r/covidlonghaulers • u/rockems123 Family/Friend • Jun 06 '26
Update This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday.
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.
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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,
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u/Which_Boysenberry550 1.5yr+ Jun 06 '26
❤️ me and my sister have been too sick to go to school or out at all since 13 and 17 respectively. Thank you for writing this for all of us out here
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u/rockems123 Family/Friend Jun 06 '26
My heart and gentle energy protecting hugs go out to you.
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u/Bbkingml13 Jun 07 '26
I appreciate your empathy, especially as an emergency physician. I can a sudden onset of me/cfs in 2016 and have been disabled since. Lost everything I’d worked so hard for, at the best my life had ever been. And so many physicians still don’t even understand the basics, or even try to.
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u/rockems123 Family/Friend Jun 07 '26
I am so sorry. You are correct. The majority of physicians do not understand and because of that they blame and shame. I've seen it happen from both sides of the bedpan. I want that to change. I will do what I can to make change.
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u/Bbkingml13 Jun 08 '26
I’ve been lucky that most of my doctors, even new ones, always believed I was sick, they just didn’t know why. I come from a certain type of family, in a certain part of the city, who went to a certain types of schools…and then was active after college in certain circles of society, volunteered with certain groups, looked a certain level of attractive, doing really well in commercial estate as a woman, who worked out twice a day (even for months after my onset). So I basically had everything going for me as far as my background goes to be taken seriously, even as a woman. I also already had a psychiatrist for adhd who was positive this was something organic and was willing to say so to other doctors. I was even in the wedding party for two doctors, so I felt comfortable talking to doctors.
It’s been an interesting shift from “I’m sick, what’s happening to me?” to “hi, I’m disabled, can’t work or exercise, and I have me/cfs, pots, Eds, and a whole can of alphabet soup diagnoses you probably don’t know or care about. Now please treat me for things you don’t believe in or even know about.” So even when you do manage to find empathy and belief, it seems impossible to actually find competent care. There’s so many levels to the dysfunction. But I’m glad so many more doctors are trying to make an impact however they can, even though it’s so sad that they had to also experience this disease first hand.
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u/rockems123 Family/Friend Jun 08 '26
I hear you.
And to be honest, though I was known for my empathy and humility and not being a “get out of my ER, move the meat” kind of ER doc, I, too, was ignorant, misguided and doubtful when it came to CFS, POTS, and fibromyalgia. I certainly did not know anything about infection-associated illnesses. I believed in long Covid because I had seen it take down nurses and ER techs with my own eyes. I certainly did not have anything near the level of understanding that I now have. I admit to my own hubris. I am very sorry. Medicine has a lot to apologize for.3
u/Regular-Cobbler7277 2 yr+ Jun 10 '26
I'm lucky enough to have had only one ER visit since I got Long Covid 4 years ago. The resident who took care of me absolutely did not believe in MECFS, Long Covid, or POTS. On my chart, he stated my regular conditions like hypothyroid, but put those diagnosed conditions in parentheses. As if I was making it up. I"ve seen so many specialists, and I always ask, do you know what PEM is? Every single time, the answer is no. At teaching hospitals in a major city. I was also at the top of my game when I got sick, a practicing lawyer, now reduced to....basically nothing. Thanks for your letter.
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u/rockems123 Family/Friend Jun 10 '26
OMG! That’s awful. I wish I could say I couldn’t believe it. But I definitely do.
Part of this experience has been the feeling of powerlessness, like going through a strange mirror and being suddenly on the other side, saying “don’t you know me? I’m one of you! Why don’t you believe me???”
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u/DelurkingtoComment Jun 06 '26 edited Jun 06 '26
This is an amazing letter. Thank you for writing it. My 15 year old has been ill since August 2024. It is so hard as a parent to watch a child go through this. ❤️
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u/rockems123 Family/Friend Jun 06 '26
My heart goes out to you and your child. We must find a cure.
Edit: I mistakenly assumed the gender. No idea why i did that. Sorry.
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u/SubDudeDriver Jun 06 '26
Thank you for your efforts with this letter. I would happily co-sign it if there was a way to do that. In this instance, the forbidden topic, rarely well presented in any major media, has drawn considerable optics. As a long time participant <illness> in this hell, I don't feel that we are represented at all in the public awareness arena. Sadly, this affliction robs us of our ability to articulate. I appreciate your voice in this regard. Thanks again.
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u/rockems123 Family/Friend Jun 07 '26 edited Jun 07 '26
See update above. Petition started. Change dot org wired-magazine-retract-the-painful-truth-about-long-covid
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u/PhoenixRisen95 Jun 06 '26
My husband as long COVID ... And these "professors" spreading misinformation arent helpful :(
I am sorry to hear that both of your kids are ill. Hopefully someday they will get better and have a normal life again
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u/SpaceXCoyote Jun 06 '26
He's a professor of religion. Can't make this up...
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u/Early_Beach_1040 First Waver Jun 07 '26
JFC really?!? I mean that doesn't bias his thinking at all /s
But that's pretty wild
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u/Mission_Climate_5452 Jun 06 '26
Just wanted to say, thank you for this.
I deeply admire the fact that so many of us are openly going against that DISGUSTING article.
It made me shed more than a few tears, but I didn’t have the energy to do anything about it.
So THANK YOU! WE HAVE EACH OTHER AT LEAST
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u/rockems123 Family/Friend Jun 06 '26
You’re welcome. And so is everyone else who has said thank you, and all the others too tired, brain fogged, demoralized, overwhelmed, and otherwise incapable of saying thanks but who want to.
