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It'sME(Jaime) Profile picture
It'sME(Jaime)
@exceedhergrasp1
Director of Sci & Med Outreach, #MEAction Consultant researcher, Stanford U. #ME, #EDS, #POTS, #LongCOVID I work for several employers, even you! Views my own
#LongHauler for 24 Years - #MECFS G93.3 Profile picture Cathleen Fromm Profile picture Gottfried Weibler Profile picture Alison Waters Profile picture 5 subscribed
Sep 26 • 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 • 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 • 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 • 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 • 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 • 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 • 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 • 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)
Aug 24, 2022 • 4 tweets • 2 min read
Thanks to @WebMD for this article on #LongCOVID and its connection to the post-viral diseases that came before it.

"When Jaime Seltzer first heard about a new virus that was spreading globally early in 2020, she was on full alert...

(1/4)
webmd.com/lung/news/2022… ...As an advocate for the [often] post-viral condition known as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, she worried about a new wave of people having long-term disabilities."
“The hair on my arms stood on end,” says Seltzer...
(2/4)
Aug 23, 2022 • 6 tweets • 2 min read
Question for the mutuals. I've got too much stuff to put on my Biosketch and CV and need someone to just take it out of my hands, put stuff where it goes & make it look nice. Obv willing to pay for that. Any suggestions? Reason I'm asking here is that plenty of people will be like, "Biosketch, I'm sure I can figure that out!"

Ehhhhhhh pls someone who has a Biosketch of their own or who has experience in knowing what goes where under what heading. Pls retweet first tweet!
Aug 18, 2022 • 10 tweets • 4 min read
Apparently, @TwitterSupport is freezing people's accounts for tweeting research studies, now.

Hey, @Medscape, were you aware that your scholarly article is being labeled "COVID disinformation" and that sharing it is apparently a bannable offense? "your account, @Dakota_150 has been locked for violatin @TwitterSupport @Medscape And @Dakota_150 isn't the only one. For those unfamiliar with their tweets, they are generally measured & careful, sharing scholarly sources only. When you get banned from social media by sharing science from reputable sources, we are in a very 1984-esque scenario. Who else?
Jul 31, 2022 • 10 tweets • 3 min read
Some folks (@ales_frost, @meghanor) were talking about the latter part of this post. Why would an "early ME" or "peri-onset" patient have clinically low cholesterol?

What would that mean?

(A quick 🧵of my 🧵) (1/10) Clinically low cholesterol is bad, do we even need to say it? Cholesterol is the reason you have hormones & the reason your cell membranes don't shatter when they bump other cells. (2/10)
Jul 30, 2022 • 23 tweets • 5 min read
My niece is Going Through It, & she agreed to use her suffering for educational purposes! So strap in, #NEISvoid & #MedTwitter for a #CaseStudy on "early ME" or "peri-onset ME".

This is what your patient may look like if they are developing ME but don't YET have PEM.

(1/19) 🧵 Recent history of sometimes overlapping infections you normally see in immunocompromised individuals.

Our pt (over ~3 mo):
~ COVID-19
~ MRSA (!)
~ Strep
~ Cutaneous infection - pathogen unclear. Ablation required.

(2/19)
Jul 27, 2022 • 4 tweets • 2 min read
Researchers: want to see the resources from my workshop at #IACFSME earlier today?

Check out the landing page for the talk! Here you'll find: 🧵

(1/4)

meaction.net/workshop ACTIVITY 1: Planning & Budgeting for Research Partners with Lived Experience

Patient participation improves quality, validity & perceived credibility of research.

Use this handout to plan & budget for patient partners at every stage of research. (2/4) meaction.net/workshop
May 17, 2022 • 15 tweets • 4 min read
What are some things I consider Very Bad that I don't see? 1) The Multiple-Hit Hypothesis

Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.

Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
May 17, 2022 • 7 tweets • 3 min read
I wonder how many realize we have not each touched on the worst-case scenario w/SARS-CoV-2. We're so busy trying to agree on what's happening right now.

You can't predict the future while you're still negotiating the present. Look, clear-cut answers aren't easy. But saying, "getting COVID is good b/c it gets rid of COVID anxiety!"; or that COVID is over; or that COVID is like a cold; or that the loss of over a million American lives is nothing... these are deliberately misleading statements.