phildini
boosted
hypebot
boosted
I know a young person experiencing and learning to adapt to life with POTS
They are exploring mobility aids, but have very limited resources, so I’m looking for advice on rollators vs wheelchair for function, utility, flexibility, comfort, and because cost. In general they experience symptoms on the milder side of things; vertical and functional through most school days and activities, doing well for several weeks at a stretch then experiencing periods where worsening symptoms prevent them from keeping up. Activities out of the house include high school, drama, choir, public transit (including a walking ‘last mile’ at times) and craft/maker fairs. Location Edmonton, so winter climate a consideration.
Advice and comments from experience and boosts/tags welcome, I know there are many of you out there.
I know a young person experiencing and learning to adapt to life with POTS
They are exploring mobility aids, but have very limited resources, so I’m looking for advice on rollators vs wheelchair for function, utility, flexibility, comfort, and because cost. In general they experience symptoms on the milder side of things; vertical and functional through most school days and activities, doing well for several weeks at a stretch then experiencing periods where worsening symptoms prevent them from keeping up. Activities out of the house include high school, drama, choir, public transit (including a walking ‘last mile’ at times) and craft/maker fairs. Location Edmonton, so winter climate a consideration.
Advice and comments from experience and boosts/tags welcome, I know there are many of you out there.
BTW, it apparently took a long time for Porzingis to get this diagnosis, but a POTS-literate doctor could have diagnosed him in 10 minutes with a blood pressure cuff, a stopwatch, and a wall. It's called the NASA lean test and it is woefully underutilized.
Russ Sharek
boosted
From ME Research UK:
Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. https://tinyurl.com/3f5sxbza
From ME Research UK:
Throughout October, we will mark #DysautonomiaAwarenessMonth. #Dysautonomia refers to conditions affecting the autonomic nervous system, such as #PoTS and vasovagal syncope. Dysautonomia can impact quality of life. People with #MECFS often report symptoms. https://tinyurl.com/3f5sxbza
phildini
boosted
Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2025.1560120/full
"most #POTS patients have a platelet delta granule storage pool deficiency"
Image is screenshot from latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @pots
Postural orthostatic tachycardia syndrome in post-COVID-19 long-hauler patients is associated with platelet storage pool deficiency
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2025.1560120/full
"most #POTS patients have a platelet delta granule storage pool deficiency"
Image is screenshot from latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @pots
Shauna GM
boosted
🚨 Reminder about groups on the gup.pe server
That domain expired so those groups are no longer valid. But you can follow groups on fedigroups.social
Here are 3 illness related groups that I follow (remove the slashes)
/@mecfs@fedigroups.social
/@longcovid@fedigroups.social
/@pots@fedigroups.social
The follower count is low compared to before so I thought folks might not have learned about issues with gup.pe groups
Boosts welcome! 😁
🚨 Reminder about groups on the gup.pe server
That domain expired so those groups are no longer valid. But you can follow groups on fedigroups.social
Here are 3 illness related groups that I follow (remove the slashes)
/@mecfs@fedigroups.social
/@longcovid@fedigroups.social
/@pots@fedigroups.social
The follower count is low compared to before so I thought folks might not have learned about issues with gup.pe groups
Boosts welcome! 😁
phildini
boosted
Two new boosting groups are now available to replace the now-defunct Guppe groups!
@mecfs - for ME/CFS, or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
@pots - for POTS, or Postural (Orthostatic) Tachycardia Syndrome
How it works:
If you tag one of these accounts in a post, the account will boost your post to its followers. Follow the account(s) to have boosted posts appear in your feed.
Please boost this to spread the word! 💚
@tomkindlon
#pwME#MECFS #myalgicencephalomyelitis #chronicfatiguesyndrome#POTS #PosturalOrthostaticTachycardiaSyndrome#PosturalTachycardiaSyndrome#pwLC #LongCovid
Two new boosting groups are now available to replace the now-defunct Guppe groups!
@mecfs - for ME/CFS, or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
@pots - for POTS, or Postural (Orthostatic) Tachycardia Syndrome
How it works:
If you tag one of these accounts in a post, the account will boost your post to its followers. Follow the account(s) to have boosted posts appear in your feed.
Please boost this to spread the word! 💚
@tomkindlon
#pwME#MECFS #myalgicencephalomyelitis #chronicfatiguesyndrome#POTS #PosturalOrthostaticTachycardiaSyndrome#PosturalTachycardiaSyndrome#pwLC #LongCovid
joene 🏴🍉
boosted
“Terrorist pots and pans banned from Gaza protest”
by Skwawkbox @skwawkbox @palestine @israel
@UKLabour
“Proscription of kitchen implements soon to follow?”
https://skwawkbox.org/2025/08/23/terrorist-pots-and-pans-banned-from-gaza-protest/
#Press #Israel#Genocide#Gaza#Protest#Proscription#Pots#Pans#MetPolice#Labour#Starmer#Dictatorship#PalAction
“Terrorist pots and pans banned from Gaza protest”
by Skwawkbox @skwawkbox @palestine @israel
@UKLabour
“Proscription of kitchen implements soon to follow?”
https://skwawkbox.org/2025/08/23/terrorist-pots-and-pans-banned-from-gaza-protest/
#Press #Israel#Genocide#Gaza#Protest#Proscription#Pots#Pans#MetPolice#Labour#Starmer#Dictatorship#PalAction
Jess Mahler
boosted
Hopeful question for the #MECFS community:
In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?
I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.
ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).
It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.
#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome
Hopeful question for the #MECFS community:
In what ways can perimenopause (and menopause and beyond) impact pre-existing ME/CFS?
I’m looking for any info at all: your personal experiences, links to helpful websites or forums, or scientific studies. I’m open to anything.
ME-related websites seem to only have rather generic info about perimenopause/menopause. And I’ve only found scientific studies looking into how peri and gynae issues can mean someone is more likely to get ME/CFS for the first time at peri / meno age (which is not my question).
It’s getting easier to look up perimenopause info, thank goodness, but I want to know how it could impact pre-existing ME/CFS. For example, I’m wondering if it could be responsible for triggering the significant decline in my baseline and the fact I very much have all the criteria of POTS now. However, these things could also be due to a previous burnout or over exertion in recent years, too, not peri. I’m wanting to build a picture of what’s possible to try to understand my current and future experiences and help guide my future decisions.
#pwME @mecfs#POTS #myalgicencephalomyelitis #chronicfatiguesyndrome
Ich lese vermehrt, dass Vulnerable/bereits Erkrankte sich nicht trauen, in der Öffentlichkeit Maske zu tragen, weil sie Angst vor Anfeindung und Übergriffen haben.
Deshalb mein Aufruf an alle: Tragt Maske! Aktuell gibt es für #MEcfs, #MCAS, #POTS, #SFN, #CCI usw keine Heilung! Es gibt Remissionen, aber viele, viele bleiben krank! Auch mit #LongCovid! Ihr wollt den Scheiß nicht haben! Und ihr schützt euch damit nicht nur selbst, sondern solidarisiert euch mit anderen.
♥️
Mon nouveau traitement à l'essai pour le POTS (midodrine) :
- N'a pas d'effets secondaires relous, en tout cas pour l'instant
- Apporte peut-être un pouillème d'amélioration ? Je prends
- Augmente ma réponse ASMR big time : je KIFFE 
Loving my new compression socks - they help with my #longCovid induced #POTS - so wanted to give a shout out to Hannah from Not Your Grandma's for creating such wonderful garments
(she's also struggling to keep the shop afloat so hoping to support a small UK business)
