Could you check?

Do you know which contrast agent they gave you? I was given Visipaque. Wonder if it’s more likely to cause insomnia than Omnipaque.

I don’t think they tell anyone, for what it’s worth. The only acknowledged effects are a warm flushing sensation and allergic reactions. Anything else you’ll be met with gaslighting

It has absolutely ruined my life. I barely sleep.

Not that I know of. A lot of people I talk to have been struggling with it for years and sometimes decades. But it’s not acknowledged by doctors and there’s no research.

How did the shortness of breath feel? Was it because of the contrast? For me it felt like I couldn’t breathe in all the way for some reason.

I wasn’t told beforehand but I know now. And a lot of people I talk to now who have contrast-induced insomnia had CTAs, so I think it could be a risk factor.

I also couldn’t breathe for like 10 seconds

Same. My heart started beating very quickly and forcefully when the contrast was injected. Felt like my blood pressure shot up. I guess it’s because they inject it so quickly.

It was a CTA with Visipaque

Associations of epigenetic aging and COVID- 19: A 3-year longitudinal study - GeroScience Aging and COVID- 19 are known to influence DNA methylation, potentially affecting the rate of aging and the risk of disease. The physiological functions of 54 volunteers—including maximal oxygen uptak...

“We found that having COVID-19 during the 3-year study period significantly increased the progress of aging,” particularly among females.

Associations of epigenetic aging and COVID-19: A 3-year longitudinal study

link.springer.com/article/10.1...

*losing

A tiny cute gray bird sitting on a tree says: Like ME/CFS, Long Covid is a serious problem. It disabled millions and…(interrupted by an annoying crow) - CLOT SHOT VAX! CLOT SHOT VAX! SHOULDN’T HAVE GOTTEN A MRNA VACCINE HAHAHHA (back to the cute gray bird, he is annoyed). Be better Mr. crown. Long covid existed before covid vaccines.

Trying to talk about #LongCovid on Twitter for 5 minutes. It is also crazy to think that a chronic disabling condition became such a political issue. #LongCovidAwarenessDay

Regeneron is recruiting for a phase 2 RCT of REGN7544 (an NPR1 antagonist mAb) for POTS. They’re seeking 81 patients in Pasadena, CA; Carlsbad, CA; Nashville, TN; and Clearwater, FL clinicaltrials.gov/study/NCT065...

Long COVID impacting more than 1 million children: CDC study suggests A new CDC study published Monday found that more than 1 million children were affected by long COVID in 2023. Higher levels were found in lower-income households.

ABC News: 'Long COVID impacting more than 1 million children: CDC study suggests'

'Another theory is that virus particles may be persistently active, causing people to suffer long-term symptoms.'

abcnews.go.com/Health/long-...

We never made classrooms COVID safe.

Schools were hotbeds of COVID transmission. Kids died. Teachers and other school staff died. Family members living with kids died.

Many who didn’t die—including kids—got long COVID.

THAT is what we didn’t reckon with. All we ever hear about is harms of closure

Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.

A Long COVID test for kids may be possible with the discovery of a unique blood “fingerprint” Scientists have found patterns of inflammation similar to those in adults with the condition.

“A study…found that Long COVID in children shares similar inflammatory patterns to those found in adults.”

Not sure why this is surprising. Children aren’t a different species or something. It was always wishful thinking—or worse—to assume COVID doesn’t harm kids.

www.gavi.org/vaccineswork...

578. Metformin reduces the risk of Long COVID or Death over 6 months in an Emulated Target Trial of Primarily Omicron-infected Adults without Diabetes or Prediabetes: a New-User, Active-Comparator Ana... AbstractBackground. Metformin has decreased SARS-CoV-2 RNA in 4 cell lines. In a RCT of > 1,000 majority vaccinated outpatients, COVID-19 related ED vis

“Metformin reduces the risk of Long COVID or Death over 6 months in an Emulated Target Trial of Primarily Omicron-infected Adults without Diabetes or Prediabetes: a New-User, Active-Comparator Analysis Using the National COVID Cohort Collaborative (N3C) Electronic Health Record Database.”

