@gallusa.bsky.social
Reposted
Over the last 12 mths we have seen an increase in requests from #caregivers & #education professionals.
We have a small team working hard to add content each week, keep checking in to see what's new.
www.longcovidkids.org/educational-...
#CharityWebsite #Volunteers #WebsiteDesign #LongCovidKids
We have a small team working hard to add content each week, keep checking in to see what's new.
www.longcovidkids.org/educational-...
#CharityWebsite #Volunteers #WebsiteDesign #LongCovidKids
November 28, 2025 at 7:12 AM
Over the last 12 mths we have seen an increase in requests from #caregivers & #education professionals.
We have a small team working hard to add content each week, keep checking in to see what's new.
www.longcovidkids.org/educational-...
#CharityWebsite #Volunteers #WebsiteDesign #LongCovidKids
We have a small team working hard to add content each week, keep checking in to see what's new.
www.longcovidkids.org/educational-...
#CharityWebsite #Volunteers #WebsiteDesign #LongCovidKids
Reposted
Very much like medicine's early resistance to the germ theory of disease, because germs couldn't be observed directly at the time.
This isn't about the same mistakes, it's about the same fallacious reasoning that leads to repeating the same mistakes over and over again.
This isn't about the same mistakes, it's about the same fallacious reasoning that leads to repeating the same mistakes over and over again.
Irish Farmers Journal: "My life has been shattered by long COVID"
'Part of the reason is because long COVID is “a very hidden disease,” he explains. “Because people get this debilitating fatigue and brain fog..."
www.farmersjournal.ie/life/health/...
'Part of the reason is because long COVID is “a very hidden disease,” he explains. “Because people get this debilitating fatigue and brain fog..."
www.farmersjournal.ie/life/health/...
‘My life has been shattered by long COVID’
There are more than 200 symptoms related to long COVID, which have a substantial impact on the daily lives of those living with it.
www.farmersjournal.ie
November 28, 2025 at 4:59 PM
Very much like medicine's early resistance to the germ theory of disease, because germs couldn't be observed directly at the time.
This isn't about the same mistakes, it's about the same fallacious reasoning that leads to repeating the same mistakes over and over again.
This isn't about the same mistakes, it's about the same fallacious reasoning that leads to repeating the same mistakes over and over again.
Reposted
"Our hope is that our research will lead to effective diagnoses and clinical trials in the future." @cgatist.bsky.social talks about his research into Myalgic Encephalomyelitis (ME) which affects 400k people in the UK. Watch here 👉 edin.ac/4p7CFvO
@cmvm-edinburghuni.bsky.social
@cmvm-edinburghuni.bsky.social
November 28, 2025 at 3:39 PM
"Our hope is that our research will lead to effective diagnoses and clinical trials in the future." @cgatist.bsky.social talks about his research into Myalgic Encephalomyelitis (ME) which affects 400k people in the UK. Watch here 👉 edin.ac/4p7CFvO
@cmvm-edinburghuni.bsky.social
@cmvm-edinburghuni.bsky.social
Reposted
‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission www.nature.com/articles/d41...
‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission
Engineered T cells that have been used to treat ulcerative colitis, rheumatoid arthritis and lupus show promising results.
www.nature.com
November 27, 2025 at 12:03 PM
‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission www.nature.com/articles/d41...
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Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
International Long COVID conference spotlights biomarker and mechanism research - The Sick Times
The event, now in its third year, also revealed updates about clinical trials and healthcare for the disease.
thesicktimes.org
November 25, 2025 at 6:04 PM
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
Reposted
as her advocates.
As a reg SW, I have emailed to share PFD report, NHS Devon clinical guidance, and newly published NHS e-Learning module 3: a lot to digest for any busy hospital.
As yet no invitation to join Zoom or MSTeams meeting.
#pwME, please post support to Savannah. She is afraid for her life
As a reg SW, I have emailed to share PFD report, NHS Devon clinical guidance, and newly published NHS e-Learning module 3: a lot to digest for any busy hospital.
