Cinnamon Rolling Along
@cinnamonrollalong.bsky.social
#pwME #MECFS #pwLC #LongCovid #PoTS #Dysautonomia #MCAS #LongCovidKids
#CovidisNotOver #CovidisAirborne
#CovidisNotOver #CovidisAirborne
@cathnoakes.bsky.social please would it be possible to have an update on the Bradford schools trial? Was it published? You shared a summary, it looked promising. Last time I asked, way back in 2024, I was told it was still undergoing review, wouldn’t be published as a preprint and to keep waiting.
October 10, 2025 at 4:23 PM
@cathnoakes.bsky.social please would it be possible to have an update on the Bradford schools trial? Was it published? You shared a summary, it looked promising. Last time I asked, way back in 2024, I was told it was still undergoing review, wouldn’t be published as a preprint and to keep waiting.
Reposted by Cinnamon Rolling Along
@RobWust appreciation post:
tldr: post-exertional malaise (PEM) is NOT a choice.
In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/
tldr: post-exertional malaise (PEM) is NOT a choice.
In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/
February 12, 2025 at 2:22 PM
@RobWust appreciation post:
tldr: post-exertional malaise (PEM) is NOT a choice.
In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/
tldr: post-exertional malaise (PEM) is NOT a choice.
In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/
Reposted by Cinnamon Rolling Along
I need something to keep my hands busy & calm my mind but I have NO energy and a melted brain. Embroidery? Too complicated, weak hands. Puzzles? Paint-by-numbers? Can’t do either in bed. Crochet? Can’t count. Knitting? No arm strength. Oh and no fundage $
#myalgicecephalomyelitis
#myalgicecephalomyelitis
January 27, 2025 at 3:31 PM
I need something to keep my hands busy & calm my mind but I have NO energy and a melted brain. Embroidery? Too complicated, weak hands. Puzzles? Paint-by-numbers? Can’t do either in bed. Crochet? Can’t count. Knitting? No arm strength. Oh and no fundage $
#myalgicecephalomyelitis
#myalgicecephalomyelitis
Reposted by Cinnamon Rolling Along
Vitally important report from @crunchme.bsky.social on
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Very excited to say that @crunchme.bsky.social's first report is out and about 🙌
The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions
Our goal here is to bring together the key info needed to make the case for taking action *now*!
drive.google.com/file/d/17fgU...
The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions
Our goal here is to bring together the key info needed to make the case for taking action *now*!
drive.google.com/file/d/17fgU...
January 27, 2025 at 3:38 PM
Vitally important report from @crunchme.bsky.social on
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Addressing Infection Associated Chronic Conditions
"It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"
Reposted by Cinnamon Rolling Along
Still more deadly than flu or RSV
jamanetwork.com/journals/jam...
jamanetwork.com/journals/jam...
January 27, 2025 at 4:34 PM
Still more deadly than flu or RSV
jamanetwork.com/journals/jam...
jamanetwork.com/journals/jam...
Reposted by Cinnamon Rolling Along
So this is the new great idea🤔
I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community
Why does NHS England always underestimate the skills of GPs?
www.england.nhs.uk/long-read/re...
I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community
Why does NHS England always underestimate the skills of GPs?
www.england.nhs.uk/long-read/re...
January 6, 2025 at 7:50 PM
So this is the new great idea🤔
I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community
Why does NHS England always underestimate the skills of GPs?
www.england.nhs.uk/long-read/re...
I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community
Why does NHS England always underestimate the skills of GPs?
www.england.nhs.uk/long-read/re...
Reposted by Cinnamon Rolling Along
We're only now heading into what is normally the worst of Norovirus season here... and our rolling annual total of cases of Noro is already unprecedented.
Why?
Because...
Why?
Because...
January 9, 2025 at 12:07 PM
We're only now heading into what is normally the worst of Norovirus season here... and our rolling annual total of cases of Noro is already unprecedented.
Why?
Because...
Why?
Because...
Reposted by Cinnamon Rolling Along
Winter crisis - GPs are not to blame
By providing 20% more appts with 20% less funding than 2016
1/7 of population waiting for hospital treatments or investigations they are overwhelmed
GPs have 2300 patients up 500
Funding not matching demand & some GPs unemployed
@rthonwesstreeting.bsky.social
By providing 20% more appts with 20% less funding than 2016
1/7 of population waiting for hospital treatments or investigations they are overwhelmed
GPs have 2300 patients up 500
Funding not matching demand & some GPs unemployed
@rthonwesstreeting.bsky.social
January 7, 2025 at 10:00 PM
Winter crisis - GPs are not to blame
By providing 20% more appts with 20% less funding than 2016
1/7 of population waiting for hospital treatments or investigations they are overwhelmed
GPs have 2300 patients up 500
Funding not matching demand & some GPs unemployed
@rthonwesstreeting.bsky.social
By providing 20% more appts with 20% less funding than 2016
1/7 of population waiting for hospital treatments or investigations they are overwhelmed
GPs have 2300 patients up 500
Funding not matching demand & some GPs unemployed
@rthonwesstreeting.bsky.social
Reposted by Cinnamon Rolling Along
"New data from researchers in Denmark suggest that children who have a lot of common infections early in life have higher risk of moderate to severe infections and antibiotic use throughout childhood."
