Thread by @exceedhergrasp1

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

Out of 2.1K, we met or are close to our goals for all of our target diseases: #LongCOVID, #MECFS and ME, #hEDS and hypermobility disorders, #POTS, #MCAS. Please don't consider this means that we're done! Some will lose interest as we progress: that's the nature of things. (4/8)

We definitely would appreciate the grace & time of more BIPOC folks: well aware that access to the diagnoses is overwhelmingly white (& wealthy). For that reason, I am especially hoping our BIPOC #NEISvoid folks are able to take the time. Representation is vital. (5/8) #SC4D

Researchers should do our best to fight for representation, sharing the symptom stories of all, not some. That was my impetus to reach out to Leticia Vaca at Urban Health Inc., which led to a partnership & tomorrow's talk.(6/8) #SC4D #NEISvoid
eventbrite.com/e/double-edged…

We are also seeing some really, *really* interesting crossovers in diagnoses that seem a lot more common in chronic complex diseases but that aren't our targeted diagnoses. But obviously let's share the specifics down the road. (7/8) #SC4D #MECFS #LongCOVID #MCAS #POTS #hEDS

Thanks again for your time and energy on this! Let's press onward together!
If you haven't seen the survey before, you can check it out here: meaction.net/epi
If you have sensory sensitivities and don't need any more info, sign up here: meaction.net/epi/quiet (8/8)