Sarah Swan
@sarah-swan.bsky.social
Reposted by Sarah Swan
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Reposted by Sarah Swan
⚡ Important thread by fearless community champion George Monbiot!
Highlighting the very real consequences of Simon Wessely's campaign to deny vulnerable people care.
Neurodiverse people are now in the firing line 😕
👀 One to read
Highlighting the very real consequences of Simon Wessely's campaign to deny vulnerable people care.
Neurodiverse people are now in the firing line 😕
👀 One to read
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 12:44 PM
⚡ Important thread by fearless community champion George Monbiot!
Highlighting the very real consequences of Simon Wessely's campaign to deny vulnerable people care.
Neurodiverse people are now in the firing line 😕
👀 One to read
Highlighting the very real consequences of Simon Wessely's campaign to deny vulnerable people care.
Neurodiverse people are now in the firing line 😕
👀 One to read
Reposted by Sarah Swan
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
www.benefitsandwork.co.uk
October 8, 2025 at 6:09 AM
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
Reposted by Sarah Swan
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
Reposted by Sarah Swan
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 7:11 AM
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
Reposted by Sarah Swan
27/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this image.
Day 27 #MyalgicE #MyalgicEncephalomyelitis
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this image.
Day 27 #MyalgicE #MyalgicEncephalomyelitis
May 27, 2025 at 12:40 PM
27/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this image.
Day 27 #MyalgicE #MyalgicEncephalomyelitis
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by sharing and/or liking this image.
Day 27 #MyalgicE #MyalgicEncephalomyelitis
Reposted by Sarah Swan
Scotland: MSP tables Motion to mark International ME Awareness Day at Holyrood
Liz Smith, LibDem list MSP for Mid Scotland and Fife, has tabled a Motion (reference: S6M-17226) to mark International ME Awareness Day at Holyrood.
Please consider contacting your MSP:
meassociation.org.uk/hhqk
Liz Smith, LibDem list MSP for Mid Scotland and Fife, has tabled a Motion (reference: S6M-17226) to mark International ME Awareness Day at Holyrood.
Please consider contacting your MSP:
meassociation.org.uk/hhqk
MSP tables Motion to mark International ME Awareness Day at Holyrood - The ME Association
Liz Smith, LibDem list MSP for Mid Scotland and Fife, […]
meassociation.org.uk
April 30, 2025 at 3:00 PM
Scotland: MSP tables Motion to mark International ME Awareness Day at Holyrood
Liz Smith, LibDem list MSP for Mid Scotland and Fife, has tabled a Motion (reference: S6M-17226) to mark International ME Awareness Day at Holyrood.
Please consider contacting your MSP:
meassociation.org.uk/hhqk
Liz Smith, LibDem list MSP for Mid Scotland and Fife, has tabled a Motion (reference: S6M-17226) to mark International ME Awareness Day at Holyrood.
Please consider contacting your MSP:
meassociation.org.uk/hhqk
Reposted by Sarah Swan
A large research program at Columbia that was focused on ME/CFS has been forced to close due to Trump funding cuts.
ME/CFS is already underfunded, misinformed and rife with stigma.
Patients with this condition desperately need more dedicated research, not less
www.statnews.com/2025/03/19/m...
ME/CFS is already underfunded, misinformed and rife with stigma.
Patients with this condition desperately need more dedicated research, not less
www.statnews.com/2025/03/19/m...
ME/CFS research program shuts down at Columbia after Trump cuts
ME/CFS, which affects millions of Americans, has few dedicated research centers. Now the one at Columbia has been shut down over Trump funding cuts.
www.statnews.com
March 19, 2025 at 8:24 PM
A large research program at Columbia that was focused on ME/CFS has been forced to close due to Trump funding cuts.
ME/CFS is already underfunded, misinformed and rife with stigma.
Patients with this condition desperately need more dedicated research, not less
www.statnews.com/2025/03/19/m...
ME/CFS is already underfunded, misinformed and rife with stigma.
Patients with this condition desperately need more dedicated research, not less
www.statnews.com/2025/03/19/m...
Reposted by Sarah Swan
Please sign and share to help our future generation, so many need help and support.
#longcovidkids ⬇️
#longcovidkids ⬇️
Thank you @BinitaKane.bsky.social and @emmabatha.bsky.social. The government needs to acknowledge and address this.
you.38degrees.org.uk/petitions/in...
you.38degrees.org.uk/petitions/in...
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 15, 2025 at 8:12 PM
Please sign and share to help our future generation, so many need help and support.
#longcovidkids ⬇️
#longcovidkids ⬇️
Reposted by Sarah Swan
Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME.
He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.
www.thereforme.uk/p/stuck-at-t...
He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.
www.thereforme.uk/p/stuck-at-t...
Stuck at the bottom of a well
Me, very severe ME and the NHS
www.thereforme.uk
March 4, 2025 at 9:36 AM
Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME.
He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.
www.thereforme.uk/p/stuck-at-t...
He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.
www.thereforme.uk/p/stuck-at-t...
Reposted by Sarah Swan
The Rest is Politics podcast posted a questions request earlier today and I asked for their take on the ME Delivery Plan not being funded. It would be great if anyone else who has the energy could ask too. This would give it a fighting chance of being included in the podcast! @thereforme.bsky.social
February 22, 2025 at 4:46 PM
The Rest is Politics podcast posted a questions request earlier today and I asked for their take on the ME Delivery Plan not being funded. It would be great if anyone else who has the energy could ask too. This would give it a fighting chance of being included in the podcast! @thereforme.bsky.social
Reposted by Sarah Swan
🎥 Today we’re launching our #FundThePlan campaign!
