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PACE FOI to D of H turned down, but may provide info on current QMUL spin?

Esther12

Esther12

Senior Member
Messages
13,774
Just saw this FOI:

https://www.whatdotheyknow.com/request/cfs_correspondence_on_the_depart

It looked to me like some of the content of this might have come from QMUL? Hard to say.

Dear Mr Jenson,

Thank you for your correspondence of 13 December about chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME), the PACE trial and graded
exercise therapy (GET). I have been asked to reply.

The Freedom of Information Act only applies to recorded information such
as paper or electronic archive material. As your correspondence asked for
general information, rather than requesting recorded information or
documentation, it did not fall under the provisions of the Act.

The PACE trial undertaken by Queen Mary University of London was the
largest ever trial of treatments for CFS/ME and was funded by the Medical
Research Council, a non-departmental public body funded through the
Government’s science and research budget. The first results from the
trial were published in 2011 in The Lancet, and a number of other
evaluations based on the trial have been published since.

The trial provided evidence that both cognitive behavioural therapy (CBT)
and GET were moderately effective when provided alongside specialist
medical care (SMC) and were better than adaptive pacing therapy or SMC
alone in improving both symptoms and disability. All the treatments were
found to be safe without any serious reactions to treatments in any of the
treatment groups. Where patients deteriorated during the trial, this was
as a result of a serious life event or infection that prompted a relapse.
In 2013, a follow-up study, looking at recovery after one year, was
published. This study supported the findings that CBT and GET were
therapies most likely to lead to recovery.

Following a number of requests to the chief investigators of the PACE
trial for the public release of data from the study, the Information
Commissioner ruled that the Wolfson Institute at Queen Mary University of
London should release this data.

The Wolfson Institute provided trial data to a member of the public, and
subsequently analysis of the data was published on a blog. The analysis
has not been validated by publication in a peer reviewed journal or other
means.

The National Institute for Health and Care Excellence (NICE) is
responsible for deciding whether guidance on CFS/ME should be updated. If
you consider that the guidance should be updated to reflect new evidence,
you may therefore wish to contact NICE directly. The contact details are:

National Institute for Health and Care Excellence
10 Spring Gardens
London SW1A 2BU



Email: [1][email address]



I hope this reply is helpful.



Yours sincerely,

James Shewbridge
Ministerial Correspondence and Public Enquiries
Department of Health
Click to expand...


The FOI was not that carefully phrased (we need training for everyone who wants to make FOI requests!), but it is an interesting idea to use the FOI to find out how what views on the PACE trial other areas of the Establishment have been passing around to each other. Really, we need journalists who are familiar with how to make the most of the available tools to start digging in to this.
 
C

CCC

Senior Member
Messages
457
Esther12 said:
The FOI was not that carefully phrased (we need training for everyone who wants to make FOI requests!), but it is an interesting idea to use the FOI to find out how what views on the PACE trial other areas of the Establishment have been passing around to each other. Really, we need journalists who are familiar with how to make the most of the available tools to start digging in to this.
Click to expand...

FOI requests are an art form. You have to be very specific so you limit the scope of the request and avoid the perception of it being a fishing trip (this is the vexatious argument QMUL tried to run with initially). You also need to not be too specific so you don't end up with a legitimate 'no'.

Using FOI in the way you have suggested would need to be worded very carefully, in Australia at least, to avoid a refusal on the basis of (a) privacy or (b) who owns the record or (c) relevancy to the organisation.
 
U

user9876

Senior Member
Messages
4,556
Esther12 said:
Just saw this FOI:

https://www.whatdotheyknow.com/request/cfs_correspondence_on_the_depart

It looked to me like some of the content of this might have come from QMUL? Hard to say.




The FOI was not that carefully phrased (we need training for everyone who wants to make FOI requests!), but it is an interesting idea to use the FOI to find out how what views on the PACE trial other areas of the Establishment have been passing around to each other. Really, we need journalists who are familiar with how to make the most of the available tools to start digging in to this.
Click to expand...

What would be interesting is the e-mail trail between QMUL and the Dept of health as there has clearly been a lot of behind the scenes lobbying. Also any briefing documents produced by ministers.

The reply could be taken as that they know that there may be issues and that they are choosing not to look. They dismiss the reanalysis because it was on a blog but their statement suggests that they know that it says something different and they are choosing not to look further.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
The Wolfson Institute provided trial data to a member of the public, and
subsequently analysis of the data was published on a blog. The analysis
has not been validated by publication in a peer reviewed journal or other
means.
Click to expand...
So what has to be done to get the re-analysys validated? Clearly needs to be a goal to aim for surely.

The National Institute for Health and Care Excellence (NICE) is
responsible for deciding whether guidance on CFS/ME should be updated. If
you consider that the guidance should be updated to reflect new evidence,
you may therefore wish to contact NICE directly. The contact details are:

National Institute for Health and Care Excellence
10 Spring Gardens
London SW1A 2BU
Click to expand...
Is this tacitly advocating people try to get the NICE guidelines updated? Or is it just a deliberate invitation to fail?
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
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