A summary of the key issues discussed at The ME Association Board of Trustees meeting held on 16 June 2007 can be read here
The summary contains a reference to Dr Ian Gibson, MP’s proposed launching of an Early Day Motion (EDM) based on the Report of the Group on Scientific Research into ME. Dr Gibson had chaired the committee which had undertaken to carry out this unofficial “inquiry” and to publish this unofficial document, known colloquially, as the Gibson Report. The GSRME disbanded in May as half the committee had lost interest in attending meetings and in taking the project forward.
Dr Gibson had suspended a proposed multi-clause EDM in March, stating that he was not prepared to submit an EDM which, he claimed, might be subject to ‘a counter-campaign’. In fact, the concerns were that the GSRME had failed to properly consult over the content of this EDM and that the EDM would be calling on MPs to welcome (and thereby endorse) a flawed report.
Now that the GSRME committee has disbanded, none of the factual inaccuracies, omissions and ambiguities contained within this document can be corrected and the document remains unfit for purpose, despite calls from the ME charities, campaigning groups and individuals that the GSRME should make amendments to its report.
Since the GSRME committee can no longer function, the Gibson Office has suggested that responsibility for any EDM based on its report should now devolve to the APPG on ME.
According to Dr Charles Shepherd (who compiles these informal summaries of the Association’s board meetings): ‘It seems likely that the Early Day Motion (EDM) that was drafted by Dr Ian Gibson will now be taken forward by the APPG – possible content of a revised version, including reference to the NICE guideline on ME/CFS, will be discussed at the next APPG meeting in July.’
It is expected, then, that discussion of a further revision might be listed on the Agenda for the July meeting of the APPG but since the Agenda is likely to be a very full one and given that the July meeting is also the group’s AGM, it doesn’t seem very likely that there is going to be very much time to spare for discussing this issue.
The ME community has still not been consulted about the content and wording of any EDM which might now be laid down by the APPG. Nor has any means by which any form of consultation and discussion might take place been mooted, other than amongst those attending these very time-pressed APPG meetings, or how any decision might be arrived at via the APPG. Once again, the ME community has been marginalised from having an input into what this EDM should actually call for.
It is worth noting that neither of the versions proposed to date include the term WHO ICD-10 G93.3 or call for the adoption and implementation of the Canadian Guidelines, per se.
At the APPG meeting scheduled for July, will Dr Shepherd bring with him a revised version of an EDM, complete with reference to the NICE guidelines and attempt to get this rubber-stamped by the APPG or does the APPG intend to carry out some form of wider consultation and if so, how will it set about this?
For the record:
Version One: The version of the EDM as it stood at the APPG on ME meeting on 22 February and as published on 14 April by the MEA, in the March/April issue of ME Essential magazine
This House recognises myalgic encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS;
welcomes the Group on Scientific Research into ME’s Report ‘Inquiry into the status of CFS/M.E and research into causes and treatment’;
notes the Department of Health classification of ME as a neurological condition;
calls on all government departments to accept this definition;
calls for the implementation of internationally recognised clinical and research criteria which reflect the Department of Health classification, similar to the guidelines used in Canada;
calls for the collation of national epidemiological data of ME patients based on this criteria;
calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research;
calls for massive further research into potential aetiology and treatments of ME.
Version Two: The revised version of the EDM as it stood at 6 March and at the point at which it was suspended by Dr Gibson
That this House recognises Myalgic Encephalomyelitis (M.E.) as a serious, long-term, debilitating illness, that affects more people in the UK than HIV/AIDS;
welcomes the Group of Scientific Research into ME’s Report “Inquiry into the status of CFS/M.E. and research into causes and treatment’;
notes the World Health Organisation classification of M.E. as a neurological condition/disorder;
calls on all government departments to accept the WHO classification;
calls for the implementation of international recognised clinical and research criteria, consistent with the Canadian Guidelines, which reflect the WHO classification;
calls for the collation of national epidemiological data of M.E, patients based on this criteria;
calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research;
and calls for a properly funded and co-ordinated research programme into the potential causes and treatments of ME.
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