As yet no invitation to join Zoom or MSTeams meeting.
#pwME, please post support to Savannah. She is afraid for her life
September 8, 2025 at 6:12 PM
as her advocates.
As a reg SW, I have emailed to share PFD report, NHS Devon clinical guidance, and newly published NHS e-Learning module 3: a lot to digest for any busy hospital.
As yet no invitation to join Zoom or MSTeams meeting.
#pwME, please post support to Savannah. She is afraid for her life
As a reg SW, I have emailed to share PFD report, NHS Devon clinical guidance, and newly published NHS e-Learning module 3: a lot to digest for any busy hospital.
As yet no invitation to join Zoom or MSTeams meeting.
#pwME, please post support to Savannah. She is afraid for her life
Reposted
The risk of Trump’s attacks on mail-in ballots is less that he will succeed in muzzling the franchise and more that the president will—as he did in 2020—kick up enough doubt that many Americans no longer trust election results, @qjurecic.bsky.social writes:
Trump Has No (Legal) Power to Mess With the Election
But that won’t stop him from finding ways to make chaos.
bit.ly
August 22, 2025 at 4:15 PM
The risk of Trump’s attacks on mail-in ballots is less that he will succeed in muzzling the franchise and more that the president will—as he did in 2020—kick up enough doubt that many Americans no longer trust election results, @qjurecic.bsky.social writes:
Reposted
Clip from The Guardian’s Science Weekly podcast: MIT researcher Beth Pollack explains #MECFS — severe fatigue not relieved by rest, with post-exertional malaise as the hallmark. She says up to 61% are bedbound some days and severe #MECFS has been compared to late-stage AIDS.
August 22, 2025 at 7:13 AM
Reposted
Clip from The Guardian’s Science Weekly podcast: @nickyproctor.bsky.social describes how doctors dismissed her #MECFS as psychological, before she crashed completely and became mostly bedbound, unable even to hold a conversation.
August 21, 2025 at 10:33 AM
Clip from The Guardian’s Science Weekly podcast: @nickyproctor.bsky.social describes how doctors dismissed her #MECFS as psychological, before she crashed completely and became mostly bedbound, unable even to hold a conversation.
Reposted
YouTube is using AI to tweak videos on its platform—without creators' knowledge. Alex Reisner reports on the concerning experiment:
YouTube’s Sneaky AI ‘Experiment’
The video platform is quietly using AI to “improve clarity” in uploaded content. Why?
bit.ly
August 22, 2025 at 7:56 PM
YouTube is using AI to tweak videos on its platform—without creators' knowledge. Alex Reisner reports on the concerning experiment:
Reposted
This is absolutely about racism.
White women everywhere this is a call for you to stand up to white men now. We have been too silent for too long with too much fear. We are powerful. We have a voice.
Time to use it.
White women everywhere this is a call for you to stand up to white men now. We have been too silent for too long with too much fear. We are powerful. We have a voice.
Time to use it.
August 21, 2025 at 3:18 PM
This is absolutely about racism.
White women everywhere this is a call for you to stand up to white men now. We have been too silent for too long with too much fear. We are powerful. We have a voice.
Time to use it.
White women everywhere this is a call for you to stand up to white men now. We have been too silent for too long with too much fear. We are powerful. We have a voice.
Time to use it.
Reposted
We did suspect, but this is beyond the pale. Apparently when large, US- centered datasets were inaccessible, their content was altered. 🧪
www.psypost.org/secret-chang...
www.psypost.org/secret-chang...
www.psypost.org
July 16, 2025 at 6:05 PM
We did suspect, but this is beyond the pale. Apparently when large, US- centered datasets were inaccessible, their content was altered. 🧪
www.psypost.org/secret-chang...
www.psypost.org/secret-chang...
Reposted
We know that living with ME can be hard, especially when you’re young. The lack of understanding of the condition can make you feel isolated and frustrated.