Study: jamanetwork.com/journals/jam...
Study: jamanetwork.com/journals/jam...
Early-life infection burden continues throughout childhood, new data reveal
www.cidrap.umn.edu
January 7, 2025 at 12:26 AM
"New data from researchers in Denmark suggest that children who have a lot of common infections early in life have higher risk of moderate to severe infections and antibiotic use throughout childhood."
Study: jamanetwork.com/journals/jam...
Study: jamanetwork.com/journals/jam...
Reposted by Cinnamon Rolling Along
Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
December 14, 2024 at 12:23 PM
Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
Reposted by Cinnamon Rolling Along
We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
www.thereforme.uk
January 7, 2025 at 9:25 AM
We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Reposted by Cinnamon Rolling Along
I'm uncomfortable sharing #ME related personal info but the level of disability #pwME experience always needs exposing.
Sometimes I type when I can't bring food to my mouth or put on another layer of clothing.
Typing uses fingers & eyes, eating & dressing require limbs & more energy.
#MEcfs
Sometimes I type when I can't bring food to my mouth or put on another layer of clothing.
Typing uses fingers & eyes, eating & dressing require limbs & more energy.
#MEcfs
January 7, 2025 at 2:45 PM
Reposted by Cinnamon Rolling Along
"Widespread use of metal caused estimated 2- to 3-point drop in IQ for nearly 180 years of Pax Romana"
Meanwhile, #Covid in 5 years:
"Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."
Meanwhile, #Covid in 5 years:
"Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."
January 7, 2025 at 5:29 AM
"Widespread use of metal caused estimated 2- to 3-point drop in IQ for nearly 180 years of Pax Romana"
Meanwhile, #Covid in 5 years:
"Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."
Meanwhile, #Covid in 5 years:
"Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."
Reposted by Cinnamon Rolling Along
BREAKING H5N1 UPDATE
CDC says… don’t worry… they’re not like you…they were gonna die anyway.
#PreeeexistingConditionsssss
CDC says… don’t worry… they’re not like you…they were gonna die anyway.
#PreeeexistingConditionsssss
January 7, 2025 at 3:38 PM
BREAKING H5N1 UPDATE
CDC says… don’t worry… they’re not like you…they were gonna die anyway.
#PreeeexistingConditionsssss
CDC says… don’t worry… they’re not like you…they were gonna die anyway.
#PreeeexistingConditionsssss
Reposted by Cinnamon Rolling Along
Hmmm.
There's something more than a little concerning about what's happening with Norovirus here.
A quick thread about Norovirus and its place within in the 'quad-demic'.
🧵
There's something more than a little concerning about what's happening with Norovirus here.
A quick thread about Norovirus and its place within in the 'quad-demic'.
🧵
December 14, 2024 at 5:34 PM
Hmmm.
There's something more than a little concerning about what's happening with Norovirus here.
A quick thread about Norovirus and its place within in the 'quad-demic'.
🧵
There's something more than a little concerning about what's happening with Norovirus here.
A quick thread about Norovirus and its place within in the 'quad-demic'.
🧵
Reposted by Cinnamon Rolling Along
While waiting in a ward to see someone in hospital this week, I carefully watched a doctor who went from patient to patient handling them and handling objects and not washing or sanitising their hands between patients...
*and coughing*
Not into their elbow... just into the air.
*and coughing*
Not into their elbow... just into the air.
December 14, 2024 at 7:07 PM
While waiting in a ward to see someone in hospital this week, I carefully watched a doctor who went from patient to patient handling them and handling objects and not washing or sanitising their hands between patients...
*and coughing*
Not into their elbow... just into the air.
*and coughing*
Not into their elbow... just into the air.
Reposted by Cinnamon Rolling Along
THIS IS HUGE! Researchers at TAU and the University of Lisbon have developed a groundbreaking nano-vaccine against COVID-19, delivered via nasal spray WITHOUT requiring cold storage. Preclincial studies show the vaccine was effective against ALL major SARS-CoV-2 variants. Let’s talk about that! 🧪🧵⬇️
December 9, 2024 at 5:00 PM
THIS IS HUGE! Researchers at TAU and the University of Lisbon have developed a groundbreaking nano-vaccine against COVID-19, delivered via nasal spray WITHOUT requiring cold storage. Preclincial studies show the vaccine was effective against ALL major SARS-CoV-2 variants. Let’s talk about that! 🧪🧵⬇️
Reposted by Cinnamon Rolling Along
✨Please share! COVID, H5N1 & more newsletter.
