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Cause of ME a "state secret" in UK?

Discussion in 'General ME/CFS News' started by Min, Dec 12, 2009.

  1. Min

    Min Senior Member

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    The Medical Research Council's secret files on ME/CFS

    The Medical Research Council's secret files on ME/CFS - Margaret Williams - 10th December 2

    http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

    http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

    Permission to Repost

    The Medical Research Council's secret files on ME/CFS

    Margaret Williams 10th December 2009

    It is an established fact that the MRC has a secret file on ME that
    contains
    records and correspondence since at least 1988, which, co-incidentally, is
    about the time that Simon Wessely began to deny the existence of ME. The
    file is held in the UK Government National Archives at Kew (formerly known
    as the Public Record Office) and was understood to be closed until 2023,
    but
    this closed period has been extended until 2071, at the end of which most
    people currently suffering from ME will be conveniently dead

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    As one puzzled ME sufferer recently noted: "why on earth have a 73 year
    embargo on these documents on an illness where a load of neurotic people,
    mostly women, wrongly think they are physically ill?"
    (MEActionUK@yahoogroups.com; 14th October 2009).

    The MRC's secret files on ME/CFS are closed (ie. unavailable to the public)
    for an unusually lengthy period of 83 years. The standard closure period is
    30 years but, as in the case of these files on ME/CFS, the standard closure
    period may be extended.

    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.

    It may be recalled that during the life of the Chief Medical Officer's
    Working Group on ME/CFS (1998-2002), lay members were ordered not to
    discuss
    the deliberations and were even threatened with the Official Secrets Act,
    for which no explanation was proffered. A letter dated 16th June 2000 from
    Mrs Helen Wiggins at the Department of Health NHS Executive Headquarters in
    Leeds was sent to lay members of the Working Group; this letter stressed
    that it had become increasingly important that any documents or
    information,
    in whole or in part, that might contribute to the report must be kept
    confidential and to this end, members of the Working Group might be
    compelled to sign the Official Secrets Act. This was followed up by a
    letter
    dated 23rd October 2000 from Lord Hunt of Kings Heath, then Parliamentary
    Under Secretary of State at the Department of Health (ref: POH (6)
    5380/83),
    confirming that the information held by the Working Group might in certain
    circumstances indeed be covered by the Official Secrets Act.

    If the psychiatric lobby which dominated that Working Group was so
    confident
    that it was correct about ME/CFS, why the need to force the suppression of
    opposing views by resorting to threats of prosecution under the Official
    Secrets Act in a Working Group that had nothing to do with State security
    but was supposed to be acting simply in the best interests of sick people?
    This was in marked contrast to the "Key working principles" set out in the
    first Briefing Note of March 1999, which stated: "The Group must have
    maximum 'transparency' ie. as much information about its activities to be
    distributed as possible to all potential interested parties".

    One can but wonder how the consideration of ME/CFS could rank as a state
    secret and of what, precisely, was the Department of Health so afraid that
    it even considered the use of such draconian powers? For the record, Mrs
    Wiggins was replaced by Robert Harkins and it was he who sent the letter
    dated 25th May 2004 (ref: TO1056746) in which he stated that the then new
    centres for CFS "will be headed up exclusively by psychiatrists", which was
    deemed to be more evidence of Government policy on "CFS/ME".

    People wishing to access documents archived at Kew are able to make an
    application to access documents that are not redacted or closed, but the
    procedure is lengthy. Prior notificaton and advance booking are required;
    people must remove their coats / jackets and leave them, together with
    personal possessions including handbags, in a locker with a see-through
    door
    for which a numbered key is provided; proof of identity is mandatory and
    every person is newly photographed on arrival.

    Legitimate access has been obtained to some of these archived documents
    about ME/CFS and they make interesting reading, for example:

    On 1st June 1988, Dr Katherine Levy of the MRC sent an internal memo: "I
    have got caught up in an enquiry from HORIZON on MRC support for myalgic
    encephalomyelitis. Mrs Currie (Edwina Currie MP) is on record.as saying the
    MRC is supporting nothing.I had a preliminary word with the producer.she
    evidently wants to quote us and.I do not want us quoted as saying we think
    we have nothing..They would make a meal of it!". Handwritten comments
    state:
    "Is this not the Royal Free Hospital Syndrome and perhaps of controversial
    status as a disease entity?". The handwritten comments continue: "I have
    also spoken to Dr Swash (believed to be a member of the MRC Neurosciences
    and Mental Health Board), who is among the agnostics along with. Peter
    Thomas (believed to be Wessely's co-author the late Dr PK Thomas, a
    neurologist who is on record as describing ME patients' muscle weakness as
    'simulated' in Recent Advances in Clinical Neurology, 1990: pp 85-131) and
    others: his view is that no research of any significance is being
    undertaken
    on this topic in the UK.". On 6th June 1988, a post-scriptum was added: "PS
    I got away with no mention of Radda, the Unit, or Oxford" (in 1984,
    Professor Sir George Radda, as he later became when appointed Chief
    Executive of the MRC in 1996, had published research using nuclear magnetic
    imaging that confirmed a unique biochemical defect in the way energy was
    being produced in an ME patient - Lancet 23rd June 1984: 1367-1369).

