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
It's a racket, like every policy of the radical right. Which now includes the Conservative Party under Kemi Badenoch, as well as Reform, Republicans etc. Everything they say they want to do for our sake they are in fact doing for the sake of the rich and powerful.
Thinking of all the #pwME who are struggling without enough help & support, who don't have someone to make that phone call for them, turn them over in bed, get them food, run that errand & do essentials which they're unable to do themselves Change is SO urgently needed for pwME
Our criteria for success are disastrously skewed. In my view, a successful person is one who does more good than harm, on any scale. On this measure, most billionaires are massive failures, while humble folk in my neighbourhood who look after other people are highly successful.
At astonishing speed, our rights are being cancelled, worldwide. In the UK, the prosecution of Rajiv Menon KC is the latest example of blatant authoritarianism. Why? Because this is what billionaires and corporations demand. This week's column. www.theguardian.com/commentisfre...
Think our basic rights are safe? In the age of oligarchs and corporate lobbying, think again | George Monbiot
The global assault on our freedoms is coming ever closer to home. Just look at the sinister prosecution of UK lawyer Rajiv Menon, says Guardian columnist George Monbiot
theguardian.com
1/Introducing the International Society of Long COVID and Post-Acute Infection Syndromes (ISLC-PAIS) The COVID-19 Pandemic had highlighted the urgent need for a Paradigm shift in the way we approach post-acute infection syndromes. ISLC-PAIS aims to answer this call to action islc-pais.com/about
About · ISLC–PAIS
Mission, history and the five values that guide the International Society for Long COVID & Post-Acute Infection Syndromes.
islc-pais.com
One week ago to August 8, #SEVEREMEDAY I have a Pinterest board with 714 pins on #severeMECFS here ie.pinterest.com/tomkindlon/m... that could be shared around. It mainly contains images but also links to videos & articles You don't need to be on Pinterest #SevereME #MEcfs #PwME
I wrote this last year, but as nothing has been done to address the underlying issues, it remains, unfortunately, just as relevant today. www.theguardian.com/commentisfre...
High water bills, filthy rivers – and now drought. This is England's great artificial water crisis of 2025 | George Monbiot
In its refusal to nationalise water, it’s clear the government operates in the interests of private capital and not of the country, says Guardian columnist George Monbiot
theguardian.com
Please sign this UK government petition to compel AI companies to reveal whose books they used to train their data petition.parliament.uk/petitions/76...
Petition: Protect creators' rights: require AI firms to disclose training data
We ask the Government to introduce a statutory duty requiring AI developers to disclose the copyrighted works used to train generative AI in enough detail for creators to identify use of their work, e...
petition.parliament.uk
1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.
Cell and tissue enrichment in ME/CFS - ME/CFS Science
By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS
mecfsscience.org
UK people with Long Covid or ME/CFS: please consider helping the HERITAGE project. They need to recruit 1,000 people who have not accessed an NHS specialist service within the last 3 years. heritage.leeds.ac.uk/join/
“Physical inactivity cannot solely explain the lower exercise capacity and skeletal muscle adaptations in long COVID and ME/CFS patients” www.nature.com/articles/s41...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
nature.com
Great to have this research with such a useful control group: Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest www.nature.com/articles/s41... #MEcfs #LongCovid #PwME #CFS #ME #MyalgicE
It's important to note also that many severe-v severe #pwME have rolling PEM & also 'very small' needs to be explained clearly, chewing, rolling over in bed, speaking, digesting a meal for eg can lead to PEM While #ME is still so misunderstood, clarity & detail really does matter
Adam@abrokenbattery.bsky.social · 3w ago“For people with severe and very severe ME, the amount they can do without triggering post-exertional malaise is very small, and this group of people are just too ill to work.” Action for ME’s Clare Ogden giving evidence to the UK Parliament #MECFS
“They’re cross and they’re upset… many are only finding out through social media.” Dr Charles Shepherd, Medical Adviser to the @meassociation.org.uk, discussing the closure of the specialist #MECFS service at George Eliot Hospital, Nuneaton.
