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Quite literally; the PROMS project links back to a paper published in 2013 which I understand links back to another arm of the original PACE project. I feel this is bigger than even this discussion and the info should be passed to George Monbiot.

Sorry! Didn't read this properly . Thanks for paying proper attention Trish :)

It was all moved to one thread: https://www.s4me.info/threads/the-elaros-nhs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/

Thank you for this post @Trish . You have joined a lot of dots that I had spotted and was struggling to make sense of. This is extremely concerning indeed. I also fear that any concerns raised will be attributed to us being "anti-recovery activists" and dismissed. Edited for spelling errors

ELAROS have replied to the comments on the MEA Facebook post: [MEDIA=facebook]1163775829109781[/MEDIA] And directly to one person's concerns, saying that the DWP will have no access to data, they are merely a funder.. MEA, particularly Dr S, are very insistent that MEA are not endorsing this...

"supporting" is doing a lot of very interesting work here And there you have it...

Much like the infected blood scandal, the post office scandal - which had the justice system involved as people went to prison, Hillsborough, which had the police and mainstream media complicit. It is all based on people's need to disbelieve other people's reality and think themselves superior...

1. Where did it go? 2. What treatments/outcomes do you have to show for this investment? 3. covid is not "over" so why are the clinics being closed / defunded? Maybe sound less pleased with yourselves when you have achieved the square root of nothing and wasted £314 million doing it Full...

Isn't this deprogramming?

It wasn't entirely wasted; I found it incredibly helpful and learned things :)

Has this one been shared yet: https://www.bmj.com/content/389/bmj.r977/rr-19 Lots to like, but particularly: "The use of biomedical terminology to repackage psychosocial models - referred to in rhetorical studies as “concept laundering” - is another red flag. Referring to “dysregulation”...

Thank you :)

It would be interesting to repeat that back to your MP and say this is what you promised in your manifesto and is the opposite; explain what happened But you said she hadn't responded and I suspect you will get the stock "things were worse than we anticipated" response even if you did.

This is very well put. Would you mind if I quoted it to my MP and in my green paper response? One of our group has an MP meeting I have offered to right a briefing for, and this would be very helpful indeed.

As I didn't qualify for the survey, as I am borderline severe, I emailed yesterday, as she included an email address in later tweet in the thread in response to someone else, and I have copied in my MP. Worth shouting from every rooftop? My GP got it both barrels last week.

Our £5bn disability benefits cut will stop welfare state collapsing, says Kendall Exclusive: Work and pensions secretary to double down on changes despite growing pressure within Labour https://www.theguardian.com/society/2025/may/20/liz-kendall-dwp-double-down-labour-disability-benefit-cuts...

Their response always seems to be incoherent anger and attack, though - and getting more and more mad at the patients - they people they claim they want to help - to anyone who will listen. I cannot understand how anyone outside their echo chamber looks at their research, the complete lack of...

"Hope for patients with severe ME would be better inspired by appropriate funding allocated to research and treatment. Patients should not have to ‘find their path’ [2] any more than a patient with lupus or multiple sclerosis, but rather be offered expert medical management and safe MDT...

Tweet from Tessa Munt MP Thank you @stephenctimms for meeting with #APPGME and #APPGLongCOVID and agreeing to my request to speak to @DHSCgovuk to fund research that would enable #pwME to get better, go to work, and come off benefits. Wins all round! #FundThePlan

I came here to ask this very question!