Health & Medical Science (views my own) News and Research on #LongCovid #FBLC #MEspine #EDS Longhauler since March 2020, (3x Covid inf) #MECFS since 2011

Stockholm, Sweden
Joined January 2009
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: β€œLatency 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)
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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…
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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 β€œrelax” and I’m like I can’t… lol
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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.
Researchers built a mouse with a human immune system to finally watch how human defenses fight COVID. They expected the virus to get wiped out. Instead, the human immune cells helped it spread from the lungs into other organs and muffled the body's own early alarm system🧡
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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.
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#LongCovid 6,5 years later: Feels like I am dying of the human version of Feline Infectious Peritonitis. 😭🀰🏻πŸ”ͺ⚑️πŸͺ¦
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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…
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Gavin & I followed each other. I'm so sad to hear this. 😒 Goodbye Gavin πŸ–€ @Gavtaraysin Another life claimed by a disease minimized, conflated, and ignored by governments and conventional medicine. We need tests and treatments now! #LongCovidKills
It seems my worst fears have come true 😰 I guess it was Gavin's dad on his Telegram. He just msged me back & told me Gavin sadly passed away on Sept. 18 πŸ˜­πŸ˜­πŸ’”πŸ’” Idk what to say. I'm completely devastated & broken. He was such an amazing person & friend...
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All degenerative disease is simply your failing immune system’s attempt at fighting chronic pathogens. End of story.
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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…
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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…
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”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…
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Cerebral hypoperfusion is prevalent in ppl with Long Covid (vs controls). It can be tested for with a transcranial doppler. You would expect any Long Covid therapeutic to resolve / improve this indicator. Why then isn't it ever being used as a success metric in treatment trials?
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This acute COVID infection will not stop. Symptoms are primarily in brain and guts. I have 1 box of paxlovid and 3 Xocova/ensitrelvir tablets left. Pemgarda didn't work. I've been taking Thymosin Alpha 1 every 3 days. I've continued on Maraviroc, Stribild, and Tollovid. Weekly immuneglobulin dose is being increased slightly. I'm pretty sure I will rebound again if I stop protease inhibitor antiviral treatment. I only took one dose of paxlovid yesterday and already the wild dreams, head pressure, UTI-like urgency, and diarrhea have started. Because this infection started in August while I was taking rifampin, all antivir levels were reduced for weeks due to rifampin's effect on liver enzymes. I'm very concerned this created antiviral resistance. Does anyone have any other ideas for treating acute COVID? I'll take supplements, herbs, prescriptions. Mentally I was not ok when this infection was untreated. I did some things I would normally not do, was angry/grumpy all the time, and had terrible insomnia. My cortisol was also very high. Letting this infection rebound comes with the risk of all those symptoms returning.
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CDC sent me the 2025 NHIS data this week, and one number stuck with me. 8.7 million American adults were living with Long COVID in 2025. That's 1 in 30 of us. It's easy to stop seeing a crisis once it stops being new. It's still happening. cdc.gov/nchs/nhis/documentat…
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We've sadly experienced medical gaslighting with my daughter's care over and over again during the past 13 years. All I can say is it's heartbreaking and brutal. I've cried more tears late at night thinking about how she was dismissed than I care to remember. And surprisingly, even in my current leadership role at CODA with my scientific expertise, I still face doctors looking at me sideways as I explain her multisystem illness. I've learned to handle far their response far better than early on but their approach still hurts, still angers and still deflates. We shouldn't have to work this hard, when she's working so hard already. "New Daily Persistent Headache, Migraine, hEDS, gut dysfunction, pelvic pain, orthostatic intolerance, MCAS." She says those words and we watch them start to type, ask her about trauma and stress, which are part of the equation, but also isn't her history of gut dysmotility since age 6 even more so? The concussion she suffered. The propensity to faint when she didn't even know why. Her severe menses. Her illnesses that had her in bed far longer than her siblings. Put all of that in one young woman who got sick seemingly out of nowhere at age 16, and suddenly the story sounds like its too much. Too many symptoms. Too many systems. Too many diagnoses. And, I have access to tools and relationships others may not - it literally breaks my heart to think of the thousands and thousands of patients, so sick, looking for help and being turned away. We cannot continue to rely on a handful of expert doctors who understand how to recognize and treat chronic multisystem illness. Millions of patients bring different biology, histories, triggers and combinations of symptoms. Individual clinical expertise alone will never meet that scale or complexity. People diagnosed with cancer, diabetes, stroke, heart attack, appendicitis, and other recognized illnesses aren't disbelieved. They are treated. Patients with chronic multisystem illness deserve that same scientific credibility and access to quality care. Because when medicine can measure what has gone wrong, understand it and treat it, it becomes much harder to turn away from the person sitting in front of you. It’s time. apa.org/monitor/2026/10/harm…
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#LongCOVID fatigue may have a measurable brain-blood-flow signature. ➑️ A new MRI study from Karolinska Institutet compared 22 people with Long COVID with persistent fatigue with 19 healthy controls. ➑️ They found lower cerebral blood flow, particularly in regions involved in attention, sensory processing and cognitive control; lower perfusion was also associated with slower reaction times. 1/
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This take is mostly a cope for healthy people. They think they won’t get ill, and if they do, they’ll deal with it. They’re not those β€˜hysteria’ people, they’re strong-minded. Little do they know, if they got genuinely ill they’d lose everything and could do nothing about it.
Is it politically incorrect to say that 90% of the time long Covid is pure hysteria
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At 6-12 months after SARS2 infection, viral antigen showed up in the blood of 31% of people with long COVID. In people who'd fully recovered 20.8%. In people never infected 5.4%. It tracks having been infected. Not being ill.🧡
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read this sentence and, if you follow me, you recognize that this is exactly what i’ve been saying since years about long covid: These findings nonetheless suggest that EBV reactivation, when occurring within a genetically predisposed peripheral immune environment, is a proximal precursor of MS relapse
We didn't know the mechanism for why relapse occurs in multiple sclerosis. @NatureMedicine today: Reactivation of the Epstein-Barr virus and priming of the immune response nature.com/articles/s41591-0…
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