NEWS RELEASE 2-JUL-2026 Brain’s waste-clearing ability impaired in ME/CFS patients www.eurekalert.org/news-release... Paper: www.frontiersin.org/journals/neu... #mecfs #pwme #cfs 1/
✍️ Another excellent article by Dr Elke Hausmann. Her point that the prevalent medical textbook 'Kumar & Clarkes' STILL has ME as CFS in the psychiatric section despite a well-supported petition is well worth a read 👇 #longcovid #medsky
Elke Hausmann@drelke.bsky.social · last mo.#LongCovid #ME bjgplife.com/the-long-tai...
The neurological issues we already knew about in Myalgic Encephalomyelitis were pretty bad. Add this to the mix and it's no wonder people with ME have so many cognitive issues. We need more neurologists to understand the reality and take patients seriously. #medsky #neurosky
Science X / Phys.org@sciencex.bsky.social · last mo.First MRI evidence in ME/CFS points to impaired brain waste clearance. The sleep-linked disruption may help explain brain fog. doi.org/hb9gsf
In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform. In May they indicated they would “provide a more specific timetable in early June”. Until access is restored @decodemestudy.bsky.social analysis is stalled. We will keep all participants informed.
It tells you everything you need to know about Kemi Badneoch and Nigel Farage that as London schools, hospitals and transport networks all buckle under extreme record-breaking temperatures, they gather with fossil fuel lobbyists, climate deniers and the far-right to demand an end to Net Zero
As Extreme Heat Hits London, Fossil Fuel Interests and Global Far-Right Politicians Gather for a 'Glastonbury of Climate Science Deniers'
Nigel Farage and Kemi Badenoch are both scheduled to address the event, reports Max Colbert
bylinetimes.com
Waiting for the system justifiers on this platform to claim that Geoffrey Robertson KC "doesn't understand the law". That's what all of us who've made these points have been told. Maybe not understanding how this could possibly be right is a sign of our humanity. www.theguardian.com/global/comme...
You may not sympathise with the Elbit four’s methods. But you should be outraged by their treatment under the law | Geoffrey Robertson
The jurors who found the pro-Palestine activists guilty of criminal damage had no idea their verdict would be treated as a verdict on terrorism, says Geoffrey Robertson KC
theguardian.com
Look after yourselves this week, in our record-breaking heat. And don't let this or any government backtrack on its climate commitments: both to prevent the worst and to help us adapt to the escalating impacts to which - unfortunately and infuriatingly - we are now committed. #35YearsOfFailure
“At this point we’ve spent €36,000 on care.” Mia’s mother and sister on the cost of severe #MECFS, the absence of approved treatments, the lack of research, and how patient demos give them hope that something will be done.
Adam@abrokenbattery.bsky.social · 2mo ago“I didn’t know how to be around her without making it worse” Mia’s sister speaks about the challenges of living with someone with severe #MECFS. Mia developed #MECFS after a Covid infection and had to move back in with her family.
"The mere existence of trillionaires is a major political and economic problem, probably the defining issue of our time," writes @gabrielzucman.bsky.social. "When the power of wealth is wielded by sociopaths, the consequences are a matter of life and death."
The era of trillionaires will be dire for democracy. Here is how we can fight back | Gabriel Zucman
There is a fundamental tension between extreme wealth and the very possibility of democracy. That’s because extreme wealth is always an extreme power
theguardian.com
Here's our crowdfunder. Please do chip in if you can. We need to counter the deeply pernicious industrial lobbying that has far too much influence in this country, and uses Brexit as a golden opportunity to rip down public protections. Thanks. www.crowdjustice.com/case/fightin...
UK Government scraps chemical safety laws - so we're going to court
George Monbiot, Georgia Elliott-Smith and Steve Hyndside are Fighting Dirty, using the law to stop harmful pollution in its tracks. Find out more and follow our work at https://fightingdirty.org/
crowdjustice.com
Help please. I've been trying to discover whether any government minister has used the word "terrorism" in relation to the riots in Belfast and Southampton. I've drawn a blank, but I want to be sure. Has anyone seen or heard such a statement? Many thanks.
