Prof Stephen Holgate on the UK CFS/M.E. Research Collaborative (CMRC) Conference, September 2014
Why is the CMRC holding this conference?
“The aim of this particular conference is to increase collaboration and research in CFS/M.E. This is why we have invited researchers
currently working in CFS/M.E., as well as those working in related fields (eg.pain) to attend.
“The conference will be a mixture of lectures and workshops and we hope that by bringing established and new researchers together, the conference will be an excellent opportunity to build on current CFS/M.E. research programmes and develop new ones.
“We are excited by the level of interest and the number of international and national researchers attending this conference. We are particularly pleased that it is attracting researchers from outside the CFS/M.E. field, which we believe will grow research in this area.”
If this is for researchers, why do you have a patient session?
“The aim of the patient session is to increase CFS/M.E. research and to try and deal with some of the blocks that are preventing research. For example, researchers have told us that they want to understand more about what is and isn’t possible in CFS/M.E. research. Questions include: what sort of biomedical tests would be possible and how many questionnaires can a patient with CFS/M.E. complete?
“In addition, we think research would benefit if more patients were actively involved in research, helping design research trials and studies. People with CFS/M.E. have also told us they want to be more actively involved in research and help shape and drive research forward.
This has been very successful in other areas such as Multiple Sclerosis and we would like to learn from this.”
What will the patient session look and feel like?
“The session will be led by experienced facilitator Sally Crowe, who has worked in the M.E. field for a number of years. It will be run as a workshop to discuss some of the questions I have already mentioned, and also how researchers can work with the wider community to improve research.
Sally is working with a sub-group of Action for M.E.’s Patient Reference Group to plan and design the session to ensure that it offers a meaningful form of engagement for all participants.
“After the workshop element, international researchers and MRC-funded researchers attending the conference will give a brief presentation on their research. There will then be an informal session where those attending can meet researchers.”
As non-researchers, are people with M.E. able to attend the other research sessions?
“We think the best way to increase collaboration and research at the moment is if researchers can present unpublished and early results.
They can only do this in closed meetings as if unpublished data gets out in to the public, they will not be able to publish their research.
“We have therefore decided that the research meetings will only be open to active researchers.”
How will people find out about what is presented in the research sessions?
“Updates from the research sessions will be
tweeted and summaries posted in Action for M.E.’s
Online M.E. Centre as soon as possible; abstracts from poster sessions will also be available.
“With the help of Simon McGrath (who writes science articles for a number of M.E. charities and forums), Action for M.E. will produce a conference report which will be shared as widely as possible soon after the event, online and in print.
“We will ask all researchers to let us know when their research is published and wherever possible, we will ensure that associate members will have access to the published papers.”
http://www.actionforme.org.uk/Resources/Action for ME/Documents/research/holgate-cmrc-conference-2014.pdf