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Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

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15,786
Should we assume, then, that Professor White considers that his research should not be subject to the same level of scrutiny as any other research?

Or does he consider that having his research challenged by the laity to be unreasonable and an "attack" on science (if that is what he did say)?
My own thought is that many clinically-based researchers don't really understand what science is. They've heard about it a bit, they vaguely believe it is a good thing, and they are dabbling in it, but they are very much lacking in the experience or even the capacity for it.

They've come from a situation where the doctor is always in charge, and is not being actively assessed by anyone, into a place where the "authority" of a source should be irrelevant. I expect it's a very uncomfortable situation for some, and that they really do perceive themselves (and their limited concept of "science") as being attacked.

But the reality is that vigorously challenging ideas and methodologies is an inherent and important part of science, and that scientists need to be capable of appreciating and embracing that.

Not everyone can handle scientific thinking and the scrutiny and debate of their work which comes with it. And I think that's perfectly normal and nothing to be ashamed of. But if such a person decides to delve into the realm of science, they really have nothing to complain about when their work is civilly criticized.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
Two documents here on Section 14 of the Act

http://ico.org.uk/~/media/documents/library/Freedom_of_Information/Detailed_specialist_guides/dealing-with-vexatious-requests.pdf

Dealing with vexatious requests (section 14)
Freedom of Information Act

---------------------

An earlier OIC guideline:

http://ico.org.uk/~/media/documents/library/Freedom_of_Information/Detailed_specialist_guides/vexatious_and_repeated_requests.pdf

When can a request be considered vexatious or repeated?
Freedom of Information Act
2012
----------------------------

Commentary from the ICO (Information Commissioner's Office) blog on the interpretation of "vexatious":

http://ico.org.uk/news/blog/2013/vexatious-freedom-of-information-requests-guidance

and a guide to:

How to access information from a public body
Information request dos and don’ts:

http://ico.org.uk/for_the_public/official_information#tips


The full FOI Act 2000 can be accessed here (in html format):

http://www.legislation.gov.uk/ukpga/2000/36/contents

Full Act 2000 in PDF format, here:


http://www.legislation.gov.uk/ukpga/2000/36/pdfs/ukpga_20000036_en.pdf


For Scotland:

http://www.itspublicknowledge.info/Law/Legislation.aspx
http://www.itspublicknowledge.info/Law/FOISA.aspx

----------------

As someone who has, down the years, submitted a number of FOIs (and I have two awaiting fulfillment at the moment) I would like to add that I have never called for, or encouraged the submission of multiple requests for the same information.

Edited to add:

There is also a separate OIC document:

Manifestly unreasonable requests

http://ico.org.uk/news/blog/2013/~/media/documents/library/Freedom_of_Information/Detailed_specialist_guides/manifestly-unreasonable-requests.ashx


and

Dealing with repeat requests (section 14(2))

http://ico.org.uk/news/blog/2013/~/...list_guides/dealing-with-repeat-requests.ashx
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Research and the Data Protection and Freedom of Information Acts
Queen Mary University of London powerpoint:

http://www.arcs.qmul.ac.uk/information_governance/dp/dpa_foi_and_research.ppt


An (abridged) guideline here (Written and compiled by Chris Rusbridge, Consultant, and Andrew Charlesworth, Reader in Law, University of Bristol):

http://www.jisc.ac.uk/media/documents/publications/programme/2010/foiresearchdata.pdf

Freedom of Information and Research Data Questions and Answers

[The unabridged version is here: http://www.jisc.ac.uk/publications/programmerelated/2010/foiresearchdata.aspx ]


A (36 page) ICO guideline here:

Freedom of information legislation and research information: guidance for the higher education sector

http://ico.org.uk/for_organisations/guidance_index/~/media/documents/library/Freedom_of_Information/Detailed_specialist_guides/foi-legislation-and-research-guidance-for-the-higher-education-sector.pdf
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Valentijn wrote:

seanpaul said:

Should we assume, then, that Professor White considers that his research should not be subject to the same level of scrutiny as any other research?

Or does he consider that having his research challenged by the laity to be unreasonable and an "attack" on science (if that is what he did say)?


Just for the record, the above is extracted from my comment, not from a seanpaul post.


Totally off topic, but on the theme of engines...

https://twitter.com/JohnDonoghue64/status/417742435196735488
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Just opened last week's New Scientist print edition:

Page 27, 6 September 2014 | NewScientist

ONE MINUTE INTERVIEW

Psychiatrists on Standby

Our minds and bodes should not have separate healthcare services, says psychiatrist Simon Wessely

Here's the online version:

http://www.newscientist.com/article/mg22329850.400-we-need-shrinks-in-hospital-emergency-rooms.html

We need shrinks in hospital emergency rooms

It's time to abandon mind-body duality in medicine: we need psychiatrists in hospitals and better physical care for psychiatric patients, says Simon Wessely

This article appeared in print under the headline "Psychiatrists on standby"


You don't need a subscription to access the online version.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
This is deceptive spin.
Including psychiatrists in the care of the now united 'mind/body' is the opposite of recognising that that unity exists.
If there is no split or division of mind and body then this would indicate that ALL has a physical basis and the onus for care delivery resides with physical medicine.
 

biophile

Places I'd rather be.
Messages
8,977
strategies for decreasing the 'harassment' of researchers said:
Learning about the FOI Act and using strategies to reduce time spent responding, eg putting minutes of meetings online.

