The Secret Files Unwrapped: Part I – the importance of fair and accurate records (with file download)

Introduction

I created this blog in August 2012 to publish my investigations into the so-called “Secret files on ME”. It was set up rather hurriedly in order to counteract some misinformation which was circulating at the time. My work was not finished when I started the blog and it took me some time to complete the process. In the absence of any proper treatment for Myalgic Encephalomyelitis or ME (also known, unhelpfully, as “chronic fatigue syndrome” or CFS), my health continues to deteriorate and my progress is painfully slow.

The full story of my work on getting these files opened up is set out in a post from November 2012. This is a brief summary of the background to the files, taken from that post:

For several years, there had been considerable speculation and rumour surrounding some “secret” files on ME (the illness I have lived with since 1981) which are held in The National Archives (TNA) at Kew in London, UK. In September 2011 I decided to use the Freedom of Information Act of 2000 (FoIA) to see if the files could be opened up.

It transpired that there were two files – one from the Department of Work and Pensions (DWP, formerly known as the Department of Social Security – DSS) and one from the Medical Research Council (MRC). The files contain documentation  about ME (correspondence, notes of meetings, background material and details of benefits claims/research applications). Both files had been reviewed and archived in the normal way during the 1990’s. Because each file contained information which was properly exempt from disclosure under the Act, they were closed to the public until 2072 (DWP – pictured above left) and 2071 (MRC).

It was always my intention to upload the files here as soon as I was able. Both files can be found elsewhere online but not everyone who has an interest will necessarily have been able to access them. My aim is to make them more widely available for academic, educational and research purposes. They stand in their own right as historical records relating to the formulation of UK policy on ME/CFS (sic) during the 1980’s and 1990’s. Accurate historical records play a crucial role in every democratic society.

To the best of my knowledge, no official record exists which truthfully documents patients’ experience of living with ME. The illness itself has been documented since the 1934 Los Angeles outbreak in the US. It was accurately described by doctors following the “Royal Free disease” outbreak in the UK in 1955. Eighty years on, despite the existence of these (and many other) records, the real nature of the illness is still effectively denied by many doctors, either actively or simply by default. Patients are still stigmatised and abused; the illness is still not properly recognised, the result being that there are still no officially-approved treatments available anywhere which actually treat the condition and address its wide range of symptoms.

************

The complete absence of a visible patient narrative became painfully evident last week. The mainstream British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here).

Many journalists simply regurgitated a press release from the Science Media Centre’s relentless propaganda machine, having failed to make any responsible enquiry into the real story. Subsequent rebuttals from patient groups and charities limped in on the back foot. Inevitably, however, the positive and corrective commentary was drowned out in the general furore. Patients and supporters rallied but were all too late to the party.

Why? How could this happen yet again? Because it can. Because that real story, patients’ actual lived experience, is invisible. It remains unseen and undocumented. Accounts of individual patients’ experiences appear occasionally, often in local media or comment sections of national media, but their impact is low. At worst, these stories may even serve to normalise the shocking way in which patients are treated and the illness portrayed, rather than emphasising the underlying scandal.

Chronically sick ME patients are not up to the herculean task of funding and managing a long overdue strategic media initiative to disseminate the real story pro-actively and address negative publicity. But without such a campaign in place, it will happen again. Patients will remain without a credible platform from which to speak and generate an accurate record for the archives.

Do media stories really matter? Yes, of course they do – because those stories are subsumed into the source materials which constitute our collective history. If there can be no aggregation of fair and accurate records, then history is falsely written and becomes a mere propaganda tool.

************

So – back to those files, which form part of the UK’s official record of ME policy development and remain, so far, officially unchallenged. Reading them is a deeply distressing experience. In an effort to minimise the impact on my health of writing this post, I have not re-read them recently. I’m therefore posting them without further discussion. Both files are quite long so I am going to spread them over two posts. Both still contain redacted portions for reasons which are explained in my original post (see link in second paragraph of this post).

The link at the foot of this post is for the DWP file (previously the Department of Social Security – DSS). It is 235 pages long and is described as follows on the title page on TNA’s website: “Medical policy formulation; consultation with medical experts and advice from Board of Doctors“. The illness is described as “ME CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)” and the dates covered are 1984-1993.

There are two ways of viewing this file. One is to visit TNA at Kew in south-west London and view the original; the other is to look at a photographic version of the file, such as this. Taking photographs of 235 already rather blurry pages was a laborious process and unfortunately the image quality is not the best. However, I hope that readers will be able to garner the information they need. I will upload the other file (the MRC file) in Part 2 of this post.

DOWNLOAD pdf image file (this may take a few minutes so please be patient): NatArchBN141DSS