Clare
@clrblwrs.bsky.social
Reposted by Clare
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 18, 2025 at 7:02 PM
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
Reposted by Clare
Lord Falconer mentions Oregon’s annual reports on assisted suicide.
He doesn’t tell Peers that those same reports reveal:
• deaths approved for anorexia, arthritis and diabetes
• one person took over 5 days to die
• nearly half say they feel like a burden as a motivation
He doesn’t tell Peers that those same reports reveal:
• deaths approved for anorexia, arthritis and diabetes
• one person took over 5 days to die
• nearly half say they feel like a burden as a motivation
November 1, 2025 at 6:00 PM
Lord Falconer mentions Oregon’s annual reports on assisted suicide.
He doesn’t tell Peers that those same reports reveal:
• deaths approved for anorexia, arthritis and diabetes
• one person took over 5 days to die
• nearly half say they feel like a burden as a motivation
He doesn’t tell Peers that those same reports reveal:
• deaths approved for anorexia, arthritis and diabetes
• one person took over 5 days to die
• nearly half say they feel like a burden as a motivation
Reposted by Clare
@tomshakespeare.bsky.social
Lets see the data to support this wild claim
@TommyShakes
He is the only person I have heard say "the majority of disabled people support assisted dying"
@UKHouseofLords Lets see the data
Lets see the data to support this wild claim
@TommyShakes
He is the only person I have heard say "the majority of disabled people support assisted dying"
@UKHouseofLords Lets see the data
November 1, 2025 at 8:05 AM
@tomshakespeare.bsky.social
Lets see the data to support this wild claim
@TommyShakes
He is the only person I have heard say "the majority of disabled people support assisted dying"
@UKHouseofLords Lets see the data
Lets see the data to support this wild claim
@TommyShakes
He is the only person I have heard say "the majority of disabled people support assisted dying"
@UKHouseofLords Lets see the data
Reposted by Clare
Burning of wood and coal in homes contributes to almost 2500 deaths a year. Stopping unnecessary burning would save the NHS millions of pounds, but current laws fail to address the problem. See piece by Sally Howard for @bmj.com
www.bmj.com/content/391/...
www.bmj.com/content/391/...
Domestic wood burners kill thousands and cost NHS millions a year, report suggests
Burning of wood and coal in homes contributes to almost 2500 deaths a year, and stopping unnecessary burning would save the NHS millions of pounds, a report suggests.
An analysis by the charity Globa...
www.bmj.com
October 28, 2025 at 5:48 PM
Burning of wood and coal in homes contributes to almost 2500 deaths a year. Stopping unnecessary burning would save the NHS millions of pounds, but current laws fail to address the problem. See piece by Sally Howard for @bmj.com
www.bmj.com/content/391/...
www.bmj.com/content/391/...
Reposted by Clare
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 Clare
I've made a new list on @bookshop.org of books that explore nature / walking / the outdoors by disabled, neurodivergent and chronically ill writers - Nature Beyond Cure - aka our own narratives are messy and complex. Do share! #BookSky #DisabledWriters
uk.bookshop.org/lists/nature...?
uk.bookshop.org/lists/nature...?
Nature Beyond Cure: Disabled Perspectives
Books that explore nature and living with disability and illness from disability perspectives. No magical cures here!
uk.bookshop.org
July 6, 2025 at 11:59 AM
I've made a new list on @bookshop.org of books that explore nature / walking / the outdoors by disabled, neurodivergent and chronically ill writers - Nature Beyond Cure - aka our own narratives are messy and complex. Do share! #BookSky #DisabledWriters
uk.bookshop.org/lists/nature...?
uk.bookshop.org/lists/nature...?
Reposted by Clare
My letter in the Sunday Times on the cruelty and despair of claiming incapacity benefits with severe ME/CFS: www.thetimes.com/article/7ca7...
Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/...
Archive copy: archive.ph/YSEuk
Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/...
