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
Alice reminded us that these bonds are world-making. They are the underground architecture that lets us survive a political order that treats disabled life as disposable. She insisted on holding disabled brilliance close, refusing the erasure capitalism demands.
November 16, 2025 at 12:08 AM
Alice reminded us that these bonds are world-making. They are the underground architecture that lets us survive a political order that treats disabled life as disposable. She insisted on holding disabled brilliance close, refusing the erasure capitalism demands.
The independent review of Social Work England (SWE) is open until 26 November.
SWE regulates Social Worker's in practice, to give the public (ie you and me) confidence in statutory social services.
Please contribute your experiences here consult.education.gov.uk/independent-...
SWE regulates Social Worker's in practice, to give the public (ie you and me) confidence in statutory social services.
Please contribute your experiences here consult.education.gov.uk/independent-...
Independent review for social work regulation: call for evidence
- Section 1 - About You
- Department for Education...
Find and participate in consultations run by the Department for Education
consult.education.gov.uk
November 15, 2025 at 3:25 PM
The independent review of Social Work England (SWE) is open until 26 November.
SWE regulates Social Worker's in practice, to give the public (ie you and me) confidence in statutory social services.
Please contribute your experiences here consult.education.gov.uk/independent-...
SWE regulates Social Worker's in practice, to give the public (ie you and me) confidence in statutory social services.
Please contribute your experiences here consult.education.gov.uk/independent-...
@vladvexler.bsky.social looking and sounding much, much better. I hope he has the capacity to share a health update with us.
Covid infections on top of pre-established #ME are leading to extreme exaccerbation of ME symptoms and breathing difficulties in many cases. Vlad's generosity, frankness
1/2
Covid infections on top of pre-established #ME are leading to extreme exaccerbation of ME symptoms and breathing difficulties in many cases. Vlad's generosity, frankness
1/2
November 15, 2025 at 8:35 AM
@vladvexler.bsky.social looking and sounding much, much better. I hope he has the capacity to share a health update with us.
Covid infections on top of pre-established #ME are leading to extreme exaccerbation of ME symptoms and breathing difficulties in many cases. Vlad's generosity, frankness
1/2
Covid infections on top of pre-established #ME are leading to extreme exaccerbation of ME symptoms and breathing difficulties in many cases. Vlad's generosity, frankness
1/2
Reposted by sarah boothby
If you are an Aboriginal and/or Torres Strait Islander person living with or caring for someone with #mecfs or #longcovid, we invite you to share your experiences to guide us in making our services more inclusive and community-led.
Take the survey: zurl.co/P92Z8
Take the survey: zurl.co/P92Z8
November 14, 2025 at 9:00 PM
If you are an Aboriginal and/or Torres Strait Islander person living with or caring for someone with #mecfs or #longcovid, we invite you to share your experiences to guide us in making our services more inclusive and community-led.
Take the survey: zurl.co/P92Z8
Take the survey: zurl.co/P92Z8
#pwME #LongCovid #ME One of the medical expressions I hate most: 'suboptimal'.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
November 14, 2025 at 6:49 PM
#pwME #LongCovid #ME One of the medical expressions I hate most: 'suboptimal'.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
It means 'we f-ked up and don't know what else to do' but nobody but the in-group medics know.
Angry. Yes, I am, still.
Living with unrelenting rage is tiring. Hopefully it is shortening my life expectancy.
Reposted by sarah boothby
Research by international team of researchers using samples from UK ME/CFS biobank
"Sex-related cardiometabolic differences in ME/CFS patients"
www.sciencedirect.com/science/arti...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"Sex-related cardiometabolic differences in ME/CFS patients"
www.sciencedirect.com/science/arti...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
October 24, 2025 at 1:03 AM
Research by international team of researchers using samples from UK ME/CFS biobank
"Sex-related cardiometabolic differences in ME/CFS patients"
www.sciencedirect.com/science/arti...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"Sex-related cardiometabolic differences in ME/CFS patients"
www.sciencedirect.com/science/arti...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@tomkindlon.bsky.social check your messages 😊
November 14, 2025 at 5:40 PM
@tomkindlon.bsky.social check your messages 😊
@meownersclub.bsky.social check your messages 🙏🏼
November 14, 2025 at 1:27 PM
@meownersclub.bsky.social check your messages 🙏🏼
@stephmcgovern.bsky.social good to hear you back on The Rest is Money. Has anyone looked into the relationship between organised crime and the rise in shoplifting since Covid?