    Another document that has been obtained through legal means is a summary of
    the CIBA Foundation Symposium on CFS that was held on 12-14th May 1992
    (reference S 1528/1). The letter "S" indicates that the document is
    categorised as "Scientific" and the following quotations come from the
    section entitled "HIGHLIGHTS":

    "Ned Shorter (ie. Edward Shorter, the Hannah Professor in the History of
    Medicine at the Universtiy of Toronto, a well-known disbeliever in ME/CFS)
    fascinated the audience with his historical perspective on how symptoms of
    disease without apparent organic illness vary over time.Why is chronic
    fatigue (sic) so appealing to patients and their doctors? One factor must
    be
    that fatigue is difficult to disprove. There is a desire among patients and
    doctors to upgrade their symptoms in order to stay abreast of science.
    Virology and immunology are dynamic, progressive branches of science, and
    patients are irresistibly (sic) drawn to them in order to explain the
    mysterious origin of their symptoms. This is evidence of a somatization
    disorder, in which patients believe their symptoms, which are psychogenic
    in
    origin, are evidence of organic disease.".

    The section on Epidemiology states: "CFS.is a collection of symptoms, not a
    disease".

    The section on "Muscle fatigue" records: "Edwards (ie. Professor Richard
    Edwards from Liverpool, on record as stating: "Many of the biochemical
    changes during exercise and many of the symptoms of these patients could be
    a consequence of their reduced habitual activities" -- Ergonomics
    1988:31:11:1519-1527) concluded that on physiological and pathological
    grounds, CFS is not a myopathy; a primary role for psychological /
    psychiatric factors was deduced from a formal comparison between CFS and
    myopathy patients".

    The section on Virology states: "The meeting concluded that exhaustive
    analysis had failed to prove that CFS is caused by a virus or viruses (and)
    members were increasingly drawn to the idea that the search for a single
    identifiable cause of CFS is meaningless."

    The section on Psychiatry states: "Studies have shown that the relative
    risk
    of psychiatric disorder is increased 2-6 fold in CFS cases compared to
    controls with physical diseases. Various themes emerged. One is of a
    subcortical dysfunction analogous to the cognitive problems seen in
    illnesses such as Parkinson's disease. The most impressive evidence of CNS
    disturbance was quoted by Wessely (Institute of Psychiatry) as coming from
    neuroendocrinological studies, suggesting a role for hypothalamic disorder
    as a final common pathway for CFS" (yet Wessely still maintains that
    "CFS/ME" is a somatisation disorder).

    The Psychiatry section continues: "Sharpe (Oxford) (ie. Michael Sharpe, one
    of the three PACE Trial Principal Investigators) described a trial of
    cognitive and behavioural therapy which he is just starting at the
    Warneford
    Hospital. The aim is to help patients re-evaluate and, if appropriate,
    change, unhelpful feelings about their performance and symptoms, and thus
    break the vicious circle. He admitted that the trial was a purely pragmatic
    approach without theoretical foundation" (it is interesting to see
    confirmation in an MRC document - and from Sharpe himself -- that this
    study
    [BMJ 1996:312:22-26], one of the most-relied upon in the "evidence-base"
    for
    CBT in the 2007 NICE Clinical Guideline, was merely pragmatic and without
    theoretical foundation).

    The section titled "The Treatment Process" is particularly notable: "The
    first duty of the doctor is to support as much useful function as possible
    and avoid the legitimisation of symptoms and reinforcement of disability".

    The Section "General discussion" records: "Shorter felt that from a
    historical perspective, CFS was an example of a disordered mind/body
    relationship that would not survive.It was important to step back and look
    at the whole phenomenon of somatization".

    "Summarising, the Chairman (Kleinman) predicted that in 10 years time.the
    central issues in the CFS field would be social rather than medical or
    scientific, partly driven by the economics and funding of the disability
    systems in various countries".

