Katy B
@katybrc.bsky.social
Myalgic Encephalomyelitis - M.E + POTS for 38 years
Donor to the UK MEcfs Biobank for 10 years & @DecodeMEstudy
Please watch http://dialogues-mecfs.co.uk/videos/
London, UK
No DMs please
#pwME
Donor to the UK MEcfs Biobank for 10 years & @DecodeMEstudy
Please watch http://dialogues-mecfs.co.uk/videos/
London, UK
No DMs please
#pwME
Save Savannah Victora-May
Prevent Another #ME Tragedy
Please keep Signing & Sharing the Petition
✍️🔁
c.org/ccd8GhpyTt
Prevent Another #ME Tragedy
Please keep Signing & Sharing the Petition
✍️🔁
c.org/ccd8GhpyTt
We Can Make an Impact.
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
c.org
February 18, 2026 at 2:24 PM
Save Savannah Victora-May
Prevent Another #ME Tragedy
Please keep Signing & Sharing the Petition
✍️🔁
c.org/ccd8GhpyTt
Prevent Another #ME Tragedy
Please keep Signing & Sharing the Petition
✍️🔁
c.org/ccd8GhpyTt
If there are any online protests scheduled to try to raise awareness & support for Savannah & call out Lewisham & Greenwich NHS Trust please do let us all know
Many #pwME feel helpless in the face of what's happening & we need support to organise an accessible protest
🪧📢🪧
Many #pwME feel helpless in the face of what's happening & we need support to organise an accessible protest
🪧📢🪧
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
February 16, 2026 at 4:02 PM
If there are any online protests scheduled to try to raise awareness & support for Savannah & call out Lewisham & Greenwich NHS Trust please do let us all know
Many #pwME feel helpless in the face of what's happening & we need support to organise an accessible protest
🪧📢🪧
Many #pwME feel helpless in the face of what's happening & we need support to organise an accessible protest
🪧📢🪧
Reposted by Katy B
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
February 16, 2026 at 5:54 AM
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.
archive.ph/J3Xv3
Reposted by Katy B
Our public services aren’t for a secretive profit-hungry US tech firm. Sign the petition to tell the Government to scrap all contracts with secretive US tech firm Palantir. you.38degrees.org.uk/petitions/st...
Stop Palantir taking over our public services!
Our public services aren’t for a secretive profit-hungry US tech firm. Sign the petition to tell the Government to scrap all contracts with secretive US tech firm Palantir.
you.38degrees.org.uk
February 13, 2026 at 12:28 PM
Our public services aren’t for a secretive profit-hungry US tech firm. Sign the petition to tell the Government to scrap all contracts with secretive US tech firm Palantir. you.38degrees.org.uk/petitions/st...
Reposted by Katy B
When people say “but what about the good policies” they fail to understand the anger these things produce. As someone living on benefits due to disability & *still trying* to get PIP, the attack on disability alone was so personal, so cruel, literally nothing they do now would make me trust them
1. Many here seem bemused by the anger and disappointment this government attracts. Please bear with me while I try to explain it.
Let’s begin with Gaza. Starmer’s complicity is one of the major reasons so many people are disillusioned.
rethinkingsecurityorguk.wpcomstaging.com/2025/10/07/i...
🧵
Let’s begin with Gaza. Starmer’s complicity is one of the major reasons so many people are disillusioned.
rethinkingsecurityorguk.wpcomstaging.com/2025/10/07/i...
🧵
Is our Government Complicit in Genocide?
The Genocide Convention imposes obligations on states and individuals not just to punish the crime of genocide but to actively prevent it. Two years into the war in Gaza and over 20 months since th…
rethinkingsecurityorguk.wpcomstaging.com
February 10, 2026 at 7:41 AM
When people say “but what about the good policies” they fail to understand the anger these things produce. As someone living on benefits due to disability & *still trying* to get PIP, the attack on disability alone was so personal, so cruel, literally nothing they do now would make me trust them
Reposted by Katy B
Labour front benchers scratch their heads and wonder why their base has collapsed, why so many people are disillusioned, frustrated, furious. I mean, what is it about pissing on every value and principle your party once upheld that alienates the electorate? Beats me. 🤔
February 13, 2026 at 10:32 AM
Labour front benchers scratch their heads and wonder why their base has collapsed, why so many people are disillusioned, frustrated, furious. I mean, what is it about pissing on every value and principle your party once upheld that alienates the electorate? Beats me. 🤔
The language used to describe the symptoms of #ME & experiences of #pwME does nothing but downplay & misrepresent what we experience
It's played straight into the hands of all those who deny & mislead about the truth - that #ME is a potentially fatal multi-system biomedical illness.
It's played straight into the hands of all those who deny & mislead about the truth - that #ME is a potentially fatal multi-system biomedical illness.
February 13, 2026 at 2:44 PM
"Disabled People Fightback" banner from People's History Museum 2014 from the exhibition 'Design & Disability' at
V&A Museum South Kensington, on now.
I live close to the V&A, would love to go, but like hundreds of thousands of #pwME am much too disabled.
V&A Museum South Kensington, on now.
