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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

1,522 Followers  |  1,260 Following  |  247 Posts  |  Joined: 20.10.2024
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Posts by Katy B (@katybrc.bsky.social)

Donald Trump is a global chaos generator. He couldn't give a damn about the Iranians and will walk away the moment things get difficult, leaving a trail of pointless death and destruction.
It's all about spectacle for him. Once that's achieved, job done.

01.03.2026 16:05 β€” πŸ‘ 1040    πŸ” 214    πŸ’¬ 42    πŸ“Œ 7

It would be great if someone feels able to invite
@greenpartyhan.bsky.social to be a member of the APPG on #ME now!
@sianberry.bsky.social @tessamunt.bsky.social ?

27.02.2026 16:41 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Preview
Hannah Spencer: the Green MP speaking to everyday people’s frustrations Winner of Gorton and Denton byelection was driven into politics by growing gap between super-rich and the β€˜rest of us’

The small, brave band of MPs who represent the trampled, not the tramplers, has a very welcome new member.

We should all ask ourselves why, in a supposed democracy, such representatives are so rare.

www.theguardian.com/politics/202...

27.02.2026 13:26 β€” πŸ‘ 2030    πŸ” 492    πŸ’¬ 51    πŸ“Œ 17
A thread on what people with ME/CFS need in the way of service I don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fac...

Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th...

All welcome to comment and make suggestions before the document before it is finalised.

26.02.2026 14:46 β€” πŸ‘ 16    πŸ” 13    πŸ’¬ 1    πŸ“Œ 0
Claims of NHS inaction over specialist services for severe ME cases – Savannah Victora-May * Caution - This article contains a report of the medical condition and treatment of a person with severe ME* My body cannot take even a shred more of this. I’m not physically able to continue, I am s...

@ashleydaltonmp.bsky.social
Your words β€œthese must become never events”

PLEASE INTERVENE TO SAVE LIFE
Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS

www.meresearch.org.uk/claims-of-nh...

26.02.2026 10:45 β€” πŸ‘ 22    πŸ” 17    πŸ’¬ 0    πŸ“Œ 6

Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts.
#MEcfs #LongCovid

25.02.2026 18:09 β€” πŸ‘ 24    πŸ” 15    πŸ’¬ 0    πŸ“Œ 0
Preview
How is Reform’s charmless candidate still a contender in Gorton and Denton? Ask Labour | George Monbiot This byelection should have been a stroll for Keir Starmer’s party. Instead, all hope of defeating Matt Goodwin now seems to lie with the Greens, says Guardian columnist George Monbiot

If Labour followed its own logic, it would now step aside and let the Greens walk home in this crucial by-election. It is hard to imagine how Starmer and co could have made a bigger fist of this - and of everything.
My column.
www.theguardian.com/commentisfre...

25.02.2026 12:05 β€” πŸ‘ 725    πŸ” 217    πŸ’¬ 36    πŸ“Œ 17

Broadly speaking, there are 2 political factions. Not Labour v Tory/Reform, Republicans v Democrats etc, but an economic elite, operating globally, versus all of us. Though they are small in number, through the power of the political, media and social media systems they control, they keep winning.

25.02.2026 10:00 β€” πŸ‘ 478    πŸ” 178    πŸ’¬ 26    πŸ“Œ 8
Trial By Error: Interview with Jonathan Edwards about "Therapy Guide" from British Association of Clinicians in ME/CFS | Virology Blog By David Tuller, DrPH The British Association of Clinicians in ME/CFS, known as BACME, defines itself as β€œa multidisciplinary organisation providing informa ...

The British Association of Clinicians in ME/CFS issued a "therapy guide" last year. Very unsatisfactory. Professor Jonathan Edwards and colleagues have responded in an open letter. I spoke with Professor Edwards about it. virology.ws/2026/02/20/t...

21.02.2026 02:03 β€” πŸ‘ 50    πŸ” 19    πŸ’¬ 1    πŸ“Œ 2
Graphic with a dark, moody photograph of a red fly agaric mushroom with white spots growing in a mossy forest. The background consists of blurred, dark tree trunks. White serif text over the image reads: "Psychologisation 101: Definitions, Distinctions, and Why It Matters." At the bottom, in a smaller italicized font, it says "Long Covid Advocacy" next to a small bookmark-style logo.

