A general thread on the PACE trial!

Thank you Lucibee, you're the best.

Will try to put the PACE documents on a MEpedia page, if that's ok. That seems to be the easiest way for newcomers to search for information.

I suppose all these documents are public since they are either published by QMUL, the PACE-authors or obtained through a FOI?

 

I see the QMUL link in the science library is broken.
@Woolie

 

Thanks for the heads-up, @Snowdrop. Have fixed those links in the PACE thread in the Science Library, which you can cut to via this link:
https://www.s4me.info/threads/publications-from-the-pace-trial.60/

Here are the links from that thread that I checked and corrected:

 

There are so many flaws and inconsistencies in the PACE trial and now in the reply to the reanalysis that I wonder how many maybe most obvious flaws might still remain to expose.

I am sure this inconsistency has been discussed already, but couldn't find out whether it has been addressed yet:

Isn't the authors' conclusion, repeated in their recent reply in the BMC, additionaly misleading regarding the restriction that they only investigated persons who were able to attend the treatment sessions?

And is it not highly irresponsible to omit in their conclusion this limitation (excluding severely ill PWME)?

"INTERPRETATION:
CBT and GET can safely be added to SMC to moderately improve outcomes for chronic fatigue syndrome, but APT is not an effective addition."
(The Lancet 2011)

This interpretation generalizes the results and implicates that GET is safe for PWME regardlless how severely they are affected.

(Even the Cochrane review mentions the limitation in the conclusion. Tthe "plain language" version however doesn't.)

As an aside, can't access the Lancet paper ATM. Anyone else seeing only a blank screen following this link?
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

 

Agreed. But it also generalised it is safe regardless of whether their illness is really down to perpetuation of deconditioning or not. Given that for anyone correctly diagnosed it will not be, there is no assurance of safety no matter what the severity.

 

Yes of course.
But I think it is one of the inconsistencies in their own thinking, even if their underlying concept and the results per se weren't flawed, and therefore additionally and particularly irresponsible.

 

I found this thread with several quotes from academics about PACE in a convenient location:
https://twitter.com/user/status/1108525370888863744


The quotes are not sourced but I remember most of them as legit. Just a convenient list if anyone finds it useful. The quotes are in the replies to the tweet I linked to.

 

Is it ever valid to run trial for the purpose of disproving a theory, for the purpose of elimination? In engineering it is not uncommon to run experiments/tests seeking to eliminate certain possibilities, because that can be just as helpful for discovering the truth. I know PACE effectively proved ME is not self-perpetuated deconditioning, but I would have thought a well run independent study might be much more convincing to the wider world. I don't know how to prove it scientifically, but I know for sure my wife is not deconditioned. I would have thought that if she, and others similarly affected and motivated, wore activity meters for a few weeks, that would surely show she exerts enough energy to not be deconditioned, even though the rate at which she can expend that energy is limited, and sporadic. Would it really need to be an especially complex study? In my blissful ignorance it feels like it should not be that hard to demonstrate. Then maybe we could move on from all this cr*p.

To me this would be a distinct advantage of investigating mild and moderate sufferers, because severely affected pwME must inevitably suffer from deconditioning as a result of their ME, and would be a confounding factor.

 

That is pretty much what I have suggested needs considering to both MRC and NIH through their requests for ideas. I agree that it should be possible to exclude usefully various accounts of ME symptoms. That might exclude deconditioning (very possibly) and might also exclude a metabolic limit, indicating that the problem is with signalling rather than energy availability at the ATP level.

 

That would seem to be the reason that actometers are dropped .
It may also highlight if people sacrifice one activity to be able to do another. Ie increase in activity levels .

Given the marvel of the modern fitbit and the current proliferation in PhD studies of wearable detectors, it should not be beyond the wit of man to have something that captures activity , HR and sleep, batch calibrated to enable a study.
That might be meaningful data.

 

The CPET tests looked at fitness. On the first day ME patients were slightly deconditioned but no more than sedentary controls. Though that could have been because they were tired from getting to the centre.

There have also been studies that found that people who had been ill longer were not more deconditioned. If the BPS theories were correct there should be a linear relationship between length of illness and fitness.

I had never thought of them being particularly important but maybe we should collect these studies in one place.

 

Just came across this exchange on Twitter, someone asked Sharpe the most basic question of what his hypothesis of the illness is and he can't even answer that, pretends the question is stupid and blocked the user.

I can hardly imagine a more scientifically valid to ask an academic than "what is the hypothesis underlying the theory you have promoted for the past several decades". It's like the elevator pitch of a business venture in medical form, the very starting point from which decades of worked flowed upon.

"Not a scientific question". What a charlatan.

 

Click the image within the tweet

 

Has anyone drawn up a basic checklist of the flaws in PACE that could be used/applied to other trials?

eg lack of blinding, only subjective outcome measures, no objective outcome measures, using mean average rather than median (on recovery paper) etc

 

Not to have people scare him away, but criticism of PACE seems to be making the rounds:

https://twitter.com/user/status/1119678678395432960