Essential reading. New Guardian article from George Monbiot. 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.'
George Monbiot@georgemonbiot.bsky.social · 4d agoHere's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond." #MECFS
George Monbiot@georgemonbiot.bsky.social · 4d agoHere's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
I'm re-reading Susan Sontag's 'Illness as metaphor' written in 1978. It's about quacks psychologising biological disease. The medical and health community and regulators all wrung their hands while quacks blamed patients for: TB, cancer and HIV/AIDS. And now for ME/CFS & Long Covid too. Criminal.
As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
theguardian.com
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
theguardian.com
“This isn’t the sort of prejudice that comes with an ableist slur or a violent push. It is the gentle, everyday belief certain kinds of lives – certain kinds of people – come with low expectations.” My column on the growing care abroad scandal and what it says. www.theguardian.com/commentisfre...
An effective ban on disabled people leaving Britain? You read that right, and we will not settle for it | Frances Ryan
This scandal shows there are many who don’t expect us to live rich lives – and that paternalism lives on in disability services, says Guardian columnist Frances Ryan
theguardian.com
"It turned out the study was full of holes." Highlights Dutch insurance physician Jim Faas discussing the problems with the £5M PACE trial for #MECFS on Dutch TV in 2017.
Adam@abrokenbattery.bsky.social · 2w ago“I had to drop out as I got more and more ill.” John Kieboom talking about how he became bedridden following the exercise therapy he was prescribed for #MECFS. Dutch TV report following the release of the PACE trial data in 2017. #MECFSScandal
I was recently in the ER for IIH and multiple doctors asked me if I had any other conditions. I told them I had #ME/CFS. None of them knew what those letters stood for. It’s a common condition.
Litsa Dremousis@litsadremousis.bsky.social · 2w agoMayo Clinic and ME Action recently announced they’re working on new emergency room guidelines for people w/ #MyalgicEncephalomyelitis and #LongCovid. We’re so badly mistreated in ERs that many of us stop going. That’s tens of millions of us. But sure, give The Pitt another award. #Emmys
Well, every time somebody posts this, me & my drummer get tagged, so, preemptively: mountain goats are wild, majestic animals. The Mountain Goats are a band. Out of respect to our namesake, we do lick pee from rocks when we’re in a national park, but nobody ever airlifts us anywhere. We walk home
Sean of the I love my bass@sheepbop.bsky.social · 2w agoNot now, aggressive goats with taste for human urine
I can’t count the number of days I’ve had to simply endure in the past few years. The days you need to just somehow get through and hope that tomorrow will be a bit better. So many lost days. It never gets any easier. There are so many of us. #LongCovid #ME
Fred Rossi@darthfoo.bsky.social · 2w agoToday has been hard. The pain is relentless, and my muscles feel like they simply don’t have anything left to give. Standing hurts. Moving hurts. Existing in my body hurts. Long COVID and ME/CFS can reduce an entire day to simply enduring it. #LongCOVID #MECFS #PwME
Today has been hard. The pain is relentless, and my muscles feel like they simply don’t have anything left to give. Standing hurts. Moving hurts. Existing in my body hurts. Long COVID and ME/CFS can reduce an entire day to simply enduring it. #LongCOVID #MECFS #PwME
Before I became disabled I was very pro-assisted dying. But since becoming disabled I've seen how ableist many medical staff are and I've lost trust completely. Also its been eye-opening as to how inadequately disabled people in the UK are supported to LIVE. People still don't believe me on this.
Simon Wessely remains highly influential and is currently a vice-chair of the government’s independent review into mental health conditions, ADHD and autism. www.gov.uk/government/c...
Independent review into mental health conditions, ADHD and autism
Documents relating to the independent review into the prevalence and support for mental health conditions, ADHD and autism.
gov.uk
Today marks 25 years since 9/11. 8 months after the attack, psychiatrist Simon Wessely argued that illness reported around Ground Zero was being wrongly attributed to environmental toxins, suggesting “World Trade Centre Syndrome” was driven by social and psychological factors.
This Jacob Coxon thing is weird. He worked at Anthropic for six weeks and OpenAI for nearly three years. He’s doing a whole media tour without any real statements about what it is he’s scared of other than vague references to recursive self improvement, a theoretical ai that teaches itself.
Carl Quintanilla@carlquintanilla.bsky.social · 3w agoANTHROPIC EXEC: “.. I personally think it is >10% within the next decade.”
Surprised to see they’re still talking about “herd immunity” with COVID like it’s right around the corner. They’ve been saying this since the vaccines came out. It’s really misleading. And it gets in the way of real mitigation. www.mayoclinic.org/diseases-con...
mayoclinic.org
NPR@npr.org · last mo.Just like all previous summers since the pandemic began, COVID-19 cases are ticking up again, even while other health threats make more headlines. n.pr/45oln5k
Okay! Here’s the opening statement provided by the fired Rockstar workers. Key points: -There was allegedly a ‘mole’ in the union Discord server for over a year who funnelled info back to R* -It’s claimed R* only acted shortly after union members passed the 10% threshold for statutory recognition
Last year, Rockstar was accused of firing over 30 workers for engaging in trade union activity. The studio said they were let go for leaking confidential information. The tribunal between the two parties begins today. I'll be attending and will do my best to provide updates over the coming weeks.
The UK is voting on the Assisted Dying bill today. Most disability organizations oppose it. Safeguards have already been removed or rejected. Please listen to disabled Canadians. What was meant to be dignified quickly became coercive eugenics aimed at the most vulnerable.
Sharing my 🧵 on Assisted Dying and why many disabled people fear a slippery slope This is based on Canada’s MAiD It’s been “offered” to me when I was clear I wanted treatment My condition wasn’t terminal I don’t oppose the right to die, but we must ensure disabled people have the right to live.
Kelly@broadwaybabyto.bsky.social · 2y agoOne of reasons I fear slippery slope into eugenics with assisted dying policies is how little outrage there is when disabled people are harmed When DNRs are put on us without consent. When - like Stephanie Lavoie - we’re denied the care we need to survive & do MAiD instead No one speaks up for us
AI* has a >10%** chance to kill us all *not the AI we're working on but some other AI that we'll build for sure if you keep funding the company I work at **number I made up based on a still-theoretical technology that nobody has but we all love talking about
Carl Quintanilla@carlquintanilla.bsky.social · 3w agoANTHROPIC EXEC: “.. I personally think it is >10% within the next decade.”
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Tom Kindlon@tomkindlon.bsky.social · 3w ago10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
The Channel 4 revelations might not immediately change the minds of people who vote Reform. But it absolutely should change the position of the media giving them so much air time. Outlets that continue to fawn to them expose themselves as having zero credibility.
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
mecfsscience.org
‚Her research found that GPs who use ambient voice technology believe that errors are more likely to creep in when the consultation is with more than one person, with patients with a complex medical history, (…)‘ #LongCovid #ME www.theguardian.com/society/2026...
Doctors’ AI scribes get names of drugs and diagnoses wrong, NHS watchdog warns
Exclusive: Patients identify errors in consultation transcripts that are missed by GPs, Healthwatch England finds
theguardian.com
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
theguardian.com
So, I got royally knighted today. Woot!? Yes, I did. Adopted from Sri Lanka, knighted in the Netherlands. Who would've thought! The most important thing is that this award belongs to the whole community. Everything we do is teamwork. I'll write more after I recovered. #pwme #millionsmissing