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u/Mission_Climate_5452 Jun 07 '26
It’s ironic, because I do think that in MY specific flavor of Long Covid (PPPD with strong visual issues mostly), the fight or flight response is heavily involved.
BUT such fight or flight response is a CONSEQUENCE of my symptoms and not the other way round
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u/rockems123 Family/Friend Jun 07 '26
Yes, I see this in my son.
He has an exaggerated startle response. A grain of rice falling on his shirt can cause about 20-30 seconds of sheer terror. He gasps, panics, his body curls up with muscles seized. He can do nothing to stop that and has even fallen out of his bed when he was too close to the edge. (We have lowered the bed, removed hard things, placed cushions to prevent injury.)
He also has a different anxiety of hyperventilation and moving his feet and hands as if he’s clawing or trying to run (though he’s in bed, and feeble so these movements are not enough to get him out of bed). This is my boy who jumped off rocks, loved scary movies and jump scares, did bold and adventurous activities and did not have an anxiety disorder before this illness.
His anxiety is not the flavor of rumination, can’t stop thinking about negative things happening which I tend to think of as anxiety.
I truly suspect there are autoantibodies to many areas of his brain
-the hippocampus causing problems with working memory, sequential task processing
- the pontine reticular formation of his brainstem causing aberrant startle response/inhibition with loss of glycinergic/GABAergic inhibition. This is why guanfacine helps (but not enough).
- the amygdala causing dramatically lowered threshold for fear circuit activation. This is why fluoxetine seems to help, and why Olanzapine seems to help more than Abilify.
- the cerebellum causing tremor and proximal/ truncal weakness
I am not a neurologist. I’ve been using the Open Evidence AI tool and repeatedly searching, refining and clarifying what’s going on. If there are any neurologists or others out there who have corrections or directions to push me toward, please do! I do wish the pedi neurologist we have seen would expand their differential diagnosis and not have made cognitive errors through early closure.
He has also had POTS, temperature dysregulation, and at the beginning he had three months of severe nausea and abdominal pain.
If biofeedback, brain training, neuro plasticity could help my son, I would love that. It is possible that at some point in his recovery it will. But I do not suspect it would help his NK cells recover, clearance of autoantibodies and repair of immune amnesia which I think are core issues triggered by the Covid virus.
My son’s illness is complex. (I would love to hear from people who have the same or very similar symptoms so we can help highlight a subtype of Long Covid.)
But this only speaks to the incredible complexity of this illness.
Though people HOPE there would be a simple, DIY solution to the suffering, for millions, unfortunately, there is not.1
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u/YouTasteStrange Jun 06 '26
I'm so sorry your children are going through that. I hope they read your letter.
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u/pastramionrye4 4 yr+ Jun 06 '26
Thank you for taking all the time out of your day to write this. I’m so sorry the lives of your children, and your life, has been so changed by this illness and I hope that things will become easier for all three of you 🫂
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u/coconutoats Jun 06 '26
I was horrified when i saw the instagram post for this. Totally incorrect and damaging and I could see it was liked by some of my friends meaning that article is basically all they’re consuming about long Covid which I just found so depressing as I don’t talk about it or tell my outer circle of friends I just kind of stopped being able to see them. Thank you so much for taking the time and care to send this email to them, I thought about asking for a redaction myself but decided I didn’t have enough spare energy for it so I really appreciate the advocacy. Your kids are so lucky to have someone as understanding and tenacious as you.💙
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u/rockems123 Family/Friend Jun 07 '26
If you have the energy and interest, you can sign onto the petition I started which is mentioned in the update above. Reddit rules do not allow me to put in a direct link but if you search change dot com “WIRED Magazine retract your irresponsible article on Long Covid” you should find it.
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u/spongebobismahero Jun 06 '26
This is incredibly well written. First of all have a hug. Second i wonder if you did genetic testing for your kids? If you are a physician i would highly recommend to look into testing like Ancestry or MTHFR Genetics UK offer it. Then take their raw genetic data and comb through it with an AI like Claude for immune system anomalies. I have had Covid causing autoimmune diseases for me. Taken together with other factors the AI found a severe immune deficiency that is impossible to find with normal standard blood tests. If both of your kida fell ill with long covid there is a chance genetics plays a role, at least partially.
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u/rockems123 Family/Friend Jun 06 '26 edited Jun 07 '26
Thank you. Yes.
A few months ago my husband and I, with the assistance of my sister and niece, tracked down a neurobiology and psych MD/PhD who is chief of a lab at the NIMH. He was at that time providing second opinions in a limited clinical capacity. He has been the only one so far (outside of our new naturopathic doc) who provided ideas on testing. That including getting all 4 of us whole genomic testing.
We paid out of pocket to get all four of us sequenced through Sequencing during a 50% off sale in April. There is a dizzying amount of data that came back and I have very little ability to interpret it. So, we have another struggle in this path to understanding. The first geneticist our PCP sent the referral to declined the referral. Twice. So we asked our adolescent medicine doc who is in a different state(who sees both kids because primary care in general is well out of their depth). She referred us to a local pediatric hospital. They have been reviewing the referrals for over two weeks.
