Final set of reports from the CMRC conference, organised by Action for ME (see all reports) and written by various people (I wrote the report of Dr Lipkin's presentation, I think Clare Ogden at AfME wrote the rest of the material here). Workshop feedback Prof Stephen Holgate, CMRC Chair Prof Holgate asked participants from each of the previous day’s workshops to share some of the key points that had emerged. Workshop one: Working together for more and better research that benefits people with CFS/ME Facilitated by Sally Crowe See earlier report here Workshop two: Pain Facilitated by Prof Maria Fitzgerald “We had an excellent mix of people in this workshop, including a rheumatologist, a physiotherapist, and the parent of a child with M.E.,” reported Prof Fitzgerald. “We began by thinking what a typical patient question would be if they had pain, and agreed that it would be: why do I have pain, what is it for, when will it go away, and what are going to do to make it better?” The group discussed that it was necessary to move away from current answers to this – ie. you will just have to get used to it – towards measures that can be taken to increase function. The current situation is not helped by NHS constraints which send patients in particular directions. “We need to use our money in two directions,” concluded Prof Fitzgerald. “One is to usefully find out a lot more about pain and CFS/ME, looking for particular types of pain, and the relationship between fatigue and pain. We need to develop new clinical tools, because we can’t have outcomes for clinical trials unless we are confident in what we are measuring. “The second strand, but just as important, is to spend our money on patients who are severely affected. We would start with a small number across the UK, more qualitative but with an attempt at quantitative data, and investigate their pain. We’d have to work with carers and families, and we would use such a study as indicators for the future, to help us create hypotheses.” Workshop three: Sleep and fatigue Facilitated by Dr Sue Wilson This group agreed that sleep problems case a lot of distress in CFS/ME, and that an intervention to improve sleep would be beneficial. Recent reports of the high incidence of co-morbidity of CFS/ME and sleep disorders were also discussed. “We would like more clinicians to know about this and look for it,” said Dr Wilson. “The third key point was that other research councils have repositories for data, and we felt that all our data about people with CFS/ME should be held in something similar, to be accessed by other researchers. We didn’t know if the MRC would be able to do something about that.” Workshop four: What should we measure? Core outcome sets and PROMs Facilitated by Sarah Brookes Everyone in this workshop agreed that what we use to capture the impact of CFS/ME on patients, the heterogeneity of the condition, and particularly the degrees of severity, are inadequate. They explored the process that would needed to be develop some new core outcome sets, an agreed standardised set of measurable, recordable outcomes to be used in all clinical trials in a specific area. There are already tools to help with this process, for example the COMET initiative The group hoped that some of the mechanisms that had been elucidated in CFS/ME, and presented over the course of the conference, would eventually lead to therapeutic trials, hopefully using a set of core outcome measures and patient-reported outcome measures that can be used. Workshop five: Inflammation and infection Facilitated by Prof Hugh Perry This workshop discussed post-mortem tissue – what could be done with patients brains, for example – and how clinical phenotyping was essential if brains were to be examined. It was felt that there was a need for in vivo scanning of patients to try and understand what brain areas should be targeted. They also talked about: · characterising, rather than categorising, patients · the need to still recruit as many patients as possible, but more carefully · inflammation post-vaccination, and whether it would be possible to see what CFS/ME patients’ response would be to that sort of stimulation.