Yet he gets invited by Parliament to present his own definition to split ME of from "CFS" in Britain. (And posted is the '07 edition.) His first invite was before Sophia Mizra was sectioned and died of "CFS." But has this become the British definition of ME? For practical purposes, from Malcolm Hooper etc., it doesn't sound like it.
Hi Warbler512 and all, and thank you for your welcome, Kim,
I'm not sure if you are asking whether "CFS" has become the "British definition of ME" or whether Hyde's own definition has become the "British definition of ME". But Hyde was
not invited by the UK Parliament to present his own definition and
no definition of Hyde's has become the
"British definition of ME".
I hope you won't mind my clarifying the status of the "Gibson Inquiry", which will take us Off Topic, but I think it is important that the status of this inquiry is properly understood outside the UK. This post also includes at the end some information from Dr Hyde, himself.
The "Gibson Inquiry" has been erroneously promoted as a "Parliamentary Inquiry" both in the UK and beyond.
It was not.
The inquiry was instigated by former Labour MP for Norwich North, Dr Ian Gibson. Dr Gibson had been lobbied by Prof Malcolm Hooper and several ME advocates in the Norfolk area. His response had been, initially, to call for a "high level" independent inquiry that would
"get to the bottom of ME/CFS, once and for all" - whatever he meant by that.
When he was unable to secure a high level inquiry within the very short time-frame he had set for himself, he announced that instead, he would set up and conduct an inquiry himself and he would select and chair its committee.
There were huge issues over what the scope of the inquiry should be, who would be invited to sit on his panel, who the experts would be, how the inquiry would be carried out, how it would be decided who would be invited to give oral evidence, and many other issues. Dr Gibson was intent on doing things "his way" and he did not properly consult with the ME community over how this project would be carried out, what its aims and objectives would be and the drawing up of its Terms of Reference. He did not pause to ask whether this level of inquiry would be a suitable substitute for the full and high level inquiry he had promised to secure on behalf of the ME community, or whether we would prefer to wait until a high level inquiry could be secured - he just ploughed on...
It a nutshell, it was a fiasco from start to finish and this poorly written report remains littered with uncorrected errors, misconceptions, ambiguities and contradictions.
Dr Gibson set up an ad hoc APPG group for the duration of the project. In terms of status, this type of group is on the lowest rung of parliamentary committees - an APPG group not on the "Approved Register".
Dr Gibson drew his panel from members of the House of Lords and members of the House of Commons - there were no external experts of any kind and the inquiry that this panel undertook was accountable only to Dr Gibson. The Office of the Parliamentary Commissioner for Standards has confirmed that the inquiry and the report that came out of it does not have the authority of Parliament and that it is an unofficial report published by a group of parliamentarians.
Because the inquiry was not commissioned by Parliament or by any govenment department or carried out by a Standing Committee, Select Committee or any other type of Parliamentary committee, no government department was obliged to respond to the recommendations within the report and none of them did.
There was no funding allocation for the project and no dedicated administrative staff. The panel were overwhelmed with submissions. The panel also significantly exceeded their remit, for example, becoming prescriptive around medications and allowing themselves to become bogged down in areas that they were ill equipped to involve themselves in. There were many areas they could have "safely" scrutinised and reported on, but did not. But then the Terms of Reference had not been drawn up in consultation with the ME community. Parts of the report are shockingly ill-informed.
So it needs to be understood that the report was an unofficial report, published by a group of parliamentarians accountable only to a former back bencher, Dr Ian Gibson, and not a Parliamentary Report resulting out of an official Parliamentary or government inquiry or an independent, commissioned inquiry - which is a completely different kettle of fish in terms of status. Gibson has chaired other unofficial inquiries which have led to formal inquiries being undertaken - but the report of the GSRME was not one of them and the report has pretty much sunk without trace. The panel was not even prepared to stay convened long enough to correct the factual errors and misconceptions that
all the national patient organisations had brought to its attention.
Having met with Dr Hyde, Dr Gibson had evidently invited Hyde to produce a document to feed into the inquiry, although the nature of this document and how it was to relate to the inquiry, itself, whether it was intended to serve a purpose beyond the inquiry and if so, what that purpose would be, were never defined by Dr Gibson or discussed with the inquiry's constituency of interest.
Dr Hyde missed the boat
Dr Hyde completed his document too late for inclusion in the "Gibson Report" and there is no mention of any Definition as a work in progress in the report, itself.