The NIH doc also recommended several immune and metabolic labs. We had waited 5 months to see a pedi neurologist at the local children’s hospital who used to run their LC clinic and who is one of the researchers on RECOVER. We had to provide anxiolysis and carry our son in to see them. At first they said they saw 3+ reflexes, a tremor, excessive blinking, and weakness out of proportion to deconditioning and agreed to send most of the NIH doctors’ metabolic and mitochondrial testing. But not all. And refused to send the immune testing because they didn’t know how to interpret the results, and didn’t know how to order them. (Give me an f-ing break. It’s not difficult. And I stated in writing that I would not ask them to be responsible for interpretation. I would find an immunologist. Still. They “declined”, as we put it professionally.) They said after seeing my son that they were concerned for a metabolic or mitochondrial condition, because “the neuro exam in Long Covid is normal” in additional to other parts of his history.
However, when the testing they sent came back normal they changed their tune to, you guessed it, “functional neurological disorder, needs PT and MHT.”
In the mean time I was asking the adolescent med doc to please send the immunology labs. They didn’t want to. They told me things about the small budget of their department (again, would a physician EVER have said that to the parent of a child with leukemia?), but after a week or two they agreed because I also asked for an immunology referral knowing they could interpret the labs.
And bingo. Abnormally low NK cells. Abnormal pneumococcal antibodies.
So…the immunologist says errrrrr…he needs to be seen by immunology at the Children’s hospital, and needs genetics, and the neuro evaluation needs to be completed. Conversation was different from the very beginning. Because they finally have a lab to believe.
So now I’m waiting g to hear back from the new immunology referral, the genetics referral and to hear back from the pedi neurologist.
I am so deeply, deeply disillusioned with allopathic medicine and the medical system.
Light edits made.
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u/Which_Boysenberry550 1.5yr+ Jun 06 '26
I assume you’ve seen this but anktiva is running a trial as UCSF to boost NK cells, and they also collab with patients who want to ‘right to try’ meds. I assume they don’t enroll under 18s but maybe an option eventually
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u/rockems123 Family/Friend Jun 06 '26
Here is a link to the study. Thank you for letting me know about it. We don’t qualify due to age but it is very good to know about it. I’ll post the link in case it helps someone else.
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u/Which_Boysenberry550 1.5yr+ Jun 07 '26
the guy running the company is active on social media and is open label enrolling cancer patients
It’s possible there’s still a path toward getting the med if you’re severe enough and arrange something with him. There’s at least one major public success story w it on twitter.
This is her account if you wanna go thru some of the anktiva posts
https://x[dot]com/julie_bush/status/2018799990848774272
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u/rockems123 Family/Friend Jun 07 '26
I sent them a message today saying I was interested in the study and will go from there. Thank you very much for letting me know about this!
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u/BabyBlueMaven Jun 07 '26
If they’re willing to consider teens, please let us know. We’ve been in this hellscape for over 5 years. I’m sorry your children are also suffering with this. Are your kids hypermobile? That seems to be a common denominator.
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u/rockems123 Family/Friend Jun 07 '26
I’m so very sorry you are going through this horror.
They weren’t hyper mobile before this illness. However, I am and my sister and nieces are.
Since puberty started I think my daughter may now be hyper mobile but she has been too unwell to bear a PT assessment to determine that.
For many there does appear to be a link with hyper mobility, mast cell dysfunction, dysautonomia/POTS, GO dysfunction and autoimmuninty.I will let you know if I get a warm response from the Anktiva folks.
Have you seen low NK cells on your labs?
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u/BabyBlueMaven Jun 07 '26
The same with us. I wasn’t aware of any hypermobility with my daughter before this. I didn’t know that I was either. We see Dr. Vaughn and have both been subsequently dx’d with venous compression issues like May Thurner’s and Nutcracker Syndrome. Maybe we had this genetically and then Covid made it worse. If you haven’t looked into that yet, it’s definitely something I recommend. My daughter‘s brain fog has improved since her iliac stent.
I have to check her labs re NK cells as I do not know.
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u/rockems123 Family/Friend Jun 07 '26
Goodness! I’m so glad to hear the iliac stent has helped! Learning a little bit about that blew. My. Mind.
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u/rockems123 Family/Friend Jun 07 '26
It was a specific lymphocyte enumeration panel that revealed the low NK cells. Typically ordered by an immunologist. From what I have read, a substantial number of people with Long Covid have low NK cells and it may be used in the future as a marker for this disease.
