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
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)
Reposted by sarah boothby
No surprises there, not that the new guidelines do that much (which I wouldn't even know as I've been waiting for 4 years for an ongoing appointment at my ME 'service' while continually telling my GP I'm progressively deteriorating!).
November 29, 2025 at 9:49 AM
No surprises there, not that the new guidelines do that much (which I wouldn't even know as I've been waiting for 4 years for an ongoing appointment at my ME 'service' while continually telling my GP I'm progressively deteriorating!).
From Crunch ME (26/11/25)
November 29, 2025 at 1:47 AM
From Crunch ME (26/11/25)
The BS in NICE G206 on nutritional support denies reality. #pwvsME survive on TPN for years. At home. Poorly but raising children & very much NOT willing to die without a fight.
Why refuse to inform HCP of facts?
What makes a 'position' more credible than reality? For those kids. Well?
Bring it on.
Why refuse to inform HCP of facts?
What makes a 'position' more credible than reality? For those kids. Well?
Bring it on.
November 29, 2025 at 12:37 AM
The BS in NICE G206 on nutritional support denies reality. #pwvsME survive on TPN for years. At home. Poorly but raising children & very much NOT willing to die without a fight.
Why refuse to inform HCP of facts?
What makes a 'position' more credible than reality? For those kids. Well?
Bring it on.
Why refuse to inform HCP of facts?
What makes a 'position' more credible than reality? For those kids. Well?
Bring it on.
#pwME #LongCovidME #Close2ME
You are incredible: everyone now knows someone with #ME (#MyalgicEncephalomyelitis) but few know what it means.
Stay strong, stay focussed on reducing PEM, and know you are not forgotten.
Medicine is excruciatingly conservative but change is coming. Too slowly but surely
You are incredible: everyone now knows someone with #ME (#MyalgicEncephalomyelitis) but few know what it means.
Stay strong, stay focussed on reducing PEM, and know you are not forgotten.
Medicine is excruciatingly conservative but change is coming. Too slowly but surely
November 29, 2025 at 12:29 AM
#pwME #LongCovidME #Close2ME
You are incredible: everyone now knows someone with #ME (#MyalgicEncephalomyelitis) but few know what it means.
Stay strong, stay focussed on reducing PEM, and know you are not forgotten.
Medicine is excruciatingly conservative but change is coming. Too slowly but surely
You are incredible: everyone now knows someone with #ME (#MyalgicEncephalomyelitis) but few know what it means.
Stay strong, stay focussed on reducing PEM, and know you are not forgotten.
Medicine is excruciatingly conservative but change is coming. Too slowly but surely
Reposted by sarah boothby
Being a caregiver often means putting another person’s needs first. @emergeaustralia.bsky.social's Self-Care for Carers guide offers strategies to help protect and balance their own wellbeing.
🩵 Read it here 👉 https://bit.ly/47xsysl
#mecfs #caregiverawarenessmonth #unitedforme
🩵 Read it here 👉 https://bit.ly/47xsysl
#mecfs #caregiverawarenessmonth #unitedforme
November 28, 2025 at 9:19 PM
Being a caregiver often means putting another person’s needs first. @emergeaustralia.bsky.social's Self-Care for Carers guide offers strategies to help protect and balance their own wellbeing.
🩵 Read it here 👉 https://bit.ly/47xsysl
#mecfs #caregiverawarenessmonth #unitedforme
🩵 Read it here 👉 https://bit.ly/47xsysl
#mecfs #caregiverawarenessmonth #unitedforme
Reposted by sarah boothby
Hoping @restispolitics.bsky.social
will cover this shocking story
of the BBC quivering rather
than staying true to its purpose
especially in The Reith Lecture.
Tim Schnyder’s Rule -
don’t obey in advance
is being totally ignored
by the BBC along with so many
in the US
will cover this shocking story
of the BBC quivering rather
than staying true to its purpose
especially in The Reith Lecture.
Tim Schnyder’s Rule -
don’t obey in advance
is being totally ignored
by the BBC along with so many
in the US
NEWS --> BBC confirms to me that they did edit a line out of historian @rutgerbregman.com's speech. It called Trump "the most openly corrupt president in US history."
BBC also confirms this was done on the advice of lawyers. So Trump's threats worked.
New piece:
newrepublic.com/article/2036...
BBC also confirms this was done on the advice of lawyers. So Trump's threats worked.
New piece:
newrepublic.com/article/2036...
Trump’s Fury at BBC Gets Unnerving Results with Pro-MAGA Edit Stunner
First, British Broadcasting Corporation execs resigned after Trump complained about a segment. Now the BBC edited out a line from a historian that was critical of Trump. Where does this end?
newrepublic.com
November 25, 2025 at 5:10 PM
Hoping @restispolitics.bsky.social
will cover this shocking story
of the BBC quivering rather
than staying true to its purpose
especially in The Reith Lecture.
