A general thread on the PACE trial!

My recollection is that it made clear the parameters of the investigation and either implied or stated that other matters were outwith the remit of the enquiry. It is hard to know whether it would be more serious to fail to understand that, or to misrepresent it.

 

It also sites the Cochrane review as a 'seal of approval' for PACE; a lot hinges on Cochrane so whatever they decide in May is crucial. Would be good to have a 'joined up' response ready from all advocates for whichever way it goes. [ ie @dave30th @Brian Hughes @Carolyn Wilshire @Tom Kindlon @JohnTheJack ] and all others.

 

Who has given Helland authority in this area? She's clearly not up to it. Is there anything that can be done to get her to debate her positions?

 

She used to work in prof. Wyller's team before becoming the leader of the competence center for ME/CFS.
There was recently a petition with over 7 000 signatures asking to remove the management at the competence center. The center also got a rather critical evaluation from the Norwegian Directorate of Health. But nothing has changed.

 

The use of the HRA report is perhaps not unexpected by these people. I was, however, interested, when Jerome Burne initially assumed it was authoritative on PACE quality. I explained to him that it was just an ethical review.

I don't think declarations like this from BPS people in Norway will alter the Cochrane decision. I think that will depend on internal politics and how the real scientific issues are to be viewed. Cochrane is fully informed of all the scientific problems, it is just a question of how they respond to them. David Tovey could see that the Larun review was not valid. My impression is that he did not want to fight against those who pointed out that Larun could refuse to withdraw. The new editor will have to show their ability to impose proper standards. If the goings on at the Board are anything to go by the result may not be exciting.

 

Didn't really know where to put this but it was too perfect.

And since I can imagine Sharpe tweeting this genuinely believing he is the left column, I guess a solid dose of Dunning-Kruger applies on top of that.

 

I wouldn't want to be in either of this guy's columns. People like this are as much the problem as any one else - giving advice from a position of ignorance (familiar?).

A sceptic defers to nobody. He (or she) thinks.

 

A journal for physiotherapists has picked up this story and writes that the HRA-report concludes PACE was a thorough trial. The final decision from Cochrane on whether or not to retract the Larun review on graded exercise therapy as ME treatment is due now in May. It's bad in itself to give physiotherapists new reasons to push GET on ME patients, but also very convenient timing for the biopsychosocial crowd to have articles with this version of the HRA report in Norwegian media.

Fysioterapeuten: Omstridt ME-studie: Fant ingen metodefeil
google translation: Controversial ME-study: No method error found

HRA, which is a kind of watchdog for research, has concluded that the study was verifiable and met all the guidelines for studies that applied at that time.

"There is no reason to consider the PACE study to be of poor quality," said Jonathan Montgomery, head of the HRA, in a letter to the Research and Technology Committee.

 

Did Montgomery actually say that?

 

@Jonathan Edwards : Here's Montgomery's letter to Norman Lamb

https://www.parliament.uk/documents...Research-Authority-to-Chair-re-PACE-trial.pdf

discussed in this thread
https://www.s4me.info/threads/uk-he...ce-answer-to-mps-question-february-2019.8045/

 

He said these things:

"While the quality of the trial design has been challenged, it has not been discredited."

"It would not be appropriate for the HRA to seek to resolve these debates about the quality of the study."

"The main funder was the Medical Research Council whose peer review processes would be regarded as robust. It was appropriate for the REC to rely on that scrutiny as assurance of the scientific quality."

"The continuing debate about the design of the study is not an indication that it should not have been approved, but if there was a general and consistent view that it was of poor scientific quality then it would give us cause for concern. This is not the case in relation to PACE."

"The robustness of the PACE trial has been considered in a Cochrane review that classified it as high quality."

 

So none of those statements adds up to what was quoted in Norway. One might seem to :

if there was a general and consistent view that it was of poor scientific quality then it would give us cause for concern. This is not the case in relation to PACE

But they are not saying that it is not the case that PACE was of poor quality, simply that there was no general and consistent view that this is the case - which is probably true.

All these statements boil down to 'other people think it was OK. I am giving no opinion of my own.'

 

The more evidence that emerges proving ME is not due to deconditioning, the more it must (surely?) prove their trial claiming to prove it was had to have been flawed. The issue then will be to convince people that it was not a case they could not have been expected to know better due to lack of wider knowledge.

 

On style. Not substance. HRA doesn't deal with substance, just if paperwork and applicable rules were followed. Which of course people pushing this out of self-interest fully know, highlighting further how corrupt and incompetent they are.

Medicine should never be based on deceit, shouldn't even contain any. Ethical failure built on moral bankruptcy.

 

Just to note that I presented my thoughts about trials of therapist-delivered treatments for ME and MUS to the department of Medicine at UCLH today. The session seemed to go well and comments were positive. Nobody disagreed with my analysis. I do not expect any immediate spin off from this but it is a way to start getting colleagues aware of the issues. I think the audience found the topic interesting and thought provoking.

 

https://twitter.com/user/status/1134109870557413376

 

Various people have asked me to post my Grad Round slides and I thought here would be as good a place as any.

 

Thanks for posting and of course for giving the talk.

Were the audience shocked at what they heard re the standard of the "science" ? And the links with the whole MUS issue?

 

I doubt they were shocked. I suspect most of them were not at all surprised that trials of therapist delivered treatments were poorly constructed. But I think a good proportion of them took the point that things did not look very good. Certainly nobody defended the methodology. There was quite a lot of laughter when I showed the data slides and mentioned the change in outcome threshold.