Re: A victory: Greg Crowhurst, via Co-Cure, 7 November 2007

Suzy Chapman & Ciaran Farrell
9 November 2007
Re: A victory: Greg Crowhurst, via Co-Cure, 7 November 2007

On Wednesday, Greg Crowhurst published a response (circulated via the Co-Cure mailing list) to the UNUM news item broadcast on BBC News at 10 on 6 November. Mr Crowhurst is a committee member and Secretary of The 25% ME Group but it is assumed that this commentary has been written in a personal capacity.

In his response, Mr Crowhurst welcomes the brief appearance of Dr Ian Gibson, MP during the BBC’s coverage of the UNUM story. Mr Crowhurst has referred to the “Gibson Inquiry” as a “Parliamentary Inquiry” and this needs correcting.

Following publication of the Gibson Report, last November, a number of organisations and individuals here in the UK, but also some US ME advocates, have erroneously attributed “official” status to this informal inquiry and the report which resulted from it. This misconception has been reiterated in the UK press, on some UK websites and by at least one US website; some editors of Wikipedia have also misunderstood the nature and status of this inquiry. We are pleased to note, however, that one UK ME organisation, Invest in ME, has now ceased using the term “Parliamentary Inquiry” in relation to the Gibson Report.

This misconception has been pointed out on numerous occasions by ourselves and by others. It is curious then, why Mr Crowhurst persists in elevating the status of this informal project of Dr Gibson’s and why Co-Cure are prepared to continue to disseminate misinformation via their international mailing list.

We should like to refute once and for all the misconception that the so called Gibson Report is an “official report” resulting from a “Parliamentary Inquiry”.

For readers unfamiliar with the background and to set Mr Crowhurst’s misattribution into context – Dr Gibson had originally stated in the media, in 2005, that he intended to call for a “full and proper” and “high level” public inquiry.

It had been understood and anticipated by the ME community that if a high level inquiry were to be secured as a result of Dr Gibson’s endeavours that the panel conducting this inquiry would need to comprise a panel of experts in various fields and should also include a legal professional. But instead of the high level inquiry the ME community had been led to anticipate, in late 2005 Dr Gibson convened the Group on Scientific Research into ME (GSRME) as a cross party parliamentary group.

He then set about assembling a committee of fellow parliamentarians (whom he recruited himself) and installed himself as chair of this panel – without having first consulted with the ME community over his failure to secure a high level inquiry within the time-frame he had imposed upon himself; nor did he first ascertain whether the ME community would consider that an informal and unofficial inquiry with no funding or dedicated resources to call on and carried out by parliamentarians, instead of the anticipated panel of experts, would be an acceptable and fit for purpose substitute for the type of inquiry that had been previously discussed with him in meetings with Prof Malcolm Hooper, Kevin Short and several Norfolk residents.

So the GSRME group was an ad hoc, unofficial committee of parliamentarians, convened by a self appointed chair and not the “Parliamentary Inquiry” that Mr Crowhurst persists in rebranding it as.

Being an unofficial inquiry, this project lacked resources, had no funding allocation to draw on and no dedicated researchers or administrative staff.

The Report, when it was finally published by the GSRME, in electronic format only, was submitted to NICE as part of the NICE CFS/ME Guideline consultation process, though not in the designated pro forma format. NICE has published no response to this particular submission.

There is no distribution list included within the document, but copies of the Report were sent by Dr Gibson to the press, to MPs, to the CMO, to the CE of the MRC and to selected ministers – complete with factual errors, ambiguities and omissions and without any form of consultation or review process having taken place, despite prior claims by Dr Gibson that some form of consultation would be undertaken prior to launching the Report and sending copies to the media.

Being an unofficial document, no government department or ministry is obliged to respond to the Report’s content or to its recommendations and so far, Dr Gibson has published no responses whatsoever from those to whom he sent copies of his Report and a covering letter, last November.

The cross party parliamentary group set up by Dr Gibson to hold this “inquiry” was not on the “Approved List” and did not enjoy the status and privileges of an All Party Group designated as being on the “Approved List”. All Party Parliamentary Groups which are on the “Approved List” have, in any case, very low status and are regarded by Parliament as unofficial.