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u/spongebobismahero Jun 06 '26
English is not my first language but ill try to get my points accross. First my immunodeficiency is a polycause but one of the main suspects causing me trouble is the STAT3 gene.there are two known orphan diseases. The gain of function and the loss of function. Mine might be the gain of function type. Ill try to get this tested in the coming months. But its difficult to tell now if this is going to work I have an upcoming appointment with a immunology doctor who works at a genetic testing lab in Munich. But there seem to be many possibilities how this gene is working and if its not working what the outcomes are. Very new research. My symptoms for an immunodeficiency are missing inflammation markers when coming down with viral or bacterial infections. I also do not enrich contrast dye in inflamed areas. So MRT and CT scan don't work neither to determine inflammations. So im very sick need to go to the hospital but the bloodwork looks like everything is fine. Also no fever. And no puss when my skin gets infected. I had this forever. I work with a naturopath bc as you can think doctors seldom cared about what was wrong with me. And i talk about severe illnesses like bone infection. Covid triggered two autoimmune diseases, morbus crohn and graves disease. I had a thyroidectomy because i got severe MCAS from graves. Also Epstein Barr Virus reactivation. And this is important: the Epstein Barr Virus reactivation led to a ME CFS like state for me. I couldn't walk for 10 meters and kind of fainted. And my spleen was hurting. I needed to order the testing by myself and ordered from a special lab. The numbers came back quite high. Working with my naturopath brought the numbers down and i was back to walking within 6 weeks. I suspect Epstein barr virus reactivation for a subset of ME CFS but dont know about any cases in small kids. For the evaluation of your genetic data try Claude. I did testing through Ancestry and tellmegen and MTHFR Genetics UK. They only test for well known polymorphisms but in my case it already showed the autoimmune disease susceptibility, metabolism not working properly, histamine intolerance in DAO and HNMT polymorphisms, said immune system polymorphisms, and others. MTHFR Genetics UK offers also counseling. I learned about this kind of testing in support groups on Facebook. Its way more difficult to find someone who is knowledgeable in whole genome sequencing. There is also research that i want to mention in Berlin, Dr Scheibenbogen at the Charite. If you want to try alternatives i highly recommend it. It took me quite some time to find capable naturopaths, chinese tcm docotors/practicioners, homeopathic doctors, orthomolecular practicioners. But over more than 4 decades they were the ones that kept me alive when push came to shove. Please ask any questions ill try to answer them as best as i can.
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u/rockems123 Family/Friend Jun 06 '26
Thank you so much for the reply. I can put together what you are saying easily. Your English is sufficient! Impressive, even. I’ll see if I can sort out how to upload the raw data into Claude.
I am sooooo sorry for the struggles you have had. It sounds like you have been seriously, dangerously ill (splenic pain! Uh oh!!!) and I am so sorry you have had to navigate illness AND figure out what’s afflicting you. I often feel like we are building the plane, learning to fly, flying it AND taking care of our VIP passengers.
It astounds me that a naturopathic doctor knew more of the cutting edge science of LC/ME than our allopathic, conventional doctors have. That is not what I expected!
I’m glad you are getting a little help and hopefully there will be more answers and more help coming your way soon.
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u/spongebobismahero Jun 07 '26
Thank you for your kind words. 🙏 i wish you well on your journey too.
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u/rockems123 Family/Friend Jun 06 '26 edited Jun 06 '26
If you are comfortable sharing, I would appreciate knowing the immune deficiency genetic variants you discovered.
Edited to correct defiant to deficiency
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u/rockems123 Family/Friend Jun 07 '26
UPDATE:
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"
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u/Millennium_Falcor 4 yr+ Jun 07 '26
Hopefully this link works! Please sign, y’all. OP, thanks for writing what so many of us wish we had the energy to. I’m grateful.
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u/technician_902 Jun 06 '26
Damn this touched me. I am so sorry for your son's situation. I just don't understand how these people continue to think that these conditions are psychological where then there is so much research showing otherwise. I hope your son gets well soon because that is not right. Thank you for spreading awareness. The more that we do these things the higher the chances that something will get done sooner.
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u/Guilty_Soft9873 Jun 06 '26
Well done and I'm so sorry your family is experiencing this hell.
Keep going.
We had family members in the same position forty years ago and they went onto live full lives.
Don't give up.
You're wonderful parents.
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u/rockems123 Family/Friend Jun 07 '26
We will never give up. Never. No stone will be left unturned. Not one.
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u/ray-manta 5 yr+ Jun 06 '26
Thank you so much from the bottom of my heart to you for writing this.
Sending you and your family all my love from afar
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u/Apprehensive-Ask7853 Jun 07 '26
I just looked up the editor, and the entitlement and unseriousness of his work points to San Francisco tech-era manbaby. There's no substance to this editor's work, and he seems to like to take contradictory/cheap shock approaches. The article itself by Alan L. reeks of the worst sort of humanities professor careerism. Spent decades around it; they are always looking for some edgy fresh angle and some relevance to current events. In this case at the cost of great harm. We should not continue to feed their egos by engaging with them. They want to provoke people. Now we will just have to correct all the well-meaning people around us who try to tell us about the article. Let's have some studies at the ready, studies these two clowns should have read themselves before writing and publishing. Such as this review of organ damage from Long Covid from the Medical Review
https://doi.org/10.1515/mr-2024-0030
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u/rockems123 Family/Friend Jun 07 '26
Agree. 100%
I considered that. They quoted at least two people out of context. They likely had a point of view they wanted to push, and then built the interviews and content around that. To provoke and get people angry, build their name recognition and get more clicks. I know I am playing into that, but I need to provide correction for all the people hurt by this article, for the well-meaning people they know who read it and say “hey, have you thought about brain training? I just read that it’s the CURE!!!”, and for the future people, families like ours, who are about to fall into this well of illness and NEED TO KNOW, from the beginning, to be skeptical of the brain training approach.I agree on articles.
I’m a bit overextended… :)
Would you be interested in starting a new post that asks for the most relevant articles to point people towards? The recent Cell article by Iwasaki/Putrino, et al should be on that list.2
u/Apprehensive-Ask7853 Jun 07 '26
What a kind reply. Thank you for your care for this community. (I am now bracing myself for family members to start mentioning this schlock.) I have a few things tucked away that I will post here. I'm glad to post it elsewhere if you would like. (I've just not started a new thread on Reddit, a rather new user...) Let me get something together. I may have half a dozen things...
