Secret ME files -National Archives Kew in London

[Guest guest]

Thanks to Marry Molendijk

REVIEW August 2012:

The “Secret” M.E. files in the

National Archives at Kew in

London, UK-

by Eliot

Introduction

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

legislation.

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

conspiracy.

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

same.

SHARING AND ATTRIBUTING INFORMATION

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

“yousendit.com” (see the “Invest in ME” group

on Facebook) but I suspect that will be

temporary.

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.

VALERIE ELIOT SMITH

14 August 2012

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Invest In ME is unreachable at this moment,

but you can download the file from:

http://yousend.it/MYPZ37

Name: National Archive NB 141-1.pdf

(166.2 MB)