There are dozens of cross party parliamentary groups on the Register, both on the “Approved list” and the “Not Approved list”. These interest groups are set up for issues covering everything from cheese and jazz appreciation to domestic violence and identity fraud. Dr Gibson is listed as a member of a number of these groups. The Register can be found here

Any of these interest groups are at liberty to publish their own reports – but none of them would have any status within government nor the authority of either House.

In December, 2006, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards, was asked to clarify the status of the GSRME group in light of the fact that the Gibson Report had been reported in the press as having resulted out of a “Parliamentary Inquiry” undertaken by a “Parliamentary” committee.

The Office of the Parliamentary Commissioner for Standards provided me with the following written clarification on 9 January 2007:

“Scientific Research into ME group [GSRME, aka the “Gibson Group”]

“Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead. However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”

 

To summarise the status of the Report of the GSRME:

It is an unofficial document produced by an ad hoc committee of parliamentarians; it was not the product of a select committee nor the result of a commissioned inquiry; as a document, it has no status within either of the Houses of Parliament or within government.

Although presentations at “Oral Hearings” were held informally in various House of Commons committee rooms (note “committee rooms” and not the House of Commons) the document does not have the authority of Parliament or of any government department and it should not be described as a “government report” or a “Parliamentary Report” or an “official document” or an “official inquiry” or an “official report” or a “Parliamentary Inquiry”.

There are no complete records of the presentations and discussions which took place at the five “Oral Hearings”. The GSRME failed to make audio recordings of all Hearings that were held and there was, in any case, no funding for official transcripts to be prepared. Copies of some but not all Power Point presentations are posted on the official Gibson Inquiry website. No Minutes are recorded for Oral Hearing Three at which Prof Peter White, Prof Trudie Chalder and Prof Anthony Cleare gave presentations and the Minutes for some of the other “Oral Hearing” meetings are very sparse.

Initial offers of webspace were not followed up and it proved difficult for the ME community to keep abreast of developments, the dates of meetings or to establish the names of those who had been invited to present oral evidence. The decisions about who would and who would not be invited to present were controversial and contested by those who considered, for example, that it was essential that a paediatric specialist such as Dr Nigel Speight should be invited. [Although Dr Speight did present at Oral Hearing Four, his name does not appear anywhere in the Gibson Report, itself.]

Oral Hearings Two and Three took place virtually in camera as the panel had neglected to advertise the dates and locations of these two public Hearings; there is no complete list of those who presented Oral Evidence given in the Report and no appendix of Written Submissions and Written Evidence; the Inquiry’s Terms of Reference are omitted.

Much of the Report is unreferenced and reads like an opinion piece. It is therefore impossible to determine precisely what was said and discussed at the Oral Hearings, just what material and evidence the panel received by way of Written Submissions, what it had reviewed and evaluated, what it had relied upon as evidence and what it had considered anecdotal and what it had obtained or commissioned from other sources in order to inform itself in the writing up of its Report. There is no appendix of government documents and reports pertaining to ME in adults and children which the panel already had at its disposal.

Some material referred to in the Report, such as the lengthy letter the panel received from Prof Simon Wessely, has recently been determined by us as having been submitted on the basis of “a piece of personal correspondence never meant for the public”. Neither Dr Gibson nor Prof Wessely has been willing to release a copy of this material to us nor has Dr Gibson been willing to confirm whether specific statements made by the panel in the Report originated directly from this material or from the panel’s understanding or interpretation of this material and if not, to provide references or sources which would substantiate these claims. It is not possible, therefore, to assess in what ways and to what extent this material may have influenced or fed into the panel’s Report or to determine whether the GSRME panel has made a fair and reasonable assessment, evaluation or interpretation of the content of this material or the content of all other written material, submissions and evidence it had received during the course of its “inquiry”.

The inquiry, we would remind readers, was intended by Dr Gibson to be a “Public Inquiry”.

