~Somehow~
somehowso.bsky.social
~Somehow~
@somehowso.bsky.social
Disability justice. Chronic illness.
Tags: EDS, HSD, MCAS, POTS, ME, ND, Migraine, Encephalitis, Short Bowel Syndrome, Endometriosis, Autoimmunity
Reposted by ~Somehow~
New from Germany:
Observational Study of Repeat Immunoadsorption (RIA) in #PostCOVID ME/CFS Patients with Elevated ß2-Adrenergic Receptor Autoantibodies—An Interim Report

Free full text:
www.mdpi.com/2077-0383/12...

#LongCovid #PwLC #postcovid #postcovid19 #LC #MEcfs #CFS #PwME
October 15, 2023 at 1:23 PM
Reposted by ~Somehow~
If you have long Covid, or basically any chronic illness, you should take a moment to read this very informative, balanced, thoughtful thread on MCAS.
I don't currently have a Mast Cell Activation Syndrome (MCAS) 101 thread on bluesky, so here goes:
October 11, 2023 at 3:54 PM
Surgery Prep: Meeting Your EDS Hospital Stay Needs
How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS):

buff.ly/3KSfOCV

#EDS #Hypermobility #HSD #NEISvoid #MedEd #FOAMed #MedTwitter #Medicine #Doctors #Surgeons
October 11, 2023 at 10:30 AM
Reposted by ~Somehow~
Open Access review: Effects of COVID-19 on cognition and brain health.
#PsychSciSky
www.sciencedirect.com/science/arti...
Effects of COVID-19 on cognition and brain health
COVID-19 is associated with a range of neurological, cognitive, and mental health symptoms both acutely and chronically that can persist for many mont…
www.sciencedirect.com
October 10, 2023 at 8:39 PM
I cannot warn enough about this. Ppl's lives have become a nightmare, both for patients and families, incl ours, due to too little knowledge in the healthcare system - and thus incorrect treatment.
Autoimmune conditions after viruses can affect the brain!
www.antinmdafoundation.org/the-illness/...
[:en]What is Anti-NMDA Receptor Encephalitis? (In English, French, Spanish & Italian)[:fr]Qu’est-c...
[:en]Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain.[:fr]L’encéphalite à anticorps antirécept...
www.antinmdafoundation.org
October 11, 2023 at 2:01 AM
Reposted by ~Somehow~
I've sent out about 2600 codes for B l u e S k y to members of the chronic illness and disability communities. Because requests have slowed and I have lots of donated codes, I've shut down donations for now. Please spread the word that codes are available. forms.gle/A1LD3zTsZBjC...
October 10, 2023 at 12:27 AM
Reposted by ~Somehow~
This is an outstanding article on the need to believe patients with narcolepsy. One could write a very similar article on ME/CFS. www-ilpost-it.translate.goog/2023/09/28/n... Original in Italian, link to an English translation.
October 7, 2023 at 7:06 PM
"The research demonstrates that diffusion-weighted MRI can noninvasively and differentially detect the activation of microglia and astrocytes, two types of brain cells that are at the basis of neuroinflammation and its progression."

medicalxpress.com/news/2022-05...
Magnetic resonance imaging shows brain inflammation in vivo for the first time
Research by Dr. Silvia de Santis and Dr. Santiago Canals, both from the Institute of Neurosciences UMH-CSIC (Alicante, Spain), has made it possible to visualize for the first time and in great detail ...
medicalxpress.com
October 8, 2023 at 12:33 AM
– Oppfølginga av pårørande er svært mangelfull. Det kan eg med handa på hjartet seia, både av erfaringar og eigne studium, seier Svendsbø, som også har teke doktorgrad på feltet.

www.nrk.no/vestland/beg...
Begge foreldra hennar fekk demens – Over 400.000 er nære pårørande
– Etter at pappa døydde, sa mamma: «No skal eg sitja i stolen i to år». Ho var så sliten, seier forskar Ellen Johanne Svendsbø. No vil ho kartleggja stressnivået til dei pårørande.
www.nrk.no
October 8, 2023 at 12:18 AM
Reposted by ~Somehow~
Now we're talking!
A trivalent nasal vaccine vs mumps, measles and Covid, broadly effective vs SARS-CoV-2 variants, with expected long duration (using preS-6P), in multiple experimental models pnas.org/doi/10.1073/...
October 5, 2023 at 9:49 PM
Reposted by ~Somehow~
Our paper has been published in Mayo Clinic Proceedings! This is a Concise Clinical Review, meaning it MUST be short, with a limited number of pages and citations. Drs. Grach, Ganesh, and Chon and I worked very hard to pare it down to the essentials. www.mayoclinicproceedings.org/article/S002...
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...
www.mayoclinicproceedings.org
October 3, 2023 at 11:07 PM
På sykehuset i vår by er det en barnelege som etter hvert oppdaget at det var en felles ting blant barna de fikk inn, de som hadde store, uforståelige mageproblemer og behøvde innleggelse.
Alle var hypermobile.

Etter hvert testet han raskt nye barn for #eds #hsd Foreldrene fikk svar, barna hjelp
October 6, 2023 at 9:19 PM
And this is how I got my account here!
Great idea. And thank you so much!
I created this form to help distribute codes so the chronic illness community can congregate on Blue Sky. Please fill it out if you have codes to donate, and spread the link far and wide. forms.gle/LGVPYz8i3U8e... Let's protect our community from platform collapse!
October 2, 2023 at 3:33 AM
Reposted by ~Somehow~
Oh wow! Check out this informative and helpful post to get oriented here! I’m learning from it. And give Cate a follow.
Going to try to make a loose thread of advice for new joiners skewed to people with energy limiting #ChronicIllness #pwME #LongCovid #NEISvoid.
October 1, 2023 at 11:18 PM