A general thread on the PACE trial!

[Valentijn]

Or don't real scientists complain because major funders are involved? (Which would lead to a stop of funding of one's own research. There are some kind of "unofficial rules of behavior" inside the research and academics field.)

The collection of published PACE papers ended up having dozens of co-authors, from what I recall. Any British academic attacking PACE would also likely be attacking a co-worker from their own institution, and risk associating their own institution with the scandal of supporting poor research practices.

 

[Inara]

Hi @Esther12!

I don't have any great of easy answers to your questions, which we've been struggling with for years

Thanks! Honestly, that makes me feel better. I think and think and think...and always come to the conclusion: It seems unachievable. But I agree -

It seems that the best thing to do is keep pushing to raise standards, and hope to chip away at the quackery.

I never heard about Cochrane before. What kind of standards do they use in order to classify a paper as "scientific" or "evidence based", do you probably know? What was their conclusion with regard to PACE?

 

[Inara]

A recent conversation I had with someone who is within the Holgate/Crawley interaction groups said that Crawley was being seen as a bit of an embarrassment.

But an annoying embarrassment...

 

[Esther12]

I never heard about Cochrane before. What kind of standards do they use in order to classify a paper as "scientific" or "evidence based", do you probably know? What was their conclusion with regard to PACE?

Cochrane reviews are farmed out to different authors. The PACE trial's Peter White was a co-author of the protocol for the review of exercise therapy currently being conducted, along with lead author Larun, who in an earlier review claimed PACE had a low risk of bias and then failed to engage with submitted comments raising concerns about her work.

There are lots of lengthy documents about Cochrane's standards available, and people have read them and highlighted a failure to properly impose those standards, but so far nothing seems to have changed. Simon Wessely was heavily involved with the Cochrane group which oversees CFS.

 

[Adrian]

Can anybody explain what this means?

I think it means they don't have sufficient people in the trial to show their expected effect size reliably so they talk about multi-arm stuff where they basically say because CBT and GET are similar we can agregate results.

 

[Inara]

Hi @Esther12, reading your post doesn't increase my trust and confidence in Cochrane.

Thanks for the info!

It seems to be always the same...no matter which "independent quality evaluation" you choose, there's always some form of influence.

 

[Adrian]

Hi @Esther12, reading your post doesn't increase my trust and confidence in Cochrane.

Thanks for the info!

It seems to be always the same...no matter which "independent quality evaluation" you choose, there's always some form of influence.

The Cochrane response to Robert Courtney's comments are very telling. They basically say they will ignore the outcome switching in the PACE trial and rate it highly anyway and also give unconvincing excuses for their own outcome switching.

 

[Dolphin]

 

[Solstice]

I understand it's a sneer at PACE, but let's not.

 

[Adrian]

I understand it's a sneer at PACE, but let's not.

It is but I think it is noticeable that F&M have a huge amount of integrity in how they have handled this especially in comparison to others.

 

[Dolphin]

I understand it's a sneer at PACE, but let's not.

It wasn't a serious suggestion and I'm amazed it is required to point this out.

 

[Solstice]

It wasn't a serious suggestion and I'm amazed it is required to point this out.

I got that, but something about it rubbed me the wrong way. I don't like to see even the vaguest link towards the skechy behaviour of the PACE "scientists", when it comes to good and thorough biomedical research.

 

[Barry]

I understand it's a sneer at PACE, but let's not.

More a wry observation I think.

I don't like to see even the vaguest link towards the skechy behaviour of the PACE "scientists", when it comes to good and thorough biomedical research.

 

[Adrian]

I got that, but something about it rubbed me the wrong way. I don't like to see even the vaguest link towards the skechy behaviour of the PACE "scientists", when it comes to good and thorough biomedical research.

I was assuming it related to one of the PACE supporters (and Sharpe) celebrating the Rituximab failure.

 

[Solstice]

I was assuming it related to one of the PACE supporters (and Sharpe) celebrating the Rituximab failure.

Allright, then forget I said anything.

 

[Dolphin]

 

[Esther12]

Ta D. I'd forgotten about this thread. Should add a link to the pre-print of "Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT":

https://www.researchgate.net/public...recent_major_trial_of_graded_exercise_and_CBT

And the thread discussing it: https://www.s4me.info/threads/rethi...-major-trial-of-graded-exercise-and-cbt.2282/

Maybe I'll edit the first post to include them too.

 

[Dolphin]

The method of patient reporting has also been questioned. As one participant says:

“After repeatedly being asked how severe...my symptoms were—in the context of…it’s just me not trying hard enough...I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough. When I was completing questionnaires...I remember second guessing myself and thinking for every answer: ‘Is it really that bad? Am I just not looking at things positively enough?’”

https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME

 

[Dolphin]

One participant in the original trial has contacted me:

“I was determined to be a part of the...trial because I wanted to get better—so if this ‘treatment’ could make me better I wanted to give it the chance to do so. I was assigned Graded Exercise Therapy. It never occurred to me that it would actually make me more ill. Nor did it occur to me that decline would not be documented, and that despite patients not recovering (or in some cases worsening), they would publish that the treatment was successful...It was stressed that I would only get better if I tried harder, and even though the graded exercise was clearly making me worse, my struggle and pain was dismissed.”

https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME

 

[Sean]

It was stressed that I would only get better if I tried harder, and even though the graded exercise was clearly making me worse, my struggle and pain was dismissed.

The appallingly cruel double-bind (Catch-22) nature of this situation needs to be pointed out very clearly to parliament.

It is impossible for patients to win. If they try to please the 'therapists' they end up sicker and having to lie to avoid displeasing those in authority. But if they refuse to do what they know from long bitter experience is going to make them sicker (possibly permanently), then they get labelled as uncooperative, and denigrated, denied further support, and at worst sectioned and removed from their family and friends (a cruel punishment for an adult, but an especially cruel one for children).

Both options are completely unsustainable and very destructive.

What the BPS cult have done is construct a superficial 'logic' that eliminates a priori the possibility that they might be exposed as being wrong. Any time the 'therapy' doesn't work, it is because of the patient's pathological attitude. Being a BPS cultist means never having to admit you are wrong.

Those who persist in forcing sick vulnerable people into this situation are nothing more than savages, no matter how slick their suits, rhetoric, or CV.