Graphic with a dark, moody photograph of a red fly agaric mushroom with white spots growing in a mossy forest. The background consists of blurred, dark tree trunks. White serif text over the image reads: "Psychologisation 101: Definitions, Distinctions, and Why It Matters." At the bottom, in a smaller italicized font, it says "Long Covid Advocacy" next to a small bookmark-style logo.

🌟The first in our new 101 back to basics series.

In this article we look at Psychologisation.

If there's a topic you'd like us to cover please let us know in the comments!

🎧 Audio available

πŸ–‡οΈ tinyurl.com/52vthd5b

21.02.2026 20:20 β€” πŸ‘ 53    πŸ” 21    πŸ’¬ 5    πŸ“Œ 4
An image titled "PROGRESS WORTH CELEBRATING" announcing that Phase 1 of SEQUENCE ME + Long Covid is now funded for two years. The text explains it is a bold study exploring root causes through large-scale, whole genome sequencing, building on the DecodeME study. It notes the proposed Β£20 million study is the largest for any disease and still needs funding. The bottom features a "LONG COVID ADVOCACY" logo with a purple and blue gradient hand icon.

An image titled "PROGRESS WORTH CELEBRATING" announcing that Phase 1 of SEQUENCE ME + Long Covid is now funded for two years. The text explains it is a bold study exploring root causes through large-scale, whole genome sequencing, building on the DecodeME study. It notes the proposed Β£20 million study is the largest for any disease and still needs funding. The bottom features a "LONG COVID ADVOCACY" logo with a purple and blue gradient hand icon.

πŸŽ‰ Some Good News with the launch of SEQUENCE ME & Long COVID.

Led by Ponting & Birney, this bold study is exactly the direction research needs to take.

More details & donation link on Action for ME website:

πŸ–‡οΈ tinyurl.com/mr96dxj4

22.02.2026 09:00 β€” πŸ‘ 23    πŸ” 7    πŸ’¬ 0    πŸ“Œ 0
A screenshot of a text document on a purple background under the heading "Summary." The text criticizes a healthcare document regarding ME/CFS, stating it fails to move toward an evidence-based approach and serves the interests of BACME members rather than patients. It argues that current policy lacks an evidence base, perpetuates patient distrust, and that resources should instead focus on medical care for severe cases and establishing a specialist medical "home" with a research base to improve patient outcomes.

A screenshot of a text document on a purple background under the heading "Summary." The text criticizes a healthcare document regarding ME/CFS, stating it fails to move toward an evidence-based approach and serves the interests of BACME members rather than patients. It argues that current policy lacks an evidence base, perpetuates patient distrust, and that resources should instead focus on medical care for severe cases and establishing a specialist medical "home" with a research base to improve patient outcomes.

βœ‰οΈ Strong Open Letter from Bull, Edwards & Crawford in response to BACME's 'Guide to Therapy' 2025.
πŸ‘‰ Dysregulation theory speculative
πŸ‘‰ Vague active therapy rec that serves BACME more than patients
πŸ‘‰ Deceptive jargon

In essence = BACME should be shut down

πŸ–‡οΈ tinyurl.com/373hbbc5

23.02.2026 09:05 β€” πŸ‘ 19    πŸ” 6    πŸ’¬ 0    πŸ“Œ 1
a white bread sandwich with baloney in and crisps on the side. A post by Long Covid Advocacy

a white bread sandwich with baloney in and crisps on the side. A post by Long Covid Advocacy

πŸ₯ͺBeware if someone serves you a baloney sandwich:

Bread = Lots of ΓΌber praise about how they believe you, your symptoms are 'real'
Filling = Then comes the psychologising!
Bread = More sympathy on how the illness has been dismissed & the stigma etc.

πŸ’£ Medical love bombing is medical gaslighting.

24.02.2026 14:05 β€” πŸ‘ 26    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0

With the lives of pwME still being put at severe risk while under NHS care, we can't express how urgently the government need to include severe ME.

23.02.2026 11:30 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

@meassociation.org.uk @actionforme.bsky.social @meactionuk.bsky.social @physiosforme.bsky.social
@tessamunt.bsky.social

22.02.2026 12:43 β€” πŸ‘ 0    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Preview
Professor Robert Howard - 2026 Presidential candidate Read Professor Robert Howard's Presidential election statement.

