Indeed. It should be a national holiday or moment of silence, thinking of the sacrifice.
A general thread on the PACE trial!
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Chandelier
Senior Member (Voting Rights)
Cost of PACE in today’s money:
What cost £5,000,000.00 in 2005 would cost £9,135,555.65 in July 2026.
Change in value: 82.7%
Average annual inflation: 2.84%
Calculated via https://www.bankofengland.co.uk/monetary-policy/inflation/inflation-calculator
JellyBabyKid
Senior Member (Voting Rights)
Which would have more than covered the funding of SequenceME, I presume?
Andy
Senior Member (Voting rights)
Sadly not, in total we need roughly double that, but obviously we could do a lot with £9m.
It was being monitored by many.
Legal commentary on the PACE trial, release of data and re-analysis while the 2007 NICE guidelines were being reviewed.
www.rwkgoodman.com
Legal commentary on the PACE trial, release of data and re-analysis while the 2007 NICE guidelines were being reviewed.
The PACE trial – "one of the biggest medical scandals of the 21st century" | RWK Goodman
On 20 February 2018 a Parliamentary debate on the PACE trial – a controversial study on ME/CFS treatment – highlighted the flaws of the original trial whilst also raising debate over whether more information is needed to educate the public and the medical professions about the devastating...
www.rwkgoodman.com
V.R.T.
Senior Member (Voting Rights)
Everyone who has deteriorated from a GET like approach in the last ten years didn't need to. There was objective proof it was useless and countless testimonies that it caused harm. The institutions who stuffed their ears and refused to hear the truth are responsible for what has happened to all of us who ended up worse because of exercise etc since then.
Even so, this was a momumental moment in MECFS history.
Thank you Alem.
Even so, this was a momumental moment in MECFS history.
Thank you Alem.
JellyBabyKid
Senior Member (Voting Rights)
JellyBabyKid
Senior Member (Voting Rights)
Ah..ok. good to know, but no idea how we get there. I am speaking to my MP as much as possible.
JellyBabyKid
Senior Member (Voting Rights)
@Andy
Can I confirm an exact figure/ask for when I am contacting my MP? Is that helpful currently? Thanks.
Andy
Senior Member (Voting rights)
The current estimate for the remainder of the full project is £15m. We do not expect to find that from one funder though, and the study has been designed in such a way that smaller but still substantial amounts can help us make progress towards our larger goal. One example of this is the recent £4.7m from the DHSC that is enabling the part of the study that sequences up to 6k ME/CFS samples.
Tom Kindlon
Senior Member (Voting Rights)
I very rarely post on LinkedIn these days but decided to do a longer post today on this:
#mecfs #pwme #cfs #myalgicencephalomyelitis #chronicfatiguesyndrome | Tom Kindlon
Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen Mary University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was...
www.linkedin.com
With a lot of researchers posting less if at all on X, more are communicating via LinkedIn.
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