Wednesday, August 15, 2012

The "Secret" UK ME Files

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Editorship :

Thanks to Marry Molendijk <>

REVIEW August 2012:

The "Secret" M.E. files in the
National Archives at Kew in
London, UK-

by Valerie Eliot Smith


Given the recent cyber-activity (Facebook and
elsewhere) regarding the above files, it might
be helpful for me to outline the history and
context of these files.

I use the term "ME" to describe the spectrum
of illnesses which is often reduced to the term
ME or ME/CFS. It includes the following
although the list is not exhaustive: Myalgic
Encephalomyelitis, Chronic Fatigue Syndrome,
Fibromyalgia, Post-Viral Fatigue syndrome and
several others.

The reference numbers of the above documents
are BN141/1 (the "DWP" file, originally closed in
1992 until 2072 and then opened in April 2012)
and FD23/4553 (the "MRC" file, originally
closed in 1991 until 2071 and opened in
November 2007).

There may well be other files and they will be
subject to the same procedures and scrutiny
as these files.

Legal background

When files from the various Departments of
State (Health, Education, Work and Pensions
etc.) are archived in the normal way they are
reviewed in case they contain confidential
information. It is necessary here to distinguish
between "confidential" and "secret". Secret
files are subject to a different process of
classification - for example, reasons of national
security such as prevention of terrorism.

The ME files are not in the "secret" category;
however, some of the information which they
contain is confidential in that it reveals
sensitive personal details about named
individuals (eg. medical information) or the
information itself was given in confidence (eg
proposals for research funding). Any public
authority is under a statutory duty to protect
the privacy of its citizens (ie. you, me and
everyone else in the UK) so these files – like
many others – were closed and then archived
in the National Archives (TNA) at Kew, in the
early 1990's.

The formula under which these files were closed
is contained in a simple, if cumbersome
mathematical calculation. The age of the
youngest person mentioned in the files is
calculated at the time of review. A period of
80 years is added on and that gives the date
when the file can be opened, on the basis that
everyone referred to in the file will have died
by that time so their privacy is protected
during their lifetimes. You do the math, as they
say. It does work – I've checked it. It seems
somewhat gruesome and draconian but due
process is often like that.

Since then, there has been a major policy shift
towards public access to information. This led
to the Freedom of Information Act 2000 (FOIA)
which, amongst other things, enabled the
procedure which anyone can use to request
that a file is opened up. That is how the
information about MP's expenses came into the
public domain, for example.

Accessing the files

At some stage, these particular ME files were
identified by someone unknown and clearly
they tried to access them – possibly without
knowing about this procedure. When they were
unable to obtain the files, it may have been
incorrectly assumed that the files were
"secret" rather than merely confidential and so
the rumours began.

When I first heard about these files some years
ago, like many other people, I was intrigued. I
decided to see if they could be accessed using
this process. Initially, I was only aware of the
details of the DWP file so I started with that in
September 2011. It took considerable
persistence and effort but I followed the
process and took it through three stages of
appeal. There are further stages which you
can move on to if necessary, but, at that
stage, the Office of the Information
Commissioner (OIC) – having reviewed the full
file - agreed that it should be opened in April
2012 so I didn't need to go any further.

[I should point out here that anyone can
request the opening of any file covered by the
FOIA at any time regardless of all other
considerations. That doesn't mean it will be
successful but the process is available and the
information is displayed on government
websites and those of public authorities].

However, the DWP file did contain information
which was exempt from disclosure under
Section 40 of the FOIA – as I described in the
fifth paragraph of this article (towards the
bottom of the first page). I agreed that file
could be redacted accordingly to protect the
sensitive personal details of named individuals
and then released. This is absolutely standard
procedure. I then viewed the file at Kew on 30
May 2012 (it is not yet available online from
TNA website).The redacted portions of the file
are clearly marked as required by the

Around this time I tracked down the second file
– the MRC file – and checked it out. To my
surprise, it was already open and available
online from TNA – although again, with
redactions so I downloaded it. It had been
opened up in 2007 so clearly someone else had
already been through the same procedure as I
had with the DWP file. For the record,
Parliamentary Questions and e-petitions will
not get a file opened up on their own; this is
the only process which will achieve it.

In both files, the person doing the redactions
seems to have been somewhat over-zealous
so the current situation is that I still have
ongoing appeals with the OIC against the
redactions in both files and therefore the
process is not yet completed. However, I do
not think that it is likely these appeals will be
successful as the law appears, on the face of
the papers, to have been correctly applied.
Nor do I think that we will learn much more
even the redacted information is disclosed.
There is a vast amount of material available in
the files as they stand - even with the
redactions still in place.

From my own personal point of view, I found -
and still find - reading these files to be deeply
distressing, disturbing and painful. It is utterly
draining, and overwhelmingly depressing going
through them. However, the information
contained there is very old and none of it what
was revealed in general terms was new to me.

My conclusion

I personally had not seen these specific
documents before but it was only additional
evidence of what I and many others already
knew to be the case regarding policy and
attitudes towards patients/benefit claimants in
relation to ME spectrum illnesses. Both
Professor Wessely's and Dr White's views, for
example, have been publicly expressed for
many years and the pervading climate, in my
view, is of confusion, cock-up and total
absence of policy direction rather than active

The Mission

We need to find a new way of talking about the
ME spectrum of illnesses. We urgently need to
bring about policy change at the highest level.
I have believed this for many years but my
own health has precluded any significant
action. My opinion is that these files may give
us a springboard for such a campaign but
probably no more than that.

But first and foremost – we need an apology
from the UK government in the same manner
that the Norwegian Directorate of Health
apologised to its ME spectrum patient group in
2011. And we need other countries to do the


Please feel free to share everything in this
article as the more people who have access to
the information, the better. However, I do ask
that I am properly credited with the work I
have done and what I have written as the
effort involved is enormous. I am aware that I
have not properly referenced this article but
everything I have referred to is in the public
domain and is mostly available on the internet.

I welcome comments and discussion but my
health is in shreds at the moment as a result
of the last few days. I need to take a short
break from my work so will not be responding
to anything for the time being.

How to access the ME files

The MRC file (158 pages) is straightforward as
it is available online from TNA website. If you
go to the site catalogue and search for
FD23/4553 you can "shop" and then download
it free of charge.

The DWP file (235 pages) ref. BN141/1 is more
complicated as, when I last checked, it was
not available online as yet. You can view it
either by physically going to TNA at Kew or
you can order a copy of it from the website
but be warned - that is very expensive and
this file contains a lot of duplication so money
is wasted on copying duplicate documents.
There seems to be a copy of this file currently
available via the file-sharing site
"" (see the "Invest in ME" group
on Facebook) but I suspect that will be

About me

I am a barrister and I also have a background in
media and communications. I first became ill
with ME in my mid-twenties in 1981. I
continued to work and study until 1999 when

other serious health problems intervened.
These exacerbated my ME and I have been
unable to work since then.

And finally.....

I send my very best wishes to all fellow ME
spectrum sufferers, families, friends, carers
and all those who believe in us and support us
worldwide. Thank you.


14 August 2012


Invest In ME is unreachable at this moment,
but you can download the file from:

Name: National Archive NB 141-1.pdf
(166.2 MB)

~jan van roijen


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