More on the MRC secret files

Returning to an earlier post (see January 28, this year), I have just found this discussion of the Medical Research Council's secret files: http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

I would write a summary, but my brain just isn't up to it any longer. And for those who don't know me, I've completed two Master's degrees each with a research dissertation, from leading universities on each side of the Atlantic, so saying I'm not up to summarizing a short article is an indication of just how badly this illness has affected my brain.

I made a request to view the "secret files" and this is the response I received:

"The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this extract contains the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such information includes the medical details of named individuals including how ME affects them and other matters relating to their condition. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully."


Of course I don't believe that this is the real reason for one minute! It doesn't seem to have occurred to these gate-keepers that they could easily either a) black out the names of the individuals, or b) ask the individuals if they mind their names being made public (I've yet to hear of anyone with ME keeping their identity secret). Of course, as the article above notes, such care about hiding identities is not taken with other documents, so why with these?

Professor Malcolm Hooper takes on the Establishment!

Professor Malcolm Hooper is one of a very small number of the fully-abled willing to take on the establishment in the UK with regards to ME.

Here's the letter he wrote to Sir Michael Rawlins: http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm  (Rawlins is chairman of the National Institute of Health & Clinical Excellence NICE in the UK)

Here's the formal complaint he sent to Lord Drayson, minister of state with responsibility for the Medical Research Council: http://www.meactionuk.org.uk/magical-medicine.htm

Here's his report on ME: http://www.meactionuk.org.uk/magical-medicine.pdf  Read this if you would like to understand what all the fuss is about!

This report will serve as a reference tool for doctors and people with ME for years to come. Thank you, Professor Hooper, for all you've done.

Side-stepping the issue

Some journalists have taken advantage of the recent Kay Gilderdale trial in the UK to discuss assisted suicide. See, for example, this piece from the Guardian by Madeleine Bunting: http://www.guardian.co.uk/commentisfree/2010/feb/08/assisted-dying-danger-vulnerable

I don't read the Guardian, but I do read the Guardian Weekly, where the same article was published under the heading "It's hard to fathom the reality of death". This is my letter to the editor in response:

Dear Editor:

Madeleine Bunting neatly side-steps the real issues emanating from the Kay Gilderdale trial (It's hard to fathom the reality of death, 12 February). This trial may have shown "the English legal system working at its best", however Lynn Gilderdale's many years of suffering with myalgic encephalomyelitis (classified by the WHO - ICD-10 G93.3 - as a neurological illness) have patently shown the British health service (NHS), the medical research council (MRC), and British investigative journalists working at their worst. Ms. Bunting may have difficulty fathoming the reality of death. I have difficulty fathoming the reality of life with a disease that many doctors, researchers, and members of government deem unworthy of their full attention. Why is no one questioning how the British medical system let down this young woman and continues to let down people with ME? No one with ME should feel so abandoned and without hope that they would want to take their own life - this is the real failure at issue here. 

One of my women friends is heading off at the end of the week for a 3 month stint in Haiti - and I'm jealous! I so hope I’ll get well enough soon enough to go back out and do some interesting work in interesting places. I would just love to go and teach in Jordan or Syria!