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)
~ What food(s), if any, I'm allergic to
~ Does pot smoke bother me? If so, everyone can just smoke upstairs
~ 4-5 steps up to the house - am I ok to climb them?
~ Parking might be hard but he'll be sure to drop me at the door
~ 15-20 attendees, all 2x- & 3x-vaxed: ok? (4/7)
Then he said he'd take the Chronic Illness Survey Adventure as a HC.
Then,
"OK! I want to stop talking now and watch television. I don't know what I want to watch, yet, but I'm ready to 'shut off'!" (5/7)
Lollll very typical cheery bluntness from that side of the family: conversation-done-now-love-you-BYE!
But the point is my uncle is a Delight. And I was touched. (6/7)
There are so many myths floating around about ME but my uncle, who has decided to Make An Effort, seems to have circumvented them all.
There should be a question to determine if someone is really "in the know" about ME.
I suggest, "Do you know David Tuller?" (7/7)
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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)
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
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)
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.
Today, someone told me that a negative test "proves the person never had COVID" (in ref to #LongCOVID).
Should we list, AGAIN, the reasons why "no + COVID test" is NOT a reason to assume the person didn't have COVID?
yes, yes we should! A🧵(1/9)
First, and this may be new to some of you: as Dr. William notes, COVID testing seems like it is not catching some of the newer variants. (2/9)
Second, early testing sucked. If you got tested early (first half of 2020) with all the symptoms of COVID but came up negative, you may well have had a false negative. One test kit sent to laboratories had a 33% fail rate. (3/9) npr.org/2020/11/06/929…
Now we get to another area of particular interest for me: circadian rhythms and #fatigue. Elizabeth Klerman presenting. (1/5) #sleep
How does sleep/circadian rhythms affect various body systems and ultimate effects?
First I've heard of health disparities, here; well done, Klerman. #fatigue#sleep
Circadian rhythms WILL affect results in studies. Researchers, take note!
Record time of events, blood draws, etc.!
Include sleep metrics in subjects!
Circadian =/ diurnal.
Most studies that say they're talking about circadian rhythms are actually referencing diurnal rhythms.