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Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

Yogi

Senior Member
Messages
1,132
@Yogi let me get back to yon on that. Not sure how public it was as far as security settings. A request to share it publicly wasn't answered, and there was a bit of a squabble around some of this. I may have misspoken characterizing it as 'little more than' when it's a very serious subject; it did lead to a suicide, and it actually requires more explanation than was my initial impression. There's a thread in General Discussion based on the Smith blog where Ellen Goudsmit goes into more detail, and she has far more knowledge on this than I do--actually she may very well have been the source for what I read. In any case I think we'll be seeing a blog on this before long. It remains to be seen how much credibility will be assigned to the refutations, but it looks like some progress may be made in challenging the 'death threats'/harassment meme.

That's fine I will await the blog. If it was said in private let's keep it private.
 

Yogi

Senior Member
Messages
1,132
"We have come under pressure from a number of sources, including Richard Horton, editor of the Lancet [the journal where the Chalder et al. paper appeared]. Comments on my blog posts were temporarily closed at PLOS’s’ Mind the Brain last Monday. Although I am still blogging there, I have moved my advocacy for releasing the the data from a cost analysis of the PACE trial published in PLOS One to my own blog, Quick Thoughts. This was done to decrease the pressure on PLOS and to ensure there was no appearance of a conflict of interest in my using their blog site. I am not involved in the decision-making at the journal concerning the release of the data and anyone can make a similar request"

This looks disturbing but not unexpected. There is pressure from Lancet and Horton on PLOS.

Neither Horton or the Lancet have responded to the 6 experts calling for independent data analysis. However they are trying to pressure PLOS and coyne. They will not give up easily. Horton has been very quiet on PACE. We need to keep the pressure up and get more scientists to start looking into this. I think they are trying to do a cover up and silence critics. So much at stake here $$$$. Very worrying!!!


https://mobile.twitter.com/richardhorton1?ref_src=twsrc^google|twcamp^serp|twgr^author
 
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Dolphin

Senior Member
Messages
17,567
http://andrewgelman.com/2015/12/18/28362/#.VnQ4-gn_GCR.twitter


Tug of War: Epic battle over data in controversial paper on chronic fatigue syndrome
Posted by Andrew on 18 December 2015,
What Coyne may be referring to is the comments by the Barts Chronic Fatigue Service (headed by Peter Denton White) on the draft NICE guidelines.

Parking badge one is the first comment here:
http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/
(If you ever want to find it, it's in my signature!)
 

Yogi

Senior Member
Messages
1,132
"We are however also concerned for the rights and welfare of trial participants. Participants did not give consent to the public release of their data when they entered the trial. In particular we are concerned to ensure that there is no risk of misuse of the data such as through inadvertent personal identification."

http://www.kcl.ac.uk/ioppn/news/records/2015/december/release-of-data-from-the-PACE-trial.aspx"


This is very weak excuse about patient Identification and now being concerned about patient welfare. No-one wants to identify patients. They also talk about ethics! Hahaha don't make me laugh!!

Given the fight they are putting up I am genuinely concerned they may even try to falsify the Data. They have now had alot of time to do anything with the data.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
"I am genuinely concerned they may even try to falsify the Data.

That would be a criminal matter and I think the chances of it happening are extremely remote.

Also, they'd have to be insane to try it. Anyone should be able to replicate the results of their published analyses with the dataset, and they've published loads of numerical results. Fixing up an entire dataset to replicate every single one and still be bent enough to go a certain way would be pretty much impossible.
 

Yogi

Senior Member
Messages
1,132
That would be a criminal matter and I think the chances of it happening are extremely remote.

.

I would also think so for any other science but there is a lot of money at stake by the PACE PIs backers - the insurers, and the DWP. It probably would be criminal but has any scientist ever been criminally prosecuted?

With some major scandals such as in the banking scandal where alot of criminal activity took place hardly anyone got criminally prosecuted in UK . Theoretically this would be criminal but in practice would anyone be prosecuted? Given the refusals this might be worth taking a chance. In all major financial scandals in the UK Libor & FX rigging etc it was the US justice system that investigated the matters in the UK. The Uk covers things up well . Its great we have Tuller, 6 experts asking for data, and Coyne - all American - coincidence?

P.s. I am british
 
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DanME

Senior Member
Messages
289
Its great we have Tuller, 6 experts asking for data, and Coyne - all American - coincidence?

