sarah boothby
@swastrosarah.bsky.social
Speaking up for everyone affected by severe/very severe ME.
#MEKills #MaeveInquest #LongCovidME
backstory https://x.com/swastrosarah?lang=en-GB #PlanForME #JusticeForME
ME is much more than chronic fatigue; it kills every year.
#MEKills #MaeveInquest #LongCovidME
backstory https://x.com/swastrosarah?lang=en-GB #PlanForME #JusticeForME
ME is much more than chronic fatigue; it kills every year.
Pinned
sarah boothby
@swastrosarah.bsky.social
· Dec 11
NHS Royal Devon | Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
www.royaldevon.nhs.uk
#MaeveInquest update! All credit to NHS Devon for innovating the first step towards an ME specific NHS pathway. For planned and unplanned hospital admissions, details are now public and available here, www.royaldevon.nhs.uk/services/mya...
Reposted by sarah boothby
🚨PHD Opportunity 🚨
Funded PhD place available from next autumn to work with me on a project improving services for children with complex health needs!
Calling interested graduates with degrees in a numerate subject.
www.findaphd.com/phds/project...
Funded PhD place available from next autumn to work with me on a project improving services for children with complex health needs!
Calling interested graduates with degrees in a numerate subject.
www.findaphd.com/phds/project...
Mathematics PhD – System dynamics modelling of services for children with complex health needs at University College London on FindAPhD.com
PhD Project - Mathematics PhD – System dynamics modelling of services for children with complex health needs at University College London, listed on FindAPhD.com
www.findaphd.com
December 8, 2025 at 3:44 PM
🚨PHD Opportunity 🚨
Funded PhD place available from next autumn to work with me on a project improving services for children with complex health needs!
Calling interested graduates with degrees in a numerate subject.
www.findaphd.com/phds/project...
Funded PhD place available from next autumn to work with me on a project improving services for children with complex health needs!
Calling interested graduates with degrees in a numerate subject.
www.findaphd.com/phds/project...
Reposted by sarah boothby
And if you’re not new, please consider contributing! The site badly needs more people adding to and fact-checking it.
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Welcome to MEpedia
me-pedia.org
December 8, 2025 at 11:30 PM
And if you’re not new, please consider contributing! The site badly needs more people adding to and fact-checking it.
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
Reposted by sarah boothby
On this day two years ago.
The Daily Sentinel, Colorado, US.
9th December 2023.
#mecfs #cfsme #myalgice #myalgicencephalomyelitis
The Daily Sentinel, Colorado, US.
9th December 2023.
#mecfs #cfsme #myalgice #myalgicencephalomyelitis
December 9, 2025 at 9:11 AM
On this day two years ago.
The Daily Sentinel, Colorado, US.
9th December 2023.
#mecfs #cfsme #myalgice #myalgicencephalomyelitis
The Daily Sentinel, Colorado, US.
9th December 2023.
#mecfs #cfsme #myalgice #myalgicencephalomyelitis
It doesn't matter how much state sponsored suffering from medical neglect is reported. HM Government does nothing to prevent these harms.
#pwME #LongCovid
Decades of wasted knowledge.
@gwynnemp.bsky.social @wesstreeting.bsky.social @laylamoran.bsky.social
#pwME #LongCovid
Decades of wasted knowledge.
@gwynnemp.bsky.social @wesstreeting.bsky.social @laylamoran.bsky.social
Seventeen years ago today.
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
December 9, 2025 at 9:51 AM
It doesn't matter how much state sponsored suffering from medical neglect is reported. HM Government does nothing to prevent these harms.
#pwME #LongCovid
Decades of wasted knowledge.
@gwynnemp.bsky.social @wesstreeting.bsky.social @laylamoran.bsky.social
#pwME #LongCovid
Decades of wasted knowledge.
@gwynnemp.bsky.social @wesstreeting.bsky.social @laylamoran.bsky.social
Reposted by sarah boothby
Seventeen years ago today.
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
December 9, 2025 at 9:01 AM
Seventeen years ago today.
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
More on Lynn and Kay Gilderdale.
