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
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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
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
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
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.
katybrc.bsky.social
There is so much dangerous misinformation on #ME in this article
Reposted by Katy B
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.
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.”
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.
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
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
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
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.
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
katybrc.bsky.social
This is so very well deserved.
Reposted by Katy B
cgatist.bsky.social
Seeking a Project Manager for the PRIME project:
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
PRIME Project Manager
The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...
elxw.fa.em3.oraclecloud.com
Reposted by Katy B
jackamatica.bsky.social
A new study identifies a protein called SMPDL3B as a possible key factor in Myalgic Encephalomyelitis (ME/CFS).

It could explain immune problems, symptom severity, and even point to new treatments.

Here’s a full breakdown - our preliminary RNA data supports this finding: 🧵
Reposted by Katy B
cgatist.bsky.social
New or repurposed potential treatments for ME/CFS (& related conditions) from Jan 2025. The Innovation Observatory’s
Medicines Innovation Database (MInD).
io.nihr.ac.uk/wp-content/u...
io.nihr.ac.uk
Reposted by Katy B
talaattanagra.bsky.social
Here's a video by Dr. Jarred Younger explaining the functions of the 8 genes found to be associated with #MEcfs.

youtu.be/clwN51nkZAk?...
Reposted by Katy B
johnthejack.bsky.social
'Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive. It is playing out right now in how we understand and discuss #LongCovid, and as we have done in relation to #MEcfs for decades.'
May be one of main reasons why no further in finding a cure for those conditions
bjgp.bsky.social
BJGPLife: What does the fallout from the ‘Salt Path’ saga tell us about our society’s ideas about chronic illness and exercise?
bjgplife.com/what-do...

#GeneralPractice #PrimaryCare #FamilyMedicine
katybrc.bsky.social
Reading the @decodemestudy.bsky.social results something lifted which I hadn't realised I'd been carrying over the decades of being a #pwME, some unkindness towards myself, guilt & a sense of failure for not having recovered
#ME became more tangible & sensation & experience met data
🧬
Reposted by Katy B
cgatist.bsky.social
Scientific reaction from Prof Kevin McConway (Applied Statistics) and, I understand, soon from Prof Alan J Carson (Neuropsychiatry), now posted. Prof Carson's critique misunderstands our methods, as Prof McConway's comments make clear. www.sciencemediacentre.org/expert-react...
expert reaction to observational study of blood biomarkers in ME/CFS patients | Science Media Centre
www.sciencemediacentre.org