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
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.
Reposted by sarah boothby
Powerful piece by @drrachelclarke.com on the COVID inquiry. Those who say it’s easy to be wise in hindsight are being utterly disingenuous. Many of us spoke out at the time, and it’s in the public record.
@independentsage.bsky.social
observer.co.uk/news/nationa...
@independentsage.bsky.social
observer.co.uk/news/nationa...
I’ll never forget the horror of the Covid wards | The Observer
observer.co.uk
November 23, 2025 at 8:02 AM
Powerful piece by @drrachelclarke.com on the COVID inquiry. Those who say it’s easy to be wise in hindsight are being utterly disingenuous. Many of us spoke out at the time, and it’s in the public record.
@independentsage.bsky.social
observer.co.uk/news/nationa...
@independentsage.bsky.social
observer.co.uk/news/nationa...
"I have seen study designs adapted to accommodate the patients' needs, by having a calm room to lay down and allowing for breaks, or by visiting patients at home, or sending the questionnaire days in advance"
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
Cochrane: 'Community voices: Meet Guyane'
'I used to be an archaeologist, before being disabled by a SARS-COV-2 infection in early 2021. I rapidly saw the lack of resources and knowledge in post-infectious diseases like Long COVID and got involved...'
www.cochrane.org/about-us/new...
'I used to be an archaeologist, before being disabled by a SARS-COV-2 infection in early 2021. I rapidly saw the lack of resources and knowledge in post-infectious diseases like Long COVID and got involved...'
www.cochrane.org/about-us/new...
November 22, 2025 at 3:33 PM
"I have seen study designs adapted to accommodate the patients' needs, by having a calm room to lay down and allowing for breaks, or by visiting patients at home, or sending the questionnaire days in advance"
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
Cochrane: 'Community voices: Meet Guyane'
'I used to be an archaeologist, before being disabled by a SARS-COV-2 infection in early 2021. I rapidly saw the lack of resources and knowledge in post-infectious diseases like Long COVID and got involved...'
www.cochrane.org/about-us/new...
'I used to be an archaeologist, before being disabled by a SARS-COV-2 infection in early 2021. I rapidly saw the lack of resources and knowledge in post-infectious diseases like Long COVID and got involved...'
www.cochrane.org/about-us/new...
Community voices: Meet Guyane | Cochrane
www.cochrane.org
November 22, 2025 at 3:32 PM
"I have seen study designs adapted to accommodate the patients' needs, by having a calm room to lay down and allowing for breaks, or by visiting patients at home, or sending the questionnaire days in advance"
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
@hildabast.bsky.social was ME research not worthy of similar PPI in study design?
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Questionnaire | page 1
www.soscisurvey.de
November 22, 2025 at 8:36 AM
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Reposted by sarah boothby
Hypothesis: Lockdown could have been avoided if there’d been an early mask mandate.
November 20, 2025 at 8:44 PM
Hypothesis: Lockdown could have been avoided if there’d been an early mask mandate.
Reposted by sarah boothby
Yes agree. For many I know, the more NHS clinic ‘guidance’ you get, the sicker you get. Even for Mild and Moderate.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
November 20, 2025 at 11:41 PM
Yes agree. For many I know, the more NHS clinic ‘guidance’ you get, the sicker you get. Even for Mild and Moderate.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
I avoid contact as far as possible whilst there’s nothing worth visiting for.
Reposted by sarah boothby
Yes. MPs referred to ‘stigma’ but when will someone call the BPSM what IT IS?
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
November 20, 2025 at 11:43 PM
Yes. MPs referred to ‘stigma’ but when will someone call the BPSM what IT IS?
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
The BPS model is careerist-psychiatrists with a ridiculous belief in ‘infectious ideas’ calling seriously ill people malingerers+continuing to do that for decades IN THE FACE OF CONFOUNDING EVIDENCE AND ONGOING DEATHS
Reposted by sarah boothby
It's not "less" though. NHS provision is positively harmful for #pwME (unless you are a psych patient wrongly diagnosed) because there is 0 patient safety advice in:
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
November 20, 2025 at 11:29 PM
It's not "less" though. NHS provision is positively harmful for #pwME (unless you are a psych patient wrongly diagnosed) because there is 0 patient safety advice in:
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
NG206;
every UK ME org;
NHS e-Learning;
ME specialist docs in Harley Street;
DHSC FDP.
Patient safety in ME costs £0
#pwME Glad I attended the debate in person yesterday. None of the speakers captured the reality of DHSC/NHS 'care' for anyone with #ME in England @tessamunt.bsky.social.