Tim Schnyder’s Rule -
don’t obey in advance
is being totally ignored
by the BBC along with so many
in the US
will cover this shocking story
of the BBC quivering rather
than staying true to its purpose
especially in The Reith Lecture.
Tim Schnyder’s Rule -
don’t obey in advance
is being totally ignored
by the BBC along with so many
in the US
Reposted by sarah boothby
Introducing “Energy Limiting
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
www.scienceopen.com
November 24, 2025 at 6:15 PM
Introducing “Energy Limiting
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Conditions”
The Emergence and Evolution of a New Impairment
Concept
Catherine Hale
Independent Researcher, UK
Dr Anna Ruddock
Independent Researcher, UK
Ana Bê
Senior Lecturer in Disability Studies, Liverpool Hope University, Liverpool, UK
#ME/CFS #LongCOVID
Reposted by sarah boothby
journalists asking cabinet ministers why there’s so much chaotic crazed speculation about the Budget might want to question their own role in this
November 24, 2025 at 6:43 PM
journalists asking cabinet ministers why there’s so much chaotic crazed speculation about the Budget might want to question their own role in this
Reposted by sarah boothby
7/ The proportion of people who go on to develop Long Covid remains uncertain, but WHO estimates 10–20% of infected people may be affected.
This is a large-scale public health crisis that demands governtment coordinated action.
This is a large-scale public health crisis that demands governtment coordinated action.
November 24, 2025 at 3:40 PM
7/ The proportion of people who go on to develop Long Covid remains uncertain, but WHO estimates 10–20% of infected people may be affected.
This is a large-scale public health crisis that demands governtment coordinated action.
This is a large-scale public health crisis that demands governtment coordinated action.
Reposted by sarah boothby
Too many have waited years for informed care. BHC’s Access to Care Model brings multidisciplinary evaluation, personalized plans, collaboration, and real support closer to home.
Learn more: https://bit.ly/3Xf1SIf
#BuildingAccessNow
Learn more: https://bit.ly/3Xf1SIf
#BuildingAccessNow
November 24, 2025 at 6:21 PM
Too many have waited years for informed care. BHC’s Access to Care Model brings multidisciplinary evaluation, personalized plans, collaboration, and real support closer to home.
Learn more: https://bit.ly/3Xf1SIf
#BuildingAccessNow
Learn more: https://bit.ly/3Xf1SIf
#BuildingAccessNow
Reposted by sarah boothby
It’s a little better in the US. There a couple ME centers and the Drs here are not locked into national protocols. You might be able to convince your GP Dr by giving them research articles to read. My was willing to try LDN based on info from me. They don’t know much but some are open minded. Some.
November 24, 2025 at 5:12 PM
It’s a little better in the US. There a couple ME centers and the Drs here are not locked into national protocols. You might be able to convince your GP Dr by giving them research articles to read. My was willing to try LDN based on info from me. They don’t know much but some are open minded. Some.
Reposted by sarah boothby
Plus my insurance allows for self referral to specialists. That’s not true for everyone unfortunately, but I have been able to find helpful Drs by searching all over the country. I live in PA but have to FL for an ME literate Dr. luckily I can manage that.
November 24, 2025 at 5:16 PM
Plus my insurance allows for self referral to specialists. That’s not true for everyone unfortunately, but I have been able to find helpful Drs by searching all over the country. I live in PA but have to FL for an ME literate Dr. luckily I can manage that.
Reposted by sarah boothby
Done. Is it just me or do all of these questionnaires just seem to miss the point? I live a world of such extremes. The peril from the most innocuous task can be severe, other days I accomplish a lot. It’s so hard to answer. Also, the difference between 1 football field and 10 seems like from here
November 23, 2025 at 6:21 AM
Done. Is it just me or do all of these questionnaires just seem to miss the point? I live a world of such extremes. The peril from the most innocuous task can be severe, other days I accomplish a lot. It’s so hard to answer. Also, the difference between 1 football field and 10 seems like from here
Reposted by sarah boothby
To the moon! How can both be in the same category? Same for standing 5 min vs the next option of 30 min? Increments of 1 minute are more applicable for me. Every day, every symptom, every crash trigger is so different I can’t average it out. Sorry, it’s just so frustrating.
November 23, 2025 at 6:21 AM
To the moon! How can both be in the same category? Same for standing 5 min vs the next option of 30 min? Increments of 1 minute are more applicable for me. Every day, every symptom, every crash trigger is so different I can’t average it out. Sorry, it’s just so frustrating.