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
Reposted by Katy B
Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
Researcher Access | DecodeME : The world's largest ME/CFS study | Institute of Genetics and Cancer
To accelerate research towards possible diagnostic tests and treatments for ME/CFS, DecodeME has built the world’s largest data set on ME/CFS, as a managed access resource for future research projects...
institute-genetics-cancer.ed.ac.uk
December 17, 2025 at 8:43 AM
Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
Reposted by Katy B
Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS
We're looking for:
A keen, experienced Research Nurse
A gifted molecular immunologist with a strong bioinformatics background
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk/.../descript....
We're looking for:
A keen, experienced Research Nurse
A gifted molecular immunologist with a strong bioinformatics background
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk
December 18, 2025 at 10:48 AM
Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS
We're looking for:
A keen, experienced Research Nurse
A gifted molecular immunologist with a strong bioinformatics background
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk/.../descript....
We're looking for:
A keen, experienced Research Nurse
A gifted molecular immunologist with a strong bioinformatics background
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk/.../descript....
It would be really good to know when
@ashleydaltonmp.bsky.social plans to meet
@tessamunt.bsky.social &
@joplatt.bsky.social, as promised, to discuss the Delivery Plan for #ME 🗓️
Hundreds for thousands of #pwME are still waiting..
🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌
@ashleydaltonmp.bsky.social plans to meet
@tessamunt.bsky.social &
@joplatt.bsky.social, as promised, to discuss the Delivery Plan for #ME 🗓️
Hundreds for thousands of #pwME are still waiting..
🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌
January 5, 2026 at 1:37 PM
It would be really good to know when
@ashleydaltonmp.bsky.social plans to meet
@tessamunt.bsky.social &
@joplatt.bsky.social, as promised, to discuss the Delivery Plan for #ME 🗓️
Hundreds for thousands of #pwME are still waiting..
🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌
@ashleydaltonmp.bsky.social plans to meet
@tessamunt.bsky.social &
@joplatt.bsky.social, as promised, to discuss the Delivery Plan for #ME 🗓️
Hundreds for thousands of #pwME are still waiting..
🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌🛌
Reposted by Katy B
2026. 6 years after the start of COVID. 6 years of Long Covid.
Not a single bit of progress has been made. Not even one. Nothing has been learned. The medical profession has not produced a single answer, solution, or even improved anything.
Still mass gaslighting and denial. Pure systemic failure.
Not a single bit of progress has been made. Not even one. Nothing has been learned. The medical profession has not produced a single answer, solution, or even improved anything.
Still mass gaslighting and denial. Pure systemic failure.
January 1, 2026 at 3:33 PM
2026. 6 years after the start of COVID. 6 years of Long Covid.
Not a single bit of progress has been made. Not even one. Nothing has been learned. The medical profession has not produced a single answer, solution, or even improved anything.
Still mass gaslighting and denial. Pure systemic failure.
Not a single bit of progress has been made. Not even one. Nothing has been learned. The medical profession has not produced a single answer, solution, or even improved anything.
Still mass gaslighting and denial. Pure systemic failure.
Wishing every #pwME & #LongCovid, our allies & advocates the very best possible 2026
Thank you all so much for being here
Sending 💙 to you all
Thank you all so much for being here
Sending 💙 to you all
January 1, 2026 at 1:04 PM
Wishing every #pwME & #LongCovid, our allies & advocates the very best possible 2026
Thank you all so much for being here
Sending 💙 to you all
Thank you all so much for being here
Sending 💙 to you all
Reposted by Katy B
The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.
December 22nd. Thank you for being #ThereForME, Sir Ed Davey & the Lib Dems @libdems.org.uk!
This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social ✨
This year the LibDems have been key players championing the need for improved support for people with ME in parliament. Nominated by Jonah Weisz @weiszguy.bsky.social ✨
December 22, 2025 at 11:56 PM
The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.
Reposted by Katy B
December 23rd. Thank you for being #ThereForME, Jenny Wilson!
Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨
Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨
December 23, 2025 at 9:00 AM
December 23rd. Thank you for being #ThereForME, Jenny Wilson!
Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨
Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s ME clinic. Nominated by Phoebe. ✨
Reposted by Katy B
Is the government going to sit and watch while the #PalestineAction hunger strikers die? Is most of the media going to carry on ignoring them? Just how callous has the Establishment become?
www.theguardian.com/uk-news/2025...
www.theguardian.com/uk-news/2025...
Families of Palestine Action hunger strikers seek urgent meeting with Lammy
Justice secretary urged to ‘show a bit of humanity’ with protesters severely ill after refusing food for weeks
www.theguardian.com
December 23, 2025 at 7:58 AM
Is the government going to sit and watch while the #PalestineAction hunger strikers die? Is most of the media going to carry on ignoring them? Just how callous has the Establishment become?
www.theguardian.com/uk-news/2025...
www.theguardian.com/uk-news/2025...
Thinking of all the #pwME who are alone over Christmas & New Year, who wont be able to see family & friends
I'm so very sorry
Please know that you aren't forgotten, some of us will still be here online & we can get through this time together, as we always do
Sending love🌟💙🌟
I'm so very sorry
Please know that you aren't forgotten, some of us will still be here online & we can get through this time together, as we always do
Sending love🌟💙🌟
December 23, 2025 at 10:56 AM
Thinking of all the #pwME who are alone over Christmas & New Year, who wont be able to see family & friends
I'm so very sorry
Please know that you aren't forgotten, some of us will still be here online & we can get through this time together, as we always do
Sending love🌟💙🌟
I'm so very sorry
Please know that you aren't forgotten, some of us will still be here online & we can get through this time together, as we always do
Sending love🌟💙🌟
Reposted by Katy B
The story of Farage and Putin, told by British-Ukrainian soldier Shaun Pinner on a destroyed apartment block in Kyiv.
December 19, 2025 at 4:54 PM
The story of Farage and Putin, told by British-Ukrainian soldier Shaun Pinner on a destroyed apartment block in Kyiv.
Reposted by Katy B
🧵PUBLIC HEALTH SHOULD NOT BE A CULTURE WAR
😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid.
The Guardian are asking for opinions on masking 🖇️👇 /1
😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid.
The Guardian are asking for opinions on masking 🖇️👇 /1
December 11, 2025 at 9:56 AM
🧵PUBLIC HEALTH SHOULD NOT BE A CULTURE WAR
😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid.
The Guardian are asking for opinions on masking 🖇️👇 /1
😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid.
The Guardian are asking for opinions on masking 🖇️👇 /1
Reposted by Katy B
There is one overriding political problem, from which all others follow. Until it is addressed, every policy advanced by governments is window dressing.
www.theguardian.com/inequality/2...
www.theguardian.com/inequality/2...
Just 0.001% hold three times the wealth of poorest half of humanity, report finds
Data from World Inequality Report also showed top 10% of income-earners earn more than the other 90%
www.theguardian.com
December 10, 2025 at 7:09 AM
There is one overriding political problem, from which all others follow. Until it is addressed, every policy advanced by governments is window dressing.
www.theguardian.com/inequality/2...
www.theguardian.com/inequality/2...
Reposted by Katy B
My reflections after today’s APPG ME meeting….
‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!
‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!
December 10, 2025 at 10:21 PM
My reflections after today’s APPG ME meeting….
‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!
‘As we look to 2026, it’s clear that there’s plenty that needs MPs’ engagement. Across the ME community there’s so much shared lived experience and analysis to inform the work that we do. So, let’s get on with it! Let’s all work together next year!
Reposted by Katy B
December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social!
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
December 17, 2025 at 9:00 AM
December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social!
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
Reposted by Katy B
Another very deserving entry in our advent calendar!
Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏
Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏
December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social!
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨
December 17, 2025 at 9:08 AM
Another very deserving entry in our advent calendar!
Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏
Thanks @georgemonbiot.bsky.social for everything you’ve done to bring the issue to light and uncover the #GreatestMedicalScandal 🙏
Reposted by Katy B
So excited to share our new article on energy limiting conditions (ELC) and energy impairment in @ijdsj.bsky.social with Anna Ruddock and Ana Be. Open access www.scienceopen.com/hosted-docum...
