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It'sME(Jaime) Profile picture
@exceedhergrasp1
Sep 27, 2021 • 8 tweets • 7 min read • Read on X
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Ian Lipkin, now: Lipkin is summarizing a number of different efforts associated with his research group. He is the first person at this conference that has mentioned how previous coronaviral outbreaks (SARS/MERS) have led to ME/CFS-like syndromes. (1/7) #LongCOVID #MEcfs #GWI
Talking about work at Centers, with shout-outs to each center as well as the nonprofits that have been involved, including our own @MEActNet. (Looking forward to sharing stuff re: this project soon!) (2/7) #MEcfs @Columbia_CII
Overall aims for the Collaborative Research Centers, funded by @NIH. (3/7) #fatigue #MEcfs
Dramatic increases in butyrate-producing bacteria in pwME. Butyrate is imp't to control inflammation & impacts CNS function. (4/7) #metabolism #fatigue #MECFS
Short-duration vs long-duration ME/CFS shows different patterns of cytokine activation (Hornig et al. 2015 -- I cite it a lot). (5/7) #immunology #MEcfs
Clonal B cell expansion has also been found in ME/CFS. (6/7) #fatigue #MECFS #immunology #fatigue pubmed.ncbi.nlm.nih.gov/32692761/
Lipkin's group found some changes in citric acid cycle byproducts pre- and post-exercise, implicating issues in the TCA cycle in #pwME. #fatigue #MECFS
And, Summary: (7/7)
Want to see the rest of the talks at this conference? Go here: .

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
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
It'sME(Jaime) Profile picture
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
It'sME(Jaime) Profile picture
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
It'sME(Jaime) Profile picture
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
It'sME(Jaime) Profile picture
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
It'sME(Jaime) Profile picture
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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