BPS Cabal member Robert Howard is hoping to become the next president of the Royal College of Psychiatrists
Howard is openly hostile towards #pwME & biomedical #ME research
It would be great if the #ME orgs could challenge his nomination on this basis
www.rcpsych.ac.uk/about-us/our...

22.02.2026 12:42 β€” πŸ‘ 10    πŸ” 3    πŸ’¬ 1    πŸ“Œ 1

It's deliberate in the UK
As @davetuller1.bsky.social says "The leading FND folks signed the screed with 50+ authors that pushed back against the 2021 NICE guidelines. Two leading FND proponents are students of Michael Sharpe. There is definitely diagnostic creep going on--expansion of territory."

20.02.2026 17:00 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

#ME orgs, allies & advocates need to address this directly & urgently with the Association of British Neurologists
@tessamunt.bsky.social @meassociation.org.uk @meactionuk.bsky.social @actionforme.bsky.social

20.02.2026 16:57 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

There's an apparent increase in Neurologists who are refusing to recognise #ME, automatically diagnosing #pwME as having FND
I wonder if FND-BPS proponents are feeling threatened by the
@decodemestudy.bsky.social results & are doubling down & as ever are willing to harm #pwME in the process

20.02.2026 15:18 β€” πŸ‘ 6    πŸ” 1    πŸ’¬ 2    πŸ“Œ 0
Preview
We Can Make an Impact. Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

Save Savannah Victora-May
Prevent Another #ME Tragedy
Please keep Signing & Sharing the Petition
βœοΈπŸ”
c.org/ccd8GhpyTt

18.02.2026 14:24 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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
πŸͺ§πŸ“’πŸͺ§

16.02.2026 16:02 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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 β€œappalling” and says she is very worried Savannah could die.

archive.ph/J3Xv3

16.02.2026 05:54 β€” πŸ‘ 70    πŸ” 39    πŸ’¬ 3    πŸ“Œ 8
Preview
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.

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...

13.02.2026 12:28 β€” πŸ‘ 4    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0

When people say β€œbut 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

10.02.2026 07:41 β€” πŸ‘ 193    πŸ” 48    πŸ’¬ 7    πŸ“Œ 1

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. πŸ€”

13.02.2026 10:32 β€” πŸ‘ 521    πŸ” 143    πŸ’¬ 13    πŸ“Œ 5

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.

13.02.2026 14:44 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Post image

"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.

12.02.2026 16:23 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Promotional graphic for the Pedantic Zebra Bookclub, a disability and chronic illness reading collective. Against a black background, three book covers are displayed: "Unwell Women" by Elinor Cleghorn, featuring an anatomical illustration with flowers; "Air-borne" by Carl Zimmer, showing a colorful, iridescent cloud; and "Disfigured" by Amanda Leduc, depicting a house hidden in green foliage with a crutch leaning against it. Text reads: "We are voting on what to read for our Spring book club! Comment your choice." The logos for Pedantic Zebra Bookclub and Long COVID Advocacy are in the corners.

Promotional graphic for the Pedantic Zebra Bookclub, a disability and chronic illness reading collective. Against a black background, three book covers are displayed: "Unwell Women" by Elinor Cleghorn, featuring an anatomical illustration with flowers; "Air-borne" by Carl Zimmer, showing a colorful, iridescent cloud; and "Disfigured" by Amanda Leduc, depicting a house hidden in green foliage with a crutch leaning against it. Text reads: "We are voting on what to read for our Spring book club! Comment your choice." The logos for Pedantic Zebra Bookclub and Long COVID Advocacy are in the corners.

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

12.02.2026 15:50 β€” πŸ‘ 6    πŸ” 3    πŸ’¬ 2    πŸ“Œ 0
A text: β€˜Open call!’

Below it a hand-written text reads β€˜Myalgic Encephalomyelitis Kills’.

A text: β€˜An online Group Exhibition’.

A text: β€˜Open call!’ Below it a hand-written text reads β€˜Myalgic Encephalomyelitis Kills’. A text: β€˜An online Group Exhibition’.

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

12.02.2026 12:17 β€” πŸ‘ 32    πŸ” 25    πŸ’¬ 1    πŸ“Œ 2

Thanks David, I really hope you're feeling better.

11.02.2026 12:56 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0