Katy B
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katybrc.bsky.social
Katy B
@katybrc.bsky.social
1.5K followers 1.2K following 170 posts
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
Posts Replies Media Videos
Reposted by Katy B
cgatist.bsky.social
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
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
Reposted by Katy B
georgemonbiot.bsky.social
This accidentally turned into a short thread. Bit of a rage-thread I'm afraid. Please read to the end if you can. Thanks
georgemonbiot.bsky.social George Monbiot @georgemonbiot.bsky.social · 15d
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
Reposted by Katy B
georgemonbiot.bsky.social
When was the last time anyone at the BBC had to resign for misrepresenting a leftwinger?
November 10, 2025 at 2:06 PM
Reposted by Katy B
tomkindlon.bsky.social
Some info on #SequenceME, an exciting research project that wishes to use in a different way the samples collected for DecodeME

People can financially support such research here:
www.actionforme.org.uk/research-cam...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
SequenceME: partnering for potential Together with Oxford Nanopore Technologies and the University of Edinburgh, we are seeking to secure funding for an exciting new study. Should funding be successful, the SequenceME study aims to build on the DecodeME project and will analyse the genetic code of up to 17,000 people with ME. It would seek to uncover the root causes of ME and to determine whether ME is one illness or an umbrella condition encapsulating multiple diseases, such as long Covid and other chronic conditions. The research team would use advanced whole genome sequencing technology to look at every location in the threebillion- letter genome, enabling the identification of rare genetic variants (small changes to DNA sequence) and structural variations. This detailed picture would help researchers advance the biological understanding of ME with more precision and lay the foundation for progress in diagnosis and treatment. By advancing understanding of this complex and debilitating illness, the study has the potential to deliver profound health, social, and economic benefits, from reducing the strain on healthcare systems to empowering patients with personalised treatments and plans. SequenceME would be the first genetics study in ME to use Oxford Nanopore’s new generation of nanopore-based technology. “DecodeME created the world’s largest ME/CFS study, and we are proud to take the next step with SequenceME,” says Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies. “Using Oxford Nanopore’s any-length read sequencing technology, this project will uncover genetic insights that could transform patient care and open the door to personalised medicine for those living with ME.” “The SequenceME study will focus in its initial phase on severe and very severe cases of ME, ensuring that the people who live with its most devastating impacts are central to advancing understanding and driving meaningful change,” explains our CEO, Sonya Chowdhury. We will keep you upda…
October 26, 2025 at 6:56 PM
Reposted by Katy B
abrokenbattery.bsky.social
Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS.

twitter-thread.com/t/1981309222...
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
twitter-thread.com
October 23, 2025 at 10:43 AM
Reposted by Katy B
georgemonbiot.bsky.social
The Spectator and others have chosen (deliberately I suspect) to interpret this article as a desire to stop a future Reform UK government from legislating. My purpose is to stop *any* government crushing our fundamental rights. It’s just more urgent now. 🧵 www.theguardian.com/commentisfre...
We must act now: without a written constitution, Reform UK will have carte blanche to toxify our nation | Goerge Monbiot
It means breaking with hundreds of years of tradition, but it can’t wait. As hard-right figures spread division and laud autocrats, a fail-safe is vital, says Guardian columnist George Monbiot
www.theguardian.com
October 28, 2025 at 8:21 AM
Reposted by Katy B
bylinesnetwork.co.uk
How can citizens and journalists hold back authoritarianism, far-right populism and hate?

Join our live event with

- George Monbiot
- Nafeez Ahmed
- Yasmin Alibhai-Brown
- Nick Lowles

Finding hope, protecting democracy. 7 pm, 4 November.

Book now: bit.ly/BylinesHope
How can citizens and journalists hold back authoritarianism, far-right populism and hate? Join our live event with - George Monbiot - Nafeez Ahmed - Yasmin Alibhai-Brown - Nick Lowles Finding hope, protecting democracy. 7 pm, 4 November. Book now: http://bit.ly/BylinesHope
October 28, 2025 at 5:28 PM
Reposted by Katy B
longcovidadvoc.com
We've signed. It's long past time when N95s should be the norm not the exception.

Patients & staff deserve to be protected & safe.
October 29, 2025 at 2:37 PM
Reposted by Katy B
cgatist.bsky.social
Interested in ME/CFS research?
Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social?
Then apply for a *funded* Future Medicine PhD Fellowship.
See: www.findaphd.com/phds/project...
Please contact us to discuss before applying.
Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh on FindAPhD.com
PhD Project - Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh, listed on FindAPhD.com
www.findaphd.com
October 28, 2025 at 8:27 PM
katybrc.bsky.social
Extremely grateful to @georgemonbiot.bsky.social for remaining such a strong & committed ally for #pwME
& for being fearless in naming those who are responsible for the Greatest Medical Scandal of the Century & destroying the lives of hundred of thousands of #pwME
October 8, 2025 at 12:29 PM
Reposted by Katy B
georgemonbiot.bsky.social
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
Reposted by Katy B
georgemonbiot.bsky.social
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
www.benefitsandwork.co.uk
October 8, 2025 at 6:09 AM
Reposted by Katy B
sheencr.bsky.social
Early days for this test- interesting results and could be exciting but on a small group size and without other inflammatory conditions I would be cautious about saying it’s a test for ME yet
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 7:10 AM
Reposted by Katy B
kojamf.bsky.social
Dr. Jane Goodall filmed an interview with Netflix in March 2025 that she understood would only be released after her death.
October 5, 2025 at 9:08 AM
Reposted by Katy B
longcovidadvoc.com
🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial:

👉 mind-body therapies
👉 trauma based theory
👉 neuroplasticity

LCA have co-signed
📃👇
chroniclivingtherapy.com/open-letter-...
Open Letter to BACP magazine, Therapy Today - Chronic Living Therapy
A recent article in the magazine for members of the British Association of Counselling & Psychotherapy (BACP) has highlighted again the need for research, factual investigation and informed debate abo...
chroniclivingtherapy.com
September 16, 2025 at 2:15 PM
Reposted by Katy B
longcovidadvoc.com
🧪Sharing this important paper for hEDS, as many people with #LongCovid & #ME are hypermobile.

