A general thread on the PACE trial!

That’s excellent news, just the sort of TV investigation we were discussing recently. I don’t blame the MEA for the people on FB getting the wrong end of the stick and assuming that “revisiting” GET means repeating it.

 

Does this offer any clues to the identity of the show? Interesting that it’s a specific presenter in the frame, even at this early stage. Maybe a show built around a single reporter, I’d assume on a terrestrial channel.

 

Oh no, not "balanced". Balanced sounds so good - but in ME illness and research terms is sooo bad. Right of reply is more appropriate. But not half and half please.

 

The text of the ME Association's post for ease of reference,

"IF YOU TOOK PART IN THE PACE TRIAL, WOULD YOU BE WILLING TO REVISIT YOUR EXPERIENCE FOR RESEARCH FOR A TV PROGRAMME?

Researchers working on a TV medical show would like to talk to some of the 641 participants in the PACE Trial - the £5million experiment dubbed by one MP as "one of the greatest medical scandals of the 21st Century".

There's no guarantee that the broadcaster they're working for will eventually commission a programme about PACE but the researchers would like your take on what went on.

Reverberations about the PACE trial have rumbled on through scientific discussion about graded exercise and CBT as treatments for ME/CFS ever since the first results were published in The Lancet in 2011. The PACE results have never been retracted.

If you were one of those who took up an invitation to join the trial, even if you later dropped out before completing it, please drop me a line with a short description of how you were affected.

Email me and I will pass your details on to the researcher involved. Please include a phone number if at all possible.
Thanks!
Tony Britton, PR and Fundraising Manager, ME Association.
Email: tony.britton@meassociation.org.uk
Mob: 07946 760 811"

 

someone might like to alert them to this thread
https://www.s4me.info/threads/reports-from-participants-in-get-and-cbt-trials.4761/

 

This is what the ME Association posted on Facebook about the potential TV programme on the PACE trial:

THE BBC REGRETS THEY'RE UNABLE TO PACK THE PACE TRIAL INTO THIS PROGRAMME...

The 2011 PACE Trial just packs too much controversy into it to sit comfortably within the format of a magazine-style TV medical show, one of the programme’s researchers told us at the weekend.

A week after we lined up volunteers to discuss their experiences of taking part in PACE – as part of early-stage planning for the programme – we’ve been told:

“Unfortunately, the commissioner feels this issue is not a good fit for our programme as our VTs tend to only last 3 to 4 minutes and, given the extent of this damning trial, it would feel unjust to only give it that amount of air time on the show”.
In TV terms, a VT is a pre-recorded item shown as part of a main programme.

Last week, when we put out the appeal for volunteers, we couldn’t at that stage tell you what programme was interested in finding out more about the PACE Trial, which has been dubbed by one MP as “one of the worst medical scandals of the 21st Century.”

Today, we reveal the programme in question as ‘Dr Xand’s Con or Cure’ which has been commissioned to be shown on BBC1 for a second series. The main presenter is Dr Xand Van Tulleken, twin brother of equally famous TV presenter and author Dr Chris Van Tulleken.

Our press officer, Tony Britton, writes:

“I have to say that I wholly agree with the researcher but it was worth having that conversation.
"The PACE Trial is just far too big a subject to be put out as just one lightweight item in a magazine-type programme. Twelve years on, it's still a lightning rod for discussion about everything that is wrong with this country’s attitudes towards this illness. The PACE Trial and its background deserves the full treatment by a top investigative programme.
“Thanks to those who did feel able to volunteer their thoughts to the programme. We’ve at least planted a seed in the mind of one TV researcher which may grow into something bigger in the future.”​

https://www.facebook.com/meassociat...XZ1cydrRNYvgLmyT8mPxWrmbNRQury2AcCCn2i3xUQkcl

 

"Don’t just blame Boris ‘the liar’ Johnson for Long Covid. Blame the crooked psychiatrists who fomented his beliefs, too."

https://www.thecanary.co/uk/2023/12/07/long-covid-boris-johnson-psychiatrists

 

The incredible story of the PACE trial for ME/CFS | Part 1

How a phase 3 clinical trial went off the rails and led patients around the world to receive inappropriate therapies which, in some cases, caused them profound and lasting harm.

https://mecfs.substack.com/p/the-incredible-story-of-the-pace-b25

 

I think I may just have found the most excessively, comically even, wrong interpretation of the PACE trial. It's really impressive in all the bad ways.

It's from the paper "Cardiovascular autonomic dysfunction in post-COVID-19 syndrome: a major health-care burden" (shared PDF version), and it, just wow, I guess they did not read the paper:

Reference #158 is for the PACE trial.

 

Open-label placebo is an evidence-based treatment option for many chronic conditions
Ballou, Sarah; Kube, Tobias

PAIN. 165(2):487-488, February 2024.


---

Reply to Ballou and Kube
Jones, Caitlin M.P.; Lin, Chung-Wei Christine; Blease, Charlotte; Lawson, Jen; Abdel Shaheed, Christina; Maher, Christopher G. Less

PAIN. 165(2):488-489, February 2024.

The PACE Trial gets a brief mention. Charlotte Blease has previously co-authored a number of papers with Keith Geraghty
https://journals.lww.com/pain/citat...allou_and_kube.24.aspx?context=latestarticles

 

FND physiotherapist shares his thoughts on the PACE trial. Lower down in the thread he mentions that 50% of his FND patients have PEM.

https://x.com/zacharygrindpt/status/1747017130673938641

 

https://twitter.com/user/status/1747034405997007015


He's also defending the protocol changes because they were done prior to statistical analysis. Of course, in a double-blind trial that would be fine, but in an open-label study you know what way the results are heading so it's indefensible.

 

Also, the nature of the changes made! Outcome swapping, altering thresholds, concealment of data that does not fit with the hypothesis. Every tweak made the results look better. That’s about as close as you get to revealing a motive without a confession.

 

Not to mention the problems with subject selection and the introduction of bias by informing participants in advance that that the preferred treatments worked, even to the extent of Prime ministerial endorsement of the treatments shared in a newsletter to some participants mid study.

 

The normal range calculations for fatigue and physical functioning weren’t adjusted before statistical analysis. There were called post hoc in the Lancet in 2011. So they were still post hoc in the recovery paper in 2013. The other changes to the recovery criteria weren’t changed before statistical analysis either.

 

Heh not really. It would be like a test of nuclear fusion that changes its definition of a successful run from 50% positive net generation to generating 95% of the energy that was put in, resulting in a net loss. The blinding was irrelevant here, they started with a definition of recovery that was below 80% of the population, and set it below even the entry threshold, to the functioning level of an average 80 year-old.

No one would take such a claim of net energy generation seriously when it was actually a net loss, but physics and engineering are serious disciplines where outcomes actually matter.

And even that comparison is flawed, because power output can and would be measured in any experiment, and PACE didn't measure anything, they only used ratings that they explicitly tried to influence during the trial.