We’re here to help 🧡
Our free Young People’s Counselling Service is available for children aged 11-18 with suspected or diagnosed ME.
We’re here to help 🧡
Our free Young People’s Counselling Service is available for children aged 11-18 with suspected or diagnosed ME.
July 14, 2025 at 9:01 AM
We know that living with ME can be hard, especially when you’re young. The lack of understanding of the condition can make you feel isolated and frustrated.
We’re here to help 🧡
Our free Young People’s Counselling Service is available for children aged 11-18 with suspected or diagnosed ME.
We’re here to help 🧡
Our free Young People’s Counselling Service is available for children aged 11-18 with suspected or diagnosed ME.
Reposted
Reposted
I’m on @todayinfocus.bsky.social podcast talking about my new book, Who Wants Normal?, the “million inequalities” still facing disabled people in the U.K. and why Labour’s cuts mean a positive narrative around disability is more important than ever.
Listen here: www.theguardian.com/p/x2t9a6?CMP...
Listen here: www.theguardian.com/p/x2t9a6?CMP...
“It’ll push disabled people into poverty”: Labour’s controversial welfare bill – podcast
Guardian columnist Frances Ryan on the reality of being disabled in the UK and the impact of the government’s proposed cuts
www.theguardian.com
June 27, 2025 at 8:28 AM
I’m on @todayinfocus.bsky.social podcast talking about my new book, Who Wants Normal?, the “million inequalities” still facing disabled people in the U.K. and why Labour’s cuts mean a positive narrative around disability is more important than ever.
Listen here: www.theguardian.com/p/x2t9a6?CMP...
Listen here: www.theguardian.com/p/x2t9a6?CMP...
Reposted
fwiw and I know it’s not much I am a Jew who lives in New York City and while I am neither afraid of Zohran Mamdani nor his views on Israel and Palestine, I’m actually scared as hell about the horrific wave of racism, Islamophobia, and xenophobia that has been unleashed since his primary win
June 26, 2025 at 10:06 PM
fwiw and I know it’s not much I am a Jew who lives in New York City and while I am neither afraid of Zohran Mamdani nor his views on Israel and Palestine, I’m actually scared as hell about the horrific wave of racism, Islamophobia, and xenophobia that has been unleashed since his primary win
Reposted
Let’s be absolutely clear. This decision, based on fringe conspiracy theories, will kill children.
www.washingtonpost.com/health/2025/...
www.washingtonpost.com/health/2025/...
RFK Jr. says U.S. will stop funding global vaccine alliance Gavi
Gavi works to expand access to vaccines for children in some of the world’s poorest countries. Health experts say the move could have deadly consequences.
www.washingtonpost.com
June 27, 2025 at 12:27 AM
Let’s be absolutely clear. This decision, based on fringe conspiracy theories, will kill children.
www.washingtonpost.com/health/2025/...
www.washingtonpost.com/health/2025/...
Reposted
Louder for the people in the back: "It has been a public health failure that the public does not realize how much organ damage #COVID infection can cause to things that aren’t your lungs (or throat or nose or taste buds)."
The image below is based on data collected from 80,071 kids and teens:
The image below is based on data collected from 80,071 kids and teens:
June 14, 2025 at 3:46 AM
Louder for the people in the back: "It has been a public health failure that the public does not realize how much organ damage #COVID infection can cause to things that aren’t your lungs (or throat or nose or taste buds)."
The image below is based on data collected from 80,071 kids and teens:
The image below is based on data collected from 80,071 kids and teens:
Reposted
I urge everyone to read Unbreaking’s new page on everything the govt is doing to destroy & diminish medical research funding.
It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job.
unbreaking.org/issues/medic...
It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job.
unbreaking.org/issues/medic...
Medical Research Funding — Unbreaking
How the administration is breaking the government, and what that means for all of us.
unbreaking.org
May 30, 2025 at 9:38 PM
I urge everyone to read Unbreaking’s new page on everything the govt is doing to destroy & diminish medical research funding.
