Anne
@anneinayrshire.bsky.social
Long term living with ME (over 30 yrs)
Have a lot of crashes but
Still trying
Still hoping
Largs, Scotland
Have a lot of crashes but
Still trying
Still hoping
Largs, Scotland
Pinned
Anne
@anneinayrshire.bsky.social
· Sep 3
I won't be able to see any DMs as haven't done all the age verification stuff
(I'm not on here much anyway).
(I'm not on here much anyway).
December 2, 2025 at 8:49 AM
Reposted by Anne
I just have to say this: Justice4me.uk is doing what nothing before has. Huge thanks to the bravery of lawyers and claimants holding government to account. The campaign understands this is a joint venture - and thank everyone involved for making it work as best it can.
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
Justice4me.uk
October 16, 2025 at 7:26 PM
I just have to say this: Justice4me.uk is doing what nothing before has. Huge thanks to the bravery of lawyers and claimants holding government to account. The campaign understands this is a joint venture - and thank everyone involved for making it work as best it can.
Reposted by Anne
🙏 @vladvexler.bsky.social this describes exactly the point being made by Justice4ME.uk.
7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this.
www.youtube.com/watch?v=_6KS...
7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this.
www.youtube.com/watch?v=_6KS...
When symptoms scarily escalate in ME and Long Covid
YouTube video by Vlad Vexler ME Diary
www.youtube.com
October 14, 2025 at 7:02 PM
🙏 @vladvexler.bsky.social this describes exactly the point being made by Justice4ME.uk.
7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this.
www.youtube.com/watch?v=_6KS...
7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this.
www.youtube.com/watch?v=_6KS...
Reposted by Anne
& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision.
Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk
Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk
October 14, 2025 at 12:57 PM
& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision.
Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk
Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk
Reposted by Anne
I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
October 14, 2025 at 1:51 PM
I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...
September 4, 2025 at 6:40 AM
@swastrosarah.bsky.social
A screenshot from Twitter
A screenshot from Twitter
September 4, 2025 at 6:39 AM
@swastrosarah.bsky.social
A screenshot from Twitter
A screenshot from Twitter
@swastrosarah.bsky.social
Wanted to send you a message about the crowd funder.
Can I email you, or could send you a DM on Twitter?
I can't use the DMs on here
Wanted to send you a message about the crowd funder.
Can I email you, or could send you a DM on Twitter?
I can't use the DMs on here
September 3, 2025 at 7:47 AM
@swastrosarah.bsky.social
Wanted to send you a message about the crowd funder.
Can I email you, or could send you a DM on Twitter?
I can't use the DMs on here
Wanted to send you a message about the crowd funder.
Can I email you, or could send you a DM on Twitter?
I can't use the DMs on here
I won't be able to see any DMs as haven't done all the age verification stuff
(I'm not on here much anyway).
(I'm not on here much anyway).
September 3, 2025 at 7:32 AM
I won't be able to see any DMs as haven't done all the age verification stuff
(I'm not on here much anyway).
(I'm not on here much anyway).
@swastrosarah.bsky.social
Just to mention that the only sharing option on the crowd funder just now is to share on Facebook?
But last night when I donated there were more options - Twitter, WhatsApp, email (I think)
But these have vanished off now
Just to mention that the only sharing option on the crowd funder just now is to share on Facebook?
But last night when I donated there were more options - Twitter, WhatsApp, email (I think)
But these have vanished off now
August 30, 2025 at 10:05 AM
@swastrosarah.bsky.social
Just to mention that the only sharing option on the crowd funder just now is to share on Facebook?
But last night when I donated there were more options - Twitter, WhatsApp, email (I think)
But these have vanished off now
Just to mention that the only sharing option on the crowd funder just now is to share on Facebook?
