#Scotland
Link to contact MSP's at Holyrood here: longcovidkids.eaction.org.uk/awarenessday...
@helen-goss.bsky.social @longcovidscot.bsky.social
@longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social
#LongCovidAwareness
Anna's powerful #artwork made us all weep when we first saw it.
I support @helen-goss.bsky.social request to the Scottish Health Sec. Children too sick to attend #education are loosing their childhood behind closed doors, the devastating situation must be seen - CYP need support now.
#Childhood
Thx @helen-goss.bsky.social
for sharing this very vulnerable & utterly exhausting reality of being a caregiver while battling your own health issues & the incompetence of the healthcare system (and others):
helenmmgoss.substack.com/p/long-covid...
@coopspeak.bsky.social @theresisters.bsky.social
@georgemonbiot.bsky.social definitely worth a read. Quite the scandal North of the wall 🏴🙏🏼
Outstanding piece on Long Covid in the UK. Since we know vaccination reduces the risk of developing Long Covid, the UK government really should be massively widening access to vaccines.
www.telegraph.co.uk/global-healt...
Sigh.
www.reddit.com/r/UKParentin...
#covid19 #longcovid #longcovidkids #winter #illness #cleantheair
this was the beginning of my slides on how and why we provide off label therapies to the most severe patients with #longcovid
before providing my filled one, would love to know
- what you do
- what you would like to do
- as patients, what would you like to receive
"Prof @putrinolab.bsky.social , Mount Sinai, believes that there are at least 10 different plausible explanations for why people develop #PEM, ranging from sleep disruption to hormonal impairments & inflammation of the lining of blood vessels"
www.bbc.com/future/artic...
#LongCovid #LongCovidKids
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
1/
A really excellent article on post viral fatigue, though I see 2 errors:
1. There is no uncertainty that SARS-CoV-2 causes mircoclots.
2. "pacing" is defined as = graded exercise therapy. Its not, & confusing them is harmful.
#ME #CFS #MECFS #IACC #LongCovid #LongLyme
www.bbc.com/future/artic...
Best thing about Scottish winter is seeing the gritter map back in action!
traffic.gov.scot/gritter-tracker
No one can be annoyed at being stuck behind "You're a Blizzard, Harry" or "Spready Mercury" 😂
Gritter names: google.com/amp/s/www.huff…
#scotland #winter #snow #uksnow
The EM images of microclots from @resiapretorius.bsky.social group are something else.
Working in the Long Covid/ME space in the UK is a lonely place.
As I reflect in taxi home on the last 48 hrs, I don’t regret a single moment. I genuinely believe that the group of people I was with yesterday can change the world for kids with these illnesses. There’s power in global collaboration.
Light dusting of snow. First of the season 🌨️❄️☃️
#Aberdeenshire #snow #winter
This was not on my Christmas list.
#H5N1
First Bluesky Post!! 🤩
Couldn’t resist a photo with the #longcovid research hero’s at @buonsenso.bsky.social ‘s international meeting on Long COVID in Rome 🇮🇹
Excited to engage in discussions on #research and #collaboration
So proud of @sammiemc.bsky.social flying the LCK flag 🥹 Well done and thank you for the monumental effort 👏🏼🎉👏🏼
#LongCovidKids #LongCovid
Turns out BlueSky can only handle 60sec videos and I can't spend the day splitting vids in halves and thirds...
Sadly, Twitter wins on this occasion.
To see the Full thread with full videos on the UK Covid Inquiry #LongCovid #longCovidKids testimony by Caroline Lamb: x.com/LCKScotland/...
Cont...
3. The centrally-funded provision of #LongCovid services in Scotland was left to the discretion of health boards for the first 18 months therefore there was variation in access and quality.
Was this the best approach?
Cont...
2. July 2021 the Scottish Government instructed NSS to conduct a mapping exercise to discover how health boards were supporting people with #LongCovid
Q: Why did it take so long?
A: It followed the creation of the guidance.
👉 The guidance was 19 pages. Only 250 words was #LongCovidKids
A catch up thread on the UK Covid Inquiry as relates to #LongCovid & #LongCovidKids in Scotland.
Yesterday, Caroline Lamb, NHS Scotland and Director General of Health and Social Care gave testimony.
Thread...
1. Scottish Government funding £2.5m for Long Covid (no paed research)
“The evidence suggests the more times you get Covid, the higher the chance there is of you getting long Covid.” @drclairetaylor.bsky.social
The number of adults in the UK with #longCovid was estimated to be around 2 million in 2022.
But in 2024, there was a rise of 300,000, with long Covid.
So difficult for you. She's very busy, sadly. As the Scottish government's response to long Covid has been so poor, Dr T has an enormous case load and so successful at what she does, everyone wants to see her.
Suggest engaging your MSP and local healthboard to push for improved NHS services?
I can personally confirm Dr Taylor is amazing! Wish we could clone her or put her in charge of NHS ME/LC/PoTS care.
If you have become invalid, validate yourself 🎉
If only life was that simple 😅
#invalidhandle
Dr Taylor estimates she has seen around 2000 people and is now receiving around 300 messages a week looking for care.
www.thecourier.co.uk/fp/lifestyle...
Meet the Perthshire GP long Covid sufferers turn to when no one else can help…
@drclairetaylor.bsky.social
#longcovid #longcovidkids
Pretty sure you book online but she's full until about February, I think. Speaks volumes of the Scottish Government response to long Covid when the one person treating patients is overwhelmed with them 😔
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