It has come to my attention as of late that our government holds a file in the National Archives at Kew, which contains MRC documentation on ME since 1988. The file was to be kept from the public eye until 2023, however this has been extended until 2071! Normally, such measures are only enacted on matters of defence, national security, and in matters that are considered very confidential. But what on earth would the medical research council want to keep from public view??? It comes from the same time as the UK's own version of Dr. Reeves - Simon Wessely began to propagandize ME as a psychiatric illness. It would seem rather absurd to even cite patient confidentiality, as a black marker would make short work of maintaining patient confidentiality.
However, fellow Britons, you have options. In THIS document, there is a LINK to request a review of the record under the Freedom of Information act, which requires the filling out of only a few fields. If the National Archives does not provide a satisfactory response, then contact the parliamentary and health services ombudsman:
The Parliamentary and Health Service Ombudsman
Millbank Tower
Millbank
London, SW1P 4QP
Telephone: +44 (0) 84 5015 4033
Fax: +44 (0) 20 7217 4000
Email: phso.enquiries@ombudsman.org.uk
You may also want to contact:
Secretary of State for Justice and Lord Chancellor
Selborne House
54-60 Victoria Street
London SW1E 6WQ
Also, if the requested information is refused, an application may be made to the Information Commissioner, who has the power to order such disclosure, and if unsuccessful, the applicant may appeal the decision to an appeal tribunal - in many cases which have been successful the information has been provided with some redactions to protect confidentiality: The appeal tribunal consists of experienced barristers or solicitors which must provide a fair and independent review. It is your right, and I strongly recommend that you exercise these rights!
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ReplyDelete"Closure status Closed Or Retained Document, Open Description Further information about access conditions is available"
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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.
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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 will request permission to publish, here.
An MP also has an FOI in around this issue and 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)
I have been given permission to publish the following:
ReplyDeleteResponse from Public Services Development Unit, National Archives to request for review under FOI
on my own site at: http://wp.me/p5foE-2yP
http://www.forward-me.org.uk/24th%20November%202009.htm
ReplyDelete(Forward-ME is a caucus group to the APPG on ME convened by the Countess of Mar, in 2008, in order to “hammer out areas where [the national ME and CFS patient organisations] shared common ground”. Membership of Forward-ME is by invitation of Lady Mar, who chairs the meetings. Members of the public are not permitted to attend meetings, either as participants or as observers. Forward-ME meetings are attended by reps from Action for M.E., the ME Association, AYME, The Young ME Sufferers Trust, BRAME, reMEmber (The Chronic Fatigue Society) and Mrs Sue Waddle, on behalf of ME Research UK. The 25% ME Group had been a member of Forward-ME but withdrew from the group. Invest in ME are also members of the group but have been dithering for sometime now over whether to also withdraw their support.)
Extract: Forward-ME Minutes of 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 isn't clear whose opinions are being expressed here. 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, Prof Stephen Holgate? Or MRC officials?
Do these apparent concerns refer to recent correspondence received through the MRC's Legal Compliance Office in relation to the lack of information around the (then) forthcoming MRC Workshop or to the deliberations of the Expert Panel or to the number of requests for information, in general, around MRC research funding?
If these remarks had not come from 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 reporting hearsay.
And it infantilises.
We are not permitted to know who has been doing the grumbling or who holds these opinions - only that it is felt in some quarter(s) that we have been "naughty".
/Continued in next comment
Ian McLachlan has been taking his unfulfilled requests for information relating to rejected research applications through the FOI Appeals procedure and then to Tribunal, over a period of several years, which will have cost the MRC time and money - the MRC Legal Compliance Office may still be smarting over that.
ReplyDeleteProf Holgate chairs the MRC's CFS/ME Expert Panel. If it is the case that it is 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 upon the ME and CFS 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 of the patient org reps who make up the members of Forward-ME group, and possibly by Lady Mar, herself.
In the past, we have seen quite legitimate expressions of concern to various bodies around various issues translated by patient org reps and their satellites, and by individuals such as Vivienne Parry (Sense About Science), Prof Peter White, the Gibson Inquiry Report, Wikipedia editors and Admins and others, in terms of acts of "hostility" or "attack" or "vexatious". There were seven references to "hostility" in the "Gibson Report", alone.
(See: http://twentysixsoldiersoflead.wordpress.com/2009/08/28/more-thoughts-on-the-gibson-report-by-angela-kennedy/ )
White also promulgates the view that "as well as lack of funding, the hostile approach of some patient advocates can discourage potential researchers from becoming involved."
(Report of the AfME/MRC Joint 2006 Research Summit)
Alleged "hostility" hasn't led to KCL, Manchester and Liverpool researchers taking their snouts out of the trough...
White is a member of the MRC's CFS/ME Expert Panel, as are Sir Peter and Dr Charles Shepherd.
If the CFS/ME Expert Panel, under the chairmanship of Holgate, fails to fulfil its stated objectives in encouraging quality applications and their approval (and the MRC has been talking about funding quality research since 2003, but has yet to put any money where its mouth is) - will the MRC, AfME, the MEA, parliamentarians, Prof White et al once again collude in scapegoating the ME and CFS patient community for the MRC's continued reluctance to fund?
Well said, Ms. Chapman!!
ReplyDeleteThank you!
Oh no, the poor junk scientists are feeling discouraged by criticism. Well, when you commit a holocaust against a population of disabled people, sometimes someone will say something that can hurt your feelings. So if you can't take it, don't kick the sick when they're down.
ReplyDelete