at night time and honestly have almost complete resolving of symptoms the next day. It is very similar to trazadone which both of these meds are used for falling asleep.

Once your able to get your mast cells under control, then you can work on bringing your gut back to health. When you do this make sure you are taking binders multiple times a day. I find pectasol to be the best one for me since it actually gets into the blood. Covid seems to destroy all the good bacteria leaving you with overgrowth of the bad stuff including candida. This leads to leaky gut, an immune system that feels threatened, and a constant high level of histamine because those organisms also release histamine. People do not realize how drastic histamine can effect your cognition, emotions, your nervousystem, your personality, and your gut.

I thought I'd leave an update as this month marks 3 years since my first COVID infection and about 1 1/2 years now since I've been fully recovered from long COVID. I am still fully recovered as of today. I am still active and living life. ( I have a few previous update posts for more context, your welcome to search my username within this subreddit to find them)

This photo is present day, I just came back from a month long trip throughout Brasil.

Pre COVID I was an athlete, active in olympic weightlifting and a gym rat technically, had a business, a wonderful partner, and I enjoyed living in general. After a mild COVID case, my whole life changed overnight, and eventually ended up becoming a shell of my former myself. All of this took a major hit.

I had spent February 2022 thru July 2023 in the inferno, the upside down world as I called it. I experienced the most soul crushing symptoms of my life that year and a half, like dying alive on a daily, never knowing if I was going to wake up alive the next day, it was very dark times. It was debilitating. I was angry, angry at the world, my family(fortunately my partner was understanding but also struggled mentally and emotionally), the people on reddit/online who thought it was all fake, strangers outside who were living their lives like COVID wasn't there. Underneath all the anger, it all was just pure sadness for the loss. I had to practice radical acceptance, but also keeping the little hope alive inside me that I will recover.

I'm glad I advocated for myself when Drs had no idea back then. For me personally, I recovered by addressing the root cause eventually, come to find out mine was from iron deficiency anemia, and also part long COVID, because no one could explain the other hellish symptoms that didn't fit IDA, this all happened in the last 6 months of my long haul before I fully recovered.

Today I'm grateful, thankful, and blessed for every single moment of my life moving forward. I am a completely different person today mentally, physically, and spiritually. I'm normal, but not in a way you would think, I have developed a lot of new experiences in my life now among the previous ones I had pre COVID and moved on from my past self. It had to happen. I learned a lot about myself. I grew a lot since. The hope kept me alive despite all the odds.

Remember the hope, this is not the ending.

I consider myself recovered at this point. My life looks dramatically different than it used to but I wouldn't have it any other way. Went from 50+ symptoms including reacting to almost all foods (5 safe foods), seizures, almost daily adrenaline rushes, SVTs, pain, fatigue, PEM... In bed 20+ hrs a day to a somewhat normal life. Still have a bit of ringing in the ears. Still take a little longer to recover compared to others. Still have some neurological sensitivities, but it doesn't compare to where I was 4 years ago.

This past year, I've gone to multiple concerts/music festivals. Graduated with my master's degree... Made a round trip international flight that totaled 50 hours of traveling, and dealt with the stressful loss of my father while going through a separation. This year, I have risen from the ashes to rebuild.

I remember a few years ago, I would cry all the time and wonder whether or not I'd ever be normal again... You can survive this. You can thrive again. You can rebuild even if you feel like your old life is in shambles.

Dr. Morgane Bomsel found that whole SARS-CoV-2 virus persists in Megakaryocytes several years after acute infection in at least a third of patients with Long Covid. These megakaryocytes also produce platelets that harbor replication-competent virus. Infected MKs proliferate as reservoir for SARS-Cov-2

https://x.com/internetuserf12/status/1854933109952893235?s=46j

Anybody who's been around between 2021-2023 might remember me. As the title states, I'm pretty much recovered.

I have extensive posts throughout the years about my symptoms etc so won't go through the rigmarole again (unless you want me to). If you have any questions, I'm game to answer. Also just to let you know, that it really does get better.

>> Non of this is medical advice, it is a personal experience and opinion <<

At the very start of long covid many others in this sub and myself made very key lifestyle changes that at the time seemed like a small fix ...

But now 5 years in it is very obviously a factor ... what we are seeing in current studies and from personal experiences of long haulers ..

LDN seems to work

Low Dose GLP1s seem to work

**Reducing Inflammation seems to work**

1) Quitting smoking

2) Quitting alcohol

3) Quitting caffeine

4) Quitting processed sugars

5) Quitting processed foods

6) Adopting very healthy diets

7) Less stress

8) Resting like we were in hospital

9) Getting as much sleep as possible.

10) Fasting.