The Independent, UK. 9th December 2008.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
Reposted by sarah boothby
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Welcome to MEpedia
me-pedia.org
December 8, 2025 at 7:19 PM
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Reposted by sarah boothby
Last creative offering of 2025. Resting fox. Hoping to get some giclee prints made of this, eventually, but in the meantime I've listed it on Redbubble prints etc. in case anybody wanted something resty and foxy for Christmas.
www.redbubble.com/i/art-print/...
#chronicIllness #GiftIdeas #ArtSky
www.redbubble.com/i/art-print/...
#chronicIllness #GiftIdeas #ArtSky
"Rest - Sleeping Fox botanical art" Art Print for Sale by PaulaJKnight
• Millions of unique designs by independent artists. Find your thing.
www.redbubble.com
December 8, 2025 at 6:37 PM
Last creative offering of 2025. Resting fox. Hoping to get some giclee prints made of this, eventually, but in the meantime I've listed it on Redbubble prints etc. in case anybody wanted something resty and foxy for Christmas.
www.redbubble.com/i/art-print/...
#chronicIllness #GiftIdeas #ArtSky
www.redbubble.com/i/art-print/...
#chronicIllness #GiftIdeas #ArtSky
@tomkindlon.bsky.social do you have any studies on sensory hypersensitivities in very severe ME?
#pwME
#MEKills
#pwME
#MEKills
December 8, 2025 at 10:22 AM
@tomkindlon.bsky.social do you have any studies on sensory hypersensitivities in very severe ME?
#pwME
#MEKills
#pwME
#MEKills
Reposted by sarah boothby
Beech leaf digital watercolour. Available as wall art etc. from Redbubble. Still lots of sales on the site.
#AutumnLeaves #GiftIdeas #SmallBusiness #DisabledArtist
www.redbubble.com/i/art-print/...
#AutumnLeaves #GiftIdeas #SmallBusiness #DisabledArtist
www.redbubble.com/i/art-print/...
December 7, 2025 at 4:37 PM
Beech leaf digital watercolour. Available as wall art etc. from Redbubble. Still lots of sales on the site.
#AutumnLeaves #GiftIdeas #SmallBusiness #DisabledArtist
www.redbubble.com/i/art-print/...
#AutumnLeaves #GiftIdeas #SmallBusiness #DisabledArtist
www.redbubble.com/i/art-print/...
Highly detailed, differential health update on recovery from Covid infections for one #pwME.
@ashleydaltonmp.bsky.social pls view.
Thank you @vladvexler.bsky.social for sharing how much it means to disabled ppl to be enabled (wheelchair) to participate in productive work and social activities.
@ashleydaltonmp.bsky.social pls view.
Thank you @vladvexler.bsky.social for sharing how much it means to disabled ppl to be enabled (wheelchair) to participate in productive work and social activities.
Long form health update on the Vlad's ME diary channel
youtu.be/MrJqbCTIsHQ?...
youtu.be/MrJqbCTIsHQ?...
7 months of not walking health update - Long Covid & ME
YouTube video by Vlad Vexler ME Diary
youtu.be
December 5, 2025 at 7:47 AM
Highly detailed, differential health update on recovery from Covid infections for one #pwME.
@ashleydaltonmp.bsky.social pls view.
Thank you @vladvexler.bsky.social for sharing how much it means to disabled ppl to be enabled (wheelchair) to participate in productive work and social activities.
@ashleydaltonmp.bsky.social pls view.
Thank you @vladvexler.bsky.social for sharing how much it means to disabled ppl to be enabled (wheelchair) to participate in productive work and social activities.
Reposted by sarah boothby
I suspect this article framing is a way to criticise the upcoming doctors' strikes.
The real cause for alarm for me is that the NHS is going into this winter stressed and stretched *yet again*.
We should have a health system that can cope much better with winter pressures and we just don’t. 7/8
The real cause for alarm for me is that the NHS is going into this winter stressed and stretched *yet again*.
We should have a health system that can cope much better with winter pressures and we just don’t. 7/8
December 4, 2025 at 6:01 PM
I suspect this article framing is a way to criticise the upcoming doctors' strikes.
The real cause for alarm for me is that the NHS is going into this winter stressed and stretched *yet again*.
