Watching with horror as we guard FDA approved meds with an iron fist while patients decline and die of persistent infection.
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Everything I’ve learned and used to recover has come from the internet - 100%
My healthcare has not come from doctors, unfortunately, but from other patients & the researchers eagerly sharing their findings.
It seems so clear that we’ve got some exciting biomarkers coming up. These could really change so much. Trial rollouts still feel too slow.
I surely understand the intense bitterness, but I think it would be better directed against those spending our tax dollars on war and vanity projects rather than those working on our behalf.
This feels like a very tense moment online for many people who are part of the clinical, scientific and patient communities in #LongCOVID, #MECFS and other related complex chronic illnesses. People are angry and with very good reason: we have a number of complex chronic
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mswalker retweeted
The reason Long Covid doesn’t have funding is that governments don’t give a shit about disease.
That’s it. No group to blame, no conspiracy. They just don’t care and never have.
As an entire world, we spend 0.1% of GDP a year on disease research. That’s EVERY disease, combined.
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“Autoimmune” and also untold other chronic illness.
The writing is on the wall for those of us following along.
We just need more investment. The U.S. is burning money on all the stupidest shit, let’s fund research instead 🙏
I don’t know when, but eventually, the common consensus in medicine will be that autoimmune diseases are merely an extension of viral infection, regardless of the agent at play. The faster we get there, the faster we’ll get to effective treatments.
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Checking with @atranscendedman - it’s pretty easy to “just ask for IVIG,” eh??
Can damaged small nerve fibres actually regenerate in post-Covid 19 vaccination syndrome?
➡️ A striking case report describes a woman with small-fibre neuropathy (SFN) following #BNT162b2 vaccination whose symptoms improved after 8 cycles of #IVIG, accompanied by a remarkable rise in intraepidermal nerve fibre density (IENFD)—from 6→9 fibres/mm at the ankle and 6→8 at the thigh. 1/
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I’m so eager for the @Invivyd trial results. We need more options for protection against Covid beyond the current vaccines (that can cause harm to some, like me).
I didn’t even see this survey in time to vote, but my 5th covid booster began my illness.
Vaccine injuries continue to plague the at-risk population. Monoclonal Antibodies are a desperately needed alternative 🙏
If a vax started or worsened your #MEcfs #POTS #LongCovid, was it temporary (return to pre-vax level) or permanent?
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Anellovirus as a proxy for immune health.
This week, we read @polybioRF providing additional evidence pointing to EBV & CMV reactivation post-covid.
It was unclear (to me) the full range of viruses that were under consideration. I wonder if we’ll be hearing more about Anellovirus amplification?
med.stanford.edu/medicalgivi…
University of Texas at Austin researchers studied over 1,000 people hospitalized with COVID.
Nearly half had dormant viruses reactivate.
Anellovirus reactivation was linked to long COVID, inflammation and cell damage, but causation is unproven.
nature.com/articles/d41586-0…
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Texas A&M researchers found that sodium butyrate, a short-chain fatty acid produced by gut bacteria, helped reduce post-traumatic seizures and promoted brain repair after traumatic brain injury in preclinical research.
More research highlighting the therapeutic potential of the gut-brain axis.
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mswalker retweeted
Last year some regrettable cost cutting decisions were made about foodborne pathogen testing, ending 28 years of screening for cyclosporiasis and quickly catching and quenching several outbreaks. Now we still have no idea what the source of this outbreak is. This is the price!!!
CDC cuts back foodborne illness surveillance program
The CDC's FoodNet program has reduced required surveillance from eight foodborne pathogens to two, a move some experts warn could leave the country more vulnerable to outbreaks.
cidrap.umn.edu/foodborne-dis…
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These viruses, man… they sure do persist 😢
Baby gets measles at 5 months, she “recovers,” and yet the virus lingers in silence until age 10, when it re-emerges & quickly destroys her brain.
abc.net.au/news/2026-06-07/m…
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Doctors on Reddit routinely express their surprise & dismay as their patients continue to complain incessantly about “fatigue.”
“Why is everyone so tired??”
Top comment:
“Nothing you can do about it… life is shit & then you die…”
=> get a sleep study… it’s phones… THC… diet & exercise….
…tests look fine! hey- fatigue never killed anyone! 🙄😵💫🤬
So far, there has been ONE voice of reason.
The doctors are not ok… they’re not being educated & they are 100% confused by what they are witnessing.
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Worth noting @rickygervais also thinks it’s funny to joke about MECFS 😡😡😡
Funny how I don’t remember any jokes about 9/11 first responders, @jonstewart. Just years of consistent, heartfelt education and advocacy. And yet you’ve chosen to punch down on a group of vulnerable people with miserable quality of lives who really need your help. Sad and gross.
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Another Long Hauler with neuro symptoms sharing improvement on Baricitinib.
I’ve noticed others on Reddit (also with prominent neuro symptoms) reporting significant improvement.
Will be exciting to see how the trials go. Hopefully they’ve been able to capture this specific patient group who seem to benefit.
Baricitinib is giving my life back it is the best I have been in 4 years of severe neuro shit. ❤️😪
I would be in constant brain pain and cognitive impairment and physical reduction.
Had to stop university at 21 yo.
I guarantee you guys I was severely disabled and in pain.
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This Redditor shared, “I am 70% improved. I was bedbound from mid Aug-mid October. 4+ yrs and worsening.”
teddit.net/r/covidlonghauler…
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This Redditor reports, “Help to get rid of 95% of my dementia level brain fog after about a week.”
teddit.net/r/covidlonghauler…
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Thanks yet again to Dr. Iwasaki for her courageous adherence to objectivity and inquiry.
Worth noting that we have NO IDEA how prevalent these vaccine injuries are because we refuse to capture this data in patient charts or elsewhere.
Furthermore- the fact that vaccine spike can trigger an illness cascade that is strikingly similar to that which is triggered by the virus itself is an IMPORTANT PIECE OF DATA.
Moreso - some Long Haulers, whose illness clearly began with the VIRUS, find that they can no longer tolerate additional vaccines.
These are all valuable clues!!! Let’s keep following the science like @VirusesImmunity ❤️
I wrote this piece to promote thoughtful, respectful, and rational engagement with controversial science topics. I hope it fosters constructive dialogue in the scientific community—thank you for reading and sharing 🙏🏼 @NatRevImmunol
nature.com/articles/s41577-0…
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