danielle @spiral_guide

chronic illness resources, esp for #MEspine, #hEDS, #MCAS. Joined June 2020

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💖💄 Aoife #ForTinu ♿💜 @Aoiferocksitout

4 years ago

Fantastic tool by @spiral_guide! An HPI template you can use to make one and bring it to appointments with new doctors! This is the same thing @GilmerHealthLaw did and recommended for everyone! #DisabilityTwitter #Disability #ChronicIllnes #ChronicPain

danielle @spiral_guide

4 years ago

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Jennifer Brea🦒 @jenbrea

4 years ago

This is really interesting. @spiral_guide talks about how her training as a medical scribe improved her quality of care. “The notes from my appointment began to accurately reflect my experience, I received better treatment, and my diagnoses became more accurate and complete.”

danielle @spiral_guide

4 years ago

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danielle @spiral_guide

4 years ago

mutual aid alert! can’t wait for this. for hypermobile folks and the spectrum of dx that goes w it, including #MEspine. Somatics class & peer support. Sliding scale. Much needed nurturing for our community ♥️

Hyp+Access @hyp_access

4 years ago

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danielle @spiral_guide

4 years ago

already in unimaginable pain, @julierehmeyer is having to battle @BCBSIL for an air ambulance that she so obviously needs. @BCBSIL do your job, provide coverage. … @DrDRobinson @SenatorLujan @MartinHeinrich @TeresaForNM @senatorwirth @ARomero_NM

Julie Rehmeyer @julierehmeyer

4 years ago

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Julie Rehmeyer @julierehmeyer

5 years ago

There are lots of ME recovery stories, even though recovery is rare for ppl w/ ME for more than a few years. Often, people who recover are... really annoying. I've remitted 2x, and I've tried to talk about it v carefully. I'd like to suggest some guidelines for recovery stories.

Paul Garner @PaulGarnerWoof

5 years ago

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danielle @spiral_guide

5 years ago

epistemic humility was the difference between providers who changed my life in profound ways & providers who made me fight for my life. it took a long time and a lot of pain to compose my care team of HCP’s who are rooted in epistemic humility. pubmed.ncbi.nlm.nih.gov/28005251/

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danielle @spiral_guide

5 years ago

for those who live at the intersections of these illnesses—and/or support their peers who do—it’s so, painfully clear that these (&other) conditions are connected in varying degrees. I can’t wait for science to validate in full what our lived-experience has already let us in on.

Bonnie Mitchell @BonnieM9194

5 years ago

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danielle @spiral_guide

5 years ago

this thread by @microbeminded2 & @polybioRF is a prime example of why it is invaluable to collaborate research bw disease communities. looks like the intersections have a lot to tell us.

Amy Proal, PhD @microbeminded2

5 years ago

this thread by @microbeminded2 & @polybioRF is a prime example of why it is invaluable to collaborate research bw disease communities. looks like the intersections have a lot to tell us.