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Peter White (PACE) in the Guardian

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user9876

Senior Member
Messages
4,556
Marco said:
Some interesting recent comments on the Bad Science forum including a link to some independant statisticians who have presented the raw data distributions in graphical form and are not impressed :


http://badscience.net/forum/viewtopic.php?f=3&t=34704&start=275
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I do look at the bad science forum when pace stories come out. It is strangely amusing to see the contortions that those who feel the are guardians of science will go through to defend PACE.
 
U

user9876

Senior Member
Messages
4,556
Research 1st said:
Your wish is my command.



Source:
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
By Julie Rehmeyer
21/09/2016
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comments
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Wessely said:
n. In essence though they decided they were using a overly harsh set of criteria that didn’t match what most people would consider recovery and were incongruent with previous work so they changed their minds – before a single piece of data had been looked at of course.
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It is quite clear that they had seen the data by the time they changed the recovery criteria. The normal range thing in the lancet was reported to be a post hoc analysis based on a request by a reviewer. I strongly suspect they did not have approval either since they normally claim that the statistical analysis plan was approved and this has no mention of recovery. The stats analysis plan also didn't mention protocol changes it just rewrote the protocol.
 
U

user9876

Senior Member
Messages
4,556
AndyPR said:
I've spotted several that disappeared soon after, what they seemed to have in common was the use of the word fraud. As accurate as we may think that is, I can reluctantly understand why they may moderate those posts.
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I've had posts disappear in the past that just mention the battle for PACE data when an article was talking about FoIs and proposals to change the law. I think there is at least one moderator who is very supportive of PACE. I did complain to the readers editor but they just said complain to the moderators but they never reply,
 
Q

Quilp

Senior Member
Messages
252
Does anyone else find this funny ? Once an article like this would infuriate me.... he's there with his hand in the cookie jar. We have it on CCTV, his DNA is everywhere and the police have him surrounded. He refuses to make a statement and when he does, he blames the cookies.

He claims he wasn't there, that the man on the CCTV is a Nigerian, and that the nuns who first spotted him were on a hen night. And besides it couldn't possibly be him because at 2am he was in his flat doing research into M.E. and if you don't believe him ( said his legal representative ) ask the busty blonde who was horizontal with him for six minutes at at time.

Not only will he be exonerated, his impeccable name free from any suggestions of impropriety, they'll probably give him a gold medal.....or a knighthood....or a promotion.......

Is anyone sick of this charade, does anyone need a holiday....does anyone stand by the original findings blah blah blah.
Safer in Afghanistan yawn bloody yawn, thing of beauty, yeah whatever chief, militant crazies yadda yadda yadda.
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Quilp said:
Does anyone else find this funny ? Once an article like this would infuriate me.... he's there with his hand in the cookie jar. We have it on CCTV, his DNA is everywhere and the police have him surrounded. He refuses to make a statement and when he does, he blames the cookies.

He claims he wasn't there, that the man on the CCTV is a Nigerian, and that the nuns who first spotted him were on a hen night. And besides it couldn't possibly be him because at 2am he was in his flat doing research into M.E. and if you don't believe him ( said his legal representative ) ask the busty blonde who was horizontal with him for six minutes at at time.

Not only will he be exonerated, his impeccable name free from any suggestions of impropriety, they'll probably give him a gold medal.....or a knighthood....or a promotion.......

Is anyone sick of this charade, does anyone need a holiday....does anyone stand by the original findings blah blah blah.
Safer in Afghanistan yawn bloody yawn, thing of beauty, yeah whatever chief, militant crazies yadda yadda yadda.
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Agree, their behaviour is beyond pathetic. They have now become a laughing stock, and seem to be their own worse enemy. God knows who's advising them. There's a chance this article is going to make things worse for them. The comments below are very good, and anyone reading through them would realise there's a massive problem and a growing scandal with the PACE trial and the so-called researchers promoting it. The Guardian though is not a newspaper I have much faith in when it comes to this subject. It's impossible though not to think of the ruined lives that have come about as a consequence of inappropriate 'therapies' and misdirected research funding. We have lost decades because of these horrible people.
 
Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Peter White quote from 2004 below, info that now is useful for those interested in recent developments of a PACE nature.

Peter White, however, argues against the motion, stating:

“The concept of a general functional somatic syndrome does not lead to better understanding of aetiology. For instance, there is a five-fold risk of chronic fatigue syndrome in patients suffering from infectious mononucleosis, whereas there is no evidence that fibromyalgia is caused by infectious. Lumping (them) together would have reduced the chance of finding this effect (because of dilution). It is only by separating…that we will advance understanding of causation. I conclude that the concept of a general functional somatic syndrome is unhelpful in understanding illness, aetiology, treatment and outcome”.

Source:British Journal of Psychiatry 2004:185:95-96 (IN DEBATE: There is only one functional somatic syndrome), psychiatrists Simon Wessely and Peter White


Magaret Williams then goes on to explain the Peter White quote above being hypocritical.

''This is notable, because it is the same Peter White who is heading the MRC PACE trials on “CFS/ME” that from the outset are specifically designed to lump together CFS and fibromyalgia''.

What can be White’s rational explanation for holding such divergent views about the same issue?

Source: http://www.meactionuk.org.uk/Questions_for_Peter_White.htm
Malcolm Hooper and Margaret Williams ask Peter White some questions
31st July 2004
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In other words pre PACE he is disagreeing with Wessely, then in PACE he does exactly what Wessely's model requires for CFS equating to a functional somatic syndrome!
 
Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
The comment I posted quoting Wessley from Tuller's blog - word for word (thanks to @Research 1st) was modded! How did that happen? No idea how that one broke community rules. Someone must have reported it I suppose :thumbdown:
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Mrs Sowester said:
The comment I posted quoting Wessley from Tuller's blog - word for word (thanks to @Research 1st) was modded! How did that happen? No idea how that one broke community rules. Someone must have reported it I suppose :thumbdown:
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Quite a few posts have been removed. I used to post at that site a lot and it was never clear why some things got removed.
 
jodie100

jodie100

Messages
44
The PACE trial studied participants whose main symptom was fatigue. I think in general the main symptom in fibromyalgia is considered to be pain, so although there is a lot of overlap in symptoms these patients would not have been included in the PACE trial.
 
C

CCC

Senior Member
Messages
457
UK dwellers should lodge a complaint with the Guardian.

Under its own editorial guidelines, the paper is required to meet this PCC standard:
1 Accuracy i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.
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(https://www.theguardian.com/info/2015/aug/05/the-guardians-editorial-code)
It doesn't make a distinction about whether the author is an employee or an outside contributor.

Complain about the failure of the article to meet the accuracy standard. Include a quote and link to some of the published articles. Point out that:
2. Opportunity to reply. A fair opportunity for reply to inaccuracies must be given when reasonably called for.
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As others have said, the authors of the re-analysis should be invited to submit an article to communicate the results of the reanalysis.
 
Large Donner

Large Donner

Senior Member
Messages
866
One thing I was thinking about was the claim that White made that they got permission to change the protocols after the study. Yet the patients which signed up would have had done so via informed consent. So did they get permission from the patients to change the definition of recovery and improvement after the trial had already commenced?

Its so ironic because they claimed in the FOI that people may be identified from the data. I'm pretty sure if I was a trial participant and was still ill after the trial or worse and saw data on people who it was claimed had recovered, I would not suspect one of them could be me, when by the published protocol they could well be claiming that one of them was me.

So from the FOI claim of attempting to "protect patients data" they are now trying to use such patients to make false claims having had them sign up to one protocol and then changing it during the trial.
 
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