I believe not. The UKs medical establishment seems to be very well connected. A lot of researchers probably protect each other and have shared interests at stake. It's just speculation, but I guess it's much easier for American scientist to break the circle. I think it's pretty sad for science in general. Science is not about protecting your interests, your authority or secretive circles. It's about honesty, integrity, openess and truth.

I don't know, what the Lancet's pressure on PlosOne is about or why the Lancet thinks anyone is interested in their opinion, but I guess they fear for their reputation. If PlosOne retracts the paper, everybody will ask, why the Lancet hasn't been doing anything so far. The Lancet's behaviour is a disgrace and a good indicator, why we desperately need more open and transparent journals like PlosOne.
 

DanME

Senior Member
Messages
289
And you can replace the word medical with political, financial, judicial etc

What is the reason for this? It seems, that the German medical establishment is much more fragmented. Of course we have certain groups, which stick together, but not on this massive scale.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
"We are however also concerned for the rights and welfare of trial participants. Participants did not give consent to the public release of their data when they entered the trial. In particular we are concerned to ensure that there is no risk of misuse of the data such as through inadvertent personal identification."

http://www.kcl.ac.uk/ioppn/news/records/2015/december/release-of-data-from-the-PACE-trial.aspx"


This is very weak excuse about patient Identification and now being concerned about patient welfare. No-one wants to identify patients.

But they gave themselves and other reviewers access to individual patient data, according to the Cochrane review protocol:

Cochrane Review Protocol said:
Exercise therapy for chronic fatigue syndrome (individual patient data)
  1. Lillebeth Larun1,*,
  2. Jan Odgaard-Jensen2,
  3. Kjetil G. Brurberg1,
  4. Trudie Chalder3,
  5. Marianne Dybwad4,
  6. Rona E Moss-Morris5,
  7. Michael Sharpe6,
  8. Karen Wallman7,
  9. Alison Wearden8,
  10. Peter D White9,
  11. Paul P Glasziou10
Why it is important to do this review
[snip]
A meta-analysis of individual participant data (IPD) may be a more reliable method than using only aggregate data meta-analyses.

[snip]
Types of studies
We will include randomised controlled trials, including cluster-randomised trials and cross-over trials, published or unpublished. While every effort will be made to obtain individual participant data (IPD) for trials which meet the selection criteria, an eligible trial will not be excluded if we cannot obtain access to the raw data.

So they admit that it is possible to anonymize the data and have already given it to the Cochrane reviewers, as mentioned in a previous post. But Coyne, being a Troublemaker, obviously can not be trusted to honor a confidentiality agreement regarding the data.
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
What is the reason for this? It seems, that the German medical establishment is much more fragmented. Of course we have certain groups, which stick together, but not on this massive scale.

Not so long ago the entire British cabinet had all been to the same school, Eton.

Last year there was an enquiry set up into allegations into child sexual abuse by important figures in the 60'/70's which had been hushed up at the time (a letter naming names had gone missing)
The first person leading it had to step down when it was revealed her brother was the head of the judiciary at the time.
The second person leading it had to step down when it was revealed she regularly dines with the person who last had possession of the letter.
In the end they had to appoint someone from New Zealand.
There was no one amongst the "elite" in Britain who wasn't tainted by association.
 
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user9876

Senior Member
Messages
4,556
"We are however also concerned for the rights and welfare of trial participants. Participants did not give consent to the public release of their data when they entered the trial. In particular we are concerned to ensure that there is no risk of misuse of the data such as through inadvertent personal identification."

I suspect that those experimented on by the PACE team had an expectation that the trial results would be properly reported. I would have thought the first right of people who take part in a trial is that the data is used in a way that adds to knowledge about treatments of a disease.

Can you really identify an individual from the sum of their answers on a questionnaire especially given multiple different answers will lead to the same score.
 

Yogi

Senior Member
Messages
1,132
Yes Britain is small island and in ALL sectors is more incestuous as it mostly focused in london compared to the USA and therefore easier for group think to take hold. Laws and regulations can be more easily changed and loopholes exploited in the Uk.

They are holding on until FOI laws change which is happening right now and did you know that QMUL are trying to get "friendly MPs" to change FOI laws using PACE to do so.

The establishment will be closing ranks. We need to get this out to the media and other uk scientists and doctors. The fight is still on and we need to get Coyne backed up by others and especially in the uk.