I live close to the V&A, would love to go, but like hundreds of thousands of #pwME am much too disabled.
February 12, 2026 at 4:23 PM
"Disabled People Fightback" banner from People's History Museum 2014 from the exhibition 'Design & Disability' at
V&A Museum South Kensington, on now.
I live close to the V&A, would love to go, but like hundreds of thousands of #pwME am much too disabled.
V&A Museum South Kensington, on now.
I live close to the V&A, would love to go, but like hundreds of thousands of #pwME am much too disabled.
Reposted by Katy B
We have a poll out to decide on our spring read! There's some crackers to choose from:
- Unwell Women by Elinor Cleghorn
- Air-borne by Carl Zimmer
- Disfigured: On Fairy Tales, Disability & Making Space by Amanda Leduc
Just comment your choice!
Fable: tinyurl.com/3r2ctufh
- Unwell Women by Elinor Cleghorn
- Air-borne by Carl Zimmer
- Disfigured: On Fairy Tales, Disability & Making Space by Amanda Leduc
Just comment your choice!
Fable: tinyurl.com/3r2ctufh
February 12, 2026 at 3:50 PM
We have a poll out to decide on our spring read! There's some crackers to choose from:
- Unwell Women by Elinor Cleghorn
- Air-borne by Carl Zimmer
- Disfigured: On Fairy Tales, Disability & Making Space by Amanda Leduc
Just comment your choice!
Fable: tinyurl.com/3r2ctufh
- Unwell Women by Elinor Cleghorn
- Air-borne by Carl Zimmer
- Disfigured: On Fairy Tales, Disability & Making Space by Amanda Leduc
Just comment your choice!
Fable: tinyurl.com/3r2ctufh
Reposted by Katy B
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
February 12, 2026 at 12:17 PM
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
Reposted by Katy B
A few things I've read recently: Maryland supports Long Covid research, @anilvanderzee.bsky.social on CBT in the Netherlands, and thoughts on hope and chronic illness:
virology.ws/2026/02/11/t...
virology.ws/2026/02/11/t...
Trial By Error: Some Things I've Read Recently...Maryland Boosts LC Research, van der Zee on CBT, Thoughts on Hope and Chronic Illness | Virology Blog
By David Tuller, DrPH My rib injury sidelined me for a month. Now that I'm mostly better, I’ve been trying to get back up to speed and catch up with lo ...
virology.ws
February 11, 2026 at 5:16 AM
A few things I've read recently: Maryland supports Long Covid research, @anilvanderzee.bsky.social on CBT in the Netherlands, and thoughts on hope and chronic illness:
virology.ws/2026/02/11/t...
virology.ws/2026/02/11/t...
Reposted by Katy B
30 years later, the exact same argument was reproduced by Suzanne O‘Sullivan in her chapter on Long Covid in ‚The Age of Diagnosis‘, plucked out of thin air, for all I know: ok, some few people have real organic disease, but for the vast majority it’s psychosomatic. Yeah, right.
#LongCovid
#ME
#LongCovid
#ME
The Toronto Star. 11th February 1992.
Edward Shorter "...believes it's a waste of taxpayers' money to incessantly continue to give patients x-rays, blood tests, spinal taps or exploratory surgery if there is nothing wrong organically."
#mecfs #longcovid #lyme #cfsme
Edward Shorter "...believes it's a waste of taxpayers' money to incessantly continue to give patients x-rays, blood tests, spinal taps or exploratory surgery if there is nothing wrong organically."
#mecfs #longcovid #lyme #cfsme
February 11, 2026 at 9:51 AM
30 years later, the exact same argument was reproduced by Suzanne O‘Sullivan in her chapter on Long Covid in ‚The Age of Diagnosis‘, plucked out of thin air, for all I know: ok, some few people have real organic disease, but for the vast majority it’s psychosomatic. Yeah, right.
#LongCovid
#ME
#LongCovid
#ME
Reposted by Katy B
New study:
People with ME/CFS and Long COVID show a clear drop in how their bodies make energy after exertion.
This drop appears on repeat testing, and not just from being unfit.
People with ME/CFS and Long COVID show a clear drop in how their bodies make energy after exertion.
This drop appears on repeat testing, and not just from being unfit.
February 11, 2026 at 12:15 PM
New study:
People with ME/CFS and Long COVID show a clear drop in how their bodies make energy after exertion.
This drop appears on repeat testing, and not just from being unfit.
People with ME/CFS and Long COVID show a clear drop in how their bodies make energy after exertion.
This drop appears on repeat testing, and not just from being unfit.