In this issue:
💀Spike protein in skull bone marrow yrs after infection
😴T cells exhausted in MECFS & probably LongCOVID
✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker?
⛪Notre Dame Paris reopens
& much more! buff.ly/4f2OMnW
#medsky #IDsky #Pedsky 🛟😷🧪
In this issue:
💀Spike protein in skull bone marrow yrs after infection
😴T cells exhausted in MECFS & probably LongCOVID
✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker?
⛪Notre Dame Paris reopens
& much more! buff.ly/4f2OMnW
#medsky #IDsky #Pedsky 🛟😷🧪
December 9, 2024 at 7:23 AM
✨Please share! COVID, H5N1 & more newsletter.
In this issue:
💀Spike protein in skull bone marrow yrs after infection
😴T cells exhausted in MECFS & probably LongCOVID
✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker?
⛪Notre Dame Paris reopens
& much more! buff.ly/4f2OMnW
#medsky #IDsky #Pedsky 🛟😷🧪
In this issue:
💀Spike protein in skull bone marrow yrs after infection
😴T cells exhausted in MECFS & probably LongCOVID
✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker?
⛪Notre Dame Paris reopens
& much more! buff.ly/4f2OMnW
#medsky #IDsky #Pedsky 🛟😷🧪
Reposted by Cinnamon Rolling Along
A "stocktake"? wtf does that mean? Also very telling that he uses the outdated term "CFS/ME".
And just who is in this "working group"?
They shouldn't need to determine *if* [whether] extra support is required. Archer has told them it *is* required and that something needs to be done about it.
And just who is in this "working group"?
They shouldn't need to determine *if* [whether] extra support is required. Archer has told them it *is* required and that something needs to be done about it.
December 7, 2024 at 12:32 PM
A "stocktake"? wtf does that mean? Also very telling that he uses the outdated term "CFS/ME".
And just who is in this "working group"?
They shouldn't need to determine *if* [whether] extra support is required. Archer has told them it *is* required and that something needs to be done about it.
And just who is in this "working group"?
They shouldn't need to determine *if* [whether] extra support is required. Archer has told them it *is* required and that something needs to be done about it.
Reposted by Cinnamon Rolling Along
Well thanks to this interview (see end of longer video), it's now clear who is doing this "stocktake" audit of ME services for NHS England.
(hint: rhymes with "f&ck me")
bsky.app/profile/abro...
(hint: rhymes with "f&ck me")
bsky.app/profile/abro...
SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.
youtu.be/FX6Fk9-WSmo?...
youtu.be/FX6Fk9-WSmo?...
SKY News Karen Gordon
YouTube video by Broken Battery
youtu.be
December 9, 2024 at 10:45 PM
Well thanks to this interview (see end of longer video), it's now clear who is doing this "stocktake" audit of ME services for NHS England.
(hint: rhymes with "f&ck me")
bsky.app/profile/abro...
(hint: rhymes with "f&ck me")
bsky.app/profile/abro...
Reposted by Cinnamon Rolling Along
SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.
youtu.be/FX6Fk9-WSmo?...
youtu.be/FX6Fk9-WSmo?...
SKY News Karen Gordon
YouTube video by Broken Battery
youtu.be
December 9, 2024 at 9:49 PM
SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.
youtu.be/FX6Fk9-WSmo?...
youtu.be/FX6Fk9-WSmo?...
Reposted by Cinnamon Rolling Along
Switzerland:
SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Google translation:
www-srf-ch.translate.goog/sendungen/ka...
#MEcfs #CFS #PwME #LongCovid #PASC #PwLC
SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Google translation:
www-srf-ch.translate.goog/sendungen/ka...
#MEcfs #CFS #PwME #LongCovid #PASC #PwLC
Long Covid und ME/CFS: Falsche Behandlungen in Reha-Kliniken
Reha-Aufenthalte sind für viele Menschen mit schwerem Long Covid und ME/CFS schädlich. Das zeigt eine aktuelle Umfrage.
www-srf-ch.translate.goog
December 8, 2024 at 5:28 PM
Switzerland:
SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Google translation:
www-srf-ch.translate.goog/sendungen/ka...
#MEcfs #CFS #PwME #LongCovid #PASC #PwLC
SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Google translation:
www-srf-ch.translate.goog/sendungen/ka...
#MEcfs #CFS #PwME #LongCovid #PASC #PwLC