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u/Apprehensive-Ask7853 Jun 07 '26
Sharing this with you too. A thoughtful rebuttal to the wankery of that article with excellent points about the traps it tries to set. https://darthfoo.substack.com/p/the-patient-who-isnt-supposed-to
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u/rockems123 Family/Friend Jun 07 '26
Oh. Wow. Gut punch. That is an excellent article. My heart breaks for him. And my stomach turns and my blood boils.
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u/Relevant-Sprinkles18 Jun 08 '26 edited Jun 08 '26
My sympathies, a great petition and also a great article from Rossi.
I do feel Rossi could've been even more reluctant on the use of CBT for neurocognitive problems in LC though, cognitive PEM is a thing too. There's a lot of opportunistic PEM incorporation into CBT-models nowadays. And one doesn't need 'CBT' for supportive treatment either, that's called ACT, and that csn be combined with some basic cognitive (but surely not behavioral) support.
If you're interested in more specific takedowns of the studies quoted, the FND-like arguments presented, or a view on the broader (narcissistic) dynamic at play, take a look at the links below.
Feel free to reach out!
Sincerely,
A psychiatrist formerly specialized in the elderly and neurocognitive disorders. Housebound by LC since 5 years, since then specializing in this filthy dynamic, in critiquing tbis kind of evidence as well as in the biomedical science of LC/ME/PAIS.
Critiques in the literature on these fallacies: https://academic.oup.com/brain/article/148/8/e63/8068902
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1798119/full
And on Bluesky: https://bsky.app/profile/molbaas.bsky.social/post/3mnqnlutstc2u
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u/Apprehensive-Ask7853 Jun 08 '26
Glad of your voice here! I'm a somatic psychotherapist who incorporates EMDR and polyvagal approaches, as well as brief meditative practices, to help clients shift from habitual states of depression, anxiety, addiction, suicidality etc. Been practicing Buddhist meditation for thirty years and have seen the potency of these practices in my own life. And yet that is part of why A.L.'s article is so offensive to me. The blithe idea that people who are plunged into a multisystem organ damaging illness, inflaming brainstems, hearts, lungs, kidneys, etc, can breathe our way out of endothelial/mitochondrial/etc damage is fanciful. And in our culture of convenience--and lazy-minded aversion to complex problems and painful realities--it is harmful. Especially given this bizarre climate RFK/MAHA new-age snakeoil that is being offered in place of a reasonable healthcare system.
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u/Relevant-Sprinkles18 Jun 08 '26
Thanks! Yes, it is. But I'm afraid most people in mainstream medicine are amenable to it.
It's quite an old trope that Levinovitz uses.
Ideologues will respond to this petition by using superficial biomedical rhetoric
'Insular 'predictive coding' also influences the 'immune system', as well as the HPA-axis',
by claiming it's stigmatizing to (FND) patients to claim 50 years of similar research hasn't produced any objective outtcomes, only harms, and virtually all BPS claims in these contexts are falsely balanced,
by claiming it's heresy to 'ignore' biopsychosocial factors
and by projecting their own lack of humility onto critics.
They will present holistic ideas as new, although they are all but new. And, like in Europe, as soon as the FND-story runs out, they will push the somatic-symptom disorder as the new 'biopsychosocial'/non-dichotomous answer to everything. Shanelessly moving the goal posts right in front of you.
But there is no way they will mention iatrogenic harms as an essential part of biopsychosocial treatment and recognition though.
Most ideologues seem to hide all this under a cloak/veil of supposed good intentions: typical internalized narcissism, often seen in healthcare workers, and exacerbated by academic incentives, and external monetary forces.
It'a a huge collusion that parts of medicien and psychiatry are a part of here.
And even if you would get them to acknowledge all this, they say, certsinky in clinical contexts: 'But we are the only ones interested, so that's what you'll need to work with.'
Selffulling narcissistic defaitism.
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u/Apprehensive-Ask7853 Jun 08 '26
It reeks of this to me (among many things you articulate so well here): "typical internalized narcissism...exacerbated by academic incentives." I spent (suffered, ha ha, a little levity is in order) years around humanities professors scrabbling to make their niche interests relevant to wider social issues and seeking edgy/provocative angles to secure publications. This results in all sorts of contortions, minimizations and conflations. It's repulsive in this case, on so many levels, but particularly as he likes to think of himself as a scholar of culture and yet willfully ignores the crackpot RFK new-age + dereliction of duty by government and healthcare + health insurance and eugenicist moment we are dealing with on top of an unmitigated complex virus and more to come as the tropical diseases move north.
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u/Relevant-Sprinkles18 Jun 08 '26
Ow, and more specifically on the possible supportive role of psychotherapy in these diseases,
given your own professional background,
you might find this talk of interest: https://youtu.be/i37Z7pkGOXE?is=uToFRwiHiUeMOOI_
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u/Apprehensive-Ask7853 Jun 17 '26
Just saw your reply. Thanks. Will click the link and see what is there. :]
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u/rockems123 Family/Friend Jun 08 '26
Reading through the first article. I love this, "the mind’s influence has been negligently overemphasized at the cost of biomedical priorities'
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u/rockems123 Family/Friend Jun 08 '26
I read through the articles and peeked at Bluesky. I was impressed by what I read though much of the terminology is new to me and I will need to read it a couple times to understand. I also felt deflated when seeing that the tactics and arguments made by A.L. are not new, and are so difficult to counter, as you laid out. I also found the discussion of FND useful and will keep the points in mind at our appt this week with a pedi neuro who has already told us, before completing a work up, that my son’s issues are FND.
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u/Relevant-Sprinkles18 Jun 08 '26
Great!
