PACE trial commentaries in the Journal of Health Psychology to be made open access

[Molly98]

Thank you @Jonathan Edwards, this is a cracking paper covering many angles in addition to what we have already seen.

I really liked and appreciated that you treated the patient community with dignity and respect and most of all as fellow human beings with intelligence and feelings and not a bunch of psychopathic militants opposed to science, nor pathetic, weak creatures who do not know their own minds and need to be told what is best for them.

This was very refreshing to me.

 

[trishrhymes]

Thank you so much, @Jonathan Edwards.

I think one of the most important things in this article is that you spell out your respect for the patient community and highlight the contrast of this with White bleating on about patients attacking him.

I think you very politely show White to be a dangerous unscientific fool.

You've made my day.

 

[Daisymay]

Its here
PACE team response shows a disregard for the principles of science


Jonathan Edwards
http://journals.sagepub.com/doi/full/10.1177/1359105317700886

Splendid, thanks very much!

 

[Sidereal]

Its here
PACE team response shows a disregard for the principles of science


Jonathan Edwards
http://journals.sagepub.com/doi/full/10.1177/1359105317700886

This is REALLY GOOD.

 

[slysaint]

My fave line:
"But it makes no sense to say that if you cannot work out how to do a reliable study then an unreliable study can be taken as reliable."

 

[BruceInOz]

Thank you @Jonathan Edwards. Absolutely brilliant. I have always thought that not enough was being made of the central problem of unblinded + subjective.

 

[A.B.]

Talking about the subjective outcomes and lack of blinding problem is going to make some psychologists and psychiatrists very uncomfortable. Designing studies of psychological and behavioural interventions that are flawed for this reason seems to be very common.

It would be nice if we could save not just ME/CFS patients from more poor science but also fibromyalgia, depression, anxiety, psychosis, IBS, etc. patients.

 

[Gijs]

Dear professor Edwards, you nailed it! Thank you!

(...)''White et al. conclude that they stand firmly by the findings of the PACE trial, presumably because of their inability to understand its basic flaws. As has been suggested by others, the flaws are so egregious that it would serve well in an undergraduate textbook as an object lesson in how not to design a trial. Its flaws may have only been widely appreciated recently simply because those involved in trial design in other disciplines were unaware of its existence. Now that they are aware, there appears to be near unanimity''.

 

[lilpink]

I gather my PACE commentary piece is now published although I have not tried to track it down on the net yet.

Now read it. It really is excellent.. have shared to other social media portals..it was hard to pick out one paragraph as all hit the mark like a battery of Exocet missiles. I think this probably made the loudest 'bang' :

" In short, the trial was set up in such a way that the default assumption would be that systematic bias due to the usual factors associated with subjective outcomes in an unblinded setting would be operating full tilt. It would be quite surprising if the treatments advertised as best had not led to a better reported outcome."

 

[Cheshire]

"Insightful" comment from Sir Simon about @Jonathan Edwards ' piece:

https://twitter.com/i/web/status/847036440064266244

Edit: I can't see SW's tweet, here's the content:

Simon Wessely‏@Wessely


.@helloseanwilson Subjective & objective measures differ.CFS fatigue is central.We rely on self report/PROMS.Not new http://www.simonwessely.com/Downloads/Publications/CFS/31.pdf…

 

[Valentijn]

Excellent article, and well worth reading all of it. PACE authors are getting rather mercilessly held to account for the stupid things they've said and done.

 

[A.B.]

So Weasely's argument is that CFS is all about fatigue and that they should not or cannot use any other outcomes.

He sidesteps the central argument of subjective outcomes + lack of blinding leading to biased results, and then seems to suggest that a flawed trial is the best they can do. But Edwards anticipated that kind of argument:

But it makes no sense to say that if you cannot work out how to do a reliable study then an unreliable study can be taken as reliable.

 

[Solstice]

So Weasely's argument is that CFS is all about fatigue and that they should not or cannot use any other outcomes.

He sidesteps the central argument of subjective outcomes + lack of blinding leading to biased results, and then seems to suggest that a flawed trial is the best they can do. But Edwards' anticipated that kind of argument:

The old nutjob is getting pretty predictable, isn't he?

 

[Jan]

I'm having another one of those days again when I want to kiss Jonathon

 

[dangermouse]

I'm having another one of those days again when I want to kiss Jonathon

Along with Jonathon Edwards article, your post has made my day!

 

[Jan]

Along with Jonathon Edwards article, your post has made my day!

LOL, I think there will a long queue behind me of both men and women wanting to kiss our dear Prof Edwards!

 

[user9876]

So Weasely's argument is that CFS is all about fatigue and that they should not or cannot use any other outcomes.

He sidesteps the central argument of subjective outcomes + lack of blinding leading to biased results, and then seems to suggest that a flawed trial is the best they can do. But Edwards anticipated that kind of argument:

I'm not sure what his argument is but his tweet is incoherent given the paper - as with many of Wessely's defenses of PACE it misses the point.

But then paper he points to is poor in that it fails in providing an analysis of what it means to measure something and the ways that could go wrong. Instead it just says its good people are trying to measure something that is hard to observe directly.

He fails to appreciate that such measures can go wrong and that they may lack the necessary properties for reporting of clinical trials. Or that there are alternative ways to measure a proxy for fatigue such as activity. If one method is liable to bias then maybe multiple measures are necessary and correlation expected.

Jonathan's paper points out the inability of the PACE authors to understand and reason about criticisms. I think their and Wessely's responses should be seen as a damning the British education system and its ability to teach critical thinking and logical thought.

 

[Art Vandelay]

Thank you so much, Dr Edwards. This is a devastating critique of PACE.

My favourite bit:

However, I think the claim that the effects of CBT and GET were maintained at two and a half years (Sharpe et al., 2015) is worth challenging again because it is not what any reasonably intelligent person would conclude.

 

[Barry53]

It can be read here:
http://journals.sagepub.com/doi/full/10.1177/1359105317700886

Not got time to read all this yet but it is blindingly good @Jonathan Edwards. The simple observation that PACE did what nothing else reputable has done (or indeed could do) ...

...it is an unblinded trial with subjective outcome measures ...

... really cuts to the heart of the matter. Will read the rest later. Really hope this spreads to many media outlets. The BBC would be good! Many thanks.

 

[ScottTriGuy]

Awesomeness @Jonathan Edwards

My fav...

"I find it particularly disappointing that at the end of White et al.’s response there is an uncalled for innuendo that somehow in writing his editorial Geraghty might be inhibiting future high-quality research. I think Geraghty is to be congratulated for voicing a reasonable opinion with the admirable aim of inhibiting poor research and calling for something properly grounded...

...To suggest that when these people voice their opinions they are doing a disservice to their peers seems to me inexcusable."