Parliamentary Question: sealed ME/CFS records held in the National Archives, 21 January 2011

January 22, 2011

The Countess of Mar has asked 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 21 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.

The Minister of State for Justice, Lord Tom McNally, in a written answer supplied on 21 January, replied:

The file 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 date of named individuals who are believed to be still 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 benefits claims within the file means that redaction would render the open part of the file so small that it could 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.

5 thoughts on “Parliamentary Question: sealed ME/CFS records held in the National Archives, 21 January 2011”

  1. Normal closure period is 30 years, not 70.

    There appear to be no Multiple Sclerosis files held at the National Archives for 70 years. And only those before the FOI Act came into affect (2000) are closed for the standard 30.

    So why are documents on ME from 1984 Jan 01 – 1993 Dec 31 held for 70 years?

    It would be very simple to redact personal information such as names and addresses from the files.

  2. JT don’t they cover reasons for not redacting names above?

    I know this has been an ongoing fight for some and am aware of at least two petitions doing the rounds on Facebook or some such I believe.

  3. In part they cover redaction. Or give an excuse for not doing so. It is still possible to release the files though, and they should.

  4. Seems bizarre that this medical information is being kept secret in case it gets out person A was in receipt of Incapacity Benefit. Soemthign that needs a lot more probing into methinks.

    Yes and very easy to erase names. Suspicious response from the Minister here!

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