    Here, again, is evidence that the problem of ME/ CFS is seen in terms of
    economic costs to the nation and not in terms of alleviating suffering.

    Numerous sections of this document are redacted and censored under FOI
    exemption 40 (2) and are marked "CLOSED UNTIL 2071".

    Section 40 (2) of the Freedom of Information Act usually relates to the
    protection of personal information; this being so, a perfectly
    straightforward telephone inquiry was recently made to the National
    Archives
    at Kew with a view to establishing why so many sections of a report of a
    scientific conference should be deemed to be "personal information" and
    thus
    closed to the public. Having been advised by staff at Kew to speak to their
    own FOI department with this query, the questioner duly requested to be
    transferred to that department, but when the subject of the query was
    known,
    there was a long delay before the questioner was put through, not to the
    FOI
    department as advised and requested, but to a female member of staff who
    seemed very agitated and who said that she dealt with these particular
    enquiries. The questioner was barely permitted to get a word in and was
    constantly interrupted by this member of staff, who seemed to be reading at
    great speed from a prepared text. When the questioner was finally able to
    ask why a report of a scientific meeting should be deemed to contain
    personal information, the result was a further lecture about how important
    it is to protect personal information. No explanation was provided in
    answer
    to the question posed, even when it was pointed out that personal
    information in the form of names of presenters at the symposium had not
    been
    redacted.

    Given the unconvincing sermon on the need to protect "personal
    information",
    it is notable that other documents in the MRC file held at the National
    Archives make no attempt to do so, for example, on 14th February 1997,
    Karen
    Finney of the MRC sent a memo to Dr Bryant and Dr Coriat at the MRC, in
    which she wrote: "Chronic fatigue syndrome (CFS) and Mr Paul Hulme (sic).
    On
    15th January 1997 a query concerning MRC support for ME was referred to
    me.I
    agreed to speak to the member of the public, Mr Paul Hulme (giving his
    address and ex-directory telephone number -- personal information which was
    not redacted).Mr Hulme wished to know if MRC was funding any specific work
    on ME/CFS.In reply, I said I thought the MRC did not receive many proposals
    on ME/CFS.However, Mr Hulme was aware of a study supported by MRC and
    carried out at the Institute of Psychiatry. He was not happy with the fact
    that MRC had supported this work because ME 'was a real illness and not all
    in our mind'..Following my telephone conversation, I asked Mr Goldstein
    (CAG) to run a search for applications on CFS/ME that we had received over
    the last year, funded or declined..Mr Goldstein's search took a little
    while
    due to other pressing matters.Between 15/1 and 7/2 Mr Hulme rang on average
    twice a week to ask about progress. When Mr Hulme rang on 7/2 I let him
    know, in general terms.that during 1996 we had received four applications
    which had been declined on scientific grounds.Mr Hulme requested that I put
    the result of the search in writing.I am aware that the follow-up letter
    requires careful drafting.Mr Hulme telephoned again on 13/2 to say that he
    needed my letter urgently (as) he intended to fax a letter to Ken Calman
    (Sir Kenneth Calman, UK Chief Medical Officer) concerning the Council's
    lack
    of support for the area, and also other issues surrounding the RCP review
    (the 1996 Joint Royal College's Report CR54). Dr Davies and the Press
    Office
    have been kept informed of developments. I think that a carefully worded
    letter of reply from someone higher up in the Office might put this matter
    to rest".

    It is hardly surprising that the ME/CFS community believes that there is no
    intention to address the psychosocial bias of the Wessely School and the
    damage that such bias causes to those who are physically sick, especially
    given that the MRC Portfolio in Mental Health Research stated "Mental
    health
    in this instance covers.CFS/ME" (Neurosciences Mental Health Board Strategy
    and Portfolio Overview Group Scoping Study, January 2005). When challenged,
    the MRC subsequently stated CFS/ME was classified as a mental health
    problem
    for a "pragmatic" reason that was claimed to be "related to the grants
    classification associated with the activities of one section of the office"
    (letter dated 6th December 2005 from Dr Robert Buckle at the MRC -- a
    member
    of the PACE Trial Steering Committee -- whose letter continued: "The Mental
    Health Scoping Study included the PACE and FINE trials on the basis of the
    type of intervention being assessed, namely psychological interventions.".