I wanted to give evidence to Covid Enquiry on this but had come from a public hearing #MaeveInquest to meet 85% #LongCovid
I wanted to give evidence to Covid Enquiry on this but had come from a public hearing #MaeveInquest to meet 85% #LongCovid
November 14, 2025 at 1:14 PM
@stephmcgovern.bsky.social good to hear you back on The Rest is Money. Has anyone looked into the relationship between organised crime and the rise in shoplifting since Covid?
I wanted to give evidence to Covid Enquiry on this but had come from a public hearing #MaeveInquest to meet 85% #LongCovid
I wanted to give evidence to Covid Enquiry on this but had come from a public hearing #MaeveInquest to meet 85% #LongCovid
Reposted by sarah boothby
Link to watch: www.youtube.com/live/Ar0X_N3...
Hydration, Appetite, and Blood Sugar in POTS | #longCOVID
YouTube video by The Long Covid Clinic: What You CAN Do
www.youtube.com
October 31, 2025 at 11:42 AM
Link to watch: www.youtube.com/live/Ar0X_N3...
@decodemestudy.bsky.social
Right of reply
Right of reply
November 10, 2025 at 9:37 PM
@decodemestudy.bsky.social
Right of reply
Right of reply
Without going into detail, #pwME #LongCovid ME (because I do not want to inflame an already overly inflamed situtation) the extent of the treachery & exploitation of medical neglect in post infection diseases is EXTRAORDINARY.
People who start out being respectable become corruptible. Why? How? Why?
People who start out being respectable become corruptible. Why? How? Why?
November 10, 2025 at 7:51 PM
Without going into detail, #pwME #LongCovid ME (because I do not want to inflame an already overly inflamed situtation) the extent of the treachery & exploitation of medical neglect in post infection diseases is EXTRAORDINARY.
People who start out being respectable become corruptible. Why? How? Why?
People who start out being respectable become corruptible. Why? How? Why?
@ashleydaltonmp.bsky.social Please check your email for correspondence from me, sarah.boothby@ regarding ME/CFS: the Final Delivery Plan and medical expertise in ME. Copied to @gwynnemp.bsky.social, who knows some of the context, and the lead civil servant.
November 10, 2025 at 6:06 PM
@ashleydaltonmp.bsky.social Please check your email for correspondence from me, sarah.boothby@ regarding ME/CFS: the Final Delivery Plan and medical expertise in ME. Copied to @gwynnemp.bsky.social, who knows some of the context, and the lead civil servant.
@meactionuk.bsky.social @meassociation.org.uk please share to your networks. This is a genuine opportunity to influence national policy - especially on Adult Social Care and spurious Mental Health Act assessments (which are mostly led by Social Worker AMHPs).
🧵
Evidence to provide: did they refer to NICE G206? Did they include you in a ‘person-centred’ assessment about the level of care #pwME need to accommodate PEM, ie not a made up story to fit their own agenda?
Did they assess your unpaid carers need to remain in employment, education or training?
1/2
Evidence to provide: did they refer to NICE G206? Did they include you in a ‘person-centred’ assessment about the level of care #pwME need to accommodate PEM, ie not a made up story to fit their own agenda?
Did they assess your unpaid carers need to remain in employment, education or training?
1/2
November 6, 2025 at 9:19 AM
@meactionuk.bsky.social @meassociation.org.uk please share to your networks. This is a genuine opportunity to influence national policy - especially on Adult Social Care and spurious Mental Health Act assessments (which are mostly led by Social Worker AMHPs).
