MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009
The Medical Research Council’s Expert Group Workshop on ME/CFS Research took place on Thursday 19 November and Friday 20 November at Heythrop Park, Oxford. Around 30 researchers and clinicians from various disciplines, plus MRC staff, took part.
Besides those with existing expertise in this area, there were others present who were new to the subject and consequently brought fresh thinking to the issues and questions being discussed.
PRESENTATION SUMMARIES AND SLIDES
The MRC will be publishing summaries and slides from all the main presentations that were given – once this information has been checked and approved by those who gave the presentations.
I understand that the MRC will also be publishing a full list of everyone who attended this meeting.
The MEA website will carry a suitable link in our news box when all this information appears on the MRC website.
There were presentations followed by discussions on the following key topics on the first day:
- Epidemiology and clinical phenotyping – Dr Esther Crawley
- Autonomic dysfunction – Professor Julia Newton
- Sleep – Professor Jim Horne
- Pain – Professor Maria Fitzgerald
- Neuropsychology – Professor Gijs Bleijenberg
- Neuroimaging – Professor Phil Cowen
- New technologies – Professor Chris Ponting
- Immune system dysregulation and infection – Professor Tony Pinching
- Virology – Professor Paul Moss
Although not covered by specific presentations, a number of other topics – including muscle abnormalities, mitochondrial dysfunction, post-mortem and tissue bank research – were referred to, along with the way in which patients under the ME/CFS umbrella should be defined and selected to take part in research studies.
The second day consisted of group discussions which considered the following topics:
- capitalising on current issues and UK strengths in the area of ME/CFS research
- the use of new technologies
- partnership models
- research prioritisation
Each group then reported back to facilitate a whole group discussion.
The meeting closed with a summing up and an explanation of the next steps forward from Professor Stephen Holgate, Chair of the MRC Expert Group.
Background information provided by the MRC included a 351-page literature review of the current state of ME/CFS research and paper copies of the XMRV paper from Science.
The MEA provided copies of the latest edition (October 2009) of our guidelines – ME/CFS/PVFS – An Exploration of the Key Clinical Issues –on research, clinical assessment and management.
INFECTION AND XMRV:
There was a great deal of lively discussion relating to all aspects of XMRV infection – ie existing research findings; replication of the preliminary results from research groups both here and abroad; implications for blood donation; possible pathogenicity of the XMRV infection; future research priorities – during the formal sessions, over dinner, and well into the night on Thursday. We were fortunate in having four researchers present who are all involved with taking this research forward and are well aware of what is happening both here and abroad.
It was made clear to all the researchers present who are involved in retroviral work that the MEA Ramsay Research Fund has money available if this is required urgently to help fund any immediate or short term funding requirement. The MEA is also very willing to look at more major grant proposals relating to XMRV.A link to the latest MEA summary on XMRV can be found on the home page of the MEA website and we will be updating this information later in the week. The website also has details of our exchange of correspondence with Sir Liam Donaldson, Chief Medical Officer, on the subject of blood donation.
The All Party Parliamentary Group on ME has XMRV on the agenda when it meets at the House of Commons on Wednesday 2 December. The Rt Hon Mike O’Brien, Minister of State (Health Services) at the Department of Health, will be present to deal with the main item on the agenda: the APPG Inquiry into NHS Services for people with ME/CFS. This meeting is open to the public – more details re time and venue can be found on the MEA website. If you are intending to come to the meeting please check the MEA website the day before because the House of Commons venue can change at short notice. And do allow at least 30 minutes from arriving at the House of Commons to get through security and find directions the right room.
The Countess of Mar’s Forward ME Group also has research on the agenda when they meet on Tuesday 24 November at the House of Lords.
The MRC workshop also discussed other infections, in particular herpes virus infections, that have been implicated in ME/CFS.
AUTONOMIC DYSFUNCTION: PROFESSOR JULIA NEWTON
Professor Julia Newton and her team at the University of Newcastle, who are working on autonomic dysfunction in ME/CFS, have just had a new paper published in the European Journal of Clinical Investigation. The paper describes an interesting practical approach to the management of symptoms relating to orthostatic intolerance. Ref: Sutcliffe K et al. Home orthostatic training in chronic fatigue syndrome – a randomised placebo-controlled feasibility study. EJCI, November 12 2009. If we can obtain an abstract of this EJCI paper it will be placed on the MEA website news box. The MEA Ramsay Research Fund is currently funding another study at the University of Newcastle to examine muscle energy metabolism in ME/CFS patients. More information can be found in the research section of the MEA website.
MRC: NEXT STEP FORWARD
There are a number of ways in which the MRC can help with a research agenda, in addition to providing finance for good new research proposals. So the next step forward in relation to ME/CFS will be for the MRC Expert Group to meet early in 2010 to discuss the content of this research workshop, along with the conclusions and recommendations that were produced during further discussion on defining research strengths and priorities on the second day.
On a personal note I would like to add that while I have been extremely critical of the MRC in the past I believe that Professor Stephen Holgate, who is leading this ME/CFS initiative, is genuinely determined to take forward the biomedical research that the patient population, along with many doctors and researchers, believes is so vital if we are going to find effective forms of management for ME/CFS.
Membership of MRC Expert Group on ME/CFS Research
Professor Stephen Holgate (Chairman)
Professor Jill Belch
Professor Philip Cowen
Dr Esther Crawley
Professor Malcolm Jackson
Dr Jonathan Kerr
Professor Ian Kimber
Professor Hugh Perry
Dr Derek Pheby
Professor Anthony Pinching
Dr Charles Shepherd
Sir Peter Spencer
Dr Rob Buckle (MRC)
Dr Joanna Latimer (MRC)
Dr Charles Shepherd
Hon Medical Adviser, ME Association
23 November 2009