    Members of MRC Boards are appointed to act "as a core body of scientific
    advisors, assessing applications to the MRC". The MRC's refusal to accept
    the international biomedical evidence about ME/CFS may be related to the
    fact that in 2002 / 2003 the following Wessely School members were
    appointed
    to MRC Boards: Professor Trudie Chalder; Professor Anthony Cleare;
    Professor
    Anthony David; Professor Anne Farmer, Professor Michael Sharpe, Professor
    Peter White; Professor Richard Bentall; Professor Philip Cowen; Professor
    Til Wykes and Dr SM Laurie, with Professors Simon Wessely and Francis Creed
    having been recent members

    (http://webarchive.org/web/*/http://www.mrc.ac.uk
    ). Wessely was a member of no less than three MRC Boards: the Health
    Services and Public Health Research Board; the Neurosciences and Mental
    Health Group and the Monitoring and Evaluating Group (MESG).

    As Dr Jonathan Kerr, Sir Joseph Hotung Senior Lecturer in Inflammation,
    Department of Cellular and Molecular Medicine, Hon. Consultant in
    Microbiology, St George's University of London, stated at the Invest in ME
    Conference held in London in 2006:

    "It is rather sad that the MRC does not fund any biological studies such as
    we are doing, and I think the current.consideration of grant applications
    to
    the MRC on CFS is currently with the Neurosciences and Mental Health
    Board.and I think that (this) immediately biases the decision-making
    process
    because that panel is made up predominantly I believe of psychiatrists. It
    would be desirable if this could be reclassified (by the MRC) such that
    there would be money available.for biological approaches.It is a fact that
    currently the MRC does not fund any biological approaches".

    At the 2007 Invest in ME Conference, Dr Kerr repeated his message:

    "We have applied several times to the MRC and on each occasion we were
    invited to submit those applications and on each occasion we got scores
    typically of 9, 8 and 3 - the 3 score was obviously from a psychiatrist who
    was complaining about our way of enrolling the patients, the criteria we
    had
    etc.David Tyrell told me the MRC will never fund biomedical research in CFS
    because they are in the thrall of the psychiatrists - so far, he has been
    right".


    DVDs of both these Conferences are available from www.investinme.org

    The late Dr David Tyrell, CBE, FRS, DSc, FRCP, FRCPath was Chairman of the
    UK National Task Force on CFS/PVFS/ME whose 1994 Westcare/DoH Report was
    rejected by the Wessely School and gave rise to their own 1996 Joint Royal
    College's Report (CR54) that denied the existence of ME. In his Foreword to
    the 1994 Task Force Report, Tyrell wrote: "We have no doubt that such
    conditions exist and cause suffering and disability. We discuss the issue
    of
    nomenclature at some length for it is not just a semantic problem. It
    encompasses serious disagreements, which have sadly led to ill will and
    abusive remarks on such questions as whether the syndrome exists, whether
    it
    is 'real' or 'organic' or 'merely' psychological.it is important
    that.administrators, clinicians, scientists, funding agencies and patients
    identify the topics in their field on which action is needed.(and) the
    research community should be developed and strengthened. But we should be
    prepared for the long haul".

    It has certainly been "a long haul" because 15 years later, despite
    approximately 5,000 published mainstream papers that prove them wrong about
    the nature of ME/CFS, the Wessely School remains obdurate that "CFS/ME" is
    a
    somatisation disorder.

    http://www.meactionuk.org.uk
  2. kurt

    kurt Senior Member

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    USA.Earth
    I feel so sorry for the people in the UK who have to put up with this. But really everyone with ME/CFS worldwide suffers the humiliation of disbelief by family, friends and ordinary doctors, and that is true of many other 'invisible' illnesses. As that article makes clear, this is largely a political problem and not one of weak or missing science. The proper solution to political problems is better politics, and not more science. More positive PR for ME/CFS as a serious and neglected problem would be a good start.
  3. blackbird

    blackbird caged.

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    Anyone got an opinion on which country is most likely to get treatment right first?

    And how strict are their immigration laws?
  4. Esther12

    Esther12 Senior Member

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    Do you think there's any chance of getting a proper piece of investigative reporting from a major media group on this, following the XMRV news?

    If it turns out that XMRV is a significant factor for lots of people with CFS, the way CFS has been treated will be an undeniable scandal. Does anyone have any contacts in the media?

    Personally, reading this sort of stuff just freaks me out. I don't have the strength to go through it all myself as thoroughly as I'd like, and reading other people's compilations can make things seem even worse than they are (or than I believe they are).