It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job.
unbreaking.org/issues/medic...
It’s the best thing I’ve read on this topic: @lizneeley.bsky.social & co have such done an incredible job.
unbreaking.org/issues/medic...
Reposted
The zine is free to download and print on our website btw :) thesicktimes.org/2024/12/02/s...
May 31, 2025 at 5:30 PM
The zine is free to download and print on our website btw :) thesicktimes.org/2024/12/02/s...
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One highlight from this week's news - the Science for ME forum has published its first factsheet, Introduction to ME/CFS:
www.s4me.info/threads/scie...
PDF version:
s4me.info/docs/WhatIsM...
#MEcfs #MyalgicEncephalomyelitis #PwME
www.s4me.info/threads/scie...
PDF version:
s4me.info/docs/WhatIsM...
#MEcfs #MyalgicEncephalomyelitis #PwME
Science for ME Fact Sheets
The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in...
www.s4me.info
March 30, 2025 at 8:57 PM
One highlight from this week's news - the Science for ME forum has published its first factsheet, Introduction to ME/CFS:
www.s4me.info/threads/scie...
PDF version:
s4me.info/docs/WhatIsM...
#MEcfs #MyalgicEncephalomyelitis #PwME
www.s4me.info/threads/scie...
PDF version:
s4me.info/docs/WhatIsM...
#MEcfs #MyalgicEncephalomyelitis #PwME
Reposted
The Science for ME forum has published a fact sheet on PEM, post-exertional malaise.
This fact sheet may be copied and used freely by individuals and organizations.
Forum version:
www.s4me.info/threads/scie...
PDF version:
www.s4me.info/docs/PEM_Fac...
#MEcfs #PwME
This fact sheet may be copied and used freely by individuals and organizations.
Forum version:
www.s4me.info/threads/scie...
PDF version:
www.s4me.info/docs/PEM_Fac...
#MEcfs #PwME
Science for ME Fact Sheets
The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in...
www.s4me.info
May 13, 2025 at 8:41 PM
The Science for ME forum has published a fact sheet on PEM, post-exertional malaise.
This fact sheet may be copied and used freely by individuals and organizations.
Forum version:
www.s4me.info/threads/scie...
PDF version:
www.s4me.info/docs/PEM_Fac...
#MEcfs #PwME
This fact sheet may be copied and used freely by individuals and organizations.
Forum version:
www.s4me.info/threads/scie...
PDF version:
www.s4me.info/docs/PEM_Fac...
#MEcfs #PwME
Reposted
Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of May 5 - 11.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
News in Brief - May 2025
This thread has a Science for ME 'News in Brief' post for each week in May 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
www.s4me.info
May 11, 2025 at 11:32 PM
Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of May 5 - 11.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Reposted
Excited to be here in Stavanger, Norway, to speak at @meforeningen.bsky.social conference on ME/CFS and Long Covid
Fascinating programme planned, lots of interesting presenters
#MECFS #LongCovid #pwME
Fascinating programme planned, lots of interesting presenters
#MECFS #LongCovid #pwME
May 7, 2025 at 6:38 AM
Excited to be here in Stavanger, Norway, to speak at @meforeningen.bsky.social conference on ME/CFS and Long Covid
Fascinating programme planned, lots of interesting presenters
#MECFS #LongCovid #pwME
Fascinating programme planned, lots of interesting presenters
#MECFS #LongCovid #pwME
Reposted
Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfs
NIHR Open Research Article: Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank.
Read the latest article version by Gemma L. Samms, Chris P. Ponting, at NIHR Open Research.
openresearch.nihr.ac.uk
April 28, 2025 at 9:52 AM
Want to use UK Biobank data to study ME/CFS? Can't decide which of the 5,354 UKB participants with evidence of ME/CFS to choose as cases? In this preprint, we consider what case/control definitions to apply. openresearch.nihr.ac.uk/articles/5-3... #pwME #mecfs