Bea is Chronically Persisting✨

Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻‍♀️Scientist/Advocate [email protected]

[Bea is Chronically Persisting✨ @Be_Kinderr]

Thread🧵with research and info on Connective Tissue Diseases & #EDS. 81% of ppl w #MECFS are hypermobile + 80% have craniocervical obstructions; 33% of ppl w #MCAS have #hEDS; & there’s growing evidence of connective tissue damage in #LongCovid. We need more research on CTDs!🔥👇

[Bea is Chronically Persisting✨ @Be_Kinderr]

Some previous threads 👇on #EDS #EhlersDanlosSyndrome research. We need more innovative research like this funded bc hEDS, HSD, and connective tissue illnesses are not rare. The majority of #pwME meet diagnostic criteria for hypermobility (one study says 80%, one study says 50%)

[Bea is Chronically Persisting✨ @Be_Kinderr]

@Sabrina_Poirier @Carrie_McGinn @SethGetz @JefferySmithME @Rivkatweets @minadjenkins @AshantiRN @AnilvanderZee @thane_black @ProulxLaurie @TO_dpr @suerobinsyvr @microbeminded2 @VirusesImmunity @jenbrea @ahandvanish @chiluvs1 ❤️❤️💞

[Bea is Chronically Persisting✨ @Be_Kinderr]

@WesElyMD @clarejdaly 2)Some #MECFS doctors prescribe metformin bc it may increase mitochondrial activity. “metformin treatment..which increased AMPK activation, RESTORED ALL BIOCHEMICAL ALTERATIONS examined by us in blood cells & significantly improved clinical symptoms”(in FM)https://t.co/DAMSRhOtKS

[Bea is Chronically Persisting✨ @Be_Kinderr]

@WesElyMD @clarejdaly 1) Metformin has been studied In #fibromyalgia , and patients experienced “experienced a dramatic decrease in the pain scores…“these findings suggest a pathogenetic relationship between FM and insulin resistance”
https://t.co/LBhJ89WrZP

study link: https://t.co/OB1uoBo8e8

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

“With a growing body of evidence that #POTS is an autoimmune disease and having elevations of the innate immune system, our results suggest a potential T-cell-mediated autoimmunity in POTS characteristic of a mixed-pattern inflammatory disease similar to rheumatoid arthritis”

[Bea is Chronically Persisting✨ @Be_Kinderr]

@DisabledStem 💜

[Bea is Chronically Persisting✨ @Be_Kinderr]

@lucyshea @CNN 🎄✨🕎✨💛

[Bea is Chronically Persisting✨ @Be_Kinderr]

@SabeehaMalek @sarah_skywriter @CNN Celebrating you, @BluesteinLinda , @CortDoesScience and everyone featured in this article. @sarah_skywriter It’s great! Thank you!

[Bea is Chronically Persisting✨ @Be_Kinderr]

The @statnews article on #EDS patient-scientists https://t.co/FvU25s4w9I

[Bea is Chronically Persisting✨ @Be_Kinderr]

Thrilled that #EDS is getting a spotlight in @CNN and @statnews, and that they are highlighting the important and innovative work of scientists in our community, like the incredible @SabeehaMalek and @CortDoesScience ! https://t.co/tg0PKQAdkT

[Bea is Chronically Persisting✨ @Be_Kinderr]

Thank you to @CNN for covering how #EDS overlaps with #POTS & #MCAS ! 👏

In another future article, please also write about the emergence of connective tissue disorders in infection-associated illnesses like #LongCovid

[Bea is Chronically Persisting✨ @Be_Kinderr]

@SabeehaMalek @sarah_skywriter @CNN you’re a rockstar 🤩👏!

[Resia Pretorius @resiapretorius]

Collagen is exposed during endothelial damage and 1st trigger for platelets to attach to damaged endothelium (or even simply when you cut yourself).Next,fibrinogen, the clotting protein forms a gel in the area of damage.Wind back to LongCOVID=exposed collagen=microclots will form

[Bea is Chronically Persisting✨ @Be_Kinderr]

I’ve got to say, when you feel really *really* low and crushed, kindness goes a long way. You might not know who is silently giving it their all to stay above the surface🏊🏻‍♀️. This week has been very hard 😓, and a reminder to me of how kindness means the 🌎

[Bea is Chronically Persisting✨ @Be_Kinderr]

@LonnieRhea @Lyme_X @Lymenews This is a terrific list and thread Lonnie! Thanks for sharing and compiling it!

[Bea is Chronically Persisting✨ @Be_Kinderr]

@Bridget_OShea have you had your morning and afternoon cortisol tested, or tested multiple times throughout the day?

[Bea is Chronically Persisting✨ @Be_Kinderr]

This autonomic study found that 73%❗️of #LongCovid patients have #POTS or at least 1 cardiovascular autonomic abnormality. Hospitalized vs. non-hospitalized patients had similar frequencies of abnormalities. (Note: ME/CFS also has a very high prevalence of autonomic dysfunction)

[Satish R Raj @satish_r_raj]

@EricTopol @NatureCVR @CedarsSinai This article by @rashminhira & @jacquie__baker reports on excessive orthostatic tachycardia and initial orthostatic hypotension in a Canadian PASC/LongCOVID cohort https://t.co/YarfKjds5U @LibinInstitute @JuanGuzmanMD @DocPaulaHarvey @AASAutonomic @Dysautonomia @UKPoTS

[Bea is Chronically Persisting✨ @Be_Kinderr]

@lindagdetroit @laura1987hc Structural issues including jaw alignment have been associated with autonomic dysfunction. I wrote a tweet thread touching on that, and the videos I link to are fascinating

[Bea is Chronically Persisting✨ @Be_Kinderr]

Question about #TMJ & #CCI/ #EDS : There is connective tissue in the TMJ too. Several TMJ experts believe that the TMJ & cervical spine act as a connected SYSTEM - *a tripod* - and when one is misaligned, the other is often off too. #CCI & TMJ are often seen together 1/

[Bea is Chronically Persisting✨ @Be_Kinderr]

@kimisgubbed Really interesting, especially given that Sjogren’s is comorbid with ME/CFS & co, and ~20% of #pwME deaths are from heart failure :(

[Hannah Davis @ahandvanish]

Case study on angina/chest pain exacerbating ME/CFS: https://t.co/mfDZu81s0b

“ME/CFS is associated with endothelial dysfunction; the heart can be damaged via ischemia from endothelial damage.”

Mentions that 20% of ME/CFS deaths are from heart failure - I didn’t know! #LongCovid

[Bea is Chronically Persisting✨ @Be_Kinderr]

@ShaniDhanda Can you share the reference where I can read more about the accessible housing & work stat? Thank you - it’s a really important topic (also personal to me / my family) that deserves a lot more attention!