Photon Turtle

What started as a mild COVID infection has spiraled into an extremely severe case of Long COVID and Myalgic Encephalomyelitis. Over the past 2 years, I’ve suffered numerous life-altering seizures and have been hospitalized multiple times. The last seizure left me completely disabled—I can no longer sit, stand, or walk. I can’t feed myself. I can’t even brush my own teeth. Every single day, I endure excruciating, relentless pain that never lets up. And because of my neurological symptoms, I can’t interact with the outside world in any meaningful way. I spend all my days with my eyes closed and my ears plugged, suffering. It feels like I’ve been trapped in a dark, silent prison of pain and despair, a form of solitary confinement that no one should ever have to experience. This is truly a living hell. I grew up in poverty but worked extremely hard and built a successful and joyful life despite countless heartbreaks. All of it came crashing down in the midst of my youth because of a simple infection. I ask myself every day, Why did this happen to me? But I know it’s a question only the realm of the divine can answer. The medical industry has failed me as it has so many others— there are no clear solutions, no guaranteed treatments, only a few theoretical options that are prohibitively expensive or completely unproven. Myriads of so-called experts and specialists have dismissed and gaslighted us along the way. Research is woefully underfunded. Still, I’m hanging on the best I can, because I miss life. I miss everyone and everything. I miss the simple joys—hugging those I love, laughing with friends, seeing the world. Within me there is not a shred of giving up, only the light of life. And so I will give it my all until my flame is extinguished. For those still healthy out there I urge you to help #pwLC and #pwME spread awareness of these terrible diseases. Protect yourself and your loved ones. Please donate to research foundations if you can. To the community and the researchers: I know we can do this. Please keep moving forward towards the solution, believe in our resourcefulness as humans and the power of science. Act with urgency and gravity. Don’t let despair and hopelessness win. I will contribute in all the small ways I still can. We can do this. #MillionsMissing #LongCovid #MyalgicEncephalomyelitis

@not_thekase @VPAV8 @not_thekase did they measure your levels of IL-6 (or any other) for the study ? Just wondering what would flag as valid before trying baricitinib.

@CovidSolidarit1 i’m in a drug study for Baricitinib (REVERSE LC- clinical research trial) and it helps with this! it’s been life changing to not have my immune system at its own throat constantly. the study is still open for enrollment i believe!

Why is there zero medication I can take to lower my brain inflammation when it flares?

This should be taken with great caution. I have tried the antibiotics for months out of desperation and they made me worse. There are no reliable tests today that can really detect either covid viral persistence, bartonella or babesia (they will claim iGeneX or Tlabs). While it may help some, it could definitely make you worse as others have pointed out due to gut issues or other immune side effects. The other problem I encountered is I couldn’t find any reliable studies that show antibiotics even treat bartonella, lyme or babesia effectively. It’s all in-vitro stuff and “clinical experience”. Not super reassuring tbh. But I guess do your own research. I’m just saying be to be careful, us severely sick patients already have too much to deal with.

I was just asked what’s been the one most effective treatment I’ve seen for Long Covid, & I’ve seen lots. It’s been antibiotics. The virus persists, causing reactivation of other infections. Some, ie bartonella, are antibiotic responsive. Some need different treatments.

@C19LH_Advocacy Where can we apply to the trial? Or get details? Thank you.

Long COVID Research: A Disappointing Past and a Promising Future To date, much of #LongCOVID research has remained observational, with comparatively limited investment in mechanistic pathobiology and rigorously powered interventional trials. At the same time, the patient community has consistently put forward clear, thoughtful research priorities—yet we continue to see repetition of efforts, limited innovation, and missed opportunities to move the field forward in a meaningful way. In collaboration with the University of California, Irvine, #TechImmune has identified a specific immune dysfunction in Long COVID patients that may contribute to persistent viral reservoirs. They are advancing a novel, first-in-class antiviral immunotherapy designed to correct this defect and enable viral clearance, with clinical trials anticipated to begin this year. This type of mechanistic, targeted, and innovative research—focused on underlying disease drivers rather than symptom management—is exactly what we need to see more of across the field. In recognition of #LongCOVIDAwareness Month and in support of patients, TechImmune has issued the following statement which you can read here along with #C19LAP’s research priorities: bit.ly/LCAMTIS

@amiautoimmunex I’ve tried ketotifen, famotidine, etc. hasn’t really helped unfortunately. Let me know if you find something that works

mast cell activation is hell. genuinely praying I can find something to help.

@VladVexler @mike_malaise This is so true. 😞 we are completely abandoned, forgotten by the world and left to die in the worst suffering reality can conjure up.

