Appeal to the FTT for information from QMUL rejected

I wonder if you could ask another general question at Grand Rounds: “Sometimes it is preferable to divert from pre-registered outcome measures in clinical trials in order to make the results ‘more consistent with the literature, and with [the authors’] clinical experience.’ Agree or disagree?”

 

I've been pondering this a lot over the past few days (as one does). Much has been made of criticisms and harrassment being part of a "concerted campaign", which as we know is not true in a strict sense, but social media is a tool for just that. The very fact that we are communicating on a forum (or on Twitter or elsewhere) could be viewed in that light. And it does worry me that folks acting alone have the potential to do a lot of damage, particularly if we don't know what others are up to. For example, I was unaware that some were sending barrages of emails to certain people whenever they published a blog about them (or their organisation) - and that could definitely be construed as "harrassment". I'm not sure I would want to be associated with that, but I know I already have been.

 

That's a head-scratcher for sure. More people making the same allegations obviously should make the substance more credible.

That demonization PR campaign certainly did what it intended to do. Wessely's inane rants about "the ME lobby" go back to the late 80's and are still as ridiculous as ever. It will be a terrible look once people understand that all along it was very ill people, barely capable of taking care of themselves, making desperate pleas for help and sanity.

Basically The Killer Rabbit of Caerbannog, except this isn't fantasy so it's just a harmless rabbit but the unhinged rants about its genocidal lethality are real.

 

They even claimed there was a special police unit to monitor the dangerous ME militants.

One person I talked to was even convinced there had been a car bomb. I don't know how he got that idea.

 

Extraordinary claims that somehow have no evidence.

Almost... like... a... pattern............... Almost.

 

I was pondering @Jonathan Edwards' post, and whether a FOI request might be less likely rejected if requested by someone acting in pursuance of NICE seeking evidence for a guideline review, and if done with NICE's blessing. But I'm out of my depth on this, just idle musing really.

 

Do you have a reference on this?

 

I'd assume it's a reference to the recent response to Wilshire et al: "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

Wessely has said similar things as well. They don't seem to understand the problem with what they're saying, as if redefining 'recovery' in order to produce their desired results is A-okay.

 

I think we may have to be careful about rejecting this claim. It may be that it is a distortion of the truth, displaying the tendency to put SW1 at the centre of the universe, around which all revolve, rather than an outright fabrication.

A few weeks ago I did come across a reference to a police unit which could well have been the one referred to. Given time I might even remember the details. From what I recall it was concerned with the monitoring of persons displaying obsessive behaviours, who might pose a risk. It was not specifically concerned with ME activism and certainly not specifically with SW.

It seems that there may have been exaggeration for the sake of effect.

 

Wessely said something to the effect that if they did not relax the definition of recovery then nobody would have "recovered". Cue laughter from audience. So funny.

Those two combined make a damning case of obvious fraud but whatever, apparently that doesn't matter anymore.

 

I don't really understand how they think of their fiddling of criteria to achieve results that fitted with their preconcpetions, but they clearly don't thikn that they've admitted to fraud. I'd like to have them speak more about it. It reminds of of the Wasink blog:

http://www.timvanderzee.com/the-wansink-dossier-an-overview/

Ahh... I see what you were getting at there. Probably a challenging point to make to someone who hasn't been following the history though.

Patients are told that their belief they are ill is not based on underlying pathology but that often seems to be by doctors who have a confused understanding of something they half remember reading/hearing. The problems with the PACE researchers' work has certainly made things worse though.

I'm not sure that it's right to say that there is a model which underpins PACE, other than a form of 'pragmatism' which assumes it's legitimate to manage patient cognitions on the basis of results from poorly designed trials (though the researchers clearly favoured two of the treatments tested and the models underlying them).

 

Are they trying to be funny?