    Thanks for taking the time to look into this, and pull things together though. Hopefully it will lead to some real media interest.
  5. oerganix

    oerganix Senior Member

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  6. dipic

    dipic Senior Member

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    Not necessarily the "cause"; that's purely speculation. No one knows what that file contains.

    I really do hope some Brits take Dr.Luckett's advice and request a review of the record though. I wonder if anyone has tried this before and if so what the outcome was...
  7. Min

    Min Senior Member

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    Thank you, I was not aware that the file is now to be closed until 2071. Whatever can be that secret about a neurological illness?

    After 22 years of this painful living death I would certainly like to know what is being covered up, but I shall be 130 by the time it's opened.

    As I am house bound I cannot request to view it, but do hope that many others will.
  8. xanadu

    xanadu

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    A request to review the 70-year ban was made more than a month ago. The National Archives will give their decision shortly.
  9. Samuel

    Samuel Bedbound with NO DOCTOR

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    What if there were a concerted campaign, involving the media and parliaments, to open the file? Hammer it home: what are they keeping secret?
  10. JayS

    JayS

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  11. oerganix

    oerganix Senior Member

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    concerted campaign...

    The links in my original post and the latest post are for that very purpose, to have a lot of UKs asking for this info. The meaction.uk links tell how to do it and what to do if they don't respond.

    http://www.meactionuk.org.uk/The-MRC...iles-on-ME.htm
  12. starryeyes

    starryeyes Senior Member

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    Thank you so much for this info oerganix. I always wondered what was in this file. I see now that it's notes written by psychiatrists who are gleeful about denying evidence of biochemical abnormalities in ME. They are so proud of themselves it's unreal. They show that they know that ME is a biological illness and they are intent on suppressing that info. ME must be a very lucrative business for them.
    Gee.. does the CAA know that? I bet not. I sure hope they take a look at this page and update their documents that state that studies prove that CBT helps PWC get better.
  13. valia

    valia Senior Member

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    Of Course the CAA know of this!

    It hasn't stopped them from quoting "WHITE" on their recent pamphlet, I don't know about you lot, but I am truly frightened with what is happening here.
  14. starryeyes

    starryeyes Senior Member

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    Well so much of that file is still inaccessible to the public for the next 70 years that it's very obvious something insidious is going on. It may not be so much that we'll all be dead as that the people in on the secret will be by the time it's open to the public.
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    UK
    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    Open all links on the page, above, including:

    "Closure status Closed Or Retained Document, Open Description Further information about access conditions is available"

    -----------

    Extract Reference 40 pages
    FOI decision date 2008


    Exemption 1 Personal information where the applicant is a 3rd party

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

    Exemption 2 Information provided in confidence

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years. ​


    ------------------

    A review was requested several weeks ago (not by me) and a response has already been received. The response has been published on at least two non public archive Yahoo! lists.

    I have requested permission from the recipient to publish, here, and also on Timothy Luckett's blog.

    An MP also has an FOI in around this issue and he should have received a response by now. I am aware of at least one other individual who has put in an FOI. (Responses have to be provided within 20 working days.)

    See also: Extract FOI Act 2000

    http://www.opsi.gov.uk/Acts/acts2000/ukpga_20000036_en_1

    Freedom of Information Act 2000
    2000 CHAPTER 36


    [...]

    Part II Exempt information

    Exemption Clauses
    Clauses 21- 36


    http://www.opsi.gov.uk/Acts/acts2000/ukpga_20000036_en_3#pt2

    Clauses 37 - 44

    http://www.opsi.gov.uk/Acts/acts2000/ukpga_20000036_en_4

    (which includes exemption on personal and commercial grounds)

    --------------

    Suzy
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    General comment around FOIA requests for information

    On a general note regarding personal and other information held by organisations and with NO reference to this specific issue:

    It's worth bearing in mind that members of the public may submit personal information about themselves or family members, medical histories, the alleged conduct of medical practitioners or in relation to medico-legal cases in which they or family members may be involved to organisations by way of letters or as part of consultations. In some situations, simply redacting names and addresses might not be sufficient to remove information which, by context, might possibly identify the parties involved or identify cases involving children which have since become subject to Family Court proceedings and reporting restrictions.

    Another reason for information being withheld is the issue of commercial interests resulting out of research studies. Applications for funding may include information which might jeopardise the commercial interests of the applicants were that information to be disclosed publicly - for example, in relation to the development of tests and eventual marketing of test kits.

    Research trials often generate other commercial opportunities for the institutions who sponsored or undertook the studies. Following the publication of study results, patient manuals used by trial participants and therapists are sometimes marketed as training packages.

