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Laura Profile picture
@_let_me_rest
Apr 29, 2023 • 17 tweets • 7 min read • Read on X
Patients walk out of a @StanfordMed #LongCovid trial after medical staff stop masking while tending to LC participants. 1/ Image
This is the second high-profile #LongCovid trial I’ve heard of in the past couple of weeks in which medical staff refused to mask while interacting with extremely vulnerable participants. In some settings, staff are “masking,” but only wearing surgical masks. 2/
Some of us are so debilitated by #LongCovid that we come to these study sites unable to walk. We travel long distances—on our own dime, at great risk to our health—in the hope that we don’t get the placebo and your experimental treatment is the one that gets us out of hell. 3/
We spend our lives isolated, imploring our loved ones not to take risks that could leave us bedbound. None of us can afford to catch this virus again.

What exactly do these researchers think they’re studying? Do they not know about the risks of reinfection? Do they not care? 4/
It’s inexcusable that ANY healthcare provider is going without a mask, but to work maskless with patients whose lives have been destroyed by the very virus whose long-term effects they are claiming to study is downright shameful.

@StanfordMed: do better. 5/
If nothing else, do better by your own research. Will your results be more consistent if your participants catch Covid and deteriorate in the middle of your study? I’m no scientist, but I’m guessing not. 6/
Just yesterday, LC advocates in Italy forced the extension of mask mandates in healthcare settings. We need the same, NOW, everywhere.

But masking at #LongCovid study sites should be the absolute bare fucking minimum.

Get 👏 it 👏 together 👏 , people.

/end
Addendum: Just spoke to my friend who was part of the other LC study that did not require its clinicians to mask. I’ll share the details tomorrow (limited spoons)—
—but let it be known that I’m very happy to name and shame any facility/study that is not mitigating transmission for its #LongCovid patients. DM me. This shit is ridiculous.
I’m being told @StanfordHealth is the one to tag, NOT @StanfordMed. Any comment, Stanford Health? We’d love to hear from you 😍
Another @StanfordHealth Paxlovid for Long Covid study participant quits:
Update from OP on Reddit—turns out @StanfordHealth masks for some of its vulnerable Long Covid study participants, but not others. Ok. Reddit comment from u/atyl1...
@StanfordHealth Link to original thread on r/covidlonghaulers (h/t to incredible LC advocate @dsethlewis!!!):
reddit.com/r/covidlonghau…
Further clarification from OP. The callousness on display here from @StanfordHealth is stunning. I should also clarify, this...

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More from @_let_me_rest

Laura Profile picture
Jan 2
Long Covid Day 1,416: Due to the worsening of my health, I’ve reluctantly decided to take some time away from social media.

I’ve been unable to leave my flat for a month, and several times in December, I experienced periods when I was unable to move or speak.

1/ Me, Laura, lying on a couch with eyes closed covered by a blanket. The sun is on my face.
This tells me I need to cut back on activity even more than I already have. Finding ways to do less is difficult when I’m mostly alone and have to take care of myself, so social interaction is the next to go.

2/
As it is, I already feel extremely isolated. Leaving my online community is sure to do a number on my mental health, which was not great to begin with. But I don’t see any other options right now.

3/
Read 10 tweets
Laura Profile picture
Dec 10, 2023
As many of you know all too well, Long Covid and ME/CFS are world-shrinking diseases. This week, in giving up my work with @BerlinBuyers, my already tiny personal universe became that much smaller. /
Advocating with @BerlinBuyers was the one thing I had left that gave me some purpose, some joy, that reminded me what I was good at. I’m angry and heartbroken that I have to stop, /
but almost four years after developing Long Covid, I’m the sickest I’ve ever been. Hope is in very short supply these days.

I’ll be honest: I don’t see myself going past five years with this disease. /
Read 12 tweets
Laura Profile picture
Apr 30, 2023
Hey, @StanfordCancer, looks like you have a Long Covid denier MD on your staff. And he's not even a little shy.
@Stanford @StanfordMed @StanfordHealth, hi again, been playing phone tag all week. The Long Covid community would like a few words. Whenever you're ready.
You too, @UCSF––might want to educate this "Physician-Scientist" on post-viral chronic illness
Read 4 tweets
Laura Profile picture
Mar 21, 2023
The trouble with #LongCovid, from a branding perspective, is:

1. Anyone can get it
2. Anyone can prevent other people from getting it.

This implicates every single human on the planet.
The same is true of acute Covid, of course. Still, early in the pandemic, when most people were afraid of the virus, its branding was on point. This made it easier to act in ways that protected ourselves and others. Masks were worn. Socializing was distanced. Etc.
But our governments told us all this was temporary—we just had to wait. When the numbers came down, we could relax. When we’d built up herd immunity, we could relax. When the vaccines came out, we could relax. When Covid finally mutated into the common cold, we could relax.
Read 9 tweets
Laura Profile picture
Mar 3, 2023
#LongCovid Day 1,110: I’ve been thinking a lot about former Senator Jim Inhofe. And Justin Bieber. A thread. 1/
Inhofe recently said he retired from the Senate a year ago because he’s been struggling with #LongCovid.

He added that “five or six” of his former colleagues have Long Covid, “but I’m the only one who admits it.” 2/

businessinsider.com/republican-sen…
Well. It’s pretty easy to admit you have #LongCovid a year after retiring from your public-facing job.

Jim Inhofe wasn’t talking about it when he was IN the Senate—or proposing any legislation to help the millions of American long haulers. But ok. 3/
Read 15 tweets
Laura Profile picture
Feb 28, 2023
#LongCovid Day 1,107: Saw my GP. Went into great depth about how sick I’ve been, all the treatments I’ve tried, armed with reports from specialists from the last three years. She suggested a clinic for psychosomatic illness.

We are so fucked.
GP asked if I’d be willing to speak to a psychiatrist. I said I’d been speaking to psychiatrists for 20 years and that I have a therapist I see weekly. In fact, the only reason I was there was to save myself a trip to the psych by getting a refill on my SSRIs
(which she was reluctant to give me). I also asked for a referral to a rehab center in a spa town (a friend with #longCovid had been sent there, covered by national insurance). She told me I was not eligible.
Read 8 tweets

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