Bea is Chronically Persisting✨

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Bea is Chronically Persisting✨

Bea is Chronically Persisting✨

@Be_Kinderr

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

New England, US Katılım Kasım 2016
2.5K Takip Edilen9.7K Takipçiler
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Bea is Chronically Persisting✨
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%)

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Seth Getz
Seth Getz@SethGetz·
Dear people of twitter: who is the kindest person you know on twitter? I want to follow them. No other qualifiers apply. Just the kindest person you know.
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WesElyMD
WesElyMD@WesElyMD·
1/🧵Can a Diabetes drug prevent Long COVID?   Most solid data yet of a medication preventing #LongCOVID from quadruple blinded, non-pharma sponsored COVID-OUT trial N=1,125. A 42% relative ⬇️ in clinician diagnosed LC was seen (10.6% down to 6.3%).   bit.ly/3jvvKj4
WesElyMD tweet media
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Bea is Chronically Persisting✨ retweetledi
Naomi Harvey “PhD Witch” #WearAMask
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”
Rene Sugar@renesugar

Platelet Storage Pool Deficiency and Elevated Inflammatory Biomarkers Are Prevalent in Postural Orthostatic Tachycardia Syndrome #POTS #LongCovid #MECFS mdpi.com/2073-4409/11/5…

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DisabledInSTEM
DisabledInSTEM@DisabledStem·
Thank you all for showing me so much love 💜
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Lucy (The Sundance Kid) 🤍✨
Lucy (The Sundance Kid) 🤍✨@lucyshea·
The best gift I could’ve received on Christmas Eve was getting a notification from @CNN about this article. Happy Holidays to all my fellow zebras! 🦓💜🎄✨
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 ! cnn.com/videos/health/…

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Resia Pretorius
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
Hannah Davis@ahandvanish

A new paper looking at blood clotting in #LongCovid finds collagen involvement, including blood clots forming on collagen? jthjournal.org/article/S1538-… Someone more knowledge may interpret better? @ales_frost @resiapretorius @Be_Kinderr

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Bea is Chronically Persisting✨
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 🌎
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Bridget O'Shea
Bridget O'Shea@Bridget_OShea·
Does anyone have any theories as to why #MECFS is so much worse in the mornings/daytime? I'm desperate to make better use of my days but I never have energy until it's late and dark outside and the world around me is winding down. It's so depressing.
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Bea is Chronically Persisting✨
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 onlinecjc.ca/article/S0828-… @LibinInstitute @JuanGuzmanMD @DocPaulaHarvey @AASAutonomic @Dysautonomia @UKPoTS

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Bea is Chronically Persisting✨
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/

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lindagdetroit
lindagdetroit@lindagdetroit·
@Be_Kinderr @laura1987hc Have not read. Something interesting - I had an episode of pure sympathetic overdrive from a known, mechanical trigger - a dental appliance. Happened early April 2009, was in pure overdrive for 5 months until Sept 2009. During that time, everything was spasmed/tight/restricted
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Laura 🌈
Laura 🌈@laura1987hc·
Interesting to hear the possible link between hypermobility and #longcovid. I have no diagnosis of any hypermobility disorder but my elbows can do this (great for reaching round corners!). My knees are similar. If anyone knows any papers to link to read I would be grateful #MECFS
Laura 🌈 tweet media
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Bea is Chronically Persisting✨
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: ncbi.nlm.nih.gov/pmc/articles/P… “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

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Bea is Chronically Persisting✨
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!
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Dr Shani Dhanda
Dr Shani Dhanda@ShaniDhanda·
A disabled person is 4 times more likely to be in work if their accessible housing needs are met. At the current rate of building in England, a wheelchair user joining the list today could wait up to 47 years for a new home that meets their needs. habinteg.org.uk/latest-news/wh…
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