    Another point is research trial "contamination".

    When I applied for various material in connection with the UK MRC FINE Trial, in 2005, I was advised that specific material would be withheld which included the trial participants' and therapists' manuals. Cited exemptions were commercial interests and study contamination.

    This is standard practice for many trials. The other exemption given was patient and public safety, if, for example, a member of the public were to obtain a manual, self administer, for example, GET therapy, and cause themselves harm through lack of supervision by trained trial therapists.

    In some cases there will be legitimate reasons for information being withheld or for specific documents being withheld from files and bundles that are being compiled in response to FOI requests.

    Another exemption is on grounds of cost in terms of the estimated time required for a member of staff to compile, for example, a request for copies of all the documents held within that organisation pertaining to a specific issue, to redact personal data where necessary, to remove specific documents where necessary and to provide copies in whatever form has been requested. Sometime applicants are offered, instead, viewing of the material held, in situ.

    As I say, this is general comment only and not specific to the issue of the Kew Archive with the long disclosure notice on it.

    ------------

    In 2005, I put in an FOIA request for copies of the MRC FINE Trial (Fatigue Intervention by Nurses Evaluation Trial) manuals and other materials to the University of Manchester/MRC. The patient and therapists' manuals were refused but Inclusion/Exclusion criteria, patient information sheets, Patient Consent forms and the patient recruitment literature sent to GP surgeries and Practice Managers was provided and I placed this in the public domain, via Co-Cure, in May 2005.

    The Directorate of Corporate Services provided the following response:

    We have considered the status of these manuals at length and have come to the following decision in this case.

    The University has decided not to disclose this material under the following exemptions in the Act:

    1. Section 38 (Health and Safety). Information is exempt if its disclosure under this Act would, or would be likely to endanger the physical or mental health of any individual. The team consider that putting these documents into the public domain would give rise to the risk that patients would endeavour to treat themselves using it.

    2. Section 43 (Commercial Interests). Information is exempt information if its disclosure under the Act would, or would be likely to, prejudice the commercial interests of any person (including the public authority holding it). There are two aspects to the application of this exemption. Firstly, if the treatments under investigation in this Trial are successful, The University of Manchester would wish to develop training packages for use by PCTs (Primary Care Trusts). The trial team feel that the development of these packages would be compromised if the manuals were put into the public domain prior to this development. Secondly, if the patient manuals were put into the public domain whilst the Trial was still in progress, the trial team feel that this could lead to cross contamination of the results. This would make it difficult to interpret results from the Trial, and would in practice make it very difficult to complete the research satisfactorily. This would endanger the Universitys commercial interests in developing treatment packages as detailed above, as well as endangering completion of the Trial.

    The University has concluded that whilst there is a significant public interest in the treatment of CFS/ME, this is outweighed both by the public interest in preventing mental health risks to patients, and the long term public interest in ensuring that potentially valuable research into treatment can be completed and utilised successfully.

    ---------------

    Organisations differ in how flexible they are prepared to be in compiling the contents of entire files held on specific issues.

    Earlier this year, I was denied a copy of all documents, correspondence and materials held by the Institute of Psychiatry's WHO Collaborating Centre in relation to the CISSD Project by the IoP's Legal Compliance Office, on grounds of cost - though specific questions were provided with responses, and additional information over and above what I had specified was proffered.

    On the other hand:

    As a result of an FOI for the names of the Steering Group and Management Group of the National ME Observatory (information which the Big Lottery Fund* did not hold at the time and were therefore not in a position to provide) I ended up being offered, instead, some 450 odd sides of A4 photocopies which represented much of the file that The Big Lottery Fund were holding on AfME and the Observatory Project, at November 2007.

    A number of pages were identified as having been omitted which had contained CVs and personal contact details. I was also advised that banking details and The Big Lottery Funds internal assessment processes had been left out. Some names and contact details had evidently been redacted before photocopying, but otherwise I was given to understand that little else was being withheld from this very large bundle of documents and correspondence.

    The irony of this is, that as a result of AfME and Dr Derek Pheby's decision not to place the basic information I had requested in the public domain, I actually ended up with a vast bundle of stuff the original Observatory research proposal application documents, the research project costings, copies of the three independent expert review reports, the business plan, the research agreement, variation reports, copies of letters and emails between AfME/Observatory Project personnel and The Big Lottery Fund, internal and external correspondence relating to applications submitted by other individuals under FOI for information about the Observatory Project; staff costings, job specs, costings for equipment, travel, workshops, conference attendance, translations, transcriptions, video equipment, printing, consumables, development of a website, copies of invoices for PCs, printers, software, and various other documents...

