hey ppl I made an Ontario Transfem telegram group if anyone's transfeminine and local to Ontario and wants to join, PM me for the link :3
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WBUR: 'The scope of long COVID is bigger than we think, Mass. researchers say'
“I think Long Covid is a serious national and global problem that demands attention from governments and international bodies" - Dr. Ziyad Al-Aly
https://t.co/qzQrTDDsB8
I received my day 21 RNA seq back yesterday and ran it through my pipeline. I'm not going to deep dive it too much until the end, but I'll just share a few interesting things.
My protocol started with sofosbuvir, daclatasvir, biktarvy, plus high dose thymosin alpha 1. Sof/Dac is a Hep C medication that can in theory target the RdRp of sars-cov-2. Biktarvy was chosen because it can suppress LINE1 which might help with HERV/RE elevation, which I've noticed in my blood. And TA1 was chosen because it helps increase thymic output, which should help T cells differentiate.
I spent a lot of time thinking about this protocol. I think the problem with antivirals alone in long covid would be you are removing the antigen on top of an already broken immune system. And using TA1 on its own might help T cells improve, but if the antigen burden is too high, it would be like spraying water on a large fire, largely ineffective. So my reasoning was that both would be needed - augment the immune system at the same time you're dropping viral load. Let the immune system then finish the job the antivirals have started.
The transcriptions themselves between day 0 and day 21 haven't changed in super meaningful ways, certainly not enough to say it was obvious what was going on with the antivirals. But I actually didn't think I would see much effect in these first few weeks, I just wanted to set a baseline before I added the other antivirals.
What did happen though is I saw massive T cell expansion and improved class switching. Here are some rough metrics - total clones increased 2.17 times, the diversity metrics have improved (I have a much broader response pool now), both TCR and BCR diversity has improved. Basically I had a very contracted clonal pool on day 0 that has started to resolve by day 21.
CVS does not keep Qulipta in stock and does not let me put this medication on auto-refill (I suppose they don't keep hard-to-prescribe $1,200 medications on hand)?
I was not aware of this, and was not aware that I would have to wait 5 days for my refill. For the first couple of days without my CGRP inhibitor, my ADHD seemed more overwhelming, having noteworthy issues with task paralysis, not wanting to engage in anything requiring sustained focus.
Then today, day 5, I started feeling depersonalized again (I haven't done a mast cell involvement in PTSD post yet 😉) and cerebral vascular/migraine pain again. Vision is not as clear. My mood has tanked.
These next generation migraine medications really have done it all for me. They are such strong neurogenic anti inflammatory drugs and we are sleeping on their full potential. We are sleeping on the role of mast cells in neurology, psychiatry, and rheumatology.
When CGRP inhibitors eventually go generic, I suspect they will be off-labeled for so many conditions. (A Google search already excites me)
As a clinical health psychologist who has written >20 papers on COVID, I would emphasize 4 facts:
1) Long COVID is not a psychological diagnosis nor manifestation of a psychological condition
2) Billions of dollars need to be invested in biomedical treatments and preventives, and that money is not being invested because of wealthy short-term interests, which prop up various narratives, including in the media
3) Behavioral interventions can help with infection/reinfection prevention (e.g., COVI-CAN pilot) and stress/coping support (gaslighting/ostracism as huge issues), but these are not cures, and the same interventions are relevant to people with cancer, organ failure, immunocompromising conditions, etc.
4) Many psychological/behavioral "treatments" for Long COVID are directly harmful to patients and are indirectly harmful to society by incorrectly framing the issues
I would consider these issues obvious in summer 2020.
Articles like this should not be written in 2026, but it is a consequences of cultural evolution, or organizational selection by consequences. The organizations that write puff pieces propping up pseudoscience get the gold, while truth tellers do not. It would be useful to examine the organizational practices at WIRED that led to the incentive systems that allowed this piece to manifest.
@WIRED brain retaining is in no way a solution to a multi system viral problem, viewable in micro clot scans, bone marrow, and endothelial cells
this is just simply not how this works
I went on a date with a guy who brought a literal legal notepad and spent the entire evening writing things down while I talked. I thought I was interviewing for a cult.
We met at a coffee shop. Within five minutes, he pulled a yellow legal pad and a pen out of his bag. Every time I answered a basic question, he would scribble furiously, nod to himself, and say, "Interesting."
It felt like a cross between a job interview and a psychological evaluation. "Where did you grow up? Scribble. Do you have siblings? Scribble. What's your favorite childhood memory? Scribble."
I finally had enough. I stood up and said, "Look, I don't know what kind of weird game you're playing, but I'm not a specimen to be studied." I grabbed my bag to leave.
He looked mortified. He immediately closed the notepad and held his hands up. "I am so, so sorry. Please don't go. Let me explain, I'm just incredibly stupid."
He opened the notebook and turned it toward me. It wasn't notes about me at all.
It was a list of phonetic spellings, social cues, and reminders. Things like: “Remember to make eye contact for 3 seconds.” “Do not talk about your geology hobby for more than 2 minutes.” “Ask her about her day.”
He explained that he has severe social anxiety and high-functioning autism. He was so terrified of ruining the date and forgetting how to act like a normal human being that his therapist suggested writing down a "cheat sheet" to keep him grounded.
The "scribbling" was him literally crossing off topics we had covered so he wouldn't repeat himself. It was the most vulnerably chaotic thing I've ever seen. I sat back down, and we ended up talking for four hours. No notebook required.