Jade Barclay 😷🌈♿️MPH MBA

Digital Health. Health Data Equity. Informatics, DataSciComm. Pain hEDS+Multimorbidity. WiDS DisabledInSTEM RStats [email protected]

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Why do we need kindness & trauma informed care?

We all deserve to feel safe in our own bodies, in our own homes, in the care of those we turn to at our most vulnerable.

But often -- especially with chronic pain/illness -- clinicians need to help *restore* safety, not assume it.

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

For the love of scientists and slant rhymes

https://t.co/u9rGovOjLF

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Meeting more and more folks who are exploring decoloniality in their workplaces, habits, food, communities. Deep, fascinating, juicy conversations, & the reading list keeps growing!

"Curious how you were inspired to explore the topic, and your first few steps in that direction"

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

THIS. All of this https://t.co/iRNRklvXqo

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

PSA: Download & backup Kindle Books asap (this week). Amazon's "Download & Transfer via USB" option will cease from 26 Feb. Start now, because each book must be downloaded one by one.

(Next, back up your library to .epub or .pdf, or install KOReader to liberate ye olde Kindle)

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

https://t.co/n8N690YFZ3

#EDS #POTS #MECFS #LongCovid

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Excited this paper is finally out!

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Why do folks with hypermobile connective tissue have higher rates of neurological and spinal and fluid-related conditions? (like tethered cord, CSF leaks, CCI/AAI, intracranial hypertension)

We wrote a thing to connect these dots:
https://t.co/z4AgENnibz

#hEDS #NEISvoid #POTS

[Frontiers - Neurology @FrontNeurol]

New Research: Neuraxial biomechanics, fluid dynamics, and myodural regulation: rethinking management of hypermobility and CNS disorders https://t.co/0JCbjXDglt #FrontiersIn #Neurology

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

What's the neuraxis? And why does it matter?

Image from new paper published this week in Frontiers Neurology and Connective Tissue. https://t.co/z4AgENnibz

Proud collab with lived experience authors & sci-illustrators!

#hypermobility #neuraxis #neurology #EDS #POTS #NEISvoid

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Why do folks with hypermobile connective tissue have higher rates of neurological and spinal and fluid-related conditions? (like tethered cord, CSF leaks, CCI/AAI, intracranial hypertension)

We wrote a thing to connect these dots:
https://t.co/z4AgENnibz

#hEDS #NEISvoid #POTS

[🕸️Dr.T, PhD @chydorina]

One of the topics I have been covering lately - Fascia - seems rather far removed from #MECFS #LongCovid.

This will probably come as a bit of a shock to you but "mast cell" is mentioned 49 times in the article (including the references). This article was also edited by one of our favorite neuro-specialists @RuhoyMD.

Its worth reading or skimming if you can manage it.

Fascia is not just 'stuff' that wraps around muscles. It interpenetrates at every level from the cell to tissue to organs and acts like a information processing system.

Fascia is also no where near 'inert' -- it is an active biological tissue system that does stuff.

Interestingly fascia plays a role in MCAS. This is because mast cells are IN fascia and wherever one has mast cells one can have mast cells spewing out triggers (degranulating).

Fascia are also of major importance in how being bedridden and immobilized effects us - and when dysfunctional act more like glue and can keep maintain muscle-structural problems.

Search "fascia (from:chydorina)" for all my X posts on Fascia.

Fascia as a regulatory system in health and disease (2024)
https://t.co/H81M2bsyt8

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

it's been a while, forgot to tag. Is anyone from NEISVoid even still here?

#NEISvoid #EDS #MCAS #POTS #LongCovid #MECFS #fascia #MedTwitter #womeninSTEM #DisabledInSTEM

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

We wrote a thing, connecting dots that connect funky health issues:
- why not fully numb at the dentist
- how excerise makes pain worse
- why NSAIDs make more inflammation than they remove

5 concise pages, spoon-friendly clarity in research. Yay team!
https://t.co/nR3uGr30ns

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

@Walrathis Thank you!

[Prof Marc Tennant AM @MarcTennant]

Maybe I am too picky on words.

BUT a patient does not just need to "feel" safe they need to "be" safe...

https://t.co/J1fYTMlr6e

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

We wrote a thing, connecting dots that connect funky health issues:
- why not fully numb at the dentist
- how excerise makes pain worse
- why NSAIDs make more inflammation than they remove

5 concise pages, spoon-friendly clarity in research. Yay team!
https://t.co/nR3uGr30ns

[Batshit Australia @batshit_auspol]

If there is not a state funeral we are lost as a country

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

"Neurology and Connective Tissue" special issue from Frontiers in Neurology. Such great research, asking and answering some big questions. So honoured to be part of it. Lots of patient-scientists too, connecting the dots! #EDS #MedTwitter #neisvoid

https://t.co/nR3uGr2sxU

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Actual footage of academics/researchers using Word and SharePoint and EndNote #phdlife

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

"Writing across difference is very different from writing about difference"

Brilliant insights from Neil Young's presentation #WritingAcrossDifference

@TheOpEdProject always brings such clarity, courage, and community voices. So grateful!

[Jake @JLBornstein]

Universities are funny. Hey what if we took a medieval institution for training priests and aristocrats and combined it w a hedge fund, sports franchise and resort for teenagers

Oh and it'll be the backbone for fundamental research for our entire civilization

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

Brilliant example of having more nuanced understandings about each other -- the whole person, the bigger picture, all the stories
https://t.co/VYUSAvLMJa