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
I'm so angry about this. No-one with #LongCovid should be made homeless.
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
Threatened with repossession and homelessness because of non-payment of mortgage on my tiny studio flat.
Before 2020 I hadn't missed a single payment. But I built up debt when I got Alpha-wave #covid and couldn't work. My best mate died same time. I wonder how many of us there are out there.
Before 2020 I hadn't missed a single payment. But I built up debt when I got Alpha-wave #covid and couldn't work. My best mate died same time. I wonder how many of us there are out there.
December 13, 2025 at 9:56 AM
I'm so angry about this. No-one with #LongCovid should be made homeless.
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
No compensation. More destitute as the years pass. No treatments.
@teamlabouruk.bsky.social @longcovidsos.bsky.social @ashleydaltonmp.bsky.social @joplatt.bsky.social @greensagainstcovid.bsky.social
bsky.app/profile/ston...
Reposted by sarah boothby
Please sign and share to make healthcare settings safer for clinically vulnerable, immunocompromised and chronically ill people. Unless we want to live in a health supremacist society...?
petition.parliament.uk/petitions/74...
#ChronicIllness #Disability #PwME #LongCovid #Cancer #MEcfs
petition.parliament.uk/petitions/74...
#ChronicIllness #Disability #PwME #LongCovid #Cancer #MEcfs
Petition: Review NHS policy on masks, safe air & ventilation to protect vulnerable
Vulnerable people — those with cancer, immune compromise, or chronic illness — should feel safe in NHS settings, not fearful. We’re calling for a 'do no harm' standard: an automatic right to treatment...
petition.parliament.uk
December 13, 2025 at 8:00 AM
Please sign and share to make healthcare settings safer for clinically vulnerable, immunocompromised and chronically ill people. Unless we want to live in a health supremacist society...?
petition.parliament.uk/petitions/74...
#ChronicIllness #Disability #PwME #LongCovid #Cancer #MEcfs
petition.parliament.uk/petitions/74...
#ChronicIllness #Disability #PwME #LongCovid #Cancer #MEcfs
Reposted by sarah boothby
I got a little good news today & the moment of happiness plunged me into PEM 🫠
December 13, 2025 at 4:52 AM
I got a little good news today & the moment of happiness plunged me into PEM 🫠
Reposted by sarah boothby
Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.
December 13, 2025 at 6:39 AM
Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.
Reposted by sarah boothby
• The health professionals in the Adferiad Teams who are trying their very best for #pwME – we want to work with you;
• WAMES , MESiG, ME Voices Wales, Action For ME, ME Association, 25% ME Group & Long Covid Support for backing us - & because ‘We are Stronger Together’! 5/5
• WAMES , MESiG, ME Voices Wales, Action For ME, ME Association, 25% ME Group & Long Covid Support for backing us - & because ‘We are Stronger Together’! 5/5
December 12, 2025 at 8:01 PM
• The health professionals in the Adferiad Teams who are trying their very best for #pwME – we want to work with you;
• WAMES , MESiG, ME Voices Wales, Action For ME, ME Association, 25% ME Group & Long Covid Support for backing us - & because ‘We are Stronger Together’! 5/5
• WAMES , MESiG, ME Voices Wales, Action For ME, ME Association, 25% ME Group & Long Covid Support for backing us - & because ‘We are Stronger Together’! 5/5
Reposted by sarah boothby
Huge thanks to:
• Those who shared their lived experience of this devastating illness with their MSs;
• MSs who spoke in the debate on their behalf;
• The Senedd as a whole which voted to carry the motion unopposed;
• Jeremy Miles for his positive response on behalf of the WG
4/5
• Those who shared their lived experience of this devastating illness with their MSs;
• MSs who spoke in the debate on their behalf;
• The Senedd as a whole which voted to carry the motion unopposed;
• Jeremy Miles for his positive response on behalf of the WG
4/5
December 12, 2025 at 8:01 PM
Huge thanks to:
• Those who shared their lived experience of this devastating illness with their MSs;
• MSs who spoke in the debate on their behalf;
• The Senedd as a whole which voted to carry the motion unopposed;
• Jeremy Miles for his positive response on behalf of the WG
4/5
• Those who shared their lived experience of this devastating illness with their MSs;
• MSs who spoke in the debate on their behalf;
• The Senedd as a whole which voted to carry the motion unopposed;
• Jeremy Miles for his positive response on behalf of the WG
4/5
Reposted by sarah boothby
This is the first time someone has featured my work and interviewed me! I share my experience living with severe ME while documenting this current life.
PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.
#MECFS #pwME #Photography
PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.
#MECFS #pwME #Photography
Niko Suvisto on photography as survival through ME/CFS
Niko Suvisto on photography as survival through ME/CFS
www.pcac.ngo
December 12, 2025 at 7:46 AM
This is the first time someone has featured my work and interviewed me! I share my experience living with severe ME while documenting this current life.
PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.
#MECFS #pwME #Photography
PCAC (Patient Caregiver Artist Coalition) does a great job with their features! So I’m honoured to be included.
#MECFS #pwME #Photography
Reposted by sarah boothby
@kristinwrites.bsky.social @exceedhergrasp1.bsky.social @binitakane.bsky.social @kaufmanmd.bsky.social @chromatowski.bsky.social
The mistreatment of ME/CFS patients isn’t a minor oversight — it’s one of modern medicine’s greatest failures. Millions harmed. Decades wasted.
The mistreatment of ME/CFS patients isn’t a minor oversight — it’s one of modern medicine’s greatest failures. Millions harmed. Decades wasted.
December 10, 2025 at 8:40 PM
@kristinwrites.bsky.social @exceedhergrasp1.bsky.social @binitakane.bsky.social @kaufmanmd.bsky.social @chromatowski.bsky.social
The mistreatment of ME/CFS patients isn’t a minor oversight — it’s one of modern medicine’s greatest failures. Millions harmed. Decades wasted.
The mistreatment of ME/CFS patients isn’t a minor oversight — it’s one of modern medicine’s greatest failures. Millions harmed. Decades wasted.
This standard of debate was largely missing from Westminster Hall a couple of weeks ago.
Congratulations 🏴: please keep leading the way on the co-production #pwME and medics need to develop a specialist #ME health service
@wesstreeting.bsky.social @ashleydaltonmp.bsky.social @laylamoran.bsky.social
Congratulations 🏴: please keep leading the way on the co-production #pwME and medics need to develop a specialist #ME health service
@wesstreeting.bsky.social @ashleydaltonmp.bsky.social @laylamoran.bsky.social
The Welsh Parliament debate on ME/CFS is now on YouTube. Adam Price MS led the debate, calling for better care, recognition, and support across Wales
youtu.be/akICL-DXfp8?...
Link the motion
record.senedd.wales/Motion/8884
youtu.be/akICL-DXfp8?...
Link the motion
record.senedd.wales/Motion/8884
Welsh Parliament Debate on ME/CFS December 2025
YouTube video by Broken Battery
youtu.be
December 10, 2025 at 8:14 PM
This standard of debate was largely missing from Westminster Hall a couple of weeks ago.
Congratulations 🏴: please keep leading the way on the co-production #pwME and medics need to develop a specialist #ME health service
@wesstreeting.bsky.social @ashleydaltonmp.bsky.social @laylamoran.bsky.social
Congratulations 🏴: please keep leading the way on the co-production #pwME and medics need to develop a specialist #ME health service
@wesstreeting.bsky.social @ashleydaltonmp.bsky.social @laylamoran.bsky.social
Reposted by sarah boothby
🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
You can sign the petition here:
You can sign the petition here:
Sign the Petition
Call for Funding a New Clinical Study on Daratumumab for ME/CFS
www.change.org
December 10, 2025 at 12:14 PM
🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
You can sign the petition here:
You can sign the petition here:
Reposted by sarah boothby
The Senedd.TV link for the Plenary session on Wednesday 10 December (starts 1.30pm) is here: www.senedd.tv/Meeting/Live...
