Closed Information ME/CFS -Parliamentary Question

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PARLIAMENTARY QUESTION

FOR WRITTEN ANSWER ON 21

JANUARY 2011

QUESTION:

The Countess of Mar to ask Her Majesty's

Government whether they will release the public

records, reference BN 141/1, relating to Myalgic

Encephalomyelitis and Chronic Fatigue Syndrome,

from 1 January 1984 to 31 December 1993, including

correspondence with members of the medical

profession, held in the National Archives; and why

that information is closed to public access until 2072

(78 years) instead of the usual 30 years.

(HL5970)

ANSWER:

Minister of State for Justice (Lord McNally):

The file BN 141/1 contains a high volume of personal

medical information about ME sufferers (Myalgic

Encephalomyelitis / Chronic Fatigue Syndrome

(ME/CFS).

Due to the personal nature of the content, the file

remains closed until 2072 under section 40(2) of the

Freedom of Information Act 2000.

This exemption applies because the overwhelming

majority of this file contains sensitive personal data

of named individuals who are believed to still be

living.

Releasing the file into the public domain would

breach requirement in the Data Protection Act 1998

that personal data be processed fairly and lawfully.

Redaction of this personal information so that the

rest of the file can be released has been considered

but ruled out.

The volume of personal information about ME

sufferers and benefit claims within the file means

that redaction would render the open part of the file

so small that it would cause the contents to be

meaningless.

The file closure decision was reviewed in 2010 by

The National Archives and the Department for Work

and Pensions.

Lord McNally

20/1/11