The document’s inclusion of factual errors, omissions, contradictions and ambiguities, the paucity of references, the omission of Terms of Reference, the omission of a complete list of Witnesses who presented evidence at “Oral Hearings” and the omission of a list of Written Submissions were raised by national patient organisations and patient advocates at a public meeting in February 2007 to discuss the content of the Report, its recommendations and how the document might best be used as a political campaigning tool.  Not all members of the panel attended this meeting.

But following the public meeting, the panel made no revisions or amendments to the document and these concerns remain unaddressed by the Report’s authors. This has presented the ME community with the significant problem of how best to make use of a flawed document which is essentially not fit for purpose.

Factual errors and misconceptions within the Report, for example, the section on benefits, and misconceptions about the status of the inquiry, itself, have been ingeminated by the media and reiterated on mailing lists and internet websites and are still being reiterated.

This situation illustrates very well the pitfalls of unofficial reports, resulting from informal inquiries carried out by ad hoc committees of parliamentarians under self-elected chairs, in that there are no lines of accountability when things go wrong. Although the Gibson Report has no status within Parliament or government nevertheless, its constituency of interest, that is the ME patient community, rightly wish to ensure that all statements and references made within this document have been properly sourced and can be confidently relied upon.

One editor of Wikipedia with no background in ME political issues commented that they were surprised there was no copy of the Report on the Parliament website – another mistakenly referred to the Gibson Report as being a “Reliable Source” in Wiki terminology since this was an “official document”. It has had to be pointed out that whilst a paper copy of the Report has been placed in the House of Commons Library there is no copy on the Parliament website because, as an unofficial project initiated and undertaken by Dr Gibson, the document is not published by Parliament and because the “inquiry” and the Report does not have the authority of Parliament, and since it was not commissioned by Parliament or at the behest of any government department or Minister, it is not published or distributed by Her Majesty’s Stationery Office. The status of the committee that wrote the Report and hence the status of the document, itself, should have been clarified at the beginning of the document along with the panel’s Terms of Reference – another good example of an important omission from this document.

The GSRME committee was dissolved in May 2007.

In the Minutes of that meeting, the following was recorded at minute 2 and 3:

2) Response of Group members/frequency of meeting: The Group members present discussed the fact that the other members were no longer willing to attend meetings or engage with the work of the Group. The GSRME had always been set up to run for a finite period of time to conduct an Inquiry. The other members obviously felt they have served their time and were not willing to continue. Thus the Group should disband. In any case it is confusing and of little use to have an APPG and GSRME when efforts can be concentrated in one place.

3) Mandate to speak for the Group/correspondence: Sarah Vero had made numerous attempts to get the individual Group members to agree to amendments to the report however only the members in attendance would be willing to consider amendments and as such there is not a mandate of the Group to consider amendments. Dr Gibson was still responding to correspondence on behalf of the Group and felt it was not right to continue doing so without their support.

 

So the GSRME panel has bequeathed upon its constituency of interest the legacy of a document for which neither factual errors, omissions and ambiguities can be addressed and as a result, many sections of the report which required attention remain unrevised, uncorrected and unreferenced. This compromises the position of the very group in whose interests this unofficial inquiry was instigated.

Brought in to comment during the BBC News at 10 report, Dr Gibson called for an “open scrutiny process in parliament” into the operation of UNUM. In the report of the GSRME in Section 6.3: How the Department for Work and Pensions Formulates CFS/ME Policy, the panel had recommended “a full investigation” into the “vested interests” of private medical insurance companies, in particular UNUM [Provident] and that the group found this to be “an area for serious concern” and recommended “a full investigation of this possibility by the appropriate standards body”.

Public and parliamentary scrutiny of the practices of private medical insurance companies, the DWP or any other commercial or public sector organisation or agency with a questionable modus operandi is of course to be welcomed. But after he had published the Gibson Report and when significant concerns about some of its content began to emerge, Dr Gibson put on record that the Report was “not out for consultation/amendment” and that ownership of the Report would remain with the panel, despite his assurances to the audience at the Invest in ME Conference 2006 that some form of consultation process with the ME community would be undertaken prior to the Report “hitting the media airwaves”.