#SeneddMEDebate
#SeneddMEDebate
Live-Plenary-10/12/2025
The Senedd is the democratically elected body that represents the interests of Wales and its people, makes laws for Wales, agrees Welsh taxes and holds the Welsh Government to account.
www.senedd.tv
December 10, 2025 at 11:16 AM
The Senedd.TV link for the Plenary session on Wednesday 10 December (starts 1.30pm) is here: www.senedd.tv/Meeting/Live...
#SeneddMEDebate
#SeneddMEDebate
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
December 9, 2025 at 9:55 PM
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
Reposted by sarah boothby
Workwell Advocates for You in Rapid Response to Long Covid Exercise Trial. In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research. Read more: conta.cc/3KA1Vf6
#LongCOVID #Advocacy #Exercise #PEM #DoNoHarm #nonprofit #Science @sunsopeningband.bsky.social @bmj.com
#LongCOVID #Advocacy #Exercise #PEM #DoNoHarm #nonprofit #Science @sunsopeningband.bsky.social @bmj.com
December 9, 2025 at 9:36 PM
Workwell Advocates for You in Rapid Response to Long Covid Exercise Trial. In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research. Read more: conta.cc/3KA1Vf6
#LongCOVID #Advocacy #Exercise #PEM #DoNoHarm #nonprofit #Science @sunsopeningband.bsky.social @bmj.com
#LongCOVID #Advocacy #Exercise #PEM #DoNoHarm #nonprofit #Science @sunsopeningband.bsky.social @bmj.com
record.senedd.wales/Motion/8884
Tomorrow, Wednesday 10 December 2025.
@laylamoran.bsky.social please note & catch up on the most likely of all 4 nations to actually deliver for #pwME and their stricken families.
@wamesmecfs.bsky.social
@shauna-chambers.bsky.social
Tomorrow, Wednesday 10 December 2025.
@laylamoran.bsky.social please note & catch up on the most likely of all 4 nations to actually deliver for #pwME and their stricken families.
@wamesmecfs.bsky.social
@shauna-chambers.bsky.social
Motion - NDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
record.senedd.wales
December 9, 2025 at 7:02 PM
record.senedd.wales/Motion/8884
Tomorrow, Wednesday 10 December 2025.
@laylamoran.bsky.social please note & catch up on the most likely of all 4 nations to actually deliver for #pwME and their stricken families.
@wamesmecfs.bsky.social
@shauna-chambers.bsky.social
Tomorrow, Wednesday 10 December 2025.
@laylamoran.bsky.social please note & catch up on the most likely of all 4 nations to actually deliver for #pwME and their stricken families.
@wamesmecfs.bsky.social
@shauna-chambers.bsky.social
Reposted by sarah boothby
Welsh Senedd Debate on ME/CFS next Wed 10 Dec. Debate on Motion 8884 to be led by Adam Price MS. With Senedd elections approaching fast, now is a good time to enlist your MS's support – because they also want yours! More info [email protected] or
tinyurl.com/52vzs4fu
tinyurl.com/52vzs4fu
Gmail
Gmail is email that’s intuitive, efficient, and useful. 15 GB of storage, less spam, and mobile access.
gmail.com
December 5, 2025 at 3:14 PM
Welsh Senedd Debate on ME/CFS next Wed 10 Dec. Debate on Motion 8884 to be led by Adam Price MS. With Senedd elections approaching fast, now is a good time to enlist your MS's support – because they also want yours! More info [email protected] or
tinyurl.com/52vzs4fu
tinyurl.com/52vzs4fu
Reposted by sarah boothby
MERUK sponsored a medical research virtual 'poster' competition at the IACFS/ME conference. Winners were Jolien Hendrix (epigenetic changes & autonomic dysfunction) and Anne Gardella (circulating cell-free RNA signatures).
tinyurl.com/nhc9y36u
tinyurl.com/nhc9y36u
December 9, 2025 at 1:27 PM
MERUK sponsored a medical research virtual 'poster' competition at the IACFS/ME conference. Winners were Jolien Hendrix (epigenetic changes & autonomic dysfunction) and Anne Gardella (circulating cell-free RNA signatures).
tinyurl.com/nhc9y36u
tinyurl.com/nhc9y36u
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/...