Mithriel has discouraged people from reading the Report of the "GSRME" - the so-called "Gibson Report", on the grounds of length.
Copy here:
http://www.erythos.com/gibsonenquiry/Report.html
I would not discourage people from reading this document. It is less than 30 pages long
(several pages being taken up with the Canadian Criteria) and it is a very light read - it can be skimmed in a matter of minutes.
When reading this document, please be aware that it is littered with errors, misconceptions and ambiguities. All the national UK patient organisations, and a number of patient advocates, had formally called for the errors and ambiguities within this document to be corrected, between November 2006 and January 2007.
Dr Ian Gibson, who had set up and chaired this unofficial inquiry, himself, failed to act on these concerns.
The report had been published electronically and sent out to all 600 odd MPs, to government officials and to the media before the ME patient community and patient organisations had had sight of it, with no consultation process having taken place and with no procedures in place for addressing errors.
Ann Cryer, Secretary to the GSRME panel, resigned the day after the report was published. The panel started to break up shortly after the public meeting in January 2007 to discuss the report's content.
Dr Gibson was unable to gather all the members of the panel together for that public meeting to discuss the report and how it might be used as a political campaigning tool. After the meeting, he had difficulty getting the remaining panel members to respond to requests to discuss the matter of corrections. In May 2007, the panel formally disbanded. Dr Gibson told me in November 2007 that as his panel had disbanded, he had no mandate to correct the errors, himself.
At the January 2007 public meeting (some of which has been transcribed by me and which I will make available if requested) Dr Gibson had said:
"...We tried within our limitations of assessing the evidence as best we could, I don't pretend in any way that it is perfect. As someone who assesses evidence and still reviews papers I know you need quite a long time to go into the evidence and actually assess it and so on, and you're not always right then, so I don't feel guilty if we've got some things wrong, that's quite possible, that we can also look at it and change it again and so on."
But no corrections were made.
There were several areas which this unofficial inquiry could have usefully looked into - but chose not to.
Dr Gibson had drawn up the inquiry's Terms of Reference without proper consultation with the inquiry's constituency of interest and his panel (not surprisingly) found itself bogged down with a large cupboard full of "written evidence" but with no time and no resources to deal with it.
My view is that this was a very poorly carried out inquiry and that the Gibson panel had no clear idea of what was expected of them, and no clear idea of the inquiry's scope and remit. But that is the fault of the chair and the fault of the ME community for allowing Gibson to set about this unofficial inquiry when there were so many unresolved concerns about its lack of status, its scope, the make-up of its panel, its lack of resources and dedicated administrative staff.
Gibson just wanted
"to get to the bottom" of ME/CFS
"once and for all".
A scientific inquiry or a political inquiry?
At one point, Dr Gibson had said that his inquiry was not going to get "involved with the political issues"!
The inquiry was described as looking into the scientific research since the CMO's Report. But at the public meeting, in January 2007, the Countess of Mar, who had been a GSRME panel member, wished the meeting to note that:
"...The other thing is that quite a lot of the criticism that I've seen has been for the fact that we got the science wrong. This was never, ever, ever a scientific inquiry - it was a political inquiry into the science. So please don't think that we're scientists trying to put out a duff scientific report - we're not. It's got nothing to do with technical science as far as we're concerned - we were looking at the research that has been put in and I look forward to waiting to hear what you have to say..."
I've picked out just a few examples of the standard of this document:
2.4 ME in Teenagers and Children
We included this section because it was previously thought that children could not have CFS/ME.
What does this mean? The panel had taken the CMO's Report as its starting point in which there is a section and Annex devoted to "CFS/ME" in children and young people.
The Group received numerous submissions from parents whose children had or were suspected to have CFS/ME. It has been thought that children could not suffer from CFS/ME.
When? By whom? Up until what point? By the medical profession? By some or all of the panel members? By the public? No references are supplied. (But the document is very poorly referenced throughout.)
...but the Group accepts that CFS/ME is prevalent amongst teenagers and possibly in children.
[The Countess of Mar is a Patron to The Young ME Sufferers Trust.]
Possibly in children?
Dr Gibson had to be lobbied to extend an invitation to Dr Nigel Speight, who for many years specialised in children with ME and CFS, to present at one of the five "oral hearings". Dr Speight's slides are posted on the Gibson Inquiry website, but there is
no reference at all in the Gibson Report to Dr Speight's having presented to the panel around ME in children (and in young children) - though there are several references to Prof Trudie Chalder, about whose work the panel writes:
"4.3 Cognitive Behavioural Therapy
The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT). This treatment has shown to be effective in patients with many long term illnesses for example cancer. Prof Trudie Chalder presented to the group on this treatment. Prof Chandlers [sic] results were impressive. This treatment certainly has a role to play in treating CFS/ME.
Returning to the section:
2.4 ME in Teenagers and Children
However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example.
None of those to whom I spoke could make any sense of this statement, at all. I contacted Dr Gibson for an explanation. His response confirmed that the group supported the highly controversial construct of "MSbP" but shed little light on what the panel had actually understood by what they had written in the report.
(The wording of this section was also queried by Jane Colby of TYMES Trust.)
Page 19 3.2
There is conflicting evidence available regarding Wesselys true opinions. The Group invited Wesseley [sic] to speak at an Oral Hearing, however he declined the offer and sent his colleagues Dr Trudie Chandler [sic] and Dr Anthony Cleare. The Group were disappointed not to have the opportunity to discuss this important issue with such a key figure. Wessely did not submit a written piece to the Inquiry, however in a letter to the Inquiry he did set out his belief that CFS/ME has a biological element which needs further research and investigation.