#SevereMEDay Severe ME is lying in darkness, wondering how you can be this ill without being dead - while the world forgets you exist. From the outside, it's a body that looks still, a room that's dark and quiet - but underneath, there is a patient dealing with a storm. At the very severe end, patients can't speak, tolerate light, sound, touch, or food - and yet these losses are often not as bad as the physical suffering itself. Up to 25% of the 400K people with ME in the UK have severe ME.  Severe ME patients are the most socially abandoned group I can think of in the Western world.

@_cureme_ Wish I could give any advice. Been looking for any treatment that works for 4 years now. Extremely severe for me.

Can anyone offer advice & retweet to reach someone who can possibly help? I am severe with MECFS. My blood tests this month in A&E show: Very low venous O2 sats of 25.9% High CO2 of 7.2 Low pH of 7.342 I am experiencing hypoxia despite my oximeter readings being btwn 93-98%.

@robert65968 Please don’t say nattokinase or lumbro…

If you are an ME/CFS patient and have not been tested for Amyloids or spike proteins you need a new doctor. Im not a physician but in 2026 I don’t think your doctor should be one either. Total cost $369. Obamacare won’t cover it. Best money you can spend. Gave my life back.

@mike_malaise @makemevisible24 I’m in a similar situation, mother getting older. Not sure how I’ll survive the future. There doesn’t seem to be any government help for us. They robbed us blind with taxes all our life and then let us die like dogs.

I have very severe #MECFS #LongCOVID. My dad is my full-time caretaker and turning 75, and I don’t have other family support. I’m worried about emergencies, especially since I can’t tolerate a hospital or nursing home. I need to figure out how to survive long term. Any ideas?

@bakermind @bhanlon15 That is fair. Very hard to measure when no one really knows yet what is causing these post-infectious diseases.

@PhotonTurtle @bhanlon15 Yes and no. There are subtypes, but also failure of IVIG does not necessarily rule out autoimmune mechanisms.

"Autoantibodies implicated as drivers of long COVID in new study" "What is really striking," say both co-leads of the study, "is that three independent research groups have recently reported similar findings..." medicalxpress.com/news/2026-03-a…

Charlotte, j’ai exactement la même maladie. Je suis aussi très sévèrement atteint depuis plusieurs années maintenant. J’ai fait un petit don anonyme. Je suis désolé que ce ne soit pas grand-chose, mais sache que d’autres, comme moi, souffrent avec toi. Je prie pour nous tous. Reste forte.

Pour une fois je vais publier en Français. Je m’appelle Charlotte, j’ai 25 ans et je suis gravement malade depuis 4 ans. Je souffre d’une forme très sévère d’Encephalomyelite Myalgique (ME/CFS), de POTS et de SAMA. Je suis alitée. Cette maladie au nom barbare constitue aujourd’hui une véritable urgence sanitaire dans notre pays, d’autant plus depuis la crise du Covid-19. C’est une maladie dévastatrice avec de très nombreux symptômes neuro immunologiques. Des jeunes (et moins jeunes) meurent, pas parce qu’ils n’avaient plus envie de vivre, mais parce que leurs conditions de vie étaient terribles et les prises en charge inexistantes ou inadaptées. La recherche et la reconnaissance de ces maladies sont cruellement en retard. Les médecins français ne souhaitent ou ne peuvent m’aider. D’autres praticiens européens me proposent des traitements expérimentaux mais ils sont terriblement chers. Mais puisque l’espoir fait vivre j’ai lancé une nouvelle collecte de fonds dans le but de pouvoir en essayer certains mais également de pour rendre mon quotidien plus « facile ». Je partagerai ensuite les résultats avec les personnes intéressées. Le temps presse pour moi car mes aidants sont à bout et je suis complètement dépendante d’eux. Je cherche à attirer la presse pour qu’ils prennent la parole sur cette maladie, et éventuellement repartage cette cagnotte, comme Brut et d’autres l’ont fait après la mort de Samuel, 22 ans, par euthanasie. Parce qu’il faut aussi parler des cas sévères quand ils sont vivants. gofundme.com/f/aidez-charlo…

So I know of a few people who did plasma apheresis. I myself also have done MSC stem cells (which is even more potent that just the exosomes factors proposed here). Unfortunately none of us gained any substantial improvements. I think at best it provides some temporary relief as others have mentioned here. But who knows, we’ll see I guess, if verified patients can share their long term results. Would be nice for once.