It discusses the emancipatory research process that gave rise to these terms >>
It discusses the emancipatory research process that gave rise to these terms >>
November 19, 2025 at 9:46 PM
So excited to share our new article on energy limiting conditions (ELC) and energy impairment in @ijdsj.bsky.social with Anna Ruddock and Ana Be. Open access www.scienceopen.com/hosted-docum...
It discusses the emancipatory research process that gave rise to these terms >>
It discusses the emancipatory research process that gave rise to these terms >>
Reposted by Katy B
Or maybe diagnosis is at last catching up with the crises so many have been enduring, which have for so long been minimised, dismissed or ignored.
share.google/1aKjHRJ596x6...
share.google/1aKjHRJ596x6...
Wes Streeting orders inquiry into mental health ‘overdiagnosis’
Health secretary wants clinical review of the rise in conditions such as ADHD and autism that cause people to drop out of the workforce
share.google
December 4, 2025 at 8:41 AM
Or maybe diagnosis is at last catching up with the crises so many have been enduring, which have for so long been minimised, dismissed or ignored.
share.google/1aKjHRJ596x6...
share.google/1aKjHRJ596x6...
Reposted by Katy B
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
The most detailed genetic analysis of myalgic encephalomyelitis ever conducted
Groundbreaking ME study identifies 250+ genes, links with long COVID, and uncovers new drug repurposing opportunities to advance targeted treatments
precisionlife.com
December 4, 2025 at 10:23 AM
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Reposted by Katy B
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
December 4, 2025 at 8:00 AM
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
Reposted by Katy B
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 8:13 AM
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
The most detailed genetic analysis of myalgic encephalomyelitis ever conducted
Groundbreaking ME study identifies 250+ genes, links with long COVID, and uncovers new drug repurposing opportunities to advance targeted treatments
precisionlife.com
December 4, 2025 at 10:23 AM
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Utterly heartbreaking to hear that 20yr old #pwME Ella Copley has died
Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her
@tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME
Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her
@tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME
December 2, 2025 at 4:11 PM
Utterly heartbreaking to hear that 20yr old #pwME Ella Copley has died
Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her
@tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME
Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her
@tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME
Reposted by Katy B
Sovereignty? Democracy? Sorry, but we can't afford those anymore. We'll be sued if we try to defend them.
This week's column is about a massive but scarcely-covered scandal.
www.theguardian.com/commentisfre...
This week's column is about a massive but scarcely-covered scandal.
www.theguardian.com/commentisfre...
Hello, foreign oligarchs and corporations! Please come and sue the UK for billions | George Monbiot
The case of a planned Cumbrian coalmine shows how governments around the world are being threatened by litigation in shadowy offshore courts, says Guardian columnist George Monbiot
www.theguardian.com
December 1, 2025 at 10:12 AM
Sovereignty? Democracy? Sorry, but we can't afford those anymore. We'll be sued if we try to defend them.
This week's column is about a massive but scarcely-covered scandal.
www.theguardian.com/commentisfre...
This week's column is about a massive but scarcely-covered scandal.
www.theguardian.com/commentisfre...
Reposted by Katy B
Available to buy now: One Red Leaf at a Time Greetings Cards.
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis
Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.
theredtreeandme.substack.com
November 16, 2025 at 12:36 PM
Available to buy now: One Red Leaf at a Time Greetings Cards.
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
Reposted by Katy B
This accidentally turned into a short thread. Bit of a rage-thread I'm afraid. Please read to the end if you can. Thanks
Once every 20 years or so, the director-general of the BBC is forced to resign for being insufficiently rightwing. Alastair Milne in 1987. Greg Dyke in 2004. Tim Davie in 2025. The great irony is that the BBC was in all cases profoundly biased towards established power. But just not biased enough …
November 10, 2025 at 6:16 AM
This accidentally turned into a short thread. Bit of a rage-thread I'm afraid. Please read to the end if you can. Thanks