MRC secret ME files question page.

bullybeef

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Hi guys,

I have posted the majority of this on a UK ME forum, but I guess our international friends would be interested in the following:

MRC secret ME files question page.
I have been browsing the nation archives website and found the location of the information page regarding the MRC's (Medical Research Council) decision to bury the records concerning ME until 2071.
http://www.nationalarchives.gov.uk/c...accessmethod=5

You can actually post questions as to why they see the need to do this here:
http://www.nationalarchives.gov.uk/c...EF=FD23/4553/1

It probably won't make much of a difference to bombard them with questions, but I doubt it would do any harm if you guys are up to it.

I have also found the following here: http://www.sar.nationalarchives.gov....ce=4553&item=1

Extract Reference: 40 pages
FOI decision date: 2008

Exemption 1: Personal information where the applicant is a 3rd party
Explanation: These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

Exemption 2: Information provided in confidence
Explanation: These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.
That would make the youngest person mentioned 101 years old in 2071.
 

bullybeef

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Today, I recieved the following response:

Thank you for your enquiry on 01 June 2010 regarding the following file:
FD 23/4553/1 - Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies - Closed extracts: 40 pages - 1988-1997

The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information. You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you. These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.

I would like to clarify at the outset that this particular file is only a small extract from the larger parent file which is open to the public under the reference FD 23/4553. Access to this open document (and others) can be achieved in a number of ways. Information on how you can access the open file is included below.

We have undertaken a review of the closed extract FD 23/4553/1 and find that all the information in the extract is considered to be covered by exemptions within the FOI Act, specifically section 40(2) (personal data) and section 41 (information provided in confidence). This means that we cannot give you any of this information and we have set out details below of which exemptions we have applied and why.

Section 40 exemption: this section exempts personal information about a 'third party' (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

This exemption applies because the overwhelming majority of this extract contains the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, I will confirm that such information includes the medical details of named individuals including how ME affects them and other matters relating to their condition. As such it would be considered unfair to these named parties if this material were to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully.

Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

This exemption applies because it exempts the release of information if it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The extract contains opinions and information that was given in confidence and the release of which could be actionable.

Finally, I would like to take this opportunity to explain that the file relates to the application and selection process for candidates who applied for research funding, not the selection of candidates for medical treatment. The file contains applications to the Medical Research Council for funding grants and it is these, along with separate medical information, which are exempt from disclosure

Accessing the open file:

There are various ways for you to access the information you want.

- You are welcome to visit us - we can help you to do the search yourself, and admission is free. Please visit our website for information regarding our opening times http://www.nationalarchives.gov.uk/visit/times.htm . Please note that as of 4th January 2010 we are open for five days a week (Tuesday to Saturday).

- You may use our online Document Copying Service, www.nationalarchives.gov.uk/recordcopying/.

- You may wish to use our paid search service to identify specific parts with this document. We will aim to provide you with the information you require, and to provide a prompt and professional service. H.M. Treasury requires recovery of the full cost of providing the service. We will reply to your request within 20 working days (email: enquiry@nationalarchives.gov.uk).

- There are also many independent researchers whom you can hire to carry out research for you. These researchers may charge significantly less than our 'full cost recovery' service. Lists of researchers are available at our web site (www.nationalarchives.gov.uk)

If you visit us, you will need a Reader's Ticket to look at original documents. To obtain a reader's ticket you must bring two documents with you - one to prove your identity (which must have a valid signature) and one to prove your address, or school if you are a student. Please be aware that internet printouts or online statements are not accepted as proof of address. For further information please visit http://www.nationalarchives.gov.uk/registration/

If you are a citizen of any other country, please bring your passport or national identity card. If you do not have this identification, please ring us on 020 8392 5200 before you visit. Please allow time at the beginning of your visit for familiarisation with our procedures. You can register in advance as a reader at www.nationalarchives.gov.uk/registration/

If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

The Quality Manager
Public Services Development Unit
The National Archives
Kew, Richmond
Surrey TW9 4DU

You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

Yours sincerely,
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Previous response under FOI from December 09:

Response from Public Services Development Unit, National Archives

28 December 2009

http://meagenda.wordpress.com/2009/...-services-development-unit-national-archives/

Shortlink: http://wp.me/p5foE-2yP

Related material: The Medical Research Council’s secret files on ME/CFS: Margaret Williams

Response from Public Services Development Unit, National Archives

Received via email, 22 December 2009

Dear XXXXXXXXXX,

Thank you for your enquiry of 17th November 2009 requesting a review of FD 23/4553/1 – Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies – Closed extracts: 40 pages – 1988-1997.

The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information. You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you. These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.

Unfortunately, all of the information which you are looking for is covered by exemptions. This means that we cannot give you any of the information. We have set out details below of which exemptions we have applied and why.

Which exemption applies?:

Section 40 exemption: this section exempts personal information about a `third party’ (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

Why this exemption applies:

The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this file on the grounds that such is seen contain the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such includes the medical details of named individuals. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully.

Which exemption applies?:

Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

Why this exemption applies:

Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The files contain opinions and information that was given in confidence and the release of which could be actionable.