But last night when I donated there were more options - Twitter, WhatsApp, email (I think)
But these have vanished off now
Reposted by Anne
Please donate to Justice For ME if you can and/or help spread the word;
shorturl.at/x1Vyx
#meawareness #Justice4ME
@swastrosarah.bsky.social 💙💪
shorturl.at/x1Vyx
#meawareness #Justice4ME
@swastrosarah.bsky.social 💙💪
August 29, 2025 at 8:16 PM
Please donate to Justice For ME if you can and/or help spread the word;
shorturl.at/x1Vyx
#meawareness #Justice4ME
@swastrosarah.bsky.social 💙💪
shorturl.at/x1Vyx
#meawareness #Justice4ME
@swastrosarah.bsky.social 💙💪
Reposted by Anne
I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
www.crowdjustice.com
August 29, 2025 at 6:05 PM
I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
Reposted by Anne
no paywall full story full story archive.is/2025.08.09-2...
August 10, 2025 at 12:58 PM
no paywall full story full story archive.is/2025.08.09-2...
Reposted by Anne
expected to defend themselves against baseless accusations and provide the high level of nursing care demanded by very severe ME without support from somewhere.
4/4 @ashleydaltonmp.bsky.social @therestpolitics.bsky.social
#ThereForME #ThePlanForME #HumanRightsAbuses #JusticeForME
4/4 @ashleydaltonmp.bsky.social @therestpolitics.bsky.social
#ThereForME #ThePlanForME #HumanRightsAbuses #JusticeForME
August 10, 2025 at 7:17 AM
expected to defend themselves against baseless accusations and provide the high level of nursing care demanded by very severe ME without support from somewhere.
4/4 @ashleydaltonmp.bsky.social @therestpolitics.bsky.social
#ThereForME #ThePlanForME #HumanRightsAbuses #JusticeForME
4/4 @ashleydaltonmp.bsky.social @therestpolitics.bsky.social
#ThereForME #ThePlanForME #HumanRightsAbuses #JusticeForME
Reposted by Anne
England throughout the inquest but claimed to be off long term sick.
Hill was told repeatedly Maeve was at risk of organisational neglect by Maeve and I before she was admitted to hospital. Very severe ME can kill if not properly managed. Hill chose to ignore it. Maeve died.
Families cannot be
3/4
Hill was told repeatedly Maeve was at risk of organisational neglect by Maeve and I before she was admitted to hospital. Very severe ME can kill if not properly managed. Hill chose to ignore it. Maeve died.
Families cannot be
3/4
August 10, 2025 at 7:17 AM
England throughout the inquest but claimed to be off long term sick.
Hill was told repeatedly Maeve was at risk of organisational neglect by Maeve and I before she was admitted to hospital. Very severe ME can kill if not properly managed. Hill chose to ignore it. Maeve died.
Families cannot be
3/4
Hill was told repeatedly Maeve was at risk of organisational neglect by Maeve and I before she was admitted to hospital. Very severe ME can kill if not properly managed. Hill chose to ignore it. Maeve died.
Families cannot be
3/4
Reposted by Anne
The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work
2/4
2/4
August 10, 2025 at 7:17 AM
The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work
2/4
2/4
Reposted by Anne
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
August 10, 2025 at 7:17 AM
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Reposted by Anne
#pwME #LongCovid #ArtDirectors #PictureResearch #PictureEditors
How to illustrate ME, formerly known as CFS, and Long COVID.
Dim light level on model/subject. Make eye mask more visible. No light on bg.
@meownersclub.bsky.social @paulaknight.bsky.social @franceyme.bsky.social
How to illustrate ME, formerly known as CFS, and Long COVID.
Dim light level on model/subject. Make eye mask more visible. No light on bg.
@meownersclub.bsky.social @paulaknight.bsky.social @franceyme.bsky.social
August 5, 2025 at 8:23 AM
#pwME #LongCovid #ArtDirectors #PictureResearch #PictureEditors
How to illustrate ME, formerly known as CFS, and Long COVID.
Dim light level on model/subject. Make eye mask more visible. No light on bg.