Note: Dr Gibson's admin who was minute taker at the "oral hearing" at which Chalder and Cleare presented later walked off the job, taking his meeting notes with him (which were later retrieved but were indecipherable). Gibson's admin did not consider it appropriate to advertise the date and venue and participants for Oral Hearings 2 and 3. Consequently, very few members of the public were able to attend these public hearings and they were held virtually
in camera.
In order to avoid this happening for subsequent hearings, I was responsible for a pro bono, dedicated website being put at Dr Gibson's disposal by a webmaster friend in order that the dates and times of future oral hearings could be advertised. Gibson had already been offered free webspace for the purpose of disseminating information about the inquiry by others, early on in the inquiry, but he had failed to take up any of these offers.
The panel says it was disappointed that Wessely did not accept the invitation to attend one of the oral hearings. Dr Gibson has described the letter that Wessely sent to the panel as "lengthy". This was a
public inquiry and Wessely should have submitted material through the proper channels.
I asked for this document to be released.
Dr Gibson advised me that he considered that the letter sent to the panel by Prof Simon Wessely was
"a piece of personal correspondence never meant for the public" and that in his opinion, it should remain that way and later, that Prof Wessely had responded to a request to release this document but that he was in agreement with Dr Gibson that the letter should not be released.
So the Gibson panel was informed by a document (and there is a reference to the Wessely letter in the "Gibson Report") which is not being put in the public domain. It is therefore impossible to evaluate whether the panel made a fair and balanced assessment of its content or to what extent the letter's content may have informed the panel's deliberations, views and opinions and hence the content of the report, itself.
This was wrong.
Either Wessely should have been prepared to submit material through the same channel that everyone else was expected to use, or the panel should not have been prepared to accept his communication. (Note the Report, in any case, failed to provide a List of Written Submissions in an Annex or Appendix.)
3.3.4 Vaccination
Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause. However this is a possible area for further investigation.
According to the Countess of Mar, the panel were not a scientific panel - so why did they take it upon themselves to attempt to evaluate research? (Dr Charles Shepherd was most concerned about this section and had raised his concerns at the public meeting which resulted in an argument with Dr Gibson - a section I have also transcribed.)
4.7.2 Diet and Supplementary
There is no scientific proof of benefit from the use of vitamin or other dietary supplements. However if any of these have been found symptomatically helpful by individual patients the effect should be welcomed but a search through the shelves of the health food shops should not be encouraged with any optimism.
This standard of report writing is embarrassing coming from a group of parliamentarians, especially given that Gibson and Turner had been medical researchers, themselves. The panel had also included two former medical professionals (Lord Turnberg and Dr Richard Taylor). The panel had also included Baroness Cumberlege who has been involved in higher status reports.
Yet they all signed off on this report.
4.2 Existing Treatments
There are 3 psychosocial therapies commonly used to treat CFS/ME in the UK. Psychosocial methods of treatment do have a role to play as the relation between mind and body in disease is complex.
The report lists "Pacing" as one of these
"3 psychosocial therapies used to treat CFS/ME in the UK".
The panel was asked to correct this, they did not.
4.7.1 Pharmacological
Drug therapies are uniformly disappointing in the treatment of severe CFS/ME. Palliation may be helpful and should be attempted. Analgesics and antiinflammatory [sic] agents may provide some pain relief as they can act on the myalgia. Opiates must be used as a last resort because of the probability of addiction and then only after full advice and appropriate treatment from a specialist pain clinic...
What was this panel doing in becoming prescriptive around medications?
6.1
At present CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments.
This is incorrect. The panel was asked to correct this statement but failed to do so - so this misconception gets repeated by the media.
6.3 How the Department for Work and Pensions Formulates
CFS/ME Policy
There are genuine problems in the benefit assessment procedures for CFS/ME and as yet there is no agreement on new written guidance to replace that which is currently in use. This consultation process, involving meetings and redrafting, has been going on for over a year, but government looks like adopting a new benefits policy which may still leave it discriminating against claimants with CFS/ME.
There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical expert in a field of high controversy requires a different methodology of benefit assessment.
But Gibson did nothing to take any of these several issues forward.
7.1
There is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.
The Group does not intend to criticise the motivations or actions of any one group, our aim is to build consensus from this point forward. Indeed the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field.
For commentary see document:
http://twentysixsoldiersoflead.word...ughts-on-the-gibson-report-by-angela-kennedy/
So do read this document and when doing so, bear in mind that the report resulted out of an unofficial inquiry set up and chaired by Dr Ian Gibson, MP (now a former MP) as a
substitute for the high level, independent, inquiry with a panel of experts that he had set himself the task of obtaining within a very short timeframe, but failed to achieve.
The inquiry was not commissioned, nor was it carried out by a select committee nor by any form of Parliamentary Committee. It does not have the authority of either House. No government department was obliged to respond to its recommendations - and no responses were received. It is not a
"Parliamentary Report" or an
"official government document" (it has been necessary to challenge these misassumptions on Wikipedia and elsewhere).
The panel could have usefully done some in depth investigation into any of the following:
Benefits and DLA issues
Bias over MRC allocation of funding
Children's issues - access to education, false accusations of MSbP (FII)
Concerns over the treatment models being offered in many of the CFS clinics that were in the process of being rolled out.
(The report
"welcomes" the clinics and makes no mention of concerns about what many of these clinics would be offering to patients - concerns that Gibson and his panel would have been aware, nor for the fact that many clinics were destined to be sited within psychiatric departments.)
The UNUM issue
Instead it got bogged down with a cupboard full of "evidence", submissions, lengthy documents that busy parliamentarians would have had little time to plough through and allowed itself to stray into areas like becoming prescriptive over supplements, the use of opiates etc. It could not even get its facts right over Higher Level DLA.
I have seen several unofficial reports that Ian Gibson has been involved in, in the past. I would say that this is the poorest report chaired by him that I have seen.