With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.
We want to show them why it is important to #FundThePlan.
Share a video on social media using our template ⬇️
With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.
We want to show them why it is important to #FundThePlan.
Share a video on social media using our template ⬇️
![“Script: Dear Wes & Ashley, My name is [...] and I have ME. I used to [...]. Now I can’t [...] The Delivery Plan for ME is an opportunity to invest in our future and reverse generations of neglect. So please, fund the plan.”](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreiabltmz3fvjbcanakfzgyloxps5wjyzrvmgqw67mzkwte6dkyp6tu@jpeg)
February 21, 2025 at 9:04 AM
🎥 Today we’re launching our #FundThePlan campaign!
With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.
We want to show them why it is important to #FundThePlan.
Share a video on social media using our template ⬇️
With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.
We want to show them why it is important to #FundThePlan.
Share a video on social media using our template ⬇️
Reposted by Sarah Swan
Our co-founder @karenlhargrave.bsky.social quoted in @thetimes.com today on news this week that no additional funds are planned for the new ME delivery plan.
www.thetimes.com/uk/healthcar...
www.thetimes.com/uk/healthcar...
February 19, 2025 at 7:47 AM
Our co-founder @karenlhargrave.bsky.social quoted in @thetimes.com today on news this week that no additional funds are planned for the new ME delivery plan.
www.thetimes.com/uk/healthcar...
www.thetimes.com/uk/healthcar...
Reposted by Sarah Swan
Support for ME isn’t just for Christmas!
Brilliant to see #ThereForME advent calendar supporter & @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social writing in @thetimes.com today.
www.thetimes.com/comment/colu...
Brilliant to see #ThereForME advent calendar supporter & @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social writing in @thetimes.com today.
www.thetimes.com/comment/colu...
Plan to help ME sufferers has been delayed for too long
Ministers must show that care and research for these neglected patients is a priority
www.thetimes.com
February 19, 2025 at 7:45 AM
Support for ME isn’t just for Christmas!
Brilliant to see #ThereForME advent calendar supporter & @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social writing in @thetimes.com today.
www.thetimes.com/comment/colu...
Brilliant to see #ThereForME advent calendar supporter & @libdems.org.uk health spokesperson @helenmorganlibdem.bsky.social writing in @thetimes.com today.
www.thetimes.com/comment/colu...
Reposted by Sarah Swan
To everyone with #ME who has been unwell since long before the pandemic, knows they not getting any better, and feels as if they have been forgotten: I may not know you by name but I think of you every single day. 2025 is going to be different. Hopefully better.
With love and respect from me to you.
With love and respect from me to you.
January 1, 2025 at 2:50 PM
To everyone with #ME who has been unwell since long before the pandemic, knows they not getting any better, and feels as if they have been forgotten: I may not know you by name but I think of you every single day. 2025 is going to be different. Hopefully better.
With love and respect from me to you.
With love and respect from me to you.
Reposted by Sarah Swan
Word of the Day is one I keep posting at the end of the year, hoping its time will come.
‘Respair’, from the 16th century, is fresh hope, and a recovery from despair.
Here’s to a few drops of respair in 2025.
‘Respair’, from the 16th century, is fresh hope, and a recovery from despair.
Here’s to a few drops of respair in 2025.
December 31, 2024 at 7:12 PM
Word of the Day is one I keep posting at the end of the year, hoping its time will come.
‘Respair’, from the 16th century, is fresh hope, and a recovery from despair.
Here’s to a few drops of respair in 2025.
‘Respair’, from the 16th century, is fresh hope, and a recovery from despair.
Here’s to a few drops of respair in 2025.
Reposted by Sarah Swan
I post a lot of good news about dogs on Twitter but A lot of people asking to also post here now.
Struggle to find the time but if I get over 20k followers here I'll find a way to post daily.
🎤 Mic check. Is this thing on?
Struggle to find the time but if I get over 20k followers here I'll find a way to post daily.
🎤 Mic check. Is this thing on?
November 14, 2024 at 3:57 AM
I post a lot of good news about dogs on Twitter but A lot of people asking to also post here now.
Struggle to find the time but if I get over 20k followers here I'll find a way to post daily.
🎤 Mic check. Is this thing on?
Struggle to find the time but if I get over 20k followers here I'll find a way to post daily.
🎤 Mic check. Is this thing on?
Reposted by Sarah Swan
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️
theconversation.com/ignored-blam...
theconversation.com/ignored-blam...
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
theconversation.com
October 21, 2024 at 9:45 AM
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️
theconversation.com/ignored-blam...
theconversation.com/ignored-blam...
Reposted by Sarah Swan
A timely reminder of how members of this "ideological sect" were key players in the culture wars in recent years www.theguardian.com/commentisfre...
October 18, 2024 at 10:06 AM
A timely reminder of how members of this "ideological sect" were key players in the culture wars in recent years www.theguardian.com/commentisfre...
Reposted by Sarah Swan
Thinking about the issues listed in this thread, it seems to me that there's a strong case for a public inquiry into the chronic mistreatment of people with ME/CFS.
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. We must learn all we can from this tragic case, says Guardian columnist George Monbiot
www.theguardian.com
October 18, 2024 at 11:16 AM
Thinking about the issues listed in this thread, it seems to me that there's a strong case for a public inquiry into the chronic mistreatment of people with ME/CFS.
Reposted by Sarah Swan
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. We must learn all we can from this tragic case, says Guardian columnist George Monbiot
www.theguardian.com
October 18, 2024 at 6:39 AM
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...