Bea is Chronically Persisting✨
@Be_Kinderr
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Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
New England, US
Joined November 2016
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!🔥👇.
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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RT @Naomi_D_Harvey: “With a growing body of evidence that #POTS is an autoimmune disease and having elevations of the innate immune system,….
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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.
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“A 2009 study, conducted by the European Organisation for Rare Diseases, surveyed 414 families of EDS patients from five countries and found that the average delay to an #EDS diagnosis was four years for men – but 16 years for women.”
cnn.com
Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder. When Sarah Lazarus’ daughter was diagnosed with it, she discovered that the majority of cases are going undiagnosed for decades.
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RT @resiapretorius: Collagen is exposed during endothelial damage and 1st trigger for platelets to attach to damaged endothelium (or even s….
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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
Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the body’s connective tissue, resulting in a wide range of debilitating symptoms. Hear from five people who are living with...
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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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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).
@EricTopol @NatureCVR @CedarsSinai This article by @rashminhira & @jacquie__baker reports on excessive orthostatic tachycardia and initial orthostatic hypotension in a Canadian PASC/LongCOVID cohort @LibinInstitute @JuanGuzmanMD @DocPaulaHarvey @AASAutonomic @Dysautonomia @UKPoTS.
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RT @jeffgilchrist: Even #mild #COVID #infection increases risk of #blood #clots and #death. A study in the UK found that mild (non-hospital….
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RT @jenbrea: @ales_frost @danahaff I think if generalist neurologists were trained in body biomechanics, the mechanics (physics) of the ske….
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RT @Rivkatweets: “According to the National Disability Institute, disabled people pay an additional $17,690 each yr to maintain the same st….
abcnews.go.com
Long COVID patients, doctors and disability experts offer advice on how to best support patients with the debilitating condition.
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And the number of people with #LongCovid may be even higher: the CDC’s Pulse Survey found that 80% of LC patients are disabled.
“Of the nearly 24 million adults in the U.S. who currently have long COVID, more than 80% are having some trouble carrying out daily activities, according to CDC data.”
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“Of those with at least one incident disability, 22% were categorized with ALL THREE disabilities (hospitalized 38%, non-hospitalized 19%).” #LongCovid . The 3 disabilities referenced are .mobility, instrumental activities of daily living (ie housework tasks), and mental fatigue.
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“Of #LongCovid participants, 65% ‼️were classified as having at least one disability compared to 6% of those with resolved-COVID and 14% of those with no-COVID.”.
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“Of those with #LongCovid , 41% ‼️were classified as mobility disabled, compared to 2.7% of resolved-COVID and 4.5% of no-COVID.”. In Long Covid patients #pwLC : “The most reported new diagnosis was tachycardia, followed by #POTS, #MECFS, and IBS”.
Incredible new study sheds light on high numbers of severely disabling conditions caused by #LongCovid . The most common new diagnoses caused by #LongCovid were tachycardia, followed by #POTS #MEcfs and IBS
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RT @Naomi_D_Harvey: This chart shows the proportion of #LongCovid affected by various diagnoses according to 4 types of disability degree.….
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“SARS-CoV-2 is widely distributed, predominantly among patients who died w severe COVID-19. virus replication is present in multiple respiratory & non-respiratory tissues, inc the brain, early in infection. SARS-CoV-2 can cause systemic infection & persist in the body for months”.
This MAJOR autopsy paper is finally out in Nature. Covid-19 persisted in every of the 44 analyzed autopsies. It was found in 79 of 85 anatomical regions. Major relevance for the brain: 91% - and even at day 230. => Systemic persistent infection.
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RT @Be_Kinderr: Previous research on fibro: “some patients who carry the diagnosis of #fibromyalgia have both signs & symptoms consistent w….
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RT @Be_Kinderr: “As a consequence of cervical & thoracic instability, & discopathy in EDS, there is loss of the normal cervical lordosis an….
onlinelibrary.wiley.com
The Ehlers–Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders characterized by joint hypermobility, skin extensibility, and tissue fragility. This communicati...
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Great thread on PEM and research on #MECFS 👇.
Thread 🧵 on PEM in #MEcfs: . Yesterday, I managed a 6min walk outside. The path is slightly sloped & a few months ago I couldn’t go even a few metres up it without feeling like I was climbing a mountain with extreme shortness of breath, dizziness, palpitations & tachycardia.
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