@jwgale Thank you for your reporting, it is so desperately needed.
But - HOLY CRAP - the illustration by Vishnu M Nair (!!!)…WOW!
THAT is the kind of representation that post-viral illness really needs. Brilliant. @LBatemanMD @BatemanHorne @Bloomberg
When a magazine runs a photo of a person with an invisible illness in their human flesh, the imagery is actually very misleading. Their illness is literally invisible - they look fine!This illustration provides more accuracy to your reporting.
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You’re implying he is “choosing” this. There is no choice in the matter for him. I can’t believe he kept trying to play.
This disease doesn’t have a cure and it is incompatible with exercise, by its very definition.
He was forced to pause, and this pause will be indefinite.
Many millions (of mostly young & middle aged women) are having their lives destroyed by the wide spectrum of post-viral illness.
We must fund research like our lives depend on it (because they do).
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I know of a guy who just began IVIG treatment this fall. His Dr wrote a strongly worded 2 page letter (I saw it) highlighting SFN, neuropathic pain, elevated inflammation markers in blood & CFS. This was in response to being previously denied by insurance.
I was surprised he could get it approved without something like CVID or similar.
He has been quite severe, improving some measure on Pemgarda this winter, but his care team clearly felt he needed even more immune support bc his symptoms were still unstable.
His initial message to me post IVIG was very positive, but its still pretty early in the treatment.
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mswalker retweeted
Never forget that Renée Good and Alex Pretti were murdered fighting Trump’s fascism.
Tonight belongs to them.
Was Nathan always “in character” when he was staying with you guys, or was he vastly different when the cameras were turned off.
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From the Atlantic today- congenital measles 😳😷
This ongoing measles resurgence has got to be terrifying for expecting parents / parents of infants too young for the MMR vax (especially in the communities where uptake is low). @Invivyd got antibodies?
theatlantic.com/health/2026/…
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This is such a great write-up & a good example for patients to share with a doctor. There ARE treatments that help SOME people gain back some modicum of life.
The end goal is still a cure… in the meantime, we need to help people survive a devastating situation.
I will even say that some treatments that appear to merely manage symptoms could also possibly be preventing further decline or bolster chance for improvement.
I know a woman on Baricitinib who immediately regresses if she pauses treatment, and yet, while on treatment has seen her labs slowly appear to improve.
On treatment, she lives a life with some comfort, off treatment, her life is hell.
I recently said I'm feeling good for the first time since developing long COVID. Lots of people asked for meds that helped the most.
Here's a list and my general approach.
longcovidmd.substack.com/p/m…
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I tried to withhold judgement for a moment while he held his Long Covid Roundtable last fall. Even a broke clock can get the correct time twice a day?
My good faith was entirely wasted 🙄
I empathize with all the scientists who must behave in a neutral manner toward the grifting idiots currently holding tight to the purse strings.
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Might be worth asking for some Metformin?
academic.oup.com/cid/article…
I definitely don’t deny the danger of COVID (!!) & I actually don’t deny that “vaccine injury” could be found to be “asymptomatic persistent COVID infection.”
I’m just all for listening to patients & supporting research, wherever it leads.
All the best to you too!
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I tested numerous times in the weeks surrounding my decline, all were negative. So, I had no positive test, and no Covid symptoms.
Who would conclude from those two pieces of evidence that I had covid?
The only thing that was clear was that I DID have the vaccine & my response to that one was completely different than the 4 shots that I had previously had. I assumed I would recover in the short term, but I just declined further & further.
My frustration lies with the extreme denial of our experience.
Why do you feel compelled to dismiss me? This is a complex situation - anytime I mention my vaccine injury, I get mocked snd dismissed. It’s a literal nightmare to have an illness that has been COMPLETELY politicized by everyone who doesn’t have it.
Just move along and recognize that your *opinion* isn’t relevant. The only thing that holds any weight is RESEARCH.
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I'd like to get the shingrix vaccine! I've asked multiple providers about their thoughts on this one specifically, and they've all cautioned that it's a heavy hitter & that no one can really predict how my immune system would handle it.
I'm not concerned with a few bad days (or even bad weeks) - I'm concerned that something could push my immune system all the way back to square one and I'm not sure if I'd be so lucky to recover this much again. Ugh. "Enjoy" your second dose ;-)
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This is me in my home state of MN, comrade. xitter.gq/mswalker/status/201485…
It's worth asking yourself, why do you object to listening to patient reported outcomes? What impact does your unreasonable attitude have on vaccine hesitancy?
You're contributing to patient harm, Авер.
It was a great day to protest fascism, in dangerous temps - with tens of thousands of my favorite furious Minnesotans. ❤️
#FUCKice #iceOUT
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Thank you for your AI generated reply 🙄
The fact is that large numbers of people have reported injury that looks very similar to Long Covid after these vaccines.
It’s very unscientific for people like you to proclaim that this vaccine can’t possibly cause such harm when it is clearly being reported by patients.
Why do you feel it is appropriate to disregard the health consequences being reported by patients rather than supporting further inquiry? If the old Moderna formulation caused harm & the new one does not, don’t you think patients would benefitting from understanding this?
This is not a settled matter. Listen to the scientific groups engaged in Long Covid research- they speak of the LC and Post-Vaccine patients in the same breath.
We are all worthy of research, understanding & treatments even if it causes some people the stress of reevaluating preconceived notions.
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I don’t discourage vaccination. I was a very grateful recipient of numerous covid vaccines, but I was injured after #5 in 2024.
So- I’d be very interested to hear if Moderna’s new product (made of two smaller spike regions rather than the whole spike) is safer.
Have you read any such research?
BTW, I also can’t access the whole paper that Harry linked here, & I’d really like to read their methods & discussion if anyone would like to send a copy my way 😉