Profound turnaround 4 Robert Benson, who has/had? long Covid & long vax. 3 days after treatment w Dr. Kevin W. McCairn, he says he's a "different person." Today he rose at 5 am & ran 6 miles. And his brain is back too. So far McCairn has treated 14 long Covid/long vax patients. The therapy combines dual filtration plasma apheresis (DFPP) to filter the blood w stem cell–derived growth factors. It's known as the Dracula procedure because blood is filtered via the jugular vein. Several other patients have experienced dramatic relief from brain fog & PEM, some w/in hours of the 1st treatment. Two DFPP sessions cost circa $20,000-$25,000. Plus travel to Japan, where McCairn is based. @KevinMcCairnPhD @HouseLyndseyRN @robert65968 @chrisca70578779 @AliceOutThere @julie_bush #longcovid #Covidvaccine

@polybioRF Everyone already tried lumbro… it’s very easy to get. It doesn’t work. Some of us have been deathly sick for almost 10 years at this point. Why are we even trialing this? I’m sincerely confused.

The PolyBio-supported Lumbrokinase trial for Long COVID, ME/CFS, and Post-Treatment Lyme is now open for remote participation to patients across the US. Email the clinical team to register now at CoreResearch@MountSinai.org.

@rgsoosaa @surf4children It did trigger a severe PEM crash that took weeks to recover from. I hear it has helped others though so it’s probably important to test the presence of those autoantibodies.

@PhotonTurtle @surf4children Did ivig make you worse?

do you still question why - not having better evidences now - I use IVIG and many people get better? This study is indeed in my book since more than a year, supporting my pharmacological choices tinyurl.com/4tsvhwat

@surf4children No unfortunately not 😞. I tried so many things over the last 3 years. It’s hard to keep hope.

@PhotonTurtle they don’t work for all unfortunately. did you find something working?

Excited to get this out in preprint: triple-blind, placebo-controlled microtesla magnetic therapy (MMT) is safe, feasible and effective in reducing cognitive impairment in people with #LongCOVID. I get excited about interventions for cognitive symptoms medrxiv.org/content/10.648… 1/

@iatrogenicse Who are these people saying this nonsense?

Apparently you can “train yourself” out of ME/CFS by working on you’re nervous system according to some people.

Yes I took it. Honestly I’m not sure how accurate it is given how tiny the company is (and seems to be part of Patterson’s group financially). The “Long Hauler Index” they claim here also doesn’t seem to have any solid basis other than it was produced by some machine learning but the data could have be fitted to bias (any data intern can create an “index” like that with no real correlation). Maybe I’m wrong but it seems very flimsy and also not peer reviewed at all.

Has anyone else paid the $1,000 out-of-pocket for the Radiance Diagnostics' COVID Long Hauler Panels and then have no idea what to do with this information LOL

@Bert_with_ME @bhanlon15 @JacobTref Please see my story as well (in profile). I’m severely disabled and suffering immensely due to ME.

Hi @JacobTref I'm joining the chorus of voices urging you to look into ME/CFS as part of your focus at OpenAI Foundation. The story of this illness is utterly fascinating. Cases began cropping up in the early 80s around the same time as HIV/AIDS. Patients who were previously healthy and productive became profoundly sick with immune-mediated and neurological symptoms, rendering them disabled and unable to care for themselves or their families. Their illnesses dragged on for years and decades, and the vast majority never recovered. Because 3/4 of the patients were women and their routine bloodwork returned mostly normal, certain doctors and govt officials began psychologizing the disease, casting the patients off as neurotics, depressives, and malingerers. And yet, more and more people acquired this devastating mystery illness as the years went on. By 1990, the only illness that generated more calls to the CDC was AIDS. 40+ years later, ME/CFS is recognized by medical authorities as an organic neuroimmune disease that affects ~2M Americans, and yet the layperson is not aware of its existence and NIH funding remains comically low at ~$13M (i.e., $6.50 per patient...). There are zero FDA-approved treatments, no cures, and very little hope in this community. An ME/CFS diagnosis, as I received 8 months ago, is essentially a lifetime sentence of profound illness and disability for the vast majority of patients. With the resources of the OpenAI Foundation, you have an opportunity to bring progress and hope to a cohort of sick people that have been all but ignored and forgotten by government institutions like the NIH. I hope you'll consider digging in.

@PutrinoLab @bhanlon15 Thanks for the clarification! How do I access this treatment? I need help desperately.

@PhotonTurtle @bhanlon15 No. Very different. It is a continuous magnetic field rather than pulsed like TMS and it is about 1/100000th the strength of the magnet used in TMS. TMS is about stimulating neurons, MMT triggers reductions in neuroinflammation without stimulating neurons