#Tag
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
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
🚨 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That domain expired so those groups are no longer valid.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That domain expired so those groups are no longer valid.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! 😁
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
“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
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 
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