If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

The Quality Manager
Public Services Development Unit
The National Archives
Kew, Richmond
Surrey TW9 4DU

You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

If I can be of further assistance, please do not hesitate to contact me.
Kind regards,

(Signed on behalf of)

Freedom of Information Centre
Information Policy and Services Directorate
The National Archives
Kew
Richmond
Surrey TW9 4DU
0208 876 3444 ext 2552
Fax +44 (0)20 8487 1976

If you would like to contact us again regarding this request, please contact the helpdesk:

via e-mail:By replying to this e-mail or (020 8876 3444)

Remember to quote your call reference number: F0023328 in any correspondence, as this will assist us in providing you with a quick response.

www.nationalarchives.gov.uk

----------

National Archives site

If you go to these three URLs, below, scroll each page for content and then open all the links under “Context” on each of the three parent pages, and their child pages, there is information about the nature of some of the material archived:

http://www.nationalarchives.gov.uk/...69707&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/...98595&CATLN=6&Highlight=&FullDetails=True&j=1

http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

Extract from this source:

http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

[...]

Access
Closure status Closed Or Retained Document, Open Description
Further information about access conditions is available
Access conditions Closed For 73 years
Record opening date 01 Jan 2071

Freedom of Information Act Exemption Information
Access Status for Item FD 23/4553/1

Extract Reference 40 pages

FOI decision date 2008

Exemption 1 Personal information where the applicant is a 3rd party

Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

Exemption 2 Information provided in confidence

Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.
 
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Hi All - Redaction is the obvious route to go down here. Personally, I believe that there is a definite reluctance by governments worldwide to acknowledge the true scale of ME/CFS because the financial impact would (could) be astronomical. It sounds to me like the information source is using the 'letter of the law' to conceal the 'spirit of the law'. Odd that redacting is viewed in the UK as perfectly acceptable by government when relating to MPs expenses!
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Just to clarify, the response received under FOIA, in December 09, that I have posted above, resulted out of a request for a previous decision to be reviewed which had been initiated by a third party and not by me, at the end of last year.

I was given permission to publish the response by this individual who did not wish to have their name and contacts details made public.

This is not an issue that I currently have an interest in and I have no further information to provide other than that which I have already published here and on my site. If others wish to take this issue forward I am unable to provide them with any advice as to how they might proceed - other than to go to appeal.

Part V APPEALS

http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_7#pt5

As with all FOI issues, I advise against the submission of multiple requests for the same information - this is not productive. Once a request has been submitted it will be processed according to the Act and there is an appeals procedure if dissatisfied with the response.


With reference, generally, to the redaction of documents and with no specific reference to this issue, it is not always possible to render the content of documents anonymous solely by redacting names.

There may be instances where information is being held by organisations and agencies that are subject to the FOIA which may now form part of legal cases or investigations or where information held is now subject to a family court case and reporting restrictions [Clauses 30, 31, 32].

There may be instances where documents contain references to medical treatment or to complaints against medical professionals or medical institutions where incidents have taken place which could identify the individuals concerned even though names are redacted, or where information has been supplied in confidence [Clauses Personal information: 40, 41].

There are other clauses under which information can be withheld under FOI which include details of research proposals, where the publishing of information could prejudice the commercial interests of the researchers and institutions involved [Clause 43 (2)]. This could include training packages or publications marketed commercially following the publication of a study, test kits etc.

Information can also be withheld if the information is intended for future publication [Clause 22].

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

The Freedom of Information Act 2000 is here:

Introduction

http://www.opsi.gov.uk/acts/acts2000/en/ukpgaen_20000036_en_1

Act 2000

http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_1.htm


Part II Exempt information

http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_3#pt2

----------

In another thread, someone has written that they have signed a UK petition asking why "the Wessely documents" are being withheld. I have asked this person to provide a source for their understanding that the documents in question relate to Prof Wessely, but have received no response as yet.

I find the endless speculation around this issue somewhat tedious.

Suzy
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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ETA: Are you aware that the right to edit your own posts beyond 4 days was removed on 2 June and that you cannot now delete your posts?

If you share my concerns for the implications for this change and for the cavalier manner in which it has been imposed without prior discussion please add your concerns to the thread below and vote against this sanction in the poll.


To vote and register your objection go to:

http://www.forums.aboutmecfs.org/showthread.php?5368-Forum-adjustment-editing-your-post

EDIT 2: Please see Cort's message. Editing rights are now reinstated.

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


Speaking generally and with no specific reference to the Kew/MRC archives issue:

Another reason for information being withheld under FOIA is where a research study involves the production of manuals for use by study participants or by reseachers/nurses/OTs etc who are applying interventions being trialled in the study.

For example, in 2005, as part of an FOI request for information around the FINE Trial (recently published) I requested copies of the training manuals.

These were withheld on the grounds that members of the public might use these manuals to self administer treatments without supervision and potentially damage themselves; the "prejudicing commercial interests" clause was also cited.

Another reason for information being withheld is cost of compiling the information requested [Clause 12]:

12 Exemption where cost of compliance exceeds appropriate limit .(1)
Section 1(1) does not oblige a public authority to comply with a request for information if the authority estimates that the cost of complying with the request would exceed the appropriate limit.


I have had requests rejected under Clause 12, where, for example, all documents associated with an issue had been requested. The policy for what figure would exceed "the appropiate limit" for compiling, copying and redacting (where necessary) information appears to vary from organisation to organisation.

A request for a small amount of information from the Big Lottery Fund was rejected, several years ago, as they did not hold this information but instead, I was offered over 400 sheets of documentation relating to the AfME ME Observatory which had just been made available to another enquirer. This represented virtually all the information being held by the BLF, was nearly a ream thick and for which no charge was levied.

Suzy