That's almost amusing! Wasn't a request under the FOI Act to release the minutes of PACE Trial meetings vigorously resisted all the way up to a First Tier Tribunal about a year ago?

http://www.informationtribunal.gov.uk/DBFiles/Decision/i1069/20130822 Decision EA20130019.pdf

So putting meeting minutes online is generally OK, except for the PACE Trial, then it spells certain doom for all science as we know it. Makes one wonder what was discussed that was so volatile as to strike fear into the hearts of those involved if what was said (in minute form not a transcript) ever made its way into the hands of the patient rabble.
 
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biophile

Places I'd rather be.
Messages
8,977
I saw this on mecfsforums.com

http://www.mecfsforums.com/index.php/topic,21587.msg166626.html#msg166626

Not sure what to think. Wasn't sure where to put it or create a new thread:

-

http://www.dailydot.com/politics/gchq-biggest-trolls-nsa-edward-snowden-jtrig/

The Internet's worst trolls are actually British spies

By Kevin Collier (Google+) on February 25, 2014

You only think somebody is being a jerk to you online. It turns out, the most sophisticated, thorough, and highly trained Internet trolls yet uncovered actually work for the British government.

That's according to the latest revelation provided by docs leaked by former National Security Agency contractor Edward Snowden. According to documents published at the news site First Look, the Government Communications Headquarters (GCHQ), the U.K.'s counterpart to the NSA, has an extensive disinformation program to undermine anyone on the Internet.

Called the Joint Threat Research Intelligence Group (JTRIG), the program is detailed in an internal training document titled The Art of Deception: Training for a new generation of online covert operations, which First Look published in full. Drawing from numerous academic fields, including anthropology, psychology, and even biology, the manual shows that GCHQ engages in large-scale institutionalized online discrediting attacks against suspects, who aren't necessarily terrorists. It's essentially a modern, online counterpart to COINTELPRO, the FBI's notorious smear program used to harass Martin Luther King, Jr. until his death in 1968.

"We want to build cyber magicians," the manual states. It encourages agents to "hide the real" by masking, repackaging, and dazzling content online, and to "show the false" by mimicking, inventing, and using decoys. It presents convoluted graphs, like one that shows the respective longevity of presumably false information as it lives through text messages, Facebook profiles, LinkedIn pages, and, most disturbingly, "news media."

JTRIG documents get far more specific. One gives a checklist of how to "discredit a target," and includes suggestions like changing their photos on social networking sites and creating fake blogs pretending to be "victims" of their target. Its means of discrediting a company are similar: leak damning information to the press, post negative information on Internet forums, and even "stop deals/ruin business relationships"—though how exactly JTRIG does that isn't clear.

GCHQ, consistent with its policy, refused to acknowledge the program to the press. Only time, and more Snowden leaks, will tell if the NSA has similar program.

Either way, continue take everything on the Internet with a grain of salt. Especially the trolls.
 
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1,446
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Hi Biophile - do you want to start a new thread for the 'internet trolls/british spies' material?
 

Countrygirl

Senior Member
Messages
5,427
Location
UK
http://www.tymestrust.org/pdfs/shiningalight.pdf

The Young ME Sufferers Trust Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI) A Report from Tymes Trust - the inside story of the UK CFS/ME Research Collaborative Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community. We are publishing the text here in case you have not seen it yet. NB In the records of the meeting where ‘harassment’ of researchers was discussed, no mention was made of personal threats such as have been reported in the media. Freedom of Information (FOI) requests were listed as the most damaging type of ‘harassment’. The 2016 tribunal appeal Judgement ordering QMUL to release the PACE trial data highlights that Professor Trudie Chalder accepts that “no threats have been made either to researchers or participants”. The report was originally released August 2014.

Jane has posted this 2014 article again to refresh our memories as it is so relevant to the latest developments
 
Messages
1,446
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Thats an important Post, @Countrygirl , Thank you.


http://www.tymestrust.org/pdfs/shiningalight.pdf

"The Young ME Sufferers Trust Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI) A Report from Tymes Trust - the inside story of the UK CFS/ME Research Collaborative.

Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants.

We think this is key reading for the ME community. We are publishing the text here in case you have not seen it yet.

NB In the records of the meeting where ‘harassment’ of researchers was discussed, no mention was made of personal threats such as have been reported in the media. Freedom of Information (FOI) requests were listed as the most damaging type of ‘harassment’. The 2016 tribunal appeal Judgement ordering QMUL to release the PACE trial data highlights that Professor Trudie Chalder accepts that “no threats have been made either to researchers or participants”. The report was originally released August 2014."



Countrygirl wrote:
"Jane has posted this 2014 article again to refresh our memories as it is so relevant to the latest developments"

.
~~~~~~~~~~~~


Original August 2014 PDF Version in Dropbox:
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

.
.
 
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