Archive copy: archive.ph/YSEuk
May 17, 2025 at 11:55 PM
My letter in the Sunday Times on the cruelty and despair of claiming incapacity benefits with severe ME/CFS: www.thetimes.com/article/7ca7...
Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/...
Archive copy: archive.ph/YSEuk
Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/...
Archive copy: archive.ph/YSEuk
Reposted by Clare
We are outside Parliament today protesting the bill and the devastating impacts it could have on Disabled people.
We’re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why she’s opposed to the Assisted Dying Bill.
We’re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why she’s opposed to the Assisted Dying Bill.
May 16, 2025 at 11:25 AM
We are outside Parliament today protesting the bill and the devastating impacts it could have on Disabled people.
We’re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why she’s opposed to the Assisted Dying Bill.
We’re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why she’s opposed to the Assisted Dying Bill.
Reposted by Clare
Apply by 31 March
𝙄𝙣𝙫𝙚𝙨𝙩 𝙞𝙣 𝙈𝙀 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙎𝙪𝙢𝙢𝙚𝙧 𝙎𝙩𝙪𝙙𝙚𝙣𝙩 𝘽𝙪𝙧𝙨𝙖𝙧𝙞𝙚𝙨
Three 8-week bursaries available for undergraduate students to gain practical experience of working in a research laboratory - agreat opportunity to gain real knowledge of #MECFS
investinme.org/iimer-newsle...
#research #MedEd
𝙄𝙣𝙫𝙚𝙨𝙩 𝙞𝙣 𝙈𝙀 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙎𝙪𝙢𝙢𝙚𝙧 𝙎𝙩𝙪𝙙𝙚𝙣𝙩 𝘽𝙪𝙧𝙨𝙖𝙧𝙞𝙚𝙨
Three 8-week bursaries available for undergraduate students to gain practical experience of working in a research laboratory - agreat opportunity to gain real knowledge of #MECFS
investinme.org/iimer-newsle...
#research #MedEd
March 26, 2025 at 9:16 AM
Apply by 31 March
𝙄𝙣𝙫𝙚𝙨𝙩 𝙞𝙣 𝙈𝙀 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙎𝙪𝙢𝙢𝙚𝙧 𝙎𝙩𝙪𝙙𝙚𝙣𝙩 𝘽𝙪𝙧𝙨𝙖𝙧𝙞𝙚𝙨
Three 8-week bursaries available for undergraduate students to gain practical experience of working in a research laboratory - agreat opportunity to gain real knowledge of #MECFS
investinme.org/iimer-newsle...
#research #MedEd
𝙄𝙣𝙫𝙚𝙨𝙩 𝙞𝙣 𝙈𝙀 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙎𝙪𝙢𝙢𝙚𝙧 𝙎𝙩𝙪𝙙𝙚𝙣𝙩 𝘽𝙪𝙧𝙨𝙖𝙧𝙞𝙚𝙨
Three 8-week bursaries available for undergraduate students to gain practical experience of working in a research laboratory - agreat opportunity to gain real knowledge of #MECFS
investinme.org/iimer-newsle...
#research #MedEd
Reposted by Clare
Drastic cuts to PIP will affect as many as 1 million disabled and ill people, pushing them into severe hardship, worsening physical and mental health, and isolation. There is no credible argument for pulling help from people shouldering the high costs of disability. Cruelty dressed up as reform.
March 18, 2025 at 4:04 PM
Drastic cuts to PIP will affect as many as 1 million disabled and ill people, pushing them into severe hardship, worsening physical and mental health, and isolation. There is no credible argument for pulling help from people shouldering the high costs of disability. Cruelty dressed up as reform.
