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It'sME(Jaime) Profile picture
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8 Jan, 4 tweets, 1 min read
I have a small piece of good news. Remember this? (1/3)
I got the rest of the funding for the pilot from a private donation! (2/3)
Provided the proof of concept work makes sense, I will have some funding from a much larger grant, coming through this spring... so I will be able to enroll patients and test the idea more thoroughly.

It's a proposed biomarker for PEM. We'll see. 👍🏼 (3/3)
Thanks to all for the congratulations! Now the hard(er) work begins.

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
7 Jan
Glad to be a panelist at Project ECHO on #LongCOVID & #MECFS today! Fruitful convo on #POTS & comorbidities. The big meetings, starting next week, are open to all.
To register for any of the sessions: echo.zoom.us/webinar/regist…

More info below on this 🧵! (1/5) #MedTwitter #MedEd Image
Family Health Centers of San Diego, the ECHO Institute, University of Washington, and University of Colorado have collaborated to provide a CDC-funded monthly webinar-style ECHO learning session to rapidly disseminate Post-acute Sequelae of SARS-COV-2 infection (#LongCOVID) (2/5)
& Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (#MECFS) findings & emerging best practices. This large-scale national monthly ECHO series will offer didactic presentations by subject matter experts, ex. of emerging best practices & models of care, & a facilitated Q&A. (3/5)
Read 7 tweets
It'sME(Jaime) Profile picture
21 Nov 21
The chronic illness community saw it coming and did our best to prepare folks. #MEAction had a coordinated response. But the chronic illness community is not a public health agency, and cannot coordinate a response on the level necessary to educate the public as a whole. (1/7)
We're told patients should ensure researchers study #MECFS rather than CDC/NIH ringfencing funding. At the public health level, we were left to do our best to educate about the potential for post-viral chronic complex diseases like #LongCOVID. I'm not sure how many heard. (2/7)
I mean, I'm still hearing that #LongCOVID is a 'mystery' & "who could've predicted--?" & I'm VERY worried about who has been identified as an expert in the #LongCOVID space who is not a patient. They largely have no experience with post-viral disease before COVID. (3/7)
Read 23 tweets
It'sME(Jaime) Profile picture
21 Nov 21
Just had a funny convo with my uncle. "I said you're coming for Thanksgiving and some of my friends asked if you know @davidtuller1?"
"Yes, I know David--"
"He writes about ME"
"Yes --"
"I read one of his articles, about cognitive behavioral therapy.. (1/7)
"...and exercise and how they just throw this at ME patients and of course it doesn't help but that National Institutes of Health in UK changed this. Did you know about that?" (2/7)
"...Anyway I don't think David will be there, I just think it's cool we share some friends-of-friends."

Twitterverse, he then shocked me by asking: (3/7)
Read 7 tweets
It'sME(Jaime) Profile picture
10 Nov 21
Someone wrote me an email asking about results for Survey 1/Chapter 1 of the Chronic Illness Survey Adventure! That survey is still open, so I can't respond in detail, but I can tell you a few things about our progress: (1/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
We definitely need more healthy controls. Please ask your healthy friends & relatives to take the survey! Each section is taking most people less than 15 minutes so it's very straightforward and really helps our community. (2/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
Overall, we have over 2K responders who 'crossed the finish line' in Survey 1. That means they completed the survey and meeting inclusion criteria (which were coded into the survey itself), and so on. Thousands more signed up and sat on it (as one does). (3/8) #SC4D
Read 8 tweets
It'sME(Jaime) Profile picture
10 Nov 21
Survey Section 2 of the Chronic Illness Survey Adventure (#SC4D) is now open! Check your email for your invitation!
Didn’t get your invite? Let me help you troubleshoot right here. (1/9)
Did you check spam?
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Are you sure you weren’t ruled out? (1/2)
If you are a healthy control, you may have seen a message saying you don't meet the criteria for HCs. If so, you would not get an invite to Section 2. (3/9)
Read 12 tweets
It'sME(Jaime) Profile picture
9 Nov 21
Acts of Helplessness, by Rumi

Here are the miracle-signs you want: that
you cry through the night and get up at dawn, asking,
that in the absence of what you ask for your day gets dark,
your neck thin as a spindle, that what you give away
is all you won, that you sacrifice belongings,
sleep, health, your head, that you often
sit down in a fire like aloes wood, and often go out
to meet a blade like a battered helmet.
When acts of helplessness become habitual,
those are the *signs*.
But you run back and forth listening for unusual events,
peering into faces of travellers.
“Why are you looking at me like a madman?”
*I have lost a friend. Please forgive me.*
Searching like that does not fail.
There will come a rider who holds you close.
Read 6 tweets

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