When Dr Hyde finally published the document:
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
in the preface, he dedicates it to Dr Gibson and sets out that he had attended two meetings with Gibson and had been invited
"to prepare a report that might assist the committee in its further deliberations."
Dr Hyde lists the members of this unofficial GSRME panel in the preface under the two headings:
The House of Commons Committee on M.E.
The House of Lords Committee on M.E.
This is misleading.
The inquiry was not conducted by
"The House of Commons Committee on M.E." or
"The House of Lords Committee on M.E." it was conducted, as I have set out, by an unofficial committee set up by Dr Gibson who had invited three members of the House of Lords (one of whom was the Countess of Mar who attends APPG on ME meetings) and four Labour MPs and one Independent MP, to make up the panel - a panel that had no accountability to any government or Parliamentary Office or Agency.
Perhaps it is the case that Dr Hyde did not fully understand the status of the inquiry and the unofficial nature of the report that resulted out of it and not that he sought deliberately to aggrandize its status.
I have also seen reported, in the US, that meetings and oral hearings for the inquiry were held in the "House of Commons" or in the "UK Parliament".
They were not.
They were held informally in Portcullis House and House of Commons committee rooms. For some of these meetings, no Minutes or recordings exist because of poor administration; two of the oral hearings were held virtually
in camera because Dr Gibson's admin guy (who later walked off the job taking his meeting notes with him) did not bother to circulate notices of the dates, venues and agendas. Consequently, very few members of the public attended two of the public oral hearings, one of which had included presentations by Chalder, Cleare, Kerr, Spence and White, because they did not know when they were taking place.
Incidentally, Dr Gibson (who had to be lobbied to extend an invitation to Dr Nigel Speight) had invited Prof Simon Wessely to present at an oral hearing or to submit a Written Submission.
Wessely declined to do either. Instead, he sent what Gibson has described as a
"personal letter not intended for publication" of considerable length to the panel. In late 2007, I approached Dr Gibson with the suggestion that this document should be placed in the public domain since this was a public inquiry and could this be discussed with Prof Wessely. Wessely's response was that he
"...was in agreement with Dr Gibson that the letter should not be released".
A rumour of "UK government funding"
In June 2008, I had cause to contact Dr Hyde for clarification of something I had read on an internet website - a claim that the "UK government" had offered Hyde a considerable sum of funding to set up studies in the UK.
In his response, Dr Hyde told me that:
...what had happened was that at a meeting in Westminster, Dr Gibson had stated that if "we" could set up a program to properly investigate M.E. patients in the UK similar to what [he] did in Canada there was a potential 15,000 pounds sterling that Dr Gibson would try to shepherd through for such a plan and that he had at least one hospital in the UK who had been positive in assisting such a model.
Hyde said that he had replied at the time to Gibson that he could not risk going to the UK on his hope of this matter succeeding. However, if he could raise $1,200,000 in Canada and possibly the USA, independent of the UK, he would go to the UK and hire the research staff if he could obtain medical status and with the help of UK hospital personal work for 2 years to achieve the goal of setting up a proper clinical research system. This would not be easy even then, he told me, since he believed that the UK health system is fragmented and there are many hostile elements to taking this group of patients seriously, particular in some branches of medicine.
He had also told Gibson, he said, that the chance of his raising that kind of funding in Canada (1.2 million) was not very good and that so far this had proved to be true.
I had questioned Gibson's ability to secure the considerable sum of funding that had been quoted in the internet article which had prompted my approaching Hyde for clarification.
In response, Hyde said that he felt I was in part mistaken about the ability of "the Parliament and their various committees" to find such "modest funds as 15 million pounds sterling" [his words]. That he had a very good friend in Canada who had received, he believed, circa 40 million pounds in 2007 from a UK government group to study climate change in the Congo river basin. In those terms, he considered, 15 million pounds to be spent on ill British citizens in the UK was "minimal".
Mmmm.
He said he had told [an ME advocate] and [Gibson] that it was highly unlikely that he would be able to raise these funds and that he would try once again in September [08] to raise the funds but was not expecting miracles and that he hoped I could correct any errors in the M.E. press on this matter.
Invest in ME will know far more about these negotiations between Gibson, Hyde and Hooper than the little that I have gleaned.
I wasn't sorry, to be frank, when Gibson recently announced he was standing down as MP for Norwich North. Even after the "Gibson Report" I never felt he had properly grasped the poltical issues around ME and he was a great one for making vague allusions in the media to having "gathered together the researchers" with never any evidence that there were solid sources of funding to be drawn down for this.
Suzy
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