@meownersclub.bsky.social @paulaknight.bsky.social @franceyme.bsky.social
How to illustrate ME, formerly known as CFS, and Long COVID.
Dim light level on model/subject. Make eye mask more visible. No light on bg.
@meownersclub.bsky.social @paulaknight.bsky.social @franceyme.bsky.social
Reposted by Anne
The Eye of the Migraine. A quick expressive use of soft pastels before I lay back down and allowed pain meds to do their thing.
#art #drawing #pastels #migraine #chronicillness #chronicpain #MECFS #invisibleillness #chronicmigraine #selfportrait
#art #drawing #pastels #migraine #chronicillness #chronicpain #MECFS #invisibleillness #chronicmigraine #selfportrait
March 22, 2025 at 2:18 PM
The Eye of the Migraine. A quick expressive use of soft pastels before I lay back down and allowed pain meds to do their thing.
#art #drawing #pastels #migraine #chronicillness #chronicpain #MECFS #invisibleillness #chronicmigraine #selfportrait
#art #drawing #pastels #migraine #chronicillness #chronicpain #MECFS #invisibleillness #chronicmigraine #selfportrait
Think I've been in bed for most of the last month. Not all of it, but most of it.
This #ME life can be very small.
Trying to be grateful for food (and that I can eat it)
and
Can watch the odd hour or 2 of telly some days
This #ME life can be very small.
Trying to be grateful for food (and that I can eat it)
and
Can watch the odd hour or 2 of telly some days
March 1, 2025 at 3:34 PM
Think I've been in bed for most of the last month. Not all of it, but most of it.
This #ME life can be very small.
Trying to be grateful for food (and that I can eat it)
and
Can watch the odd hour or 2 of telly some days
This #ME life can be very small.
Trying to be grateful for food (and that I can eat it)
and
Can watch the odd hour or 2 of telly some days
Reposted by Anne
Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...
Hillary Johnson on Substack
My new piece: What is equivalent to the purchase price of a house in London? It’s the annual investment by the UK government in myalgic encephalomyelitis, a disease afflicting perhaps half a million o...
substack.com
February 26, 2025 at 7:23 AM
Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...
Reposted by Anne
The fate of ME in the UK has been a tragic saga since 1970, and a new development suggests the tide has yet to turn. Young women with severe ME are dying of medical neglect in England in the 21st Century. Why?
hillaryjohnson.substack.com/p/in-sympath...
hillaryjohnson.substack.com/p/in-sympath...
In Sympathy with the Beleaguered UK
A failed response to ME continues to play out in a country with a venerable legacy of ME research
hillaryjohnson.substack.com
February 26, 2025 at 8:33 PM
The fate of ME in the UK has been a tragic saga since 1970, and a new development suggests the tide has yet to turn. Young women with severe ME are dying of medical neglect in England in the 21st Century. Why?
hillaryjohnson.substack.com/p/in-sympath...
hillaryjohnson.substack.com/p/in-sympath...
Reposted by Anne
“They are among the most underserved patient communities in the UK. The
sickest lie in darkened rooms, sometimes unable to move, speak or even
swallow. Those living with the most extreme forms of ME describe it as
not a life but a bare existence”
#MEcfs #PwME
sickest lie in darkened rooms, sometimes unable to move, speak or even
swallow. Those living with the most extreme forms of ME describe it as
not a life but a bare existence”
#MEcfs #PwME
Comment article in The Times by @helenmorganlibdem.bsky.social
“Plan to help ME sufferers has been delayed for too long
new. Ministers must show that care and research for these neglected patients is a priority.”
www.thetimes.com/comment/colu...
Archive: archive.ph/a3iYo
Thank you, Helen.
“Plan to help ME sufferers has been delayed for too long
new. Ministers must show that care and research for these neglected patients is a priority.”
www.thetimes.com/comment/colu...
Archive: archive.ph/a3iYo
Thank you, Helen.
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 1:47 PM