Saturday, October 9, 2010

Secret Files on ME/CFS

Posted on behalf of Margaret Williams, may be reposted.

Another secret file on ME/CFS comes to light

Margaret Williams   8th October 2010 *

It is notable that two of the funders of the UK PACE Trial on "CFS/ME" (the
MRC and the DWP) have separate secret files on ME/CFS held at the UK
National Archives.

Firstly, the MRC files (Item reference FD 23/4553/1) containing records and
covering the period 1988-1997, which are closed for 73 years (ie.until
January 2071):

And secondly, the DWP files (Piece reference BN 141/1) which have only
recently come to light. and refer to "Medical Policy" on ME/CFS, covering
the period from 1984 to 1993. They are closed for 78 years (ie. until
January 2072):

It is also worth recalling that members of the CMO's Working Group were
threatened with having to sign the Official Secrets Act and in June 2000
were issued with a warning that even if not covered by the Act, the status
of other documents referring to ME/CFS was "RESTRICTED", a classification
that relates to "sensitive issues" and which, if disclosed, might carry a
severe penalty.  The notification further stated: "Papers not so marked are
nevertheless considered confidential....The presumption is that such papers
would in due course be made available to the public...but that the timing
and means of release should be controlled by the authors...or by the
secretariat, as appropriate".

That the Official Secrets Act might have been invoked was confirmed by the
Parliamentary Under Secretary of State at the Department of Health, Lord
Hunt of Kings Heath, in a letter dated 23rd October 2000 and it is notable
that the reasons he gave for protecting information relating to the work of
the CMO's Working Group on ME/CFS were that it may be: "confidential
information obtained by a Crown servant  from a foreign state or
international organisation" and "information in the possession of a Crown
servant the disclosure of which would impede a criminal process".

The question arises, are there any other illnesses where information is
classified for such a long period - the customary period being 30 years, not
78 years? For example, it is known that papers relating to multiple
sclerosis are locked away for only 30 years.

What is so secret about ME/CFS that both the MRC and the DWP feel the need
to lock away documents relating to this illness?

Further information:

* * *
Since some US activists have been discussing the possibility of a class action suit for fraud, defamation, permanently damaging our health, denial of benefits, etc., it's obvious that the 78-year period was selected as the average life span, to ensure that when these documents finally come to light there is no one left to sue and no one left to be sued.  The ultimate in CYA.
However, it's my opinion that when the truth comes out, like the Tuskegee experiment, and the recently-revealed Guatemala experiment, it will be recognized as the shameful action it was.  Even if no one from the original epidemic is around to see it, the names of people like Straus and Wessely will go down in history in infamy, not as the heroes their colleagues would like them to be.
Maybe I watch too much TV/movies, but how does this scenario strike you?  Last night I was watching a show where one of the "good guys" got hired by a company and proceeded to hack the company computers to dig up the smoking gun evidence for her colleagues.  Perhaps someone sympathetic to ME/CFS could get a job working at the National Archives and smuggle the contents of the secret files out?  Post them all over Wikileaks.  Bwahahahaha.

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