Reposted by Clare
This is a seminal moment: a Labour government cutting disability benefits. Not just continuing Tory levels. Cutting.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
March 18, 2025 at 1:48 PM
This is a seminal moment: a Labour government cutting disability benefits. Not just continuing Tory levels. Cutting.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
Reposted by Clare
How are vitamin B12 and brain ageing connected? 🧠💊 🧠💊
This #BrainAwarenessWeek, we’re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age 📉
Read more ⤵️
buff.ly/Cg8r5av
This #BrainAwarenessWeek, we’re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age 📉
Read more ⤵️
buff.ly/Cg8r5av
March 12, 2025 at 12:01 PM
How are vitamin B12 and brain ageing connected? 🧠💊 🧠💊
This #BrainAwarenessWeek, we’re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age 📉
Read more ⤵️
buff.ly/Cg8r5av
This #BrainAwarenessWeek, we’re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age 📉
Read more ⤵️
buff.ly/Cg8r5av
Reposted by Clare
Female colleagues should never be expected to share changing facilities with male colleagues regardless of how they identify. It's wrong, and unlawful.
But that's what happened to Sandie Peggie, a nurse working for NHS Fife. Today's Observer column.
www.theguardian.com/commentisfre...
But that's what happened to Sandie Peggie, a nurse working for NHS Fife. Today's Observer column.
www.theguardian.com/commentisfre...
No woman should be forced to change her clothes in front of a male colleague | Sonia Sodha
A case brought by an NHS nurse over a shared changing room could be the tip of the iceberg
www.theguardian.com
February 9, 2025 at 9:32 AM
Female colleagues should never be expected to share changing facilities with male colleagues regardless of how they identify. It's wrong, and unlawful.
But that's what happened to Sandie Peggie, a nurse working for NHS Fife. Today's Observer column.
www.theguardian.com/commentisfre...
But that's what happened to Sandie Peggie, a nurse working for NHS Fife. Today's Observer column.
www.theguardian.com/commentisfre...
Reposted by Clare
A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐
@nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan
Thank you to @mediumwhite.bsky.social & co. for analysis
#MECFS #NHS
@nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan
Thank you to @mediumwhite.bsky.social & co. for analysis
#MECFS #NHS
February 16, 2025 at 7:37 PM
A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐
@nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan
Thank you to @mediumwhite.bsky.social & co. for analysis
#MECFS #NHS
@nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan
Thank you to @mediumwhite.bsky.social & co. for analysis
#MECFS #NHS
Reposted by Clare
Our take on Tom Shakespeare and co's letter supporting assisted suicide: he speaks only for a minority of privileged disabled people. Rushing to law when the basics are unknown is folly. A Royal Commission is the right way forward.
buds.org.uk/buds-respons...
buds.org.uk/buds-respons...
BuDS Response to Tom Shakespeare’s Letter Supporting Assisted Suicide
Dispute among disabled people highlights need for Royal Commission on Assisted Suicide
buds.org.uk
October 24, 2024 at 5:48 PM
Our take on Tom Shakespeare and co's letter supporting assisted suicide: he speaks only for a minority of privileged disabled people. Rushing to law when the basics are unknown is folly. A Royal Commission is the right way forward.
buds.org.uk/buds-respons...
buds.org.uk/buds-respons...
Reposted by Clare
Reposted by Clare
Out now, #MECFS, #LongCovid, and related news, advocacy and research from w/c 13th Jan in our latest News in Brief post.
Headlines and links to further reading for:
News, articles and advocacy
Research news and commentary
& Published research
www.s4me.info/threads/news...
Headlines and links to further reading for:
News, articles and advocacy
Research news and commentary
& Published research
www.s4me.info/threads/news...
News in Brief - January 2025
This thread has a Science for ME 'News in Brief' post for each week in January 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
www.s4me.info
January 19, 2025 at 11:33 AM
Out now, #MECFS, #LongCovid, and related news, advocacy and research from w/c 13th Jan in our latest News in Brief post.
Headlines and links to further reading for:
News, articles and advocacy
Research news and commentary
& Published research
www.s4me.info/threads/news...
