27 November 2009
This is the 2nd of two mailings, today:
1] PDF of Minutes at:
ME agenda site at: http://wp.me/p5foE-2qT
Also available in locked PDF format on the MRC website at:
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006522
Issued: 27 Nov 2009
Primary audience: Researchers
Document Summary
2] TEXT version
MRC CFS/ME Expert Group
Minutes of the 2nd meeting helcTon 30th March 2009
MRC Head Office, 20 Park Crescent, London W1B 1AL
In attendance:
Professor Stephen Holgate (University of Southampton - Chairman)
Professor Philip Cowen (University of Oxford)
Dr Esther Crawley (University of Bristol)
Professor Malcolm Jackson (University of Liverpool)
Dr Jonathan Kerr (St George's University of London)
Professor lan Kimber (University of Manchester)
Professor Hugh Perry (University of Southampton)
Dr Derek Pheby (National CFS/ME Observatory)
Professor Anthony Pinching (Peninsula Medical School)
Dr Charles Shepherd (ME Association)
Sir Peter Spencer (Action for ME)
MRC
Dr Rob Buckle
Dr Joanna Latimer (Secretariat)
1. Chairman's welcome, introduction & apologies
1.1 The Chairman welcomed members to the second meeting of the Group and
thanked everyone for giving up their valuable time to attend. Introductions
were made round the table.
1.2 Apologies had been received from Professor Jill Belch (University of
Dundee) and Professor Peter White (Bart's and the London School of Medicine
and Dentistry).
2. Minutes of the 1st Meeting held on 15th December 2008
2.1 Members approved the minutes from the previous meeting as an accurate
record, though agreed that an addendum be included that outlined the work
of the CFS/ME Clinical and Research Network Collaborative as well as the
work of the National Observatory.
3. Terms of Reference
3.1 The Chairman referred members to the revised draft Terms of Reference.
Following discussions, the Group agreed that the