The “Secret” Files on ME/CFS
NOTE: since I began writing this post, the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in New York City released the findings of a large study of ME/CFS (see below) patients. Media coverage has been extensive – although much of it is standard churnalism, rather than anything more trenchant (see my previous post). This study could prove to be a game-changer, a minor milestone or just a flash in the pan. It’s too soon to make a realistic assessment but so far the results – and the consequent extended narrative of this illness – look promising.
The “Secret” Files on ME/CFS
For those who are unfamiliar with the story of “The Secret Files” and the illness Myalgic Encephalomyelitis (ME), the full background is set out in the introduction to Part 1 of this 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 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/CFS (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) and 2071 (MRC).
This is my original post in the “Secret Files” series, from August 2012. It was written before my work on this subject had been completed. At that time, posts had begun to appear on social media which were wrongly attributing my work to someone else. It became clear that I needed to publish an account of my work up that point to set the record straight. As a result, I set up this blog and drafted the document....
It turns out they’re not so secret but they do give us a further body of evidence about how and why we got to where we are at the moment with this crippling disease ie. no recognition, no proper diagnostic process and no effective treatment/cure. I doubt the redactions would tell us much more even if my appeals are successful but I will post more when I have the results.