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Another secret file on ME/CFS comes to light

Discussion in 'Action Alerts and Advocacy' started by dasiymay, Oct 9, 2010.

  1. dasiymay

    dasiymay Senior Member

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    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 correspondence
    covering the period 1988-1997, which are closed for 73 years (ie.until January 2071):

    http://tinyurl.com/yfdt8gm

    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):

    http://tinyurl.com/2w9gs8z

    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: http://tinyurl.com/32fczyu
  2. dasiymay

    dasiymay Senior Member

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  3. Min

    Min Senior Member

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    thanks daisymay

    what can be so secret about our neurological illness that it need hiding for 78 years?
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    I think we can all guess the answer(s) to that one, but who knows if we'll ever know for sure ..
  5. Enid

    Enid Senior Member

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    All coming slowly into the open thanks to people like Margaret Williams. A distinct feeling UK wise ill advised (protecting their favourites/reputations involved and no thought for suffers)
  6. dasiymay

    dasiymay Senior Member

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    Well, as pictureofhealth says, we can all guess, speculate on the reason, but what we need are the facts, the truthful reason why and what is in these files.

    And what was all that about the Official Secrets Act, foreign state and international institutions? Which foreign state and which international institutions did they have particlularly in mind?

    Remember they don't treat this as a neurological disease, Wessely and co say we are merely wrongly believing we are organically ill, so even more weird to have files shut away for so many years for a load of peope who wrongly think they are physically ill and where the official treatment is CBT to correct our wrong illness beliefs!

    As MW said in her article: http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

    "The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential."

    So seventy odd years is a very long period of time for documents to be kept secret.
  7. Esther12

    Esther12 Senior Member

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    Has any one gone through the motions of pushing back against this, and appealing their decisions?

    Surely the personal details of patients could be easily redacted.
  8. dasiymay

    dasiymay Senior Member

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    Precisely Esther, the reasons for keeping these secret seems quite ridiculous, they could easily just redact the names and an other personal details. People have tried to get access, I think Suzy Chapman, ME Agenda, did last December, and someone else got their MP to try, an MP who was experienced in such FOI things, but to no avail, these things are well and truly locked!
  9. Esther12

    Esther12 Senior Member

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    There's meant to be an independant commisioner though, so that unreasonable claims like that can be made.

    Surely they need to provide some further explanation for their refusal? (I think much of my knowledge on this subject comes from a TV dramatisation though, so I could just be chatting rubbish.)
  10. ukxmrv

    ukxmrv Senior Member

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    Esther,

    I put in one of the original FOI requests. I don't think that it is patient details that stops them from releasing this. Patients went to Kew and viewed what was available. They did a really bad job of dedacting patient names in the visible pages from this. At one point a patients is named and enough address details to find them
  11. Mark

    Mark Acting CEO

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    Two thoughts I keep having about this.

    One is: are people like Nick Clegg allowed to see these files? Might be interesting to suggest that he have a look and then explain to us why they're secret...

    The other is a question I've asked before and haven't yet come across an answer to. How many equivalent files are there for other illnesses, and for which illnesses? One regarding MS has been mentioned, but MS could be part of the same picture of course. I'd like to know whether there are stacks and stacks of such files on cancer, alzheimer's, heart disease, etc etc etc etc. If this situation is merely a matter of protecting patient identities, and a routine matter, then there ought to be masses of such files for other illnesses. Whereas if the only illnesses with secret files like these turned out to be ME, MS, and a few other similar conditions, then that would surely mean that there really is something of great significance here.
  12. knackers323

    knackers323 Senior Member

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    Things like this unfortunatly just tell me that
    'we are screwed'
  13. glenp

    glenp "and this too shall pass"

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    Serious ramifications

    I imagine that there would be serious ramifications for those involved!! So much has to be kept shut until their death!!!

    glen
  14. leela

    leela Slow But Hopeful

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    I really wish someone on the inside would leak the whole of it to Wikileaks!
  15. caledonia

    caledonia

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  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    I still don't understand why this can't be blacked out and give us the rest. I agree with Leela. I hope someone at Kew with a conscience will go to Wikileaks. Or perhaps when a relative of a member of Kew staff gets severe ME, they might consider reading the file themselves and passing it on to Wikileaks.

    It has to be an economic/business, or a military type secret, or some environmental factor that has damaged us. ie Something related to Government business interests (like that narrows the field!). Whatever it is, it would either cost too much to change (or to compensate us for), or it is so integral to how we live today that no one would want to change it.

    In other words, no one is protecting patients and members of the public specifically here, they are protecting their own business portfolios, & those of 'UK plc', ie 'the greater good'.
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Also, just wanted to add, probably regular 'library' staff may not have immediate access to these type of documents anyway. If they really are 'Secret' documents, would they have 'coded access only' for eg. and only to someone with the appropriate security/government clearance? Just wondering (wandering?) out loud.
  18. leela

    leela Slow But Hopeful

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    Has anyone ever seen blacked-out declassified info released under the FOIA?
    take a look at this random page, for example:
    http://www.foia.ucia.gov/browse_docs.asp
    The actual physically scanned ones are great oceans of solid black ink lines.
    They are NOT shy about blanking out huge amounts of info.
    Still, sensitive patient information? Name, address, dob--- a few strokes of the pen and you're good to go.
    No, those statemenst about the 22yr old and 27 yr old really sound like transparent doublespeak to me.
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Would blacked out words still be possible to read with the kind of technology used in forensics (or have I been watching too many episodes of CSI)?!
  20. Yogi

    Yogi

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    Did anyone ever download a copy of what is actually available in file FD 23/4553??

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