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

Hutan

Hutan

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Arvo said:
In the UK something similar happened. The Medical Research Council (MRC) up to at least 1995 tried to pretend they were funding ME research while they were not, putting up a smokescreen when MP's or patients asked about what they were funding. They talked about doing "limited" research into it - when the exact amount was none- and presented non-ME research as "basic research" into it, which it wasn't. (They had been doing this last bit since at least 1988, when there seems to have been a slight panic within the MRC because HORIZON wanted to confirm if they were indeed funding nothing, and if not why - they were afraid HORIZON "would make a meal" of the answer.)

The only thing they had been funding for years, since halfway through the 80s, was Anthony David et al.'s project at the Institute of Psychiatry that was about general fatigue in GP clinics. This wasn't about ME, nor was it biomedical. (But it was used to wave around at questions as the CFS research they were doing.)
Despite being aware of biomedical issues (they had a report from the Behan's from 1987, and Cheneys 1993 testimony before the FD scientific advisory committee among their files) there was no funding for it.

At the MRC there's also the issue of who was on the Board. Somewhere in that period new MRC Board members were installed, and instead of that being public information, it got stuffed in the "Myalgic Encephalomyelitis (ME) Postviral Fatigue Syndrome (PFS)" file and redacted, exempt from FOI, until 2071.

This is not normal; It is not regular to hide board members or who is in fund-deciding committees. You can go to the MRC page today and see who serves on the Boards and I know that e.g. in the arts&culture, at least here in The Netherlands, it is normal that Board members are known. There's no big secret about it, and it is important for the sake of transparency to see who is in the committee that decides on funding. There is no need for the MRC to hide these names as personal information exempt from FOI (unless of course they want to hide something problematic, that would go against the public interest to know who was on the Board at the time), plus the fact that it was specifically put into the ME file indicates it has something to do with it directly.

If I had more time and health this would be something I would want to go after, to start a process to make this public. (Or start a social media campaign to demand it.)

MRC file download here, which will be the same as what @Dolphin posted above.
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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?
 
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 said:
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.
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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/
 
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Valerie Eliot Smith said:
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/
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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.
 
Hutan said:
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?
Click to expand...

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) - might ring a few bells / sound familiar
 
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If anyone wants to see the redacted document discussing the MRC Board recommendations, it's page 38 of the PDF collection.

(edited to add: the organization of the documents is not 100% chronological if I remember correctly, but nearly completely so. Seeing where the doc lies among the other papers, the Board appointments were probably made in 1997.)

Now that I encounter you here @Valerie Eliot Smith, I want to say thank you for uploading these files. They've been a valued primary source of information for me.:bookworm:
 
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