1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Worldwide petition to get access to secret ME/CFS files

Discussion in 'Action Alerts and Advocacy' started by Daisymay, Nov 10, 2010.

  1. Daisymay

    Daisymay Senior Member

    Messages:
    258
    Likes:
    261
    Worldwide petition to get access to secret ME/CFS files

    PLEASE FORWARD AND RE-POST LINK WIDELY

    Please sign and make a sensible comment if you have one
    ...
    Short link*http://tinyurl.com/2wtp26d

    or
    *
    http://www.thepetitionsite.com/264/...wnormalwview-wzoom0wzoom-wpunctuationkerning/

    Best wishes
    John
    drjohn@mefreeforall.org
    ME Free For All.org

    ....................................................................

    http://www.thepetitionsite.com/264/...wnormalwview-wzoom0wzoom-wpunctuationkerning/

    To make closed information about M.E (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome)

    To make closed information about M.E (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome)

    * signatures: 14
    *
    * signature goal: 1,000

    * Target: Worldwide
    * Sponsored by: Dr John H Greensmith, ME Free For All.org

    We
    the undersigned request that all information relating to M.E. (Myalgic
    Encephalomyelitis) and CFS (Chronic Fatigue Syndrome), including
    correspondence with the medical profession (Ref: BN 141/1), held in the
    National Archives, Kew, UK, as a closed document and not available for
    public access, after 78 years, until 2072, is made freely available.


    It
    is believed that such revelation may yield clues that might lead to
    effective treatments and hopefully a cure for this dreadfully
    debilitating illness, which affects millions of people worldwide.


    This
    petition is in addition to a freedom of information request, made by
    its creator and an open letter to a national British newspaper co-signed
    by a majority of representatives of people with M.E.


    It has
    not been possible to petition number 10.co.uk because the service has
    been suspended since 6 April 2010 and, pending review, is expected to be
    re-launched later in the year. Furthermore, since its jurisdiction may
    be limited to the UK, we encourage petitioners from all over the world,
    since M.E. knows no geographical boundaries, in order to realise the
    magnitude of concern that there is worldwide. less
  2. Min

    Min Senior Member

    Messages:
    1,151
    Likes:
    1,047
    UK
    thank you, I've signed
  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,870
    Likes:
    6,288
    UK
    Done! Thanks for posting, Daisymay.
  4. Otis

    Otis SeƱor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Done! Thanks for creating the petition, Daisymay.
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,033
    Likes:
    10,823
    Logan, Queensland, Australia
    Hi, Just signed. Bye, Alex
  6. Daisymay

    Daisymay Senior Member

    Messages:
    258
    Likes:
    261
    Thanks to everyone for signing, by the way I didn't make up the petition, it was Dr John Greensmith who takes the praise!
  7. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    thank you for posting this

    I signed it
  8. frenchtulip

    frenchtulip Senior Member

    Messages:
    515
    Likes:
    181
    I just signed, too.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,960
    Likes:
    806
    Concord, NH
    Signed the count is up to 171!
  10. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    What? No Freedom of Information Act in the UK??
  11. Cloud

    Cloud Guest

    Signed and link forwarded. I'm glad to see this petition will be going to public media and other sources to ensure it makes it beyond the shredder.

    Thanks Dr John
  12. Sasha

    Sasha Fine, thank you

    Messages:
    7,870
    Likes:
    6,288
    UK
    There is one and people have made repeated requests, invoking the Act, for the files to be opened, with no effect. The reasons given for the refusals don't appear plausible, e.g. claims that patient confidentiality would be breached - this should be easy to overcome by redacting the files (i.e. blanking out the giveaway bits).
  13. shannah

    shannah Senior Member

    Messages:
    836
    Likes:
    160
    Now at 243.
  14. Dainty

    Dainty Senior Member

    Messages:
    1,355
    Likes:
    522
    Washington State
    Oooh, not only am I going to sign this, I know just the people to help us with the signatures. Hopefully I'll have the energy to put my idea through. I'll let you know.
  15. Daisymay

    Daisymay Senior Member

    Messages:
    258
    Likes:
    261
    Thanks to everyone for signing the petition, please keep them coming!

    Just to remind everyone what it is all about, here is an article on the secret files:

    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
  16. Cloud

    Cloud Guest

    My concern is that if these documents contain information vital to protecting government interests, as seems likely by such extreme actions to conceal the contents......what's to stop them from altering the documents upon realizing they will be forced to open them? Of course we need to keep banging on the front door even if they are inside shredding and rewriting files, but I just don't see them giving up the truth all too easily.

    They had their chance for a truthful account of the contents and it's not happening....so, I'm glad to be part of this petition. Good on ya Dr John! Thanks dasiymay.
  17. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
    Ok, signed. Glad to do this.
  18. Dainty

    Dainty Senior Member

    Messages:
    1,355
    Likes:
    522
    Washington State
    I signed, with a comment, but it's not appearing on the petition. I've read all the signatures/comments previous to the time I signed and keep refreshing the page, but no dice. THe page states that I've signed it, but neither my comment nor my name/location have appeared on the petition. Are you sure it's open to those in the US?
  19. curry

    curry Senior Member

    Messages:
    107
    Likes:
    0
    Signed.

    Unfortunately though, I doubt an online petition will change their course of action.


    I have an ideia...probably this sounds a bit off-the-wall, but maybe we should try to get those wikileaks guys interested in the case.
    They managed to hack the pentagon, so the National Archives should be a walk in the park...
  20. Daisymay

    Daisymay Senior Member

    Messages:
    258
    Likes:
    261
    Curry, that's a good idea!

    Any voluteeers to contact them?

See more popular forum discussions.

Share This Page