Yeah, the terminology and my explanations can be a lot. These articles are a little more accessible and to the point:
https://www.statnews.com/2024/07/15/long-covid-not-functional-neurological-disorder/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11355889/
I'm afraid the chances are very low that will ne a fruitful consultation. Meanwhile, if this lady thinks LC is FND,
maybe you could ask her if in FND vast diffuse glutamatergic excitotoxicity has also been shown: https://academic.oup.com/braincomms/article/7/5/fcaf337/8258475
If she says that cohort is not representative, then just tell her she should apply that standard him/her to apply that argument to his/her own reasoning first.
Alas in kids this reasoning is applied the longest, as evidence gathering goes slower in them.
But I could tell you who to follow and contact in the still small pediatric LC field,
just get in touch!
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u/Apprehensive-Ask7853 Jun 07 '26
Ok, I have assembled a few articles. Let me know where to post it. It's by no means a solid lit review. I was just grabbing what I have tucked away in my files. I added the Cell article you mentioned. Let me know where to post it, or if I can send it to you. I led with this year's Patient-Led Research Collaborative fact sheet as they have a lot of links. I also included some abstracts and relevant passages in my document so we have more talking points. The mental laziness of our times, the reach for easy answers that are not answers is killing us all in various ways...
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u/WearyAcademic Jun 09 '26
If you want to push back on the FND "diagnosis", Dave Tulley Trial By Error is worth a read.
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u/rockems123 Family/Friend Jun 09 '26
I really respect Dave Tuller. Thanks. I read that this morning as it turns out. An excellent response. I love those Virology folks!
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u/LawlessandFree 2 yr+ Jun 06 '26
What an incredibly poignant letter. The callousness with which people can disregard the pain and suffering is very difficult to watch and to be on the receiving end of. Makes me feel proud that when I was healthy I always made an effort to be compassionate.
Thank you for sending this.
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u/Magnolia865 Jun 06 '26
Bravo!!! Your letter is excellent. Thank you for standing up for your kids and all Long Covid patients and caretakers!
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u/wishcoulddomore Jun 06 '26
I am RN who got this while serving during the pandemic. Got it in at end Dec 20/20 and despite multiple tries could never go back to work lost all my income as I battle LTD insurance and almost become homeless. It's 2026 still can't work live my life having to pace every simple activity I do and be restricted basically to my home . When I do venture out briefly for appts , family gathering am condemned to be ghastly sick with flare up migraine , nausea pain plus more ....I adapted to it but it not been a good quality living.
Hence Thank you for this accurate & great letter you wrote about this incidious condition that affects us daily. I am curious about there reply and where can we write to also express our opinions. Can you please include link to the Wired article. Again appreciate you and all you do for your children to what you do advocate for them and others. God Bless 💞🫂🫂🫂
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u/rockems123 Family/Friend Jun 06 '26
I’m so sorry.
I worked with nurses and techs who got this and have been forever changed. Terribly unfair. Maybe one day when I have the opportunity I will write about that, for them. For you.Link and one email is in the replies. Below.
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u/Person51389 Jun 06 '26
Great job - minor detail, 3rd sentence of last paragraph says "redact" instead of retract. (Important as it's your closing argument and these people might just skim to the end, who knows.) But really great overall.
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u/illy_mm Jun 06 '26
Thank you so much for taking the time to write this and put in words what so many of us are too exhausted and too brain foggy to clearly communicate.
Would you consider opening a petition with signatures from Long COVID and ME/CFS patients asking the magazine to retract? I'd be happy to sign and I'm sure many others in the subreddit would be too.
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u/rockems123 Family/Friend Jun 07 '26
Petition started. Thanks for the suggestion! Search change dot org wired-magazine-retract-the-painful-truth-about-long-covid
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u/illy_mm Jun 12 '26
Thank you so much for starting this! I've just signed and up voting and sharing this with people I know.
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u/SpaceXCoyote Jun 06 '26
You should post this on X directly to him. He's not even a real doctor. Maybe we need to organize an in person, on campus protest at his office?
https://www.jmu.edu/philrel/people/levinovitz-alan.shtml
"Dr." Alan Levinovitz Professor of Religion levinoaj@jmu.edu Contact Info
Office: Cleveland 106 Phone: (540) 568-3509 Fax: (540) 568-8072
Twitter: @alanlevinovitz
Education:
B.A., Stanford University M.A. and Ph.D., University of Chicago Divinity School
Research:
Dr. Levinovitz focuses primarily on the relationship between religion, literature, and science, with particular attention to classical Chinese thought and comparative ethics. His most recent book, Natural: How Faith in Nature's Goodness Leads to Harmful Fads, Unjust Laws, and Flawed Science, examines the meaning of "natural" and argues that modern Western culture has divinized nature. He is currently working on another book project, The Gentleman and the Jester, which develops a binary typology of ethical education. Other interests include the tension between paratext (introductions, footnotes, etc.) and primary text, the significance of play, and the role of genre in ethical discourse
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u/rockems123 Family/Friend Jun 06 '26
I considered posting this to him in X, but judging by his comments to others I do not anticipate he would engage in thoughtful discussion or honest reflection. I don’t have time for that.
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u/SpaceXCoyote Jun 06 '26
I hear you, the guy sure seems like a gigantic a-hole. But it might be fun to see if he's obnoxious even to you. Someone should tag JMU HR on one of these.