No formal policies for the correction of errors or for the carrying out of revisions had been drawn up by the panel or discussed with the ME community before the Report was published – for Dr Gibson formed policy on the hoof.  ME advocates, advocacy groups and national ME charities, such as The 25% ME Group (of which Mr Crowhurst is Secretary), AfME and The ME Association had made representations to the panel that errors, omissions and ambiguities identified within the Report should be corrected and that specific sections needed revision – to no avail.

So the public meeting to discuss the content of the Report was a waste of time, along with the tokenistic Gibson panel/ME Association “feedback exercise”. And although  some members of the panel were apparently subsequently prepared to accept they had a duty of care to revise the document and correct the errors brought to their attention, the panel has since disbanded and the document cannot be corrected or revised.

Dr Gibson was asked, last year, to provide references for potentially damaging statements in relation to the section on ME in teenagers and children – he did not do so. As already stated above, he was more recently called upon to provide references for some very contentious, unsubstantiated claims made within the Report in Section 3.2 in connection with Prof Simon Wessely, but again, Dr Gibson has been unwilling to provide these references or cite sources for these claims.

It is ironic that Dr Gibson is calling for scrutiny and accountability from organisations such as UNUM when he has repeatedly failed to demonstrate the same commitment to transparency and accountability in his own dealings with the ME community, as evidenced by the well documented history of the process of the Gibson “inquiry” and its Report – a flawed document which many of us consider remains unfit for purpose and which we cannot comfortably and confidently place before our MPs or hand to our medical practitioners or present to the media.

Mr Crowhurst is an intelligent and politically astute man – he must surely recognise this, too. 

It has been pointed out many times on Co-Cure and elsewhere, by ourselves and by others, that the Gibson Inquiry was not a “Parliamentary Inquiry” and that the Report was not a “Parliamentary Report”. To deliberately or inadvertently elevate the status of a document known to have significant shortcomings, at best, and to contain potentially damaging content, at worst, cannot in any way be justified. 

Would Mr Crowhurst please bear this in mind next time he writes about Dr Gibson and his Report on Co-Cure? Would Co-Cure moderators please also desist from publishing misinformation? The publishing of a correction by Co-Cure would be appropriate.

Dr Gibson is passionate about calling for inquiries…within hours of having published the Gibson Report he was calling for an full investigation into WiFi. In the Minutes of the July meeting of the APPG on ME, it was recorded that Dr Turner is planning to invite the new Secretary of State for Work and Pensions to address the APPG at its February meeting. Given Dr Gibson’s recent commitment on The News at 10 to an “open scrutiny process in parliament” into the operations of UNUM and given the GSRME’s stated concerns about the way in which the DWP operates and the specific implications for claimants with ME, might we look forward to Dr Gibson actually putting in an appearance at the next two meetings of the APPG on ME? 

And if Dr Gibson does take part in next Monday’s You and Yours strand on ME will he be giving us an update on what progress he has actually made towards “a full investigation” into the “vested interests” of private medical insurance in the twelve months since the publication of his Report?

Suzy Chapman & Ciaran Farrell
9 November 2007

Links for further reading:

1] https://meagenda.wordpress.com/2007/06/18/dissolution-meeting-of-the-gsrme/

Agenda and Notes following the meeting of dissolution held of the Group on Scientific Research into ME (GSRME) held on 8 May 2007

2] https://meagenda.wordpress.com/2007/09/26/more-thoughts-on-the-gibson-report-from-angela-kennedy-revisited/

Edited commentary from social scientist, Angela Kennedy, first published December 2006 following the publication of the “Gibson Report”.

3] http://tinyurl.com/24wgag

THE ONE CLICK GROUP REPORT The Gibson “Inquiry”
17 January 2007

4] http://www.theoneclickgroup.co.uk/documents/ME-CFS_pol/Realpolitik%20and%20ME.doc

Realpolitik and ME by Martin J. Walker
8 November 2005

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