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Join @Dave_it_up and I for a conversation with @dbdugger about viral persistence in long Covid.
We will discuss what parallels we can draw from HIV/AIDS and why ME/CFS conflation has been catastrophic to proper research into long COVID.
This is a follow up to this space recorded in July 26 linked below.
Come and bring your questions!
Set a reminder for my upcoming Space!
xitter.cf/i/spaces/1rGmqpy…
We know that long Covid causes a dysregulated and dysfunctional immune system response.
All the current anxiety meds target neurons in the brain.
University of Utah researchers published this paper that found that a group of immune cells in the brain helps regulate anxiety-like behaviors in mice. Now, a high level of calcium in these immune cells has been linked to anxiety in healthy mice and in models of chronic anxiety.
What if the wrong cells are being targeted? What if the immune system is driving your anxiety?
Quote: The researchers say that beyond their clinical impact, this work represents a turning point in how the brain is understood. Consistent with prior results, their work underscores that behaviors emerge not solely from neurons but from interactions between neural and immune systems. The researchers add that their findings bridge disciplines, uniting neuroscience, immunology, and psychiatry into a more integrated view of the human mind.
uofuhealth.utah.edu/newsroom…
This explains much of what passes for exuberant CON-findence in long Covid land. We are overrun by $$$ "treatments" that are not grounded in science or ethics preying on sick and desperate patients.
This paper answers why confident idiots run the world.
Cornell University published a psychological paper that explains every terrible boss, every loud influencer, and every broken corporate hierarchy.
It’s called “Unskilled and Unaware of It.”
they tested participants across logic, grammar, and humor to measure the gap between actual performance and self-perception.
And the results are wild.
participants scoring in the bottom 12th percentile consistently believed they were operating in the 62nd percentile.
they were not lying. they were literally incapable of recognizing their own incompetence.
the paper revealed a brutal paradox:
the exact skills required to master a domain are the exact same skills required to accurately evaluate your own competence in that domain.
if you lack the skill, you inherently lack the cognitive capacity to realize you are failing.
this creates a dangerous systemic loop.
the incompetent are blessed with absolute, blinding certainty. their brain protects them from their own ignorance, allowing them to speak first, demand authority, and never second-guess their decisions.
meanwhile, the actual experts suffer the exact inverse.
top performers in the study consistently underestimated their rank. because a task was easy for them, they falsely assumed it was easy for everyone else.
they hesitate. they obsess over nuance. they assume they have nothing unique to add.
we are biologically wired to confuse confidence with competence.
the loudest person in the room gets promoted, gets funded, and gets the microphone, not because they know what they are doing, but because they are physically incapable of seeing what they don't.
the only defense mechanism is building systems that stop rewarding absolute certainty and start demanding proof of work.
Is this a larger pattern for ME/CFS?
🤔
#EDS Patientin Aston starb, weil ihr vorgeworfen wurde zu simulieren!
EDS Diagnose hätte ihr Leben retten können!
Wie viele EDS Patienten sterben, weil sie fälschlicherweise im #MEcfs Pool landen, für das es null Therapien gibt?
focus.de/panorama/welt/fehld…
.@roaringwisdom there’s also the studies that show loss of IQ points per infection.
cidrap.umn.edu/covid-19/even…
calbeargirl.bsky.social retweeted
Join @Dave_it_up and I for a conversation with @dbdugger about viral persistence in long Covid.
We will discuss what parallels we can draw from HIV/AIDS and why ME/CFS conflation has been catastrophic to proper research into long COVID.
This is a follow up to this space recorded in July 26 linked below.
Come and bring your questions!
Set a reminder for my upcoming Space!
xitter.cf/i/spaces/1rGmqpy…
Spotted this gravestone photo.
This is what peer support is all about in long Covid land.
One person helped at a time.
Sometimes you are the helper.
Sometimes you need the help.
One at a time.
