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I felt it clearly, the damn virus never left my body. 2+ years later - why is #viralpersistence still not properly investigated in #LongCovid ?! UNFATHOMABLE.
Like @danaparish said: “Latency is the elephant in the room”. The sooner they accept that anyone can have the virus persisting in the body, as several of the studies show, the more pressure we'll have for trials and the faster we'll have effective treatments.(2/2)
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
2/ PolyBio is actively supporting this project using 7-Tesla fMRI in patients with infection-associated chronic disease (e.g. LongCovid and ME/CFS) to determine evidence of structural abnormalities in the dorsal brainstem and craniocervical junction; as well as cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure changes, and dysregulation of vagus nerve signaling.
polybio.org/projects/case-st…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Hi everyone, we’ve been working on something 🙏🏼 I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others.
I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!)
The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans 🤯). Also some huge names from football and many other sports!!
Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️
I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen 🙏🏼 @andyburnham @number10gov @UKLabour @DHSCgovuk
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Stanford researchers studied 27 autoimmune patients and found CD19 CAR T-cell therapy cleared EBV-infected, autoreactive B cells that resisted rituximab.
8 of 12 CAR T-cell patients achieved sustained drug-free remission.
biorxiv.org/content/10.64898…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Finally, a Molecular Signature That Tells ME/CFS Apart From “Just Being Tired”
danilobuonsenso.substack.com…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
I'm feeling this Patrick Stewart quote today. I was born with genes that cause APS1, celiac, hemochromatosis, and CVID. The best made plans still fail when your body works against you.
My brother, who is an engineer, thinks if he plans properly, he will be fine. He blames my need for assistance on lack of planning and effort. Called me entitled. But I planned and saved, same as him, until my arm injury, autoimmunity, tick bites, and COVID infections one by one derailed my plans and exhausted my savings. Maybe his plans will work out and he will be fine, but perhaps they will not. There is no reason to expect a certain positive outcome- that's a truly entitled mindset. Life does not owe you anything due to your planning. It is vicious and random in who it rewards and ravages.
It was merely genetic chance that gave my brother and I dramatically different stories.
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Professional cyclist Esmée Peperkamp, 29, says she can barely walk after developing severe Long COVID.
She also alleges years of inadequate medical care, hormonal dysfunction, and RED-S.
Her former team faces an investigation.
idlprocycling.com/cycling/es…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
We're headed into a new phase with Soren - one that we have deferred until he was closer to full grown. The mix of neuro-inflammation, viral/immune insults to his connective tissue and his genetics have exacerbated his craniocervical instability (CCI). 🧵1/2 #longcovid #mecfs
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
The brain fog lived experience.
When someone with Long COVID says “I can read a page, but I can’t retain it,” I don't think “fatigue” captures it.
A 2026 study (24,095 people; 548 with ongoing Long COVID symptoms) found deficits in sustained attention.
Researchers found links between Long COVID symptoms and attention/memory difficulties beyond fatigue alone. Fatigue building during tasks mattered too.
In clinic, we need to ask about cognition—not just tiredness.
What does brain fog feel like for you?u?
PS. Observational modelling cannot prove a mechanism.
doi.org/10.1093/braincomms/f…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Short 🧵
Swedish research does not seem to have high standards for scientific integrity, given that Jonas F. Ludvigsson is receiving an award for precisely this. ->
forskasverige.se/jonas-f-lud…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Jools Oliver, 51, revealed she was diagnosed with ADHD and autism in her 40s after her children received similar diagnoses.
She describes decades of exhaustion and misunderstanding.
She also lived with Long COVID for two years.
standard.co.uk/showbiz/jamie…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
If you don’t have hypermobile ehlers-danlos syndrome, is having your hair washed in the sink at the hair salon relaxing? Because for me it’s so painful and I feel like I’m trying to hold my neck up. They’re always like “relax” and I’m like I can’t… lol
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Peer-reviewed now.
Human T cells did show up, did recognise the virus, and still didn't clear it. By week 8 the CD4 cells had dropped their naive identity and gone cytotoxic - TEMRA - with IFN/JAK-STAT only switching on late, nothing like it acutely. Mice without T cells mounted the stronger innate antiviral response. Neither group cleared the virus.
A failure to resolve.
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
People in the Long Covid and MECFS Community are now dying with regularity.
Pretty soon, Twitter will be full of the Ghost Accounts of those no longer with us.
It's an incredibly scary time to be in our community right now and we should all be taking care of each other.
#LongCovid 6,5 years later:
Feels like I am dying of the human version of Feline Infectious Peritonitis.
😭🤰🏻🔪⚡️🪦
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
University of Oviedo researchers studied 41 people and found that those with Long COVID recalled significantly less verbal information after 9 months, despite similar initial performance.
Memory retrieval was also slower.
sciencedirect.com/science/ar…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Gavin & I followed each other. I'm so sad to hear this. 😢
Goodbye Gavin 🖤 @Gavtaraysin
Another life claimed by a disease minimized, conflated, and ignored by governments and conventional medicine. We need tests and treatments now! #LongCovidKills
All degenerative disease is simply your failing immune system’s attempt at fighting chronic pathogens.
End of story.
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
Months to years after infection, 40% of long COVID samples show spike-specific T cells still switched on - as if the antigen were still there.
In recovered people they've mostly powered down.
After a vaccine dose, they're back to baseline in 90 days. Preprint🧵
University of Pennsylvania researchers studied over 300 people and found 40% of Long COVID samples had elevated SARS-CoV-2-specific CD8 T cell activation, with signs of exhaustion and reduced function.
This supports persistent viral antigen stimulation.
biorxiv.org/content/10.64898…
Nwiss 🇸🇪🇪🇸🇺🇸🇬🇧🇪🇺 retweeted
University of Pennsylvania researchers studied over 300 people and found 40% of Long COVID samples had elevated SARS-CoV-2-specific CD8 T cell activation, with signs of exhaustion and reduced function.
This supports persistent viral antigen stimulation.
biorxiv.org/content/10.64898…
”This case demonstrates that immune stimulation via RZV may transiently reverse immune dysfunction and improve clinical symptoms in ME/CFS. These findings support a role for reversible immune exhaustion in disease pathogenesis…” #Shingrix
sciencedirect.com/science/ar…