Headlines and links to further reading for:
News, articles and advocacy
Research news and commentary
& Published research
www.s4me.info/threads/news...
Reposted by Clare
If you are an artist, artisanal crafter, or even a seller of secondhand goods in the EU, the #GPSR applies. The materials documentation requirements for artworks, handmade items, secondhand items are unworkable.
Please do write to the European Parliament:
www.europarl.europa.eu/portal/en/co...
Please do write to the European Parliament:
www.europarl.europa.eu/portal/en/co...
December 12, 2024 at 3:59 PM
If you are an artist, artisanal crafter, or even a seller of secondhand goods in the EU, the #GPSR applies. The materials documentation requirements for artworks, handmade items, secondhand items are unworkable.
Please do write to the European Parliament:
www.europarl.europa.eu/portal/en/co...
Please do write to the European Parliament:
www.europarl.europa.eu/portal/en/co...
Reposted by Clare
Small British firms stop selling to EU and Northern Ireland over 'crazy' Brexit rule change.
Some small businesses have been forced to stop trading at the busiest time of year for them.
Some small businesses have been forced to stop trading at the busiest time of year for them.
Small firms stop selling to EU and Northern Ireland over 'crazy' Brexit rule change
A change to safety laws means firms face paying out thousands more a year to send products to the EU
inews.co.uk
December 9, 2024 at 2:33 PM
Small British firms stop selling to EU and Northern Ireland over 'crazy' Brexit rule change.
Some small businesses have been forced to stop trading at the busiest time of year for them.
Some small businesses have been forced to stop trading at the busiest time of year for them.
Reposted by Clare
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
Reposted by Clare
Thanks for following if you don't know me.
I've just passed the 10 year anniversary of when I began running marathons for ME research.
I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet
🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
I've just passed the 10 year anniversary of when I began running marathons for ME research.
I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet
🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
November 16, 2024 at 8:43 PM
Thanks for following if you don't know me.
I've just passed the 10 year anniversary of when I began running marathons for ME research.
I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet
🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
I've just passed the 10 year anniversary of when I began running marathons for ME research.
I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet
🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
Reposted by Clare
I don’t think people grasp how much our ‘choice’ and our so called ‘free-will’ is constrained by social & political & cultural factors. The danger is in the culture shift: the easier it becomes to ask a doctor to kill you, the more lives may come to be seen as disposable.
November 14, 2024 at 10:59 PM
I don’t think people grasp how much our ‘choice’ and our so called ‘free-will’ is constrained by social & political & cultural factors. The danger is in the culture shift: the easier it becomes to ask a doctor to kill you, the more lives may come to be seen as disposable.
Reposted by Clare
In the runup to Xmas it's worth highlighting our book as a possible present for #physios and other #hcps wanting to learn about #ME. I'm still v proud of what we produced and it is still v relevant. @PhysiosForME
www.awesomebooks.com/book/9781839...
www.awesomebooks.com/book/9781839...
A Physiotherapist's Guide to Understanding and Managing ME/CFS | Karen Leslie,Nicola Clague-Baker,Natalie Hilliard,Michelle Bull | 9781839971433
A Physiotherapist's Guide to Understanding and Managing ME/CFS by Karen Leslie,Nicola Clague-Baker,Natalie Hilliard,Michelle Bull | 9781839971433, Buy new & second-hand (used) books online with Free U...
www.awesomebooks.com
November 15, 2024 at 7:15 AM
In the runup to Xmas it's worth highlighting our book as a possible present for #physios and other #hcps wanting to learn about #ME. I'm still v proud of what we produced and it is still v relevant. @PhysiosForME
www.awesomebooks.com/book/9781839...
www.awesomebooks.com/book/9781839...
Reposted by Clare
The Chester Chronicle, England. 10th November 1995.
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
November 10, 2024 at 3:00 AM
The Chester Chronicle, England. 10th November 1995.
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme