It'sME(Jaime) Profile picture
Feb 18, 2023 7 tweets 3 min read Read on X
Went for a routine test. Tech’s son had #POTS. Showed her my compression socks. But not everyone wants to chat about health, right? So I asked if she wanted to hear more… (1/)
Her: “We know NOTHING! My Kaiser insurance sent me to this MLM, timeshareish scam & told my son to “tell himself he’s safe” when his heart rate increases.”

“They asked lifestyle stuff but he eats healthy & exercises already. They said symptoms were ‘normal for him’.” (2/) #CBT
When she said ‘nothing’ she meant NOTHING, folks. Nothing about compression socks, nothing about recumbent exercise, nothing about avoiding high carb meals, nothing about increasing water intake, nothing about meds. Just patient-blaming CBT & eat more salt. (3/) #POTS
We moved to an empty office where we chatted for an hour+. I think this poor lady’s lunch…

“I don’t know what to do,” she said. “We [parents] knew we were being scammed. We knew my son couldn’t think his #POTS symptoms away but that was all they had so we gave up.” (4/)
We need to root out these therapies delivered this way. Clinicians, check your patient education modules on these diseases and ensure they are USEFUL and ETHICAL. Not a six hour course with negative patient value, so insurance can claim care was delivered. (5/)
We need to ask not whether we have something to offer, but whether we have something useful to offer.

(And yes, I also told her: I’m not a doctor and none of this should be taken as medical advice.) (6/6)
Because so many people had asked, a quick thread on #POTS, what it is, and some general management stuff:

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More from @exceedhergrasp1

Jul 6
The cardinal symptom of #MECFS is #PEM, a flare of symptoms after exertion, often with a characteristic, 24-hr delay. To measure PEM, researchers perform a two-day CPET: a pair of cardiopulmonary exercise tests one day apart. (1/5) 🧵

tinyurl.com/53xt4xvs
2-day CPETs are expensive, so larger studies are tough. This study is the largest to date.

#MECFS folks didn't replicate day one performance, w/significant declines at peak exertion in work, exercise time, Ve, VO2, VCO2, VT, HR, O2pulse, DBP, & RPP. (2/)
tinyurl.com/53xt4xvs
Results were similar in pairs of healthies vs #MECFS matched for aerobic capacity, indicating that fitness level does not predispose to exertion intolerance in #MECFS.

IOW, #pwME don't have an aberrant response to exertion b/c of deconditioning. (4/5)

tinyurl.com/53xt4xvs
Read 4 tweets
Jun 6
According to this article, xylitol increased the risk of cardiovascular events. On further examination, they found that xylitol acted on platelets, increasing clotting. #LongCOVID #MECFS (1/4)

time.com/6985904/xylito…
They found this in mice, at first.

Then, researchers gave ppl a drink w/xylitol & another w/glucose. Xylitol levels jumped 1000x in the plasma, correlating to increased clotting factors-- but not after the glucose drink. (2/4)

#LongCOVID #MECFS
time.com/6985904/xylito…
This is potentially of interest because of the research on dysregulated clotting in #LongCOVID & #MECFS, including microclots.

An FYI! (3/4)

time.com/6985904/xylito…
Read 4 tweets
Jun 1
Tonight, we parody a great, recurring sketch from @LastWeekTonight: How is This Still a Thing?

@LastWeekTonight
@TheDailyShow
#TheGreatestMEdicalScandal #JohnVsJonVsME A cream background with a black vertical line dividing it in half.  On the left-hand side, it says "the Lightning Process" in small, Garamond font with a little image of blue ball lightning.  On the right-hand side is block lettering which reads, "How is this still a thing?"
First, you should know that this is NOT a real segment! We are not trying to claim that @iamjohnoliver.

The previous image is @StarTrek's 'Crystalline Entity' meets 'Graphic Design is our Passion', and we feel this should be proof enough.

Got it? Good.
@LastWeekTonight A still from Last Week Tonight in which John Oliver appears to be directly telling us that this is not a segment from him, nor from Last Week Tonight With John Oliver.  He is a white man wearing glasses and a suit and tie, extending a hand abjuring us Not to Believe.  On the screen behind him is a generic stock photo image of a man holding a yellow post-it that says "Fake or Real?"
Myalgic encephalomyelitis, sometimes called #MECFS, is an infection-associated illness. That means it is often triggered by an infection, often a viral one. About half of those with #LongCOVID meet the diagnostic criteria for #MECFS, so it's a HUGE problem. #JohnVsJonVsME John Oliver, still a white man wearing spectacles and a suit, sits to the right of a screen within which we, through the magic of Canva, have placed the symptoms graphic for ME/CFS from the Concise Clinical Review on ME/CFS in Mayo Clinic Proceedings. Over the graphic is written in black lettering, 'myalgic encephalomyelitis'.
Read 18 tweets
May 10
(I) PRESS:

@TIME

A few years ago, Jaime Seltzer was helping coordinate research projects, grant applications & funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS). (1/)
#LongCOVIDtime.com/5897992/long-h…
“What is it going to take for researchers to take ME seriously?” she and her colleagues often wondered aloud.

The morbid answer, they hypothesized, was a pandemic. (2/) #MECFS #LongCOVID
time.com/5897992/long-h…
This article was produced on October 16, 2020 by @Jamie_Ducharme @TIME. Ducharme was an excellent, thorough interviewer and seemed to intimately understand the most important aspects to revisit in depth. (3/) #MECFS #LongCOVID

#LongCOVIDtime.com/5897992/long-h…
Read 38 tweets
Apr 6
Let's say you have #MECFS or #LongCOVID and you think you might be ready to work again.

But only if you received the right kind of accommodations at your workplace... how would your employer (or you, even!) know what to suggest?

A few years back, our own Ben Hsuborger (1/5)
...worked with a work accommodations website called AskJan to revise and update their page on #MECFS, and he did an incredible job. The best aspect is that, when you scroll down, you can see accommodations by symptom. (2/4) #DisabilityTwitter (2/5)

askjan.org/disabilities/C…
Issues with concentration, memory, and executive function are central to #MECFS presentation. You can find AskJan's list of accommodations for #ADHD and executive functioning here (note: two links to follow). (3/5)



askjan.org/disabilities/A…
askjan.org/articles/Execu…
Read 6 tweets
Oct 31, 2023
Excellent news! #CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵 (1/4)
Some highlights:
✨Lists pathogens known to lead to chronic issues, inc. COVID, Borrelia, EBV
✨Talks about how some symptoms are specific to pathogen, others are common to many infection-associated chronic illnesses
✨Lampshades #MECFS multiple times in the article (2/4)
Highlights, cnt'd
✨Common-language etiology section that outlines a very complex picture very clearly
✨Mentions that everyday testing may not show anything but this does not mean symptoms aren't impairing
✨Lists their current projects (could be more/better, but still) (3/4)
Read 5 tweets

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