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It'sME(Jaime) Profile picture
It'sME(Jaime)
@exceedhergrasp1
Scientific Director, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1@bsky.social (there more than here)
8 subscribers
Jul 6 • 4 tweets • 2 min read
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
Jun 6 • 4 tweets • 2 min read
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…
Jun 1 • 18 tweets • 7 min read
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?"
May 10 • 38 tweets • 13 min read
(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…
Apr 6 • 6 tweets • 2 min read
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…
Oct 31, 2023 • 5 tweets • 1 min read
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)
Oct 30, 2023 • 14 tweets • 4 min read
#Disability rates have skyrocketed in the United States in the wake of #COVID, with infection-associated chronic illnesses like #MECFS, #POTS, & #MCAS surging.  US Census figures currently report that 14% of Americans are now disabled. (1/7) 🧵 Rather than address the growing crisis of an ongoing pandemic, not to mention those already disabled, the US Census is responding by changing the definition of disability.

And if they do so, the rate of disability as identified by the Census is slated to drop to 8%. (2/7)
Oct 7, 2023 • 8 tweets • 3 min read
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with @GrachStephanie and Ravi Ganesh and Tony Chon on this! 🧵#MedEd #MedTwitter mayoclinicproceedings.org/article/S0025-… A concise clinical review is limited to a specific word count and a specific citation count, so we did our best to include the most vital information for diagnosis and treatment of #MECFS. (2/)
Sep 26, 2023 • 11 tweets • 2 min read
Excellent, actually, from the RECOVER Mechanistic Taskforce: . 🧵elifesciences.org/articles/86043 "We... emphasize the need to build on and complement, rather than merely repeat, existing research from similar conditions, such as #MECFS, #Lyme disease, #dysautonomia..." (2/)
Sep 25, 2023 • 25 tweets • 5 min read
Let's talk about the UK's Science Media Centre and its history.

The Centre calls itself "an independent press office for science, working closely with press officers from universities, scientific companies, research funders &leading science and engineering institutions." The SMC is a publicly-funded PR group, representing influential corporations whose financial interests are threatened by the interests of the public.

Connie St. Louis, then president of the Association of British Science Writers, said: "Perhaps the greatest tragedy, or item of public interest, has been the complicity of successive scientifically illiterate UK governments, which have donated nearly half a million pounds of public funds to this dishonest endeavor." -- St. Louis, source: https://archives.cjr.org/the_observatory/science_media_centers_the_pres.php
Sep 5, 2023 • 8 tweets • 2 min read
Baffling decision by @NIH's National Institute on Minority Health and Health Disparities (@NIMHD): disabled people don't "count" as a minoritized population with greater health disparities than able-bodied folks.

They explained their decision by... (1/4) 🧵 ...stating that disabled people don't always face inequities.

An unusual claim, since multiple studies have found & documented such inequities and disparities.

The NIH Working Group for Individuals with Disabilities Appendix C has the receipts: (2/3) acd.od.nih.gov/documents/pres…
Mar 17, 2023 • 4 tweets • 2 min read
THIS IS A BIGGER DEAL THAN MOST PEOPLE REALIZE.

Awhile back, I made a post about the Wayback Machine.

The Wayback at the @internetarchive allows folks to see documents as they used to be on the internet-- even if subsequently deleted or censored. 🧵 Image The Wayback Machine is vital for advocacy. We can see what our government said in the past, and compare to what they're saying today.

As part of our ongoing slide into regressivism, we're erasing history. Erasing the knowledge that things can be better, that they once were. (2/)
Mar 8, 2023 • 8 tweets • 5 min read
TW: death, severe illness

Here to support #DontLetMEDie! Let's talk about severe ME.

ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵 The quality of life in people with #MECFS is low on the median. 🧵#DontLetMEDie
Feb 25, 2023 • 24 tweets • 6 min read
Many may be unaware that their #LongCOVID presentation would dx with infection-associated chronic illnesses like #MECFS, #POTS, #MCAS, et al.

I promised I'd put together a thread on #POTS after the thread about management advice for the condition.

So let's get started! (1/) First, let's discuss what #POTS may feel like.

POTS is postural orthostatic tachycardia syndrome. It means that when you change position from lying down to sitting up, or sitting to standing, your heart may pound, you'll feel dizzy &/or nauseated, and you can even pass out! (2/)
Feb 25, 2023 • 13 tweets • 4 min read
Many systems already require that you get a NEW prescription every MONTH for #ADHD. Now, patients will have to visit a clinician IN PERSON every single month to "prove" they still have #ADHD and get the meds they need to function. (1/4) 🧵 Great news for providers who love to phone it in & cash a check. All you have to do is say "yep, still #ADHD" & collect your fee.

Bad news for patients, especially:
(1) multiply disabled patients, who will miss appointments, & go off and on their meds as a result, and (2/4)
Feb 18, 2023 • 7 tweets • 3 min read
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
Dec 22, 2022 • 19 tweets • 6 min read
✨ADVOCACY ACTION AHOY!✨

To all those remaining on Twitter in #NEISvoid, #MECFS and #LongCOVID circles... this is a big deal.

Looks like RECOVER is trialing exercise and CBT for #LongCOVID. Guess we have our reason why they were so keen to exclude #MECFS advocates! A 🧵 All along, #LongCOVID and #MECFS researchers, clinicians & advocates warned that RECOVER was going to be a colossal waste of time & money if they tested for values we already know are normal in infection-associated chronic illness, & therapies we already know do not work. (2)
Dec 22, 2022 • 4 tweets • 2 min read
1) Those of us who are cautious are mostly staying at home; if we leave, we're masked
2) We're not going to big gatherings
3) If we have very sick relatives/kids, we're at home taking care of them.

This creates the mirage of a healthy society where few are suffering. 🧵 This is at the heart of #MillionsMissing, the original campaign for #MECFS: an infection-associated chronic illness. ~50% of people with #LongCOVID have #MECFS.

When you get this sick, you "go missing"... you disappear. meaction.net
Dec 22, 2022 • 11 tweets • 10 min read
Everyone in medical research at @Stanford, @UCBerkeley & @UCSF-- did you know about the Arc Investigator Programs? For some of the potential #grants/positions, you must work at one of those unis, but not all. (1/10)

#LongCOVID #MECFS arcinstitute.org/jobs/faculty-a… All Arc investigators receive unrestricted, flexible #funding to pursue their most important ideas – with complete freedom to study fundamental biological mechanisms, develop new technologies, or innovate on therapeutic concepts. (2/10)
#LongCOVID #MECFS arcinstitute.org/jobs/faculty-a…
Sep 30, 2022 • 4 tweets • 2 min read
Subtext: we let COVID and co-infections rage unchecked for so long, that no one is well enough to be present. Unless we threaten you with CPS, our school will be shut down by the county. "Glandular fever" being mononucleosis, caused by EBV. That'd be a pathogen that triggers multiple sclerosis and ME/CFS. You should definitely both "work through" that and should totally expose others. /s
Aug 25, 2022 • 15 tweets • 3 min read
I'm always interested in where we find ourselves sociologically speaking, with ME. I had a bit of an interesting brainstorm just now:

Do we have a serious cognitive roadblock around the concept of muscular deconditioning?

Hear me out. (1/14)🧵 I was talking to a group of clinicians & someone said, "the patient can't walk up a flight of stairs."

I expressed worry. "That's relatively severe. Even I can walk up a flight of stairs without serious trouble."

And the clinicians all registered surprise.

(2/14)