We should have a health system that can cope much better with winter pressures and we just don’t. 7/8
The real cause for alarm for me is that the NHS is going into this winter stressed and stretched *yet again*.
We should have a health system that can cope much better with winter pressures and we just don’t. 7/8
Reposted by sarah boothby
#Disabled people in Aotearoa, be part of #research, on cost of living and cost of #disability, part of disability led Monitoring of the #UNCRPD. The Donald Beasley Institute is researching for the Disabled People’s Organisation (DPO) Coalition.
corexmss43gf6x5cw7qm.qualtrics.com/jfe/form/SV_...
corexmss43gf6x5cw7qm.qualtrics.com/jfe/form/SV_...
My Experiences, My Rights - Supports and Services (Participant Interest Form)
Please fill out this form if you are interested in participating in this research.
corexmss43gf6x5cw7qm.qualtrics.com
December 3, 2025 at 7:44 PM
#Disabled people in Aotearoa, be part of #research, on cost of living and cost of #disability, part of disability led Monitoring of the #UNCRPD. The Donald Beasley Institute is researching for the Disabled People’s Organisation (DPO) Coalition.
corexmss43gf6x5cw7qm.qualtrics.com/jfe/form/SV_...
corexmss43gf6x5cw7qm.qualtrics.com/jfe/form/SV_...
Reposted by sarah boothby
Another day in WTF #MECFS
I thought my light sensitivity from autism. was bad. Dear lord did ME dial it up to 11.
Blackout clingfilm/ curtains on the windows. Covered every little device light with electrical tape.
And still, the light seeping through the cracks in the door is painful 😣
I thought my light sensitivity from autism. was bad. Dear lord did ME dial it up to 11.
Blackout clingfilm/ curtains on the windows. Covered every little device light with electrical tape.
And still, the light seeping through the cracks in the door is painful 😣
December 3, 2025 at 5:49 AM
Another day in WTF #MECFS
I thought my light sensitivity from autism. was bad. Dear lord did ME dial it up to 11.
Blackout clingfilm/ curtains on the windows. Covered every little device light with electrical tape.
And still, the light seeping through the cracks in the door is painful 😣
I thought my light sensitivity from autism. was bad. Dear lord did ME dial it up to 11.
Blackout clingfilm/ curtains on the windows. Covered every little device light with electrical tape.
And still, the light seeping through the cracks in the door is painful 😣
Reposted by sarah boothby
Thinking of Jo and everything she tried to prevent this death.
December 2, 2025 at 7:59 PM
Reposted by sarah boothby
So incredibly sad 💔😢
But yet another one of those ‘never events’ that I believe @ashleydaltonmp.bsky.social committed to ensuring would never happen again 😢
Multiple “Prevention of Future Deaths Reports” just aren’t working. It must be time to take a look into the details and find out why?
#pwME
But yet another one of those ‘never events’ that I believe @ashleydaltonmp.bsky.social committed to ensuring would never happen again 😢
Multiple “Prevention of Future Deaths Reports” just aren’t working. It must be time to take a look into the details and find out why?
#pwME
Thinking of Jo and everything she tried to prevent this death.
December 2, 2025 at 7:30 PM
So incredibly sad 💔😢
But yet another one of those ‘never events’ that I believe @ashleydaltonmp.bsky.social committed to ensuring would never happen again 😢
Multiple “Prevention of Future Deaths Reports” just aren’t working. It must be time to take a look into the details and find out why?
#pwME
But yet another one of those ‘never events’ that I believe @ashleydaltonmp.bsky.social committed to ensuring would never happen again 😢
Multiple “Prevention of Future Deaths Reports” just aren’t working. It must be time to take a look into the details and find out why?
#pwME
Reposted by sarah boothby
Reposted by sarah boothby
Its a major medical scandal the way ME sufferers are treated. Devastating news , poor poor girl
December 2, 2025 at 4:30 PM
Its a major medical scandal the way ME sufferers are treated. Devastating news , poor poor girl
Thinking of Jo and everything she tried to prevent this death.
December 2, 2025 at 2:06 PM
Thinking of Jo and everything she tried to prevent this death.
