This is a brief summary on a very successful international ME/CFS conference that was held in Pavia, Italy on Friday 26 September 2008.
The University town of Pavia is graced by fine Romanesque and medieval buildings. It lies about 25 miles south of Milan.
The conference was organised by a group of Italian physicians, including immunologist Dr Lorenzo Lorusso (Pavia) and cancer specialist Dr Umberto Tirelli (Aviano). It was open to both health professionals and patients. Financial and administrative support was provided by Italian patient support charities, the Istituto Neurologico in Pavia, the University of Chieti and the University of Pavia.
There was a packed lecture theatre with a webcam transmission to an overflow audience in another room. The strong attendance reflects the growing recognition and interest in ME/CFS in Italy, and it was encouraging to see so many health professionals from all disciplines who were clearly interested in learning more about ME/CFS from both the doctor and patient perspectives.
Those attending were provided with free copies of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ – the MEA purple booklet for health professionals
The morning session consisted of 12 presentations covering diagnostic, management and research aspects. There were also some excellent presentations from patient group representatives. As the morning presentations were all given in Italian, with Italian abstracts, I will not attempt to summarise their content here.
The afternoon session, which was chaired by Dr Derek Pheby (UK) and Dr Umberto Tirelli, consisted of presentations from doctors outside Italy who belong to the EUROMENE network. This session, including much of the Panel discussion, was conducted in English.
Dr Derek Pheby (ME Observatory, UK) spoke about what we know, what we don’t know, and what needs to be done when it comes to the epidemiology of ME/CFS (ie details on how many people have ME/CFS, along with their age, sex etc).
Dr Greta Moorkens (Antwerp, Belgium) spoke about the situation in Belgium and went on to describe some of the research that her group have carried out into the role of magnesium in ME/CFS.
Dr Charles Shepherd (MEA, UK) spoke about the situation in the UK – CMO report, MRC strategy, NICE guideline etc – and summarised some of the patient concerns regarding nomenclature (ie why the term CFS is so disliked by many patients), frustrations over the lack of biomedical research, and the fact that results from clinical trials into CBT and GET are not consistent with patient evidence on these controversial forms of treatment.
Dr Eliana Lacerda (London, UK) spoke about the work of the European Network on ME/CFS.
Dr Luis Nacul (London, UK) spoke about recognition and services for people with ME/CFS in South America.
Dr Modra Murovska (Riga, Latvia) spoke about her research into the role of HHV-6 and HHV-7 (human herpes virus infections) in ME/CFS.
Dr Antoni Fernandez (Barcelona, Spain) spoke on the situation in Spain.
Dr Ruud Vermeulen (Amsterdam, Netherlands), who had been to the recent international fatigue conference in Japan, summarised some of the most recent international research findings, particularly the Gow, Kerr and Vernon studies into gene expression, and how these might lead to new forms of treatment for ME/CFS.
The meeting closed with questions to the Panel. Among topics discussed were the role of vaccinations as trigger factors, genetic factors in ME/CFS, history of the illness, and how patient support charities have worked together with doctors in the UK to move the biomedical research agenda forward.
Overall, this was a productive and stimulating meeting that succeeded in keeping the interest of an audience made up of both doctors (about 70%) and patients (about 30%) – yes it can be done! The decision to spend much of the afternoon session discussing the situation for people with ME/CFS in other parts of Europe was a new departure and we are now looking at how a meeting in London next year could help to continue the European co-operation of doctors who are aligned to the biomedical model of illness.
The conference programme can be accessed via this page on the MEA website.
Report prepared by Dr Charles Shepherd