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
November 6, 2025 at 8:57 AM
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
I almost cried. My professional regulator, Social Work England, is being asked by the Department of Education to prove its worth.
I'm still a member but after what happened under "safeguarding" to Maeve in Devon and all that I've witnessed with other families nationwide since, it is not worth it.
I'm still a member but after what happened under "safeguarding" to Maeve in Devon and all that I've witnessed with other families nationwide since, it is not worth it.
November 5, 2025 at 6:20 PM
I almost cried. My professional regulator, Social Work England, is being asked by the Department of Education to prove its worth.
I'm still a member but after what happened under "safeguarding" to Maeve in Devon and all that I've witnessed with other families nationwide since, it is not worth it.
I'm still a member but after what happened under "safeguarding" to Maeve in Devon and all that I've witnessed with other families nationwide since, it is not worth it.
Now
Livestream starting today at 6pm GMT
@binitakane.bsky.social @helenoakleigh.bsky.social
It will be recorded if you can't join live.
@binitakane.bsky.social @helenoakleigh.bsky.social
It will be recorded if you can't join live.
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
November 5, 2025 at 6:04 PM
Now
I wish we had a Mooch in England UK @restispoliticsus.bsky.social
November 4, 2025 at 7:05 PM
I wish we had a Mooch in England UK @restispoliticsus.bsky.social
Today - Thursday
Join us tomorrow online at the Canadian Collaborative conference on Myalgic Encephalomyelitis (ME)! I will be talking a bit about Cognitive Dysfunction in ME and the lessons we have been learning from Long Covid research.
Free registration here: icancme.ca/research/202...
#ME #LongCovid
Free registration here: icancme.ca/research/202...
#ME #LongCovid
November 4, 2025 at 9:07 AM
Today - Thursday
Reposted by sarah boothby
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
November 3, 2025 at 3:51 PM
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
Reposted by sarah boothby
Join us tomorrow online at the Canadian Collaborative conference on Myalgic Encephalomyelitis (ME)! I will be talking a bit about Cognitive Dysfunction in ME and the lessons we have been learning from Long Covid research.
Free registration here: icancme.ca/research/202...
#ME #LongCovid
Free registration here: icancme.ca/research/202...
#ME #LongCovid
November 3, 2025 at 6:05 PM
Join us tomorrow online at the Canadian Collaborative conference on Myalgic Encephalomyelitis (ME)! I will be talking a bit about Cognitive Dysfunction in ME and the lessons we have been learning from Long Covid research.
Free registration here: icancme.ca/research/202...
#ME #LongCovid
Free registration here: icancme.ca/research/202...
#ME #LongCovid
Reposted by sarah boothby
New 'Resist' design available on Redbubble.
Resist with the tenacity of bindweed!
Available on most merch including wall art, stickers and t-shirts.
Sale on at the moment!
www.redbubble.com/i/t-shirt/Re...
#DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers
Resist with the tenacity of bindweed!
Available on most merch including wall art, stickers and t-shirts.
Sale on at the moment!
www.redbubble.com/i/t-shirt/Re...
#DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers
November 3, 2025 at 2:45 PM
New 'Resist' design available on Redbubble.
Resist with the tenacity of bindweed!
Available on most merch including wall art, stickers and t-shirts.
Sale on at the moment!
www.redbubble.com/i/t-shirt/Re...
#DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers
Resist with the tenacity of bindweed!
Available on most merch including wall art, stickers and t-shirts.
Sale on at the moment!
www.redbubble.com/i/t-shirt/Re...
#DisabledArtist #GiftIdeas #Illustration #Resist #Wildflowers
From my good friend Dr Asad Khan. Why do health and care professionals turn everyone taking infection control seriously into a neurotic? Why are there so many people labelled and self labelling as mentally ill?
November 3, 2025 at 3:07 PM
From my good friend Dr Asad Khan. Why do health and care professionals turn everyone taking infection control seriously into a neurotic? Why are there so many people labelled and self labelling as mentally ill?