Why the rush to open the “ME files”?
Last week, the Countess of Mar, a long-standing advocate for the ME cause in the UK’s House of Lords, asked a question regarding why public records on ME dating back to the 1980s and 90s were not being made available under the Freedom of Information act.The reply (from the Liberal Democrat peer, Lord McNally, a minister in the Justice department) was that the files contain large quantities of personal information about individuals who are still living, and to release them with this material redacted would render them meaningless.
This does not cut much ice in sections of the ME community, where the secrecy is widely suspected to be a cover-up (and people in general are loath to trust government assurances). Still, so much is known about ME and the scandals of patient abuse, of harmful treatments being advanced years after they should have been discredited, of patients’ lives being ruined as a result, of demonstrable neurological damage (long before Sophia Mirza’s inquest in 2006), of hospital environments that are grossly unsuitable particularly for those with severe or aggressive ME leading to exacerbation of some patients’ illnesses and to others declining much-needed treatment, and of the connections between certain psychiatrists and the insurance industry, so what could be in these files that might be beneficial and not already widely known?
If they do contain a lot of personal information, it would do for campaigners to remember that a lot of ME sufferers are very private people. When I was looking into the story of Lynn Gilderdale last year, I found that an awful lot of the journals kept by sufferers, particularly on LiveJournal (including Lynn’s own), were private and shared only with chosen friends, and this is only to be expected given the isolation the authors lived in. The one entry from Lynn’s blog that has been widely read was actually only disclosed to a small circle of her closest friends, and the person who gave a copy of it to the police, so that it might be of use in Kay Gilderdale’s defence, made herself very unpopular. I have a friend who was part of that circle, but I’ve not dared to ask her to show me any of the blog that is still private.
The people affected are not famous, but most people do not want intimate details about their lives, or those of their family and friends, made public. Even if people’s names are redacted, some people’s identities might be worked out from the details of their cases, which might be particularly troubling to those who are well-known within the ME community even if not outside it. (Although the classic symptoms of ME, such as a marked increase in severity of illness after exercise or stress, are universal, the exact course of illness varies from patient to patient, often greatly, which could make it easy for someone to be identified.)
There might be a case for some sort of independent commission to review how much of this material is personal and sensitive, rather than damaging to certain people’s professional reputation (though many of their names are dirt already). All this material pertains to things that happened under the Thatcher and John Major governments, so although we have a Tory government now, we did not for 13 years until last year, so it seems likely that they might have released the files if the biggest obstacle was political embarrassment. And who is saying the material is sensitive? What interest does the National Archive have in keeping this secret?
