BMJ: Pressure grows on Lancet to review “flawed” PACE trial

exactly. this is why you have a study protocol that lays out beforehand how your team plans to analyze the data once its collected.

 

My old science teacher would have loved you!

A long time ago, when I was a little girl a stroppy teen, science experiments had to be written up in a certain way and you had to show your raw data, plus you had to list your assumptions, then you wrote up your conclusion.

If your assumption was unproven, unfounded and not backed up by the data it was there for all to see.

Even if your actual experiment went well, if your methodology and reporting weren't good enough it dropped your grade.

If people were being taught this from the age of 12, when they were lucky to get 50p as pocket money, I find it absurd that they'll give people who don't understand this basic principle £5 million!

 

Straws, bricks, pigs ...

Can somebody say "Once upon a time there were three little ..." and have done with it?

 

Just coming back to this again, I think there is of course a truth in this which everyone knows but MS and co have always 'conveniently' overlooked. But with that special BPS-brigade twist:

1. PACE almost certainly did include participants who did not have ME, but whose outcomes where nonetheless gathered with no true distinction of whether they had ME or not.
2. The (mis)reported outcomes of PACE have been used and abused to bolster the use of CBT-a-la-PACE and GET as treatments for ME, even though PACE did not uniquely trial ME.
3. Muddling up illnesses within a trial, and then presenting treatments that were arrived at on a whole-cohort basis, as being suitable for a poorly identified trial subset (that itself was likely unrepresentative of the population in general), seems itself to be dreadfully amateur.

MS et al have never ever tried to set the record straight for PwME, even though they would have been best placed to do so, and even though they have (sort of) admitted the treatments they trialled were not uniquely for ME. If there is ever an inquest, this to me is a key point that should not be overlooked, when they make their stock announcement that all they ever want is the best for patients.

So yes, PACE did not really target ME, yet everything in its literature, from the bottom up, claimed it did; conflation to suit the authors, DWP, disability insurers, NHS funding, etc.

 

Published Monday, May 11, 2015!

 

Nothing Wessely and co have done targets ME, that is the whole crux. Their conflation with fatigue has caused chaos and untold harm. The PACE architects would often say in the 'small print' that ME and CFS may not be the same thing (or words to that effect) but then would go ahead and conflate anyway. We were fighting this conflation long before PACE. PACE is just the disastrous outcome of conflation.

 

Technically, they say that ME is nothing more than the patients' belief that they have an illness called ME. However, contradicting themselves, they did apply the London criteria for ME (based on Ramsay) to a subset of patients, in addition to the weaker CFS criteria.

So I think we can't say it wasn't tested on ME patients, but I think we can say it probably didn't including many if any moderate to severe patients by its very nature.

Whether the London criteria were applied to their already recruited, CFS-defined patients or to patients that were first diagnosed with those ME criteria might make a difference, though.

 

I may be wrong here so feel free to correct.

I don't think they did apply the London criteria. They applied their own modified version of the London criteria and simply continued to call it the London criteria.

If memory serves Ellen Goudsmit was one of the authors of the London criteria and has tried to point this out to them.

 

Well this is their modus operandi, after all. 'Make it up as you go along.' It's entirely feasible this happened.

Either way, I think it highly unlikely that none of their patients had ME at all, even if only by accident. Regardless of who they included, however, the treatments still didn't work.

 

Does anyone know if any of the rapid responses have been published in the lastest print edition of the BMJ?

 

Since I was living in France as an 18 year old undergraduate - 36 years ago - when my illness first manifested I am v pleased to see this article.

 

The trouble with the LTFU is that there are ways of arguing away the absence of treatment effects. Because a good number of the SMC group went on to receive GET or CBT after the 52 weeks of the trial were up.

I know, I know, in the Rethinking paper, they looked at this, and couldn't find any support for the idea that "extra" CBT or GET was the problem. But still, this crowd so like to present absence of evidence as evidence of absence.

Then to make matters worse, there are the hints in the LTFU paper that the sample that completed the survey may consist largely of the "troublesome" patients (meaning, a large proportion of those participants were members of patient organisations).

Finally, there's the argument that its a valid goal to "accelerate" improvement, get people feeling better faster, even if they would have found their own way eventually.

Of course, I don't think any of these arguments fly. But always good to know our enemy.

 

What they mean is that patients will always carry with them the psychological weaknesses that make them prone to "unexplained" illnesses. So next time they get themselves into a tizzy, there's no guaranteeing they won't go off again.

Its sometimes hard to understand their logic until you view things from their belief system.

 

I'm very worried about this little side-step into psychologisation that we see in Kerr's letter. We actually don't know if psychological stress can cause reactivation of herpes viruses, but we know for damned sure that immunological stress can (e.g. a serious new infection).

It really worries me, the way people can't seem to let go of the psychological nonsense, even when they've seen how wrong it can be.

 

I know, I know! "If the results go the way we planned, we win. If they don't we still win".