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UK: Question about the MRC Board members in the 1990s and the redacted "ME file"

Discussion in 'Advocacy Projects and Campaigns' started by Hutan, Jul 15, 2024 at 7:23 AM.

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  1. Hutan

    Hutan Moderator Staff Member

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    A year ago, @Arvo made this interesting post on the Research Funding thread.

    There is the question of why there is an MRC file on ME that is redacted until 2071. Is this accurate? Is there any mechanism to find out why the file is not available?

    And also the question of MRC Board members. Is it correct that the identity of the MRC board members at this time were not made public? Is it correct that the list of members was included in the ME file?

    If these things are true, can we and should we do something to get the redacted information?
     
    Hutan, Jul 15, 2024 at 7:23 AM
    #1
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  2. Nightsong

    Nightsong Senior Member (Voting Rights)

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    It was my understanding that the majority of the records have been released. For instance if you go to the National Archives website and enter the reference FD 23/4553/1 you can download the majority of the MRC archive:

    https://discovery.nationalarchives.gov.uk/details/r/C6108937

    but there is a "closed extract" of 68 pages:

    https://discovery.nationalarchives.gov.uk/details/r/C10027241

    They rely on two exemptions for the 68 pages ("personal information where the applicant is a 3rd party" and "information provided in confidence"). The first exemption is because they are required by law to protect the personal information of identifiable individuals. It would take a FOI request to get the National Archives to re-review this closed subset, which they would be obliged to do in collaboration with the MRC.
     
    Nightsong, Jul 15, 2024 at 7:43 AM
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Jul 15, 2024 at 1:41 PM
    #3
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  4. Valerie Eliot Smith

    Valerie Eliot Smith Established Member (Voting Rights)

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    The "closed extract" (actually "closed extracts") to which you refer is not a separate, closed file but a collation of the 68 marked, redacted pages from the original file. Hence its classification FD23/4553/1, denoting its status as extracts from the file FD23/4553.

    Also @Hutan It's a long time since I looked at the files in detail but my recollection is that I checked the nature of the redactions at the time when I got them released and they appeared to be as indicated in the marks. They also appeared to have used the exemptions in FOIA appropriately. I had made a request for the redacted information and some further items had been opened up.

    Anyone could make another FOI request but I doubt it would yield much, if anything, that is especially useful now, 30 years on. However, I am slightly puzzled by the further review in 2013 (AFTER I got the info released in 2012), which extended the release date of that redacted material until 2093.

    I don't think there is information in the file about specific names from the MRC but I could be wrong (I simply don't have the energy to go through it again at this point). Presumably, that information could be obtained more easily via a direct request to the MRC.

    The main file can be downloaded from my blog (scroll down to the end of the post and click on the link) https://valerieeliotsmith.com/2015/...s-unwrapped-part-2-control-not-collaboration/
     
    Last edited: Jul 15, 2024 at 4:44 PM
    Valerie Eliot Smith, Jul 15, 2024 at 4:35 PM
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  5. Valerie Eliot Smith

    Valerie Eliot Smith Established Member (Voting Rights)

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    ETA: if anyone wants/needs a reminder of the horrors of the history and politics of this illness, just go to the file and look at the first item. It's a report of the 1992 CIBA Foundation Symposium on "chronic fatigue syndrome" [sic]. Shortcut to the file here.
     
    Valerie Eliot Smith, Jul 15, 2024 at 5:24 PM
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  6. Hutan

    Hutan Moderator Staff Member

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    Thanks to the people who have responded so helpfully. That file you have linked to @Valerie Eliot Smith is interesting reading.
     
    Hutan, Jul 15, 2024 at 7:50 PM
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  7. bobbler

    bobbler Senior Member (Voting Rights)

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    Good timing to bring this up given the recent blood inquiry/scandal in the UK you might hope that a campaign asking simply for transparency on these - which are historic / old documents from a similar time period (and said scandal showed up the issues that happened there in that context, in fact I think if I remember correctly some files were lost)
     
    bobbler, Jul 15, 2024 at 11:08 PM
    #7
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