~Somehow~
@somehowso.bsky.social
Disability justice. Chronic illness.
Tags: EDS, HSD, MCAS, POTS, ME, ND, Migraine, Encephalitis, Short Bowel Syndrome, Endometriosis, Autoimmunity
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
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
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
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
Same here. Horizontal ridges after every surgery or other hospital stay. After every negative change in health. Also after antibiothics.
Some months later, they're grown out and fine again
Some months later, they're grown out and fine again
October 13, 2023 at 3:49 PM
Same here. Horizontal ridges after every surgery or other hospital stay. After every negative change in health. Also after antibiothics.
Some months later, they're grown out and fine again
Some months later, they're grown out and fine again
Very sorry to heare that. This must be so hard for you.
Most ppl/we are not told how post-viral conditions can effect us, whether it is from covid or other viruses. I really hope for some change and more knowledge, better medicine. At least there are more studies now.
May you benefite from those🧡
Most ppl/we are not told how post-viral conditions can effect us, whether it is from covid or other viruses. I really hope for some change and more knowledge, better medicine. At least there are more studies now.
May you benefite from those🧡
October 13, 2023 at 3:24 PM
Very sorry to heare that. This must be so hard for you.
Most ppl/we are not told how post-viral conditions can effect us, whether it is from covid or other viruses. I really hope for some change and more knowledge, better medicine. At least there are more studies now.
May you benefite from those🧡
Most ppl/we are not told how post-viral conditions can effect us, whether it is from covid or other viruses. I really hope for some change and more knowledge, better medicine. At least there are more studies now.
May you benefite from those🧡
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
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.
Agree about the consequences of Covid-19. Other viruses are also known to be able to trigger reactive or autoimmune conditions, inflammation. Also encephalitis, one of the biggest problems for us.
" Most forms of arthritis result from an inappropriate autoimmune attack by our own immune system."
" Most forms of arthritis result from an inappropriate autoimmune attack by our own immune system."
October 11, 2023 at 11:23 AM
Agree about the consequences of Covid-19. Other viruses are also known to be able to trigger reactive or autoimmune conditions, inflammation. Also encephalitis, one of the biggest problems for us.
" Most forms of arthritis result from an inappropriate autoimmune attack by our own immune system."
" Most forms of arthritis result from an inappropriate autoimmune attack by our own immune system."
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
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
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
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
Reposted by ~Somehow~
Open Access review: Effects of COVID-19 on cognition and brain health.
#PsychSciSky
www.sciencedirect.com/science/arti...
#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
Open Access review: Effects of COVID-19 on cognition and brain health.
#PsychSciSky
www.sciencedirect.com/science/arti...
#PsychSciSky
www.sciencedirect.com/science/arti...
So sorry to hear that. I developed arthritis post-viral in 1985. Encephalitis as well. I would not whish that for anyone to get. Still 2 of my children got it (pre-covid, post-viral). And that's the worst. When it happens to our children.
I feel your pain, and may your days be better 🌸
I feel your pain, and may your days be better 🌸
October 11, 2023 at 4:00 AM
So sorry to hear that. I developed arthritis post-viral in 1985. Encephalitis as well. I would not whish that for anyone to get. Still 2 of my children got it (pre-covid, post-viral). And that's the worst. When it happens to our children.
I feel your pain, and may your days be better 🌸
I feel your pain, and may your days be better 🌸
Would really appreciate if someone out there, with medical experience or not, could offer some advice here.
Regarding constantly worsening physical sequelae (e.g. parkinsonism).
But also in terms of wrong treatment in the other one, because there were also psychological symptoms present there.
Regarding constantly worsening physical sequelae (e.g. parkinsonism).
But also in terms of wrong treatment in the other one, because there were also psychological symptoms present there.
October 11, 2023 at 2:53 AM
Would really appreciate if someone out there, with medical experience or not, could offer some advice here.
Regarding constantly worsening physical sequelae (e.g. parkinsonism).
But also in terms of wrong treatment in the other one, because there were also psychological symptoms present there.
Regarding constantly worsening physical sequelae (e.g. parkinsonism).
But also in terms of wrong treatment in the other one, because there were also psychological symptoms present there.
I have so much I want and need to say about this, but I have to take it a little at a time.
One of my children got their dx & treatment 1 year too late, and has serious physical sequelae.
Another is still getting wrong treatment and it breaks my heart.
Autoimmune reactions run in families.
One of my children got their dx & treatment 1 year too late, and has serious physical sequelae.
Another is still getting wrong treatment and it breaks my heart.
Autoimmune reactions run in families.
October 11, 2023 at 2:32 AM
I have so much I want and need to say about this, but I have to take it a little at a time.
One of my children got their dx & treatment 1 year too late, and has serious physical sequelae.
Another is still getting wrong treatment and it breaks my heart.
Autoimmune reactions run in families.
One of my children got their dx & treatment 1 year too late, and has serious physical sequelae.
Another is still getting wrong treatment and it breaks my heart.
Autoimmune reactions run in families.
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/...
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
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/...
Autoimmune conditions after viruses can affect the brain!
www.antinmdafoundation.org/the-illness/...
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
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...
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
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.
"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...
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
"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...
medicalxpress.com/news/2022-05...
– 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...
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
– 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...
www.nrk.no/vestland/beg...
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/...
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
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/...
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/...
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
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...
Dette var barn som hadde gått i alt for lang tid med store mageproblemer og utfordringer. Og foreldrene hadde fortvilet lett etter hjelp. Mange blir ikke trodd eller tatt på alvor. Eller får beskjed om å prøve tiltak som ikke hjelper.
Psykisk helse er viktig.
Hvis det er fysisk, må det adresseres!
Psykisk helse er viktig.
Hvis det er fysisk, må det adresseres!
October 6, 2023 at 9:30 PM
Dette var barn som hadde gått i alt for lang tid med store mageproblemer og utfordringer. Og foreldrene hadde fortvilet lett etter hjelp. Mange blir ikke trodd eller tatt på alvor. Eller får beskjed om å prøve tiltak som ikke hjelper.
Psykisk helse er viktig.
Hvis det er fysisk, må det adresseres!
Psykisk helse er viktig.
Hvis det er fysisk, må det adresseres!
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
Alle var hypermobile.
Etter hvert testet han raskt nye barn for #eds #hsd Foreldrene fikk svar, barna hjelp
Fascinating findings from an Israeli study uncover the connection between hEDS and IBS in teenagers. Learn more about this important research in the link below.
ehlersdanlosnews.com/news/hypermo...
ehlersdanlosnews.com/news/hypermo...
Hypermobile EDS linked to irritable bowel syndrome in teens: Study...
Adolescents with hypermobile joints, like those in hEDS, are more than twice as likely to have irritable bowel syndrome, a study suggests.
ehlersdanlosnews.com
October 6, 2023 at 9:19 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
Alle var hypermobile.
Etter hvert testet han raskt nye barn for #eds #hsd Foreldrene fikk svar, barna hjelp
And this is how I got my account here!
Great idea. And thank you so much!
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
And this is how I got my account here!
Great idea. And thank you so much!
Great idea. And thank you so much!
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
Oh wow! Check out this informative and helpful post to get oriented here! I’m learning from it. And give Cate a follow.