2014 Impact case study - Queen Mary University of London (QMUL) - CFS

Didn't know where to post this or if it has been posted before;

https://www.qmul.ac.uk/wolfson/media/wolfson/ref-2014-results/UoA2-chronic_fatigue_syndrome.pdf

We have so much to thank QMUL for

 

There was loads of spin and hype from UK universities looking to take creadit for how much they've helped CFS patients in REF2014... looks like 2021 is going to be terrible too: https://www.s4me.info/threads/matth...teria-for-assessing-research-in-ref2021.3170/

 

Here's KCL on CFS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=41185

Cumbria on CFS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=21476

Oxford on CFS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=17492

Edinburgh on MUS and CFS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=23887

Nottingham and MUS and CFS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=28021

Liverpool on MUS: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=31739

They've achieved so much, according to them.

 

Big giveaway in the Nottingham information - describes MUS as a condition,

So what’s that then the condition of being foolish enough to have an illness Doctors don’t know the cause of.

 

We sort of own them thanks - for so kindly assembling this historical document.

I'm saving this one, for when pace/get/cbt is truly devaluated and generally known to be bad science. An impact case study from QMUL themselfs, well summarizing of the widespred impact made by this shenanigans - while everyone looked away.

They can't even claim patients advocates put a negative spin on things, and that it wasn't really like that - they wrote it themselfs.

 

This piece should have been titled: Stroking Wessely's ego. I don't think a single sentence is accurate or relevant.

Quite the lie right here:

This "dialogue" can be summed up as a cardboard cutout of Wessely holding a sign that says "YOU'RE WRONG" and another of Sharpe that says "HAVE YOU READ THE PAPER?" and basically blasts at full volume (to make sure we can't get anywhere close to you it) "JUMP ON THE STOP MAT, you lazy malingering type A personality". Then there's a phone number for complaints that is a disconnected line that basically screeches insults at you when you dare calling.

They have truly invented a form of medicine where the patient is completely irrelevant. It's quite a sight to behold, of the morbid fascination type.

 

Not to mention the fact that Wessely in a possibly unguarded moment on twitter opined that he was regretful that he had not listened to patients more carefully at the beginning.

I don't have the ability to spend the time relocating that tweet. Perhaps someone else knows where to find it.

 

Will they even have any data for this? By their own admission no one is actually monitoring anything. They're still pointing to decade+-old research as evidence because they know they can get away with not doing any follow-up. So by then they'll just likely continue pointing to the, by now mostly two decades-old, research as evidence that it works if you believe in it.

I haven't seen any movement on this so far: asking them where is the damn data. Because they deliberately avoid recording any. NHS point to the clinics saying they are responsible for the follow-up and the clinics don't do any of this. They just point to the cherry-picked research and say that's good enough.

It would definitely look very bad if they had to show evidence, but so far have avoided this problem entirely and we can't make them. They can definitely get away with this. They already have managed for over a decade without having to show any evidence or even pretend to be monitoring outcomes.

 

They indeed have handed each other shiny awards and very good tenured positions. Wessely is a knight and will likely be a lord. The psychosocial ideology is expanding. Very good achievements. As long as you don't bother looking at the catastrophic outcomes for patients it's been very good for the researchers' careers.

 

Three of these were used in this paper:

https://journals.sagepub.com/doi/10.1177/1359105317697324

 

Uh, uh. That's not how any of this works. It's a valid issue, it can't just be "rejected" as irrelevant. They have built their entire career and their employment and reputation depend on this research holding up, which explains the length to which they went to cheat their way to a positive result and make outlandish claims that their own research doesn't back up.

They are only conducting unblinded trials with self-reported outcomes that depend on extensive interactions with patients throughout the entire study, giving them information that they then used to move the goalposts to give themselves a better outcome. This is a problem precisely because of the methodology they choose and they have precedent adapting their research by peeking at the data and cheating with it.

With hindsight, this will be incredibly damning. Of course their bias influenced everything they did and caused significant issues. Arguing that this can simply be rejected because whatever is unethical and unprofessional.

And since politics have clearly played an outsized role in this, it's fitting to quote from All the presidentpsychiatrist's men: "the truth is, these are not very bright guys, and things got out of hand".

 

Somebody who was reading this thread noticed the entry for Kings College London and thought it might be worth highlighting the figure given for the PACE Trial e.g. on Twitter.

As there seem to be conflicting figures given by different sources, I'm not sure I'll do it myself.

 

I knew I'd seen that figure somewhere! Likely to be of interest to @AR68 too.

 

Don't disagree. Although since writing that I have been thinking that the true meaning behind the comment as I recall it was that he was sorry for the BPS cause. If he had taken the serious ME cases seriously I think he believes he could have mitigated the blow-back that the BPS crowd has experienced from seriously ill people who will not be shut up/silenced. If he had split them off early the fatigue narrative could go on unencumbered. As it is now we have put a dent in their timeline for ruling the illness world with their 'solution'.

It then becomes another prime example of how he says something that on the face of it sounds apologetic and can be interpreted as directed toward the patients but is actually self-pity.

 

Yes, with some people this is a strategy to convince how open and honest they 'obviously' are; it's human nature to warm to someone who does this, and to be more trusting of them. Con-artists are supremely good at it for instance. If someone apparently "opens up" about their oh-so-human failings, most people are much less likely to believe them capable of engaging in darker misdirections.

 

I feel like Wessely was starting to try to find a cautious retreat, acknowledging that maybe he was a bit too dismissive of patients' concerns. Then there was an indication Cochrane might withdraw their exercise review, and that led to them decided that they wanted more of their smearing of patients' concerns.

 

where did he say this?

 

There was this, but it is not entirely clear.
www.thelancet.com/journals/lancet/article/PIIS0140-6736(07)60802-2/fulltext

With hindsight he admits “I could have been more diplomatic. I wasn’t thinking about the language I used or its impact. I was just keen to get into print.” He understands why patients would prefer to be told they’ve acquired a virus. Nowadays, he reckons, he can make a better fist of handling controversy.

EDIT to include quote and to add this

Sometimes when one looks back, one gets a sense of “why on earth did I do that?”. But not in this case. Yes, one would do some things a little differently. And yes, my writing style has improved over twenty years. But overall, I think that we (and like all medical research, it most definitely was a “we”) achieved quite a lot for the benefit of medicine and patients.
www.simonwessely.com/index.php/cfs-personal-story/

He appears to think that the problem may have been one of form, not substance. I am not sure many would agree.