Reposted by sarah boothby
Yep. Another scandalous death following extreme cruelty at Jimmie's, ably assisted by Action for ME. They blamed parents. As usual.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.
December 2, 2025 at 1:34 PM
Yep. Another scandalous death following extreme cruelty at Jimmie's, ably assisted by Action for ME. They blamed parents. As usual.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.
Is it just me, or are there millions listening to the political pundits ranting about their misinterpretation of Budget 2025 thinking, "they did not listen to what she actually said"?
#pwME isn't this exactly what misogyny sounds like?? When they get it wrong, they blame us.
#pwME isn't this exactly what misogyny sounds like?? When they get it wrong, they blame us.
December 1, 2025 at 7:53 AM
Is it just me, or are there millions listening to the political pundits ranting about their misinterpretation of Budget 2025 thinking, "they did not listen to what she actually said"?
#pwME isn't this exactly what misogyny sounds like?? When they get it wrong, they blame us.
#pwME isn't this exactly what misogyny sounds like?? When they get it wrong, they blame us.
Reposted by sarah boothby
Yeah, Ezra. Thank you for sharing that. Resonates with me, too. For me, the hardest thing is waking in the night. I'm always full of adrenaline from dysautonomia heart-racing then. Or the doom feeling. Would be so nice to have someone there to say "Are you okay? Do you need anything?"
November 28, 2025 at 8:28 PM
Yeah, Ezra. Thank you for sharing that. Resonates with me, too. For me, the hardest thing is waking in the night. I'm always full of adrenaline from dysautonomia heart-racing then. Or the doom feeling. Would be so nice to have someone there to say "Are you okay? Do you need anything?"
Reposted by sarah boothby
I know the way relationships and romantic love are portrayed in our society differs a lot from ours. It’s easy to compare your life to the norm, even when life as a bedbound, disabled and severely ill person is totally different. We are allowed to define what love and a relationship look like to us.
November 30, 2025 at 12:26 PM
I know the way relationships and romantic love are portrayed in our society differs a lot from ours. It’s easy to compare your life to the norm, even when life as a bedbound, disabled and severely ill person is totally different. We are allowed to define what love and a relationship look like to us.
Reposted by sarah boothby
I never thought something like this would be possible in a situation like ours. Yet, Line has shown me we can do things our own way despite the hard circumstances. We both have severe ME and live in different countries, she in Denmark and I in Finland, but our love knows no borders. 2/8
November 30, 2025 at 12:26 PM
I never thought something like this would be possible in a situation like ours. Yet, Line has shown me we can do things our own way despite the hard circumstances. We both have severe ME and live in different countries, she in Denmark and I in Finland, but our love knows no borders. 2/8
Reposted by sarah boothby
Thinking of everyone taking part in the PAIS-protest in the Netherlands today.
People with ME and Long Covid deserve to be believed, to receive safe care, proper biomedical treatment, and an end to years of neglect and scandal.
More info: www.hetpaisprotest.nl
People with ME and Long Covid deserve to be believed, to receive safe care, proper biomedical treatment, and an end to years of neglect and scandal.
More info: www.hetpaisprotest.nl
#NietHersteld
www.hetpaisprotest.nl
November 30, 2025 at 1:23 PM
Thinking of everyone taking part in the PAIS-protest in the Netherlands today.
People with ME and Long Covid deserve to be believed, to receive safe care, proper biomedical treatment, and an end to years of neglect and scandal.
More info: www.hetpaisprotest.nl
People with ME and Long Covid deserve to be believed, to receive safe care, proper biomedical treatment, and an end to years of neglect and scandal.
More info: www.hetpaisprotest.nl
Reposted by sarah boothby
My daughter’s referral to our local Long Covid clinic has been refused twice because she is “too ill” for their service (probably true, they offer little). She has just been re referred. Feels like an endless case of pass the patient, with no help whatsoever (after 5 years)
November 30, 2025 at 1:44 AM
My daughter’s referral to our local Long Covid clinic has been refused twice because she is “too ill” for their service (probably true, they offer little). She has just been re referred. Feels like an endless case of pass the patient, with no help whatsoever (after 5 years)