Brave Sir Prof Wessely discusses death threats 29th March 2017

lilpink

lilpink

Senior Member
Messages
988
Location
UK
Valentijn said:
Yes, but it's more polite and productive to pretend that our new supporters had an excuse to not listen to us before :p
Click to expand...

I tend to find such politesse wanes over almost 5 decades of this disease. But I take your point. My concern is more to do with the fact that the Teflon coated Wessely school seem capable of shutting down any debate or dissemination of what was really going on through the whole process. Their ability to simply say 'nothing to see here ..move along' and for that message to trump truth. The machinery in place that allows that to happen is the issue. I'm very happy to embrace media, science etc when it decides to ignore that 'misdirection' but I do wish more people had been more curious earlier on in the process. 'In order for evil to flourish, all that is required is for good men to do nothing'. I wouldn't agree that 'now' is the time to start being overarchingly polite however. The war is not over. It might only be the beginning of the end.
 
U

user9876

Senior Member
Messages
4,556
lilpink said:
I'm glad Twitterland is responding to this but it's not strictly true is it? It *was* a case we knew PACE was fundamentally flawed years ago because the data they were perversely happy for us to see in their published papers didn't add up in and of itself. That's why people such as yourself, not to mention the monster-tome by Hooper and Williams, were able to dissect PACE to elucidate its faults years before the ICO demanded QMUL to release the specific data Matthees et al had requested. That data is equivalent to the 'belt and braces' to support the contention that the PACE Trial was seriously flawed, (and almost certainly fraud (imo) ) but had anyone outside the ME community listened and believed what they were being told they would have agreed that the alarm signs were there right at its inception. Thankfully some people outside the 'Community' did listen (Tuller and Goldin amongst them) but it's been an uphill struggle for even those individuals with their excellent connections to push through the carapace the PACE PI's built around this Trial.
Click to expand...

I was about to say the data that has been released doesn't show PACE was flawed (but does suggest it). What the data shows is that they spun their results to be much better than they would have been in the protocol without making that clear.

To my mind the trial is obviously flawed in that the main measurements are subjective scores when two of the interventions are aimed at changing patients views of symptoms. The data does show some of that in that the 6 minute walking test results were not as good as the subjective measures and less correlated with the subjective scores on 2 interventions (i think). So the data released does support this view. The fitness data would support this view as well but they have only released graphs and refused to release even the numbers behind the graphs.

Of course there are many other issues with the trial and its conduct and the release of the full (anonymised) data set may help show some of the other affects.

But basically the data showed they lied to us and an analysis of the protocol says they ran a meaningless trial.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Barry53 said:
You can still smile whilst biting hard though!
Click to expand...

Lol. Indeed. I think all of us with this disease are very good at appearing one thing whilst feeling another. Of course not in the way the WS would have it. I have spent the last 47 years, every moment of every day of those last 47 years, trying to wear a better veneer to present to the world when compared with how awful I might feel inside. In fact the very reverse of what we are told we are guilty of. IOW I've had a lot of practise, so I think 'smiling' and 'biting hard' are easily doable ;)
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
user9876 said:
I was about to say the data that has been released doesn't show PACE was flawed (but does suggest it). What the data shows is that they spun their results to be much better than they would have been in the protocol without making that clear.
Click to expand...
I think what is clear, is that if the trial authors had not try to grossly spin a weakly designed trial, but had instead been above board about their findings, then PACE would have probably sunk into obscurity like - I imagine - many other inconsequential clinical trials. Not great, but maybe would have been seen as an honest but ill-conceived endeavour. But it is what they did afterwards, to try and spin a silk purse out of a sows ear, that is probably the greatest crime; so that it (and they) did not sink into deserved obscurity, but instead turned it into the corrupt vanguard of mistreatment we know today.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
lilpink said:
'It's not the crime, it's the cover-up'? Only to a point. I'd argue PACE was premeditated. Otherwise why should it be the only research (part) funded by the DWP?
Click to expand...
Actually I do agree with that. When writing my post I had momentarily forgotten the DWP implications, which I have banged on about elsewhere in PR. Thank you for the reminder. All the more reason for a public enquiry ... and all the more reason it will be very hard to get one.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Solstice said:
I wouldn't say meaningless, we've obtained definitive prove that CBT/GET cures noone, not even those struggling with minor fatigue issues. It's the only positive that's come out of this in my opinion.
Click to expand...
And if only that had been reported honestly in the first place, the lives of a great many people would have benefited from being fairly treated, rather than abused by the system.
 
Y

Yabisa

Messages
43
keenly said:
He


Establishment shills do not get death threats. Those who stand up to the Establishment do, and many end up dead. Simon is a sociopath.
Click to expand...
That'
keenly said:
He


Establishment shills do not get death threats. Those who stand up to the Establishment do, and many end up dead. Simon is a sociopath.
Click to expand...

You're right, not just a sociopath, a PSICHOpath.
Who else , in their sane mind, can think first in his EGO( and money ) than a DOCTOR? who doesn't care the health of their patients?
I really think we ( patients ) should DENOUNCE him in front of human rights court.
Not everything can be SCIENCE.
 
R

RogerBlack

Senior Member
Messages
902
Cheshire

Cheshire

Senior Member
Messages
1,129
A

arewenearlythereyet

Senior Member
Messages
1,478
Grrrrrr. I feel a "Jan" coming on :mad::mad::mad::mad::mad::mad:

The man is just plain thick if he can't see what's as plain as the nose on his face.

He's right about anxiety....though isn't his job to make it go away rather than create it?
 
C

Chrisb

Senior Member
Messages
1,051
I like the bit where it says "Simon Wessely introduced, it is remarked how many positions he has.." Sadly it fails to enlighten us as to how many of them are contradictory.
 
Binkie4

Binkie4

Senior Member
Messages
644
A couple of days ago while dipping into Osler's web, I came across Cheney's assertion that 20-50% of ME patients have lost their fingerprints or parts thereof. This fits with the difficulty I had getting into US last time I went. Border official told me I would make a good criminal because I would leave no fingerprints.

Is it my false illness beliefs that have erased them? Wonder what explanation Wessely would give?


( posted before seeing Janet Eastham's record- thank you to Janet)
 
Last edited:
You must log in or register to reply here.
Back