    This same bundle had already been made available by the BLF to a previous applicant a few days earlier.

    Eventually, in 2008, AfME's Heather Walker coughed up with the names of the ME Observatory's Steering Group and Management Groups, which I then published on my web site.

    But you won't find them on AfME's site.

    (Action for M.E. has yet to provide dedicated webspace for dissemination of information relating to the National ME Observatory - it is using pages on its own website. This was a Year One Task that had been agreed with the Big Lottery Fund and for which funding of 2000 had been projected. This was for the setting up of an Observatory website for disseminating information to professionals, patients, the media, researchers etc.)


    *The total BLF grant for the Observatory projects was around 500,000.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Don't shoot the messenger...

    [NB: Forward-ME is a caucus group to the UK All Party Parliamentary Group on ME which was convened, last year, by the Countess of Mar, whose meetings are held in private and whose membership is defined by Lady Mar.]

    http://www.forward-me.org.uk/24th November 2009.htm

    Extract: Forward-ME Minutes meeting 24 November 09


    "[...] Peter Spencer [CEO Action for M.E.] said that remarks had been made about the aggressive nature of some of the correspondence together with the number of freedom of information requests from a few members of the ME/CFS community was taking up to 80% of one person's time at the MRC. It was felt that this was unhelpful as the time could better used for constructive purposes. There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field. This was the best opportunity for research support for 10 years and the CFS/ME community should not let it slip through their hands. It was important to get new talent and new technology into the field. It was recognised that the heterogeneity of the disease made it hard to produce proposals."

    I note that Sir Peter does not clarify who had remarked on these apparent concerns.

    Nor is it clear whose opinions are being minuted, here - the opinions of Sir Peter, of the Chair of Forward-ME (the Countess of Mar), of others attending the Forward-ME meeting, or the chair of the MRC CFS/ME Expert Panel or of the MRC's Office of Corporate Information and Policy or their line manager(s).

    The statement above raises a number of issues around how expressions of concern to organisations relating to the publishing of minutes or the making available of other information publicly available are being painted by patient organisation reps and their satellites.

    In the past, we have seen legitimate expressions of concern translated by charity officials, Vivienne Parry (Sense About Science), Prof Peter White, the Gibson Inquiry Report, Wikipedia editors and Admins and others, for example, the ME Association's Dr Charles Shepherd, in terms of acts of "hostility" or "attack" or "vexatious" - this deserves a thread of its own.

    All correspondence that has been undertaken by me in relation to FOI requests and the MRC has always been conducted in a formal and business-like manner and I would be more than happy to publish copies on my website (and have frequently done so).

    I was approached, in November, with a suggestion that others might contact the MRC in a bid to expedite the publication of the Minutes of the November MRC CFS/ME Expert Panel meeting and other material relating to the MRC's Research Workshop, eg the List of Participants (which has since been provided).

    I advised against this, in this instance, since there was already at least one FOI in progress.

    I have not had sight of any of the correspondence with the MRC that others may have engaged in and I cannot comment on its content. I accept no responsibility for the tone, content or frequency of any correspondence with the MRC, carried out by others, either under the FOI Act, or otherwise, but would hope that all approaches made to the MRC are carried out civilly and in accordance with the Act.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Response from Public Services Development Unit, National Archives

    I have been given permission to publish the following:

    [Edit: Response received via email on 22 December 2009.]


    Response from Public Services Development Unit, National Archives


    Dear XXXXXXXXXX,

    Thank you for your enquiry of 17th November 2009 requesting a review of FD 23/4553/1 - Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS) : papers and journal articles; correspondence and enquiries with MRC replies - Closed extracts: 40 pages - 1988-1997.

    The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information. You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you. These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.

    Unfortunately, all of the information which you are looking for is covered by exemptions. This means that we cannot give you any of the information. We have set out details below of which exemptions we have applied and why.

    Which exemption applies?:

    Section 40 exemption: this section exempts personal information about a `third party' (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

    Why this exemption applies:

    The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this file on the grounds that such is seen contain 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 includes the medical details of named individuals. 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.

    Which exemption applies?:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

    Why this exemption applies:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The files contain opinions and information that was given in confidence and the release of which could be actionable.