NEW: In response to orders by the Trump admin, the CDC has taken down the Household Pulse Survey, one of the biggest and most important sources of Long COVID data in the world.

The US government is literally erasing the existence of Long COVID.

Donate to Birthday fundraiser Long COVID research, organized by Celine K Birthdays with severe Long COVID feel less like a celebration of a year well-lived a… Celine K needs your support for Birthday fundraiser Long COVID research

@healingfromlc.bsky.social is doing a birthday fundraiser for LC research. I just donated, please join me! www.gofundme.com/f/birthday-f...

1/ In March 2023, I received a lumbar puncture. This was key to receiving my chronic inflammatory demyelinating polyneuropathy #cidp diagnosis. This 🧵 is on my experience with identifying and treating #autoimmunedisease. I'll also be sharing some 🧵s I posted previously on the Other Place.

Human Umbilical Cord Blood Infusion Improves Fatigue in Long-COVID Clinical trial results show that HPC, cord blood effectively treats post-COVID fatigue, with 85% of patients experiencing relief.

“Human Umbilical Cord Blood Infusion Improves Fatigue in Long-COVID”

“The phase IIa trial demonstrated significant improvements in fatigue symptoms for long-COVID patients, with 85% achieving complete relief.”

sleepreviewmag.com/sleep-treatm...

Immune system adaptation during gender-affirming testosterone treatment - Nature Examination of immunological changes in transgender individuals undergoing gender-affirming testosterone treatment reveals sex hormone-regulated pathways in humans and explains sex-divergent responses...

Recent paper (Nature)-why are males more vulnerable to severe infections (ex acute #COVID), while females suffer more from autoimmunity (SLE, MS etc and also #LongCovid)? X/Y or hormones? We study adaptation of immune systems in gender-affirming testosterone treatment: nature.com/articles/s41...

Living with COVID-induced metabolic injury ("Long COVID") is like watching paint dry. But instead of paint, it's life itself that you watch passing you by.

#LongCOVID #MECFS #Disability

Day 823 - Can't do any physical, mental or social activity without crashing. Turns out, living takes energy. Who knew.

So yeah, this one rings particularly true.
See that life you had? You can still look, but don't touch.

Day 830. Week 4 of taking rapamycin. Something's happening. The engine seems less clogged, the synapses are firing more cleanly. Yesterday, I even risked a high-intensity interval workout. I should be catatonic today. I am not. Not a hint of PEM. Is this really happening?

#LongCovid #MedSky #MECFS

In case you missed it, here’s everything you need to know about Donald Trump’s likely pick for NIH director.

The NIH is the largest funder of biomedical research in the world.

Jay Bhattacharya has no experience managing bureaucracy, but he has been an outspoken advocate for mass COVID infection.

Screenshot of REVERSE-LC website showing Patient Led Scorecard evaluation, with most grades in the +2 "Ideal" category and a few in the +1 "Great" category. Text reads: "The Reverse-LC Study’s Patient-Led Research Scorecard Our trial was graded by leaders at the Patient-Led Research Collaborative (PLRC) (Hannah Davis, Gina Assaf), ME-Action (Jaime Seltzer), and National Academy of Medicine Long COVID testifier (Kelly Sealey). This scorecard was created by Patient-Led Research Collaborative. The figure shows the high degree of collaboration between the physician-scientists and patient-researchers with not only lived experience of the illness, but also experience with the research process, participatory design, patient engagement, and study design. We are grateful for the input from so many who shared their wisdom and advice to make this NIH-funded trial the best it can be. Reverse-LC is a campaign of human service and scientific discovery."

Also, I really like that the website proudly shows its Patient-Led Research Scorecard. This is a tool that @patientled.bsky.social developed to evaluate research projects based on how deeply they collaborated with patients. More of this, please! cdn.prod.website-files.com/65981d7bb4de...