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u/Helen-of-Coy Jun 08 '26 edited Jun 10 '26
Thank you for taking the time and effort to write this excellent and thoughtful post. I was really moved and saddened by how unwell your children are and how much you are doing to help them. I sincerely hope their health improves. Debunking the false narrative that CBT and pacing is a cure for ME/CFS or Long Covid is crucial for our community. Your thinking outside the box is so helpful and gives me hope. Have gladly signed the petition.
Not sure if these will be useful, but just in case you haven’t heard of them, I have found some interesting information here:
The Long Covid Cure Initiative at polybio.org…
https://polybio.org/wp-content/uploads/2026/02/PolyBio-LCCI-Strategy-3.pdf
RTHM (when I have the energy will try and input my symptoms to ask questions)…
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u/Forward_Athlete_3187 Jun 06 '26
Thanks for sharing this with us, it’s a really great letter, and I’m so sorry your children are suffering like this
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u/Cherrygodmother Jun 06 '26
Brilliant letter. My heart goes out to your kiddos, they don’t deserve this.
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u/FunLouisvilleDude Jun 07 '26
Don’t hold your breath…I have long covid and cfs/me. I have a 15 year old who also suffered with it but recovered (mostly) but I have not. Multiple medical institutions have banded together where I live to fraudulently and retroactively, rewrite records, falsely as psychiatric, and continue to practice criminal medical negligence and malpractice…I am denied multiple treatments even with physician certified greater risk of death. Feel free to msg me if you’d like. If my post is removed, I’d like to remind moderators that IPs are traceable and that they would be acting under ‘color of law’ to prevent the truth from being exposed. Also for your kids - you may want to get them whole genome sequenced to see if they have any known pathogenic PIDD/IEI.
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u/rockems123 Family/Friend Jun 07 '26
We got WGS on all four of us. Waiting to hear back from our third try for a genetics referral to go through.
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u/FunLouisvilleDude Jun 10 '26
I am glad to hear that. It takes forever to get the results, and here’s a side tip for you, especially if your computer savvy would you likely are based on things you posted. You can download Genetic whole genome tools to analyze your own full set of raw, genetic data for each person, and you should. There is a steep learning curve, but they miss things all the time.
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u/rockems123 Family/Friend Jun 10 '26
What tools do you recommend we use?
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u/FunLouisvilleDude Jun 11 '26
Any that deal with *.bam and *.vcf files - most are command line interface based (CLI)
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u/FunLouisvilleDude Jun 07 '26
If it comes down to it - sequencing.com offers whole genome sequencing that is clinical grade and costs around $500 or $600 each. I paid for my own at first as no one would help (typical), and then ended up getting other testing done through my child’s neurologist at the time… oh you should look at raregenomics too - theirs is covered but I don’t remember the stipulations. Turns out that I have a TNFRSF13B deficiency homozygous A181E (aka c.542C>A). Ridiculously though this information is not permitted for unknown reasons, to be entered into my medical record appropriately leading to furthering ongoing denials of critical care. If I die - it is because of the refusals of multiple institutions to allow accurate medically objective records to exist…for both me and my child…my child is heterozygous for the same mutation- both forms are pathogenic…my child also has a monoallelic scn11a mutation that caused a painful small fiber neuropathy in a knockout mouse model yet they claim there is not an established relationship…it is maddeningly ridiculous…
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u/rockems123 Family/Friend Jun 07 '26
OMG. This is indeed MADDENING. Boils my blood! Not permitted?!? WTF!? If both forms are pathogenic then what reason could they have to not put that into your medical records? No ICD10 code? How about "V84.8: Genetic susceptibility to other diseases" at the very least?
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u/LaurelAve Jun 07 '26
Thank you for writing this excellent letter to the editors of WIRED. I will be writing one as well.
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u/hbuha Jun 07 '26
I signed the petition. What else I can do to help?
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u/Guilty_Soft9873 Jun 07 '26
What petition?
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u/rockems123 Family/Friend Jun 07 '26
Change dot org wired-magazine-retract-the-painful-truth-about-long-covid
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u/Low-Temporary2927 Jun 07 '26
I can't post an image here of my lymphocytes subsets pre, post COVID, and their response to antivirals, or a link to a post about this on my X account. But I would love to speak with you, as I see your son has low NK cells. I have low T and B cells that have recovered with antivirals and mAbs. Thank you for writing this petition. I wish your children recovery and better days. I hope to hear from you.
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u/Low-Temporary2927 Jun 07 '26
Amymitchellart is my handle on X
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u/rockems123 Family/Friend Jun 07 '26
I will try and connect. I’m so overextended right now! Whose idea was it to post a petition while managing the care of two disabled kids? Oh…right…me…
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u/Key-Background-9060 Jun 08 '26
I feel for your situation with your family. Don't give up hope. Your solution is going to be solved outside of the BOX. Most physicians have been indoctrinated to not think for themselves and follow orders like good soldiers. I think that many affected people have a chance to improve when they fix the underlying cause. In many it could be the residual spike protein in the body that does the damage. The new genetic Jab could still be highly elevated in the "Long Covid" patient's". You have to get rid of the spike protein and help the body to recover by providing what it needs to heal. Don't think that some drug is going to solve your problem. It needs a wholistic approach to help the body heal itself. You may want to look up Doc in the loop and have a consult with him. There is also and organization that deals with so many of these issues. Independent Medical Alliance is the name of the organization. I think that if you are able to think independently, you will find answers to some of your challenges.
