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)
Are you sure you weren’t ruled out? (2/2)
If you said you weren’t an HC and you ALSO weren't someone with one of the chronic complex diseases we were recruiting, you also would not have been invited to continue. (4/9)
Have you taken Section 1, yet?
If you haven’t yet taken Section 1, you would need to take that first before you could take section 2. Use the link at meaction.net/epi/quiet, fill out your contact info, and check your email for your invite to take Section 1. (5/9)
Did you sign up but then never take section 1… and now it won’t let you?
Links expire after a few months. If this happens, try signing up again at meaction.net/epi; use the new link you receive to take Section 1. (6/9)
Answers to many other questions on the FAQ. Please check there first! (7/9) meaction.net/epi/faq
Remember, if you have any troubles you can't resolve, you can reach out to sc4d@meaction.net and we'll help fix it. Pls be patient because there are thousands of you; even a small percentage of ppl encountering a difficulty might take time to resolve. (8/9)
I'm glad to be a part of this project and so happy to see so much participation from the #NEISvoid: #pwME, #hEDS & hypermobility disorders, #LongCOVID folks, #POTS ies and #MCAS folks. And don't forget healthies! We hope you will take the survey, too, as a public service. (9/9)
There is an error in the coding that leads you DIRECTLY from survey 1 to survey 2. If you received your invite this morning, there should be no problems; however, if you took Survey 1 and tried to move directly on to survey 2, you may encounter difficulties. Please stand by!
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.
Dragana Ragulja reports: what actually is cause of death in sleep deprivation?
Loss of life in test animals on Day 10 of sleep deprivation led to dissection and finding of serious increases in ROS in the gut in particular (1/3)
Antioxidants specific to the gut can 'rescue' the animals tho. (2/3)
Takeaways: 1) Sleep deprivation is a "bodywide phenomenon", says Ragulja. 2) Not all lack of sleep is created equal. Feelings of sleepiness can be blocked even though it's still fatal. "The fact that you feel fine on four hours of sleep does not mean you actually are fine." (3/3)
ooooh, I am very interested in this! Pierre Magistretti is discussing the astrocyte-neuron lactate shuttle. I had a long conversation with someone who wrote a review paper on this one. (1/6) #fatigue#neurology
Lactate is required for energy for the brain. BUT -- it is not only this but also a signalling molecule for neuroplasticity & neuroprotection. (This idea of lactate being 'neuroprotective' is of particular interest to me.) (2/6) #fatigue#neurologypubmed.ncbi.nlm.nih.gov/21376239/
Magistretti is going at warp speed on this one, and I would have no idea what he was talking about if I hadn't already familiarized myself with the astrocyte-neuron lactate shuttle. However, he is clearly unfamiliar with #MECFS. (3/6) #fatigue#neurology
Now we're up to Ron Davis and the metabolic trap hypothesis for #MECFS: yeast model for the metabolic trap. (1/7) #metabolism#fatigue
Tryptophan is largely metabolized by a protein made by an enzyme called IDO-1. A second enzyme, called IDO-2, may be a "more primitive" version of the same enzyme. IDO-1 is substrate-inhibited. (2/7) #metabolism#MECFS
In a small study with ~20 severe patients, all had at least one mutation in IDO-2. "It's not a requirement that you have a mutation in IDO-2" to have ME/CFS, says Davis. It doesn't rule out that mutations here can play a role. (3/7) #metabolism#MECFS