Block out the noise. Focus on the one.
calbeargirl.bsky.social retweeted
For those who got the symptom cluster from SARS-COV-2, they know a lot more. monocytes come in two flavors, m1 (attack) and m2 (repair).
In Long COVID the m2 monocytes have cd8 expressed on the surface. M2 cells shouldn’t have cd8 on the surface. Cd8 is the warning marker telling the immune system to attack.
So the immune system gets stuck on in Long COVID, and causes T cell exhaustion. In classic MECFS, it’s the opposite, the immune system gets suppressed through a different route.
Anyway, hope I explained it well enough. I know I’m missing part of the process, but since Long COVID had a clear cause, and it’s the most studied virus, they know a lot more about it than classic MECFS. If they would focus more on what to do about it, they could come up with treatments.
In Long COVID, find out why the immune system is stuck on, and why in classic MECFS it’s stuck in a suppressed state.
Researchers keep finding the same results in different studies. It drives me nuts that once they find particular results, they take that information and do another study, instead of trying to make some drugs to address it.
calbeargirl.bsky.social retweeted
I cannot imagine how debilitating Long COVID or a suspected vaccine injury must be to compel someone to spend a fortune traveling to Japan for an invasive, experimental blood-filtration treatment.
I don’t blame desperate patients. I question those promoting such expensive, scientifically unproven interventions…including Kevin McCairn, whose public rhetoric I consider deeply bigoted.
Yesterday, an Edogawa patient advocate announced the sudden death of Tony Parmalee, identified as patient #37, after reportedly improving during treatment in Japan.
My condolences to his family. His death cannot be attributed to the treatment based on this announcement, but it underscores why independent safety monitoring and long-term follow-up matter.
Where are the controlled clinical outcomes? The independently verified benefits? The transparent adverse-event data?
Desperately ill people deserve evidence, not testimonials masquerading as proof.
Hope is not a cure.
FYI…Two randomized, sham-controlled trials of related apheresis approaches for Long COVID have failed to demonstrate meaningful clinical benefits:
A 2025 trial of 50 patients found no efficacy advantage for therapeutic plasma exchange.
nature.com/articles/s41467-0…
A 2026 trial of 40 patients found no symptom benefit from immunoadsorption and reported more adverse events during or after active treatment, including jugular-vein thromboses.
pmc.ncbi.nlm.nih.gov/article…
Oof. These Edogawa guys are doing themselves no favors.
My eyebrows physically lifted in surprise.....
forum.sickandabandoned.com/t…
calbeargirl.bsky.social retweeted
If you live with #LongCovid and spend your time policing anything other than the issues around the utter annihilation of any focus or acknowledgement about the fully body damage of airborne SARS-CoV-2 in 2026, you’ve completely lost the plot.
Seriously, get yourself in check.
Indeed…this is apparently what standing on the shoulder of giants gets you.
Don’t miss the replies under this. It’s astounding.
calbeargirl.bsky.social retweeted
It will probably end up being 'the cat people' bullshit again. The same playbook over and over to cancel a set of patients who are not conforming because they are fighting for their very existence and for their condition to be properly recognized, researched and treated.
calbeargirl.bsky.social retweeted
I'll be discussing this 15 page document containing journal articles that specifically name the proteins below.
It kicked our asses. HEE HAW, HEE HAW.
sandscan.me/ProteinsOperatin…
Join @Dave_it_up and I for a conversation with @dbdugger about viral persistence in long Covid.
We will discuss what parallels we can draw from HIV/AIDS and why ME/CFS conflation has been catastrophic to proper research into long COVID.
This is a follow up to this space recorded in July 26 linked below.
Come and bring your questions!
Set a reminder for my upcoming Space!
xitter.cf/i/spaces/1rGmqpy…
calbeargirl.bsky.social retweeted
As a person who has been chronically ill since Dec 07 & having been given the diagnosis of me/cfs via ruling out everything else, Beth needs to know, it's Long Covid.
It's way past time Long Covid was properly acknowledged.
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
