A general thread on the PACE trial!

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

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 www.rwkgoodman.com
 
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.
 
V.R.T. said:
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.
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That is very sobering indeed.

And infuriating.

Much gratitude to Alem
 
JellyBabyKid said:
@Andy

Can I confirm an exact figure/ask for when I am contacting my MP? Is that helpful currently? Thanks.
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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 said:
10 years today, Alem Matthees was sent the PACE trial data he had requested and shared it with a small number of us.
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I very rarely post on LinkedIn these days but decided to do a longer post today on this:
www.linkedin.com

#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 www.linkedin.com

With a lot of researchers posting less if at all on X, more are communicating via LinkedIn.
 
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JellyBabyKid said:
Much gratitude to Alem
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Alem Matthees has joined Bluesky today.

I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.
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Bluesky is not properly showing me all my replies I posted to @tomkindlon.bsky.social about #Pacing for #MECFS so I am creating a new thread and tagging him here.

The statement about "avoiding PEM as much as possible" is valid but needs clarification or we are accused of maladaptation. I have read stories about people with #MECFS who took it too far, did as little as possible, became deconditioned, then blamed pacing when their illness worsened overall.



I cannot verify anecdotes but they seem to mostly appear in the brain retraining community. Perhaps they misapplied pacing, suffered a spontaneous relapse, have another illness resembling #MECFS, or created a strawperson argument about excessive rest to set the stage to promote brain retraining?



Pacing to me means finding a balancebetween activity and rest to optimise function and QoL. If I was to avoid PEM as much as possible, I would probably have to do absolutely nothing. I currently have the support to be that but I cannot do nothing unless forced because it is psychological torture.



I was forced to do absolutely nothing because of very severe #MECFS for 9 years, but at least now I can read and write a little. People with ME/CFS have their boundaries tested constantly just trying to live and we naturally do more when we are able to. Activity phobia in ME/CFS is BPS folklore.



I know I am preaching to the choir here. I just wanted to express a few thoughts about how the phrase "avoiding PEM as much as possible" can be weaponised against pacing. We saw how APT in the #PACEtrialused an inappropriate 70% rule which Leonard Jason has rightly criticised, PMID: 28805518.
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Wonderful to hear from Alem.

He makes an important point - I made that exact same point yesterday, commenting on a draft article. Even people with milder illness rarely avoid PEM entirely. Everyone I know pushes against the constraints of the illness at least sometimes.
 
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