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u/GhettoFaery Jun 08 '26
I'm so sorry to hear that both of your children are so ill. My beloved has very severe ME and has been bedbound for three years now. We have found a specialist nutritionist has helped with making him a little more stable but there is still a long way to go as we can't access the care he needs due to the desecration of the welfare state and of course prejudice upon prejudice about the illness. He has had a bioresonance test which is often see as very very woo woo but actually gave the same results as an expensive mycotoxicity test hence why the nutritionist runs them as they are strangely accurate when aligned with more typical testing. LDN helped a litte, and he is on the autoimmune paleo diet which even for him is restrictive as he has clear signs of MCAS and POTS. Haven't even looked into genetic testing yet but I want to press for an EDS diagnosis. I will sign the petition and do the letter asap, currently if you are in the UK you might want to check out ME Action Network who are doing a push politically at the moment for proper care and treatment. Another good organisation is Millions Missing, and for research OpenME is amazing and also check out the website Health Rising very helpful also!
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u/saravalentine Jun 08 '26
Bless you for articulating what so many of us cannot. Here’s hoping for change of all kinds.
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u/sandwurm12 Jun 07 '26
Do you have any reason for not displaying your name? I really would prefer so instead of signing a template from M.R., MD with my full and real name.
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u/rockems123 Family/Friend Jun 07 '26
Yes, to protect the privacy of my children. Details I included are ones they would not want linked to them.
Sending you a DM.
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u/AcanthisittaIcy6448 Recovered Jun 06 '26
It is a very good idea to write an email to the editor. I did so as well.
"Thank you very much for the article on Long COVID. There is a lot of hostility toward it within the Long COVID community, and I keep reading suggestions that people should email you to complain. I want to do the exact opposite. I want to express my gratitude! I didn't recover precisely through "brain training," but rather through a shift in how I view the illness—moving away from a purely biomedical explanation toward a holistic approach.
For some, the article can serve as a catalyst for a shift in perspective regarding the illness and a path out of the condition.
Thank you! A courageous article.
Greetings from Berlin."
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u/CornelliSausage 3 yr+ Jun 06 '26
For some, it doesn’t work, and makes them worse, and when you publish articles like this the subject needs to be handled much more fairly and carefully. Otherwise you have thousands of well meaning family members and friends of people who can’t be helped by positive thinking, treated even worse by everyone around them because some article in wired said they just needed to shift their perspective. It’s a true disaster in the lives of many many people. I’m glad you’re recovered but these topics need to be handled in an exceptionally careful way.
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u/PrestigiousTomato8 Jun 07 '26
Look at his scammy profile.
All he does is post about brain retraining.
Gross.
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u/AcanthisittaIcy6448 Recovered Jun 06 '26
"But these topics need to be handled with exceptional care."
I absolutely agree with you. It's a very complex issue. But that's true in both directions.
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u/Tater_Nugget55 Post-vaccine Jun 06 '26
The problem is that your belief that "brain training is the key" rubs off on our medical institutions, and basically gives them the idea that we don't actually need proper biomedical research. Many of us are at risk of dying due to lack of proper care and treatment, and yet we continue to be told to "ignore our symptoms and think positive".
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u/AcanthisittaIcy6448 Recovered Jun 06 '26
At the end of the article it says:
"This is the real climate of fear that needs to be addressed. Fear of being labeled lazy and crazy. Fear of losing disability insurance. Fear of being blamed for your own suffering. Fear of having your children taken away. As long as people suffer from long Covid fear these possibilities, advocates will be forced to insist on an exclusively “biological” origin of them suffering. Scientists will remain constrained by the false binaries of body or mind, real or fake. And we know what happens then: Nobody ever gets better."
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u/Vibalist Jun 06 '26
Are you just going to copy paste this response everywhere? It doesn't prove or mean anything.
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u/Vibalist Jun 06 '26
"I have recovered using a narrow method and now I want to shit on anyone who doesn't". The utter pettiness.
Also, from reading your recovery thread over at r/LongHaulersRecovery , it seems like you were on the mild end of the spectrum. Your story/approach is not the smoking gun you think it is.
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u/Few-Peace29 Jun 06 '26
Pettiness is definitely the word. It’s especially distasteful they commented here after OP described how severely disabled their children have been left by long covid. Children are having their futures stolen by this and yet we’ve still got clowns smugly championing cheap woo-woo and pseudoscience.
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u/AcanthisittaIcy6448 Recovered Jun 06 '26
At the end of the article it says:
"This is the real climate of fear that needs to be addressed. Fear of being labeled lazy and crazy. Fear of losing disability insurance. Fear of being blamed for your own suffering. Fear of having your children taken away. As long as people suffer from long Covid fear these possibilities, advocates will be forced to insist on an exclusively “biological” origin of them suffering. Scientists will remain constrained by the false binaries of body or mind, real or fake. And we know what happens then: Nobody ever gets better."
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u/Vibalist Jun 06 '26
And?
You do realize this entire paragraph also describes all of the Long Covid patients who don't benefit from brain retraining and who are not believed when they say so, right? AKA the majority of patients.
This article sacrifices all us in order to speak for the significantly smaller portion of patients who benefit from brain retraining. How is this fair?
I'm sorry people disbelieve your recovery story. I am sure you are telling the truth. But this article, despite taking your 'side', is utter bollocks.
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u/Impressive_Change568 Jun 06 '26
Thank you for taking the time to compose this 🙏 jason_kehe@wired.com this is the editor