Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.
Jan 26 • 6 tweets • 2 min read
This @NewYorker story, about @VirusesImmunity and @hmkyale's LISTEN study and patient involvement, is interesting — but to my mind, it misses a key part of this. newyorker.com/news/annals-of…
Reading this, you'd think that the main reason to involve patients like this is to be nice, so that these poor patients don't *feel* excluded and frustrated. But that's not it.
Jan 2 • 24 tweets • 5 min read
I've been watching how #BethMazur's death has been impacting folks, including me. When anyone dies, it creates a kind of rip in the fabric of the universe. That hole is bigger for someone so connected as Beth, and even bigger when someone dies by suicide. meaction.net/2023/12/22/sad…
That tear opens up a kind of black hole that draws us toward it. Everyone touched by her feels it in their own way. For those most vulnerable, it makes suicide feel even closer, more possible. If that's you, please talk to those you love and get support: meaction.net/support-and-cr…
Dec 24, 2023 • 36 tweets • 8 min read
I luckily shared the last couple of weeks of #BethMazur's life with her. I want you to know: She felt loved when she died. She died because her ME was unbearable. There's nothing more any of us could have done. Effective treatment is the only thing that could have saved her.
Fuck ME.
Oct 5, 2023 • 8 tweets • 3 min read
I thought I'd post my tips for getting started at B l u e S k y again, to help orient folks when they arrive.
The simplest way to start is by following this chronic illness feed: . Click the heart and "Add to my feeds."
That alone will get you started!bsky.app/profile/did:pl…
To find posts on the feeds you're following, click on the # icon on the left hand side of the screen.
The next step would be to follow this disability feed:
I just heard someone recovering from acute Covid say that they can't exercise for a month to reduce the chances of developing Long Covid. That's not quite right -- though yay for knowing the link between exertion and LC! Here are some guidelines:
-- Until you feel 100%, stop the moment you think, "I'm a little tired." Not five minutes later. If you can, sit or lie down when you get tired. (Being horizontal helps dysautonomia.)
-- This counts not just for exercise, but for all exertion, physical, mental or emotional.
Nov 28, 2022 • 6 tweets • 2 min read
Friends, I need your help again. I’m again having convulsions multiple times a day. I’m going to New York to see my neurosurgeon to figure out what the problem is. I can only travel by air ambulance, but my insurance, @BCBSIL, is refusing to cover this essential medical expense.
I’m having convulsions like this many times a day. Warning: these are upsetting to watch, so skip it if you’re feeling fragile. twitter.com/i/web/status/1…
Oct 6, 2022 • 11 tweets • 2 min read
oday is my birthday, a big one. My husband John always finds ways to make my birthday special, but I’ve been especially fragile lately, so even a brunch with a few friends seemed like too much. A thread.
And the last few days have been truly awful, with lots of convulsions, because I’m retethered and no one knows what to do about it.
I woke up this morning feeling blue, wishing I could find a brighter spirit for this day in particular.
Jul 23, 2022 • 14 tweets • 3 min read
Journalist friends: here’s an important story I can’t write. About half of long Covid patients develop ME/CFS. There are only a couple dozen, max, ME/CFS clinicians in the US, and that’s better than in other countries. And most are old. 1/
I know, ME/CFS and Long Covid are often described as “similar,” but the fact is that about half of long Covid patients meet ME/CFS criteria — ie, they have it. 2/
Sep 15, 2021 • 7 tweets • 1 min read
Studying ME/CFS in isolation from CCI, tethered cord, Lyme, hEDS, MCAS, mold, etc is a massive mistake. They’re deeply interrelated. Eg, before my fusion, my mold reactivity got worse and worse, to the point that no matter how much I washed them, I was reacting to my bedding. 1/
The sx were classic mold sx for me: insomnia, an electric feeling in my limbs, and the next day, bodywide swelling and pain. It was awful. But then I tried sleeping with a cervical collar, and it solved it. 2/
Aug 27, 2021 • 11 tweets • 3 min read
An update on me: I've continued to have no neurological problems since my second tethered cord release. I also have no post-exertional malaise, though I'm still recovering from surgery and can get tired out fairly easily. I can walk a mile or so with no problem. #mespine 1/
No seizures, no paralysis, no inability to speak, no difficulty breathing.
My mold/MCAS issues have decreased after the three surgeries. I'm back home, after years when I couldn't tolerate sleeping in any buildings. 2/
Jan 29, 2021 • 30 tweets • 6 min read
1/ Paul Garner seems to be describing some form of brain retraining in claiming that positive thinking cured him of ME. He's extrapolating hugely from his own, n=1 case to make claims that are deeply harmful to the ME community and that are ungrounded in evidence.
2/ The tricky thing, though, is that there's something to brain retraining. Many ME patients have benefited from it. The problem isn't the idea that brain retraining can be a useful tool; the problem is extrapolating that brain retraining solves the entire problem of ME.
Jan 27, 2021 • 6 tweets • 2 min read
There are lots of ME recovery stories, even though recovery is rare for ppl w/ ME for more than a few years. Often, people who recover are... really annoying. I've remitted 2x, and I've tried to talk about it v carefully. I'd like to suggest some guidelines for recovery stories.
1. What worked for you may not work for others. ME is hetergoeneous. Say that.
2. You may not understand correctly what worked for you. Sometimes ME remits spontaneously, especially at the beginning. Present the evidence for your conclusion, and acknowledge that you may be wrong
Jan 27, 2021 • 30 tweets • 33 min read
THREAD: I wrote a piece for @Open_Notebook offering advice to science journalists covering contested illnesses, coming out of 15 years of being both a journalist and a patient. Here are some highlights, plus links to some of the high-quality coverage. theopennotebook.com/2021/01/26/how… 1/@Open_Notebook When I got #mecfs, I was shocked that science, medicine, and journalism on my illness were all… pretty bad. “I felt as though I had fallen through the looking glass and found that up and down and right and wrong and science and bullshit had scrambled into a nauseating mess.” 2/
Jan 17, 2021 • 20 tweets • 3 min read
It's been 13 months since my craniocervical fusion surgery and 7 months since my tethered cord surgery. My diagnoses were craniocervical instability, tethered cord, ME/CFS, MCAS, POTS, and mold illness (which may or may be fully explained by MCAS). 1/n
Before my first surgery, I couldn't sleep inside a house b/c of mold illness/MCAS. I got paralyzed, unable to speak, and barely able to breathe, sometimes 8 or more times a day. This could result from tilting my head back, speaking too much, a loud sound, a tap on the head. 2/n
Jan 16, 2021 • 6 tweets • 3 min read
One of the biggest challenges #mecfs has faced is that there isn't a tidy story to organize one's thoughts around. "Fatigue" has been offered up as the story, but it's a TERRIBLE one. Trivializing, false, and vague. 1/
Some percentage of long-haulers will end up meeting the criteria for #mecfs. The big advantage that they have is that they have a better story: they never recovered from a pandemic. 2/