📐EDS is often part of a trifecta with MCAS & POTS - also common in LC.

The immune dysfunction shown in this groundbreaking paper could show a way forward 🤞
academic.oup.com/immunohorizo...
Infographic with a dark blue background titled “Latest Research: New Immune-Based Paradigm for EDS.” A colorful illustration of immune cells, viruses, and bacteria fills the center. Text below explains: “Proteomic analysis of hEDS revealed reduced complement proteins and altered cytokine signaling, indicating systemic immune dysregulation. Findings redefine hEDS as involving innate immune dysfunction, suggesting new diagnostic biomarkers and therapeutic targets.” Bottom includes citation: “Griggs et al, 2025, ImmunoHorizons” and the Long Covid Advocacy logo.
September 18, 2025 at 9:31 AM
Reposted by Katy B
longcovidadvoc.com
We have an exciting new development with a twist! 🥨

For all the details see our article 👇

#longcovid #pwME #chronicillness

open.substack.com/pub/longcovi...
Due South: An Exciting Development with a Twist
Hey everyone, it’s Claire here, general renegade steering the ship of Long Covid Advocacy.
longcovidadvocacy.substack.com
September 18, 2025 at 2:31 PM
Reposted by Katy B
longcovidadvoc.com
🌟 10% off ALL items ALL weekend!
Just use code: TENOFF

All profits to research

🛍️ longcovidadvoc.shop
A person with long blond hair stands confidently against a dark background, wearing a black leather jacket over a black T-shirt that reads “ME/CFS Sucks” in bold red gothic lettering. They have striking orange eye makeup and a strong pose, holding one side of their jacket open to reveal the shirt. At the top left is the Long Covid Advocacy logo, and at the bottom, bold text in bright pink and purple reads: “10% OFF code: TENOFF longcovidadvoc.shop.”
September 19, 2025 at 1:42 PM
katybrc.bsky.social
COFFI & Garner on @decodemestudy.bsky.social
More nonsense which is deliberately misleading.
Undermining landmark biomedical research harms #pwME and misleads policy makers.
September 17, 2025 at 4:19 PM
Reposted by Katy B
bhanlon15.bsky.social
Health Rising: 'Gut Reactions: BioMapAI Points to Multiple Dysregulated Systems in ME/CFS'

'The study was funded by a series of NIH grants...the microbiome in ME/CFS patients appeared to have turned immune cells to attack the gut lining'

www.healthrising.org/blog/2025/09...
Gut Reactions: BioMapAI Points to Multiple Dysregulated Systems in ME/CFS - Health Rising
BioMapAI study suggests the gut problems in ME/CFS are driving other system malfunctions and symptoms.
www.healthrising.org
September 13, 2025 at 12:42 AM
Reposted by Katy B
jeremy-jeffs.bsky.social
Had a txt from a contributor asking how I dealt with seeing so much suffer & it's true that sometimes I was v shaken - drove off with camerbag in the gutter once - but mainly I was angry. What other disease affects 400,000 but is virtually invisible? #pwme #mecfs #millionsmissing #invisibleillness
September 3, 2025 at 7:06 AM
Reposted by Katy B
bhanlon15.bsky.social
BenefitsPRO: 'Long COVID Disability Rates Among Are Highest Among Working-Age Americans"

'New research paper backed by the Bill & Melinda Gates Foundation found Long COVID disability rates are highest among working-age Americans (20-54)'

www.benefitspro.com/2025/08/27/l...
Long COVID disability rates are highest among working-age Americans
A research team found hints that employers could see the impact creeping into benefits expenses for years to come.
www.benefitspro.com
September 5, 2025 at 1:42 PM
Reposted by Katy B
theguardian.com
Can science crack the mystery of ME? – podcast
Can science crack the mystery of ME? – podcast
Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology, about how scientific understanding of the illness has improved and how scientists are transforming this knowledge into ideas about future treatments
www.theguardian.com
August 21, 2025 at 8:13 AM
Reposted by Katy B
decodemestudy.bsky.social
Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb
DecodeME 'The Results'. Post reads: 'Our Genetic Results webinar video and transcript are now available!'. Beneath this is an image of a clapperboard and an image of a transcript.
August 27, 2025 at 11:02 AM
Reposted by Katy B
bhanlon15.bsky.social
BBC: 'Is the DNA of people with ME different?'

'We meet the scientist behind the research – Professor Chris Ponting – and Laura Boyles who has been living with the condition for 15 years.'

www.bbc.com/audio/play/p...
BBC Audio | Access All: Disability News and Mental Health | Is the DNA of people with ME different?
And high heels make some disabled people walk better
www.bbc.com
August 27, 2025 at 6:33 PM