    If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

    The Quality Manager
    Public Services Development Unit
    The National Archives
    Kew, Richmond
    Surrey TW9 4DU

    You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

    If I can be of further assistance, please do not hesitate to contact me.
    Kind regards,

    (Signed on behalf of)

    Freedom of Information Centre
    Information Policy and Services Directorate
    The National Archives

    Kew
    Richmond
    Surrey TW9 4DU
    0208 876 3444 ext 2552
    Fax +44 (0)20 8487 1976

    If you would like to contact us again regarding this request, please contact the helpdesk:

    via e-mail: By replying to this e-mail
    or (020 8876 3444)
    Remember to quote your call reference number: F0023328 in any correspondence, as this will assist us in providing you with a quick response.

    www.nationalarchives.gov.uk

    --------------
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    http://www.forward-me.org.uk/24th November 2009.htm

    Extract: Forward-ME Minutes meeting 24 November 09

    "[...] Peter Spencer [CEO Action for M.E.] said that remarks had been made about the aggressive nature of some of the correspondence together with the number of freedom of information requests from a few members of the ME/CFS community was taking up to 80% of one person's time at the MRC. It was felt that this was unhelpful as the time could better used for constructive purposes. There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field. This was the best opportunity for research support for 10 years and the CFS/ME community should not let it slip through their hands..."​

    As I've said above, it isn't clear from these minutes whose opinions are being expressed in the passage highlighted in blue.

    Sir Peter Spencer's? Lady Mar's? Dr Shepherd's?

    Or is this the opinion of a member of the MRC's CFS/ME Expert Panel, for example, Professor Stephen Holgate?

    Does this refer to correspondence received through the MRC's Legal Compliance Office in specific relation to the lack of information around the forthcoming Workshop or to the deliberations of the Expert Panel or to requests for information, in general, around MRC research funding?

    If these remarks had not come from Prof Holgate, who has made these comments? There is little point in having comment and opinion minuted if the minute taker fails to record these distinctions - otherwise it's hearsay.

    And it infantilises.

    We are not permitted to know who has been grumbling or who holds these views - only that it is felt in some quarter that we have been "naughty".

    I do not support requests for information to any organisation being made in an "aggressive" manner, nor vexatious requests (and there is a clause in the FOI Act relating to vexatious requests).

    There are circumstances where I do not feel it would be expedient to submit multiple applications for information and I do not encourage others to submit FOI applications where there are already FOIs requests awaiting fulfilment.

    UK Ian McLachlan took his unfulfilled requests for information relating to rejected research studies through the FOI Appeals process and then to Tribunal, which would have cost the MRC time and money - the MRC's Legal Compliance Office may well still be smarting over that.

    Prof Stephen Holgate chairs the MRC's CFS/ME Expert Panel.

    If it is the case that it is Prof Holgate who holds the opinion that MRC funding committee decisions to approve applications for grants for the type of research studies that have been consistently rejected in the past might be dependent on a patient community's quiescence and docility - then that is a pretty dodgy opinion.

    Given the lack of recorded objection in the minutes, this might be assumed to be an opinion supported by at least some members of the Countess of Mar's Forward-ME group and possibly by Lady Mar, herself.


    The full Williams article is 7 pages long, so I'm not going to post it here. But it can be opened in html and PDF here:

    http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

    http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

    and there also is a Word doc version on my site, here:

    http://wp.me/p5foE-2vm

    -----------

    I find it a little irksome that Dr Luckett does not provide a contact email address or a contact facilty via his blog and that he very rarely responds to comments left in response to his own postings; also that he often refers to research studies within his postings but does not always give references for the papers on which he is commenting.
  20. Katie

    Katie Guest

    Hey MEagenda, I'm still on Christmas time so I'm trying not to read ME stuff until the new year (a little sanity break before the replication studies come in) but I think that the comments made are deplorable and speak of a wider distaste of both governments of protest and 'making a fuss'. It also seems that by singling out 'troublemakers' activities but not names, it could be an attempt to isolate activists from the people they are representing. If ME'ers start saying "shut up or they won't help us at all" to anyone speaking out about the dire state of ME/CFS in this country that is tantamount to blackmail.


    I don't often write this strongly but I am deeply angered about the patronising, unfeeling and chastising report. I dispair at the state we are in and I truely applaud you Suzy for doing a superb job in fighting for your daughter and for all of us, you're a mother to us all. I certainly hope you keep that person busy with FOI requests and maybe they will learn the lesson that perhaps they should be more transparent and less cloak and dagger.


    The saddest part is, all this has led to a situation where the majority of us are hoping that we have a retrovirus just to escape this nonsense. If they want us to go sit quietly in the corner and submit to their psychobabble wisdom then they are sorely mistaken.

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