With the death of Dr Ian Gibson it woudl seem an appropriate moment to recall the treatment and research recommendations contained within the Group on Scientific Research into ME Report (Gibson Parliamentary Inquiry). The terms of reference for the Group was “to assess the progress of scientific research on ME, since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002″.
ME Research UK’s Chairman (Dr Vance Spence) and Research Director (Dr Neil Abbot) gave evidence to the Inquiry in 2006 and a summary of their evidence can be found here.
Treatment Centres
The 2002 Chief Medical Officers Working Group Report on CFS/ME was hoped to signal a landmark change in the perception and treatment of CFS/ME in this country. It identified a number of areas for improvement and made a number of recommendations. The Government ring-fenced £8.5 million for ME/CFS treatment centres with a commitment to continue allocated funding after 2007. A proportion of the ring- fenced funds were used to establish 13 new ME/CFS treatment centres across England.
The Gibson Report welcomed the establishment of these centres and hoped they would not only be maintained but rolled out nationally.
However, there is clearly a need for research into causation, the spectrum of the illness over time, therapeutic interventions and models of care. It is indeed surprising that, given the talent and interest that there is, huge frustration remains in providing funding for research and the different approaches to research. The NICE guidelines must surely recognise the inadequacy of our knowledge in all these areas and indeed we may inhibit discovery and make profound mistakes in the absence of a national, all round research policy…. The existing treatment centres would be ideal places to undertake or initiate large-scale epidemiological research studies of the type the Group feel are vital in this field.
Research
The Gibson Report delved deeply into the research aspects of the disease a having taken both oral and written evidence on it – including from ME Research UK. The Charity’s current Patron, the Countess of Mar, was a member of the Group.
The underlying theme in all or our hearings was the paucity of research into causes. The committee welcomes the recognition of the need to sustain treatment centres. However exactly which treatments should be used on which patients remains disputed. Treatment may change after more research. Provision of resources for biomedical research is urgently needed. The committee would like to see a similar arrangement to the AIDS programme funded previously by the MRC.
The Minister indicated to the inquiry that few good biomedical research proposals had been submitted to the MRC in contrast to those for psychosocial research. We have however been told of proposals that have been rejected, with claims of bias against support for this type of research. The MRC should do more to encourage applications for funding into biomedical models of CFS/ME (sic). The CMO’s Working Group report came out in January 2002. Despite paying lip service to the need to advance the understanding of CFS/ME, the MRC itself has confirmed that from April 2003 to date, it has turned down 10 biomedical applications relating to CFS/ME because they considered they were not of high enough scientific standards to compete against the many calls on its funds. These included applications under the headings of pathophysiology, genetics, biomarkers, immunology and neuroimaging. By contrast, since April 2003 the MRC has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain (Professor Francis Creed, Professor K Bhui, Professor Peter White’s PACE trial, Alison Wearden’s FINE trial and Richard Morriss’ study of “medically unexplained symptoms”). These are to be welcomed of course since they are largely concerned with efforts to confirm or refute the nature of different forms of therapy in carefully controlled trials.
However it is important for the MRC to be seen to be balancing this with support for more high quality basic research into potential causes. Biomedical applications in respect of CFS/ME known to have been rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London. It is clear that internationally there have been a number of studies, which have identified clear areas for further research. The MRC should commissions British versions of this research in order to advance possible treatments.
The group were concerned by the MRC CFS/ME Research Advisory Group paper. The Research Advisory Group advocates concentrating research effort on case management and “potential interventions” rather than cause, pathogenesis or means of confirming the diagnosis saying this approach is as appropriate for CFS/ME “as it is in other illnesses” of unknown cause. The Group is concerned that this diverted attention away from the need for more research into causation and diagnosis. The Group feels that CFS/ME cannot be viewed in the same light as other illnesses of unknown cause such as the malignant diseases which can be diagnosed with appropriate existing investigations. The crucial issue with CFS/ME is to identify diagnostic tests for it even before its cause is clarified. Of course you can research the effects of treatment of a proven specific cancer without knowing its cause. The same does not apply to an illness where the diagnosis has not been positively confirmed.
Research Recommendation
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve. It is an illness whose time has certainly come.