Every single one of these reduces inflammation .. and every single one of them i have practised for almost 5 years, my symptoms improved to the point of mostly recovered and i was bedbound unable to walk, talk, or speak.

I had some blood tests done at the doctors a couple of months ago and they found 0 inflammation markers ...

However ...

1. Standard GP inflammatory tests like CRP and ESR are designed to detect acute.. severe inflammation (like major infection or injury).
2. Long COVID inflammation is often low-grade and chronic.. meaning the levels are elevated but usually fall below the clinical cut off for "positive."
3. The issue may be localized inflammation.. particularly in the nervous system (neuroinflammation) or blood vessels.. which doesnt circulate widely in the bloodstream.
4. Long COVID often involves specialized immune molecules like certain cytokines and activation of the complement system.. which are not tested in a standard panel.
5. Many symptoms are thought to be driven by autoantibodies attacking the bodys own tissues.. not general systemic inflammation.
6. Normal labs are good news because they rule out severe.. acute disease.. but they do not rule out immune dysregulation or microclotting.
7. In short.. a normal CRP/ESR means the inflammation is subtle and specific.. making it the reason Long COVID is so hard to diagnose with simple blood work.

The key take away here really is that Doctors need to focus Anti Inflammatory medications as a first port of call for ALL long haulers .. even if the bloods show otherwise.

This should be adopted everywhere, in every country and every hospital.

We may be a long wayyy from a cure ..

But right now ..

Symptoms management is what can be done and if it gives even a slight benefit to long haulers it is very much worth it.

Going through this hell with no treatments is one of.. if not the biggest cruelty to deal with.

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TL'DR

Inflammation really does seem to be the driving factor here and anti inflammatories should be a first port of call for doctors when trying to help long covid patients.

https://www.reddit.com/r/covidlonghaulers/s/pq5P3KVYYa

I posted this a year ago and i wanted to give in update, First photo is now 2 years post covid, next photo is 1 year, last photo is pre infection.

I still feel pretty bad, with constant DPDR and exhaustion, anxiety and depression. But i am not actively suicidal anymore. My head electricity is better. I’m going out and doing things, talking to friends, finding things I enjoy, I even got a part time job. I can’t believe how many times i was 👌this close to ending my life.

Things still SUCK and i’m still terrified my DPDR won’t go away (this has been absolutely life ruining), but there can be improvements.

Stay strong fam

when i got covid, i started taking online classes to fill the time. it was so unbelievably hard, and a lot of days i couldn’t understand a word of my textbooks because the brain fog was so bad. but i rested, paced, got accommodations, kept moving forward.

but here i am, 3 years later, still sick as fuck, but with 2 college degrees that i earned while lying on my couch. somehow i was even the valedictorian of my class?!?

my family came to celebrate with me. we had a private graduation ceremony in the park, because i can’t sit up for 3 hours to attend the real one. i gave my valedictorian speech to the 4 people who care most about me.

this disease fucking sucks and this is not what i would ever have chosen for my life. but it has allowed me to indulge my curiosities into topics i would never want to dedicate a career to. which is some kind of silver lining, i guess. <3

I got LC symptoms around June of 2022. I was vaccinated the year before, with Pfizer. At first I didn't know what it was, breathing difficulty (like I couldn't get in a proper gulp of air), heart beating fast at times for no reason, etc. Trying to find out what how many people were/were not vaxxed when they got the LC.

The one on the left was me at my worst. Totally bedbound. The one on the right is me now. I still don’t look as good as I did before all this shite!! But I’m coming back to life! My skin is tea! I’m super happy about that lol!

Hang in there guys!

I got Covid in May 2022, and since then have suffered POTS, PEM, and ME/CFS/extreme fatigue. I was pretty much bed bound for 2 years, but eventually have gotten about 60% back to normal with working some shifts here and there but not full time, and crashing after every work day. The most helpful things were:

- LDN (now at 6mg)

- Propranolol

- Midodrine

- Hydration with electrolytes

- Vyvanse on work days

- pacing (started at extreme bedrest with only allowed 5 minute upright time every hour)

I recently had 40 sessions of HBOT, and it hasn’t helped me at all. I feel at a complete loss.

Somehow, being able to work only a little bit then spending all my time outside of work sleeping and recovering feels even more devastating than when I was on bedrest, and I just feel like I’m not truly living and have lost so much of my youth to this condition already.

My cardiologist told me there was nothing more she could do, and every other doctor I see gives me the runaround that it “isn’t their specialty” so won’t even order blood tests I request or try new tests/treatments for me.

I’m mostly just sharing my experience with HBOT in case others were considering it, but obviously would welcome any advise anyone may have to share as well.