Very grateful to @lucibee.bsky.social for this
Its shocking but not surprising that the decision was made to make the completion of the learning modules on #ME optional
We need to know who made this decision & why given that a huge number of us told the government that it must be mandatory
Its shocking but not surprising that the decision was made to make the completion of the learning modules on #ME optional
We need to know who made this decision & why given that a huge number of us told the government that it must be mandatory
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
🧵 1/n
🧵 1/n
February 10, 2026 at 3:11 PM
Very grateful to @lucibee.bsky.social for this
Its shocking but not surprising that the decision was made to make the completion of the learning modules on #ME optional
We need to know who made this decision & why given that a huge number of us told the government that it must be mandatory
Its shocking but not surprising that the decision was made to make the completion of the learning modules on #ME optional
We need to know who made this decision & why given that a huge number of us told the government that it must be mandatory
Reposted by Katy B
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
February 10, 2026 at 1:45 PM
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Reposted by Katy B
🧵In all the media chat around No 10, missing are disabled people against whom this government declared war within weeks of coming to power. Ministers and No 10 comms whipped up bigotry to justify welfare cuts that weren't in Labour's manifesto. Ableism is normalised now in a way not seen in decades.
February 9, 2026 at 12:47 PM
🧵In all the media chat around No 10, missing are disabled people against whom this government declared war within weeks of coming to power. Ministers and No 10 comms whipped up bigotry to justify welfare cuts that weren't in Labour's manifesto. Ableism is normalised now in a way not seen in decades.
Reposted by Katy B
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
🧵 1/n
🧵 1/n
February 9, 2026 at 3:57 PM
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
🧵 1/n
🧵 1/n
Reposted by Katy B
@ashleydaltonmp.bsky.social @tessamunt.bsky.social this is why Savannah is starving to death inside an NHS hospital right now.
A voluntary e-learning course was never going to cut it.
33/611000 doctors & nurses in NHS = 0.005% of NHS staff now with basic awareness of severe #ME/CFS.
It's farcical.
A voluntary e-learning course was never going to cut it.
33/611000 doctors & nurses in NHS = 0.005% of NHS staff now with basic awareness of severe #ME/CFS.
It's farcical.
5/n
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
February 9, 2026 at 5:05 PM
@ashleydaltonmp.bsky.social @tessamunt.bsky.social this is why Savannah is starving to death inside an NHS hospital right now.
A voluntary e-learning course was never going to cut it.
33/611000 doctors & nurses in NHS = 0.005% of NHS staff now with basic awareness of severe #ME/CFS.
It's farcical.
A voluntary e-learning course was never going to cut it.
33/611000 doctors & nurses in NHS = 0.005% of NHS staff now with basic awareness of severe #ME/CFS.
It's farcical.
Reposted by Katy B
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
February 10, 2026 at 9:35 AM
‘Let me blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire.’
Reposted by Katy B
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
February 5, 2026 at 5:37 PM
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
In our feedback on the #DeliveryPlan for #ME Im sure that the majority of us who completed the❓aire were very clear about why its imperative that all reeducation in #ME for Drs & HCPs be mandatory, we've been ignored again & the consequences mean nothing will change for #pwME
@tessamunt.bsky.social
@tessamunt.bsky.social
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...
🧵 1/n
🧵 1/n
February 10, 2026 at 11:35 AM
In our feedback on the #DeliveryPlan for #ME Im sure that the majority of us who completed the❓aire were very clear about why its imperative that all reeducation in #ME for Drs & HCPs be mandatory, we've been ignored again & the consequences mean nothing will change for #pwME
@tessamunt.bsky.social
@tessamunt.bsky.social
Reposted by Katy B
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
February 10, 2026 at 11:07 AM
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Hundreds of thousands of #pwME & #LC have been forced to live at the very edge of their suffering, their pain & their courage because a few powerful people chose to abandon their professional responsibilities, their morals & their humanity.
#ME #BPSCabal #MedEd #MEAwareness
#ME #BPSCabal #MedEd #MEAwareness
February 9, 2026 at 10:17 AM
Reposted by Katy B
From ME Research UK:
Research of ten implicates herpesviruses in ME/CFS. Read about a study published this month that analysed antibodies to herpesviruses proteins in a disease cohort vs healthy controls: tinyurl.com/t8tpw8sz
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Research of ten implicates herpesviruses in ME/CFS. Read about a study published this month that analysed antibodies to herpesviruses proteins in a disease cohort vs healthy controls: tinyurl.com/t8tpw8sz
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
February 8, 2026 at 6:23 PM
From ME Research UK:
Research of ten implicates herpesviruses in ME/CFS. Read about a study published this month that analysed antibodies to herpesviruses proteins in a disease cohort vs healthy controls: tinyurl.com/t8tpw8sz
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Research of ten implicates herpesviruses in ME/CFS. Read about a study published this month that analysed antibodies to herpesviruses proteins in a disease cohort vs healthy controls: tinyurl.com/t8tpw8sz
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted by Katy B
The next Young EMERG young/early-career workshop for ME
25-26 May 2026
youngemerg.com/yemerguk26
#mecfs #research @youngemerg.bsky.social @euromeresearch.bsky.social
25-26 May 2026
youngemerg.com/yemerguk26
#mecfs #research @youngemerg.bsky.social @euromeresearch.bsky.social
February 8, 2026 at 10:42 AM
The next Young EMERG young/early-career workshop for ME
25-26 May 2026
youngemerg.com/yemerguk26
#mecfs #research @youngemerg.bsky.social @euromeresearch.bsky.social
25-26 May 2026
youngemerg.com/yemerguk26
#mecfs #research @youngemerg.bsky.social @euromeresearch.bsky.social