Getting the FDP into shape is the latest version of DIY for ME & #LongCovid ie deliberate hot air from the Minister.
Justice4ME.uk
Getting the FDP into shape is the latest version of DIY for ME & #LongCovid ie deliberate hot air from the Minister.
Justice4ME.uk
Justice4ME.uk
November 20, 2025 at 8:21 AM
#pwME Glad I attended the debate in person yesterday. None of the speakers captured the reality of DHSC/NHS 'care' for anyone with #ME in England @tessamunt.bsky.social.
Getting the FDP into shape is the latest version of DIY for ME & #LongCovid ie deliberate hot air from the Minister.
Justice4ME.uk
Getting the FDP into shape is the latest version of DIY for ME & #LongCovid ie deliberate hot air from the Minister.
Justice4ME.uk
Reposted by sarah boothby
It was either at a Gibson Inquiry meeting or an APPG nearly twenty years ago that I attended where an MP was asked why (then) Canadian guidelines weren't being adopted in the UK.
The answer was 'because they're not British'.
The answer was 'because they're not British'.
November 19, 2025 at 11:02 AM
It was either at a Gibson Inquiry meeting or an APPG nearly twenty years ago that I attended where an MP was asked why (then) Canadian guidelines weren't being adopted in the UK.
The answer was 'because they're not British'.
The answer was 'because they're not British'.
I think what it shows is how our national institutions are failing #pwME - as demonstrated by the PFD report following #MaeveInquest in 2024.
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
November 19, 2025 at 10:55 AM
I think what it shows is how our national institutions are failing #pwME - as demonstrated by the PFD report following #MaeveInquest in 2024.
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Nothing has changed since the PFD, afaik, but reinforcement of systemic failings described/quoted in government led Final Delivery Plan - and Justice4ME.uk
Reposted by sarah boothby
Also just found the briefing for the debate, and errr, well, it is infuriating.
They've assigned 1.4m research funding on *checking the cost effectiveness of the current bacme 'services'*
wtf happened to psp-me.co.uk/explore-the-...
They've assigned 1.4m research funding on *checking the cost effectiveness of the current bacme 'services'*
wtf happened to psp-me.co.uk/explore-the-...
Government support for people with myalgic encephalomyelitis
There will be a 60 minute Westminster Hall debate on government support for people with myalgic encephalomyelitis on Wednesday 19 November at 4:30pm. This debate will be led by Tessa Munt MP.
commonslibrary.parliament.uk
November 19, 2025 at 10:39 AM
Also just found the briefing for the debate, and errr, well, it is infuriating.
They've assigned 1.4m research funding on *checking the cost effectiveness of the current bacme 'services'*
wtf happened to psp-me.co.uk/explore-the-...
They've assigned 1.4m research funding on *checking the cost effectiveness of the current bacme 'services'*
wtf happened to psp-me.co.uk/explore-the-...
A lot of criticisms circulating about rehabilitation and #ME have their roots in pre Covid medical knowledge.
We all knew the pandemic would be a game changer for #pwME. To learn a little about how attend, if you can, Todd Davenport's fireside chat. 21 November, 11am-1pm EST. Details in the graphic
We all knew the pandemic would be a game changer for #pwME. To learn a little about how attend, if you can, Todd Davenport's fireside chat. 21 November, 11am-1pm EST. Details in the graphic
November 19, 2025 at 10:33 AM
#pwME Tessa Munt (pls excuse my typos!!) scheduled for 4.30pm today. Link to parliament live tv below.
3pm today Westminster Hall debate on ME, led by Tessa Hunt, live on Parliament TV www.parliamentlive.tv/Event/Index/...
Parliamentlive.tv
Westminster Hall
www.parliamentlive.tv
November 19, 2025 at 10:23 AM
#pwME Tessa Munt (pls excuse my typos!!) scheduled for 4.30pm today. Link to parliament live tv below.
Reposted by sarah boothby
I think the section on ME isn't scheduled to start til 16:30
November 19, 2025 at 10:18 AM
I think the section on ME isn't scheduled to start til 16:30
3pm today Westminster Hall debate on ME, led by Tessa Hunt, live on Parliament TV www.parliamentlive.tv/Event/Index/...
Parliamentlive.tv
Westminster Hall
www.parliamentlive.tv
November 19, 2025 at 10:07 AM
3pm today Westminster Hall debate on ME, led by Tessa Hunt, live on Parliament TV www.parliamentlive.tv/Event/Index/...