Clip: @oonagh_cousins explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
Why do I keep speaking out about Covid?
Why do I think clean indoor air is imperative for schools?
Let me tell you a story.
I was 46 when I first caught Covid.
It changed my life and turned our family's world upside down.
🧵
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Today's guest blog is from @rozzybarrett, who writes about her sister Alice's experiences.
Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.
Called @LBC (again 😂) Genuinely felt Natasha Devon was listening.
I wanted to challenge the false narratives from @GOVUK about the huge inc. in long term sickness.
The fact is, ppl are sick! Because you told them to get sick! And now you are blaming them?
https://t.co/ctYXpVMWpX
October = Dysautonomia awareness month.
POTS is one of the most common forms of Dysautonomia.
It’s your nervous system failing on all fronts to regulate the basics. Heart rate, BP, temperature, blood flow, digestion and more.
It’s not just “anxiety”. It’s survival.
I think that many don’t understand what fatigue is. Fatigue is severe exhaustion without refreshing sleep, weak muscles, headaches, difficulty concentrating, brain fog, and feeling like your body is so heavy that you’re being weighed down. It’s not just tiredness.
Everyday during October we will be sharing a fact about #PoTS!
Join us this month by sharing our daily #PoTSFact to help educate about this condition💜https://t.co/sdUwT94VhM
Support us by changing your X banner here: https://t.co/N7UU5EEZkX
#PoTSFacts#PoTSAwarenessMonth #DysautonomiaAwarenessMonth #LivingWithPoTS
ITV News reports on the rise in POTS since COVID. A consultant admitted that before the pandemic he “had no idea” about the condition, highlighting how little autonomic dysfunction is taught in medical school.
⚠️ POOR PROXIES FOR LEARNING! Just because students are busy, engaged, or writing lots, doesn’t mean they’re learning. Learning happens when students have to think hard! This guide explores poor proxies for learning highlighted by @ProfCoe and what to do instead.
🌱 Support my work by tapping REPOST and grab a FREE high-quality copy here:
https://t.co/0VQOopu6Wl
Metro UK: “The long Covid legacy: ‘People don’t want to think about us”
‘Alex Sprackland caught Covid-19 in March 2020, he thought he’d be back to normal in no time…five years on, the 34-year-old still grapples with the severe, life-limiting effects..’
https://t.co/n9vkEf1hqe
Chronic illness has made me angry in ways I never expected.
Not just at big losses like my dreams but mostly it’s the small endless reminders that get to me.
The projects around the house I can’t finish.
Having to sit down in the shower.
Heart racing from carrying groceries inside.
The food I used to love but now makes me sick.
How stairs feel like running a marathon.
Seeing doctors every month but getting no where.
Everything feels like I reminder of what I can no longer do. It makes you feel helpless because nothing can be done.
Same limits over and over.
Same symptoms over and over.
It’s not always tears for me, it’s mostly anger. Every single day.
All thanks to an illness that never lets me forget it’s there.
P is for Postural Orthostatic Tachycardia Syndrome (POTS).
For a more detailed look at POTS in people with ME/CFS and Long Covid, download our free leaflet here: https://t.co/VgPcji3Gdq
#pwME#MECFS#MyalgicEncephalomyelitis#POTS
This made me cry.
I don't recall a news presenter pronouncing the full name of the disease and if they used ME it always came with "also known as chronic fatigue syndrome".
Even on Chris Pointing’s demographics paper a few weeks ago the BBC used CFS despite the papers name.
ME, or Myalgic encephalomyelitis, is linked to your genetics, an early study by Decode ME has suggested.
They’ve found eight areas of genetic code in people with ME are ‘significantly different’ to the DNA of people without the disease.
The results still need to be reviewed, but the University of Edinburgh research team hope these results will pave the way for future research and the development of drugs.
The Guardian: 'Scientists find link between genes and ME/chronic fatigue syndrome'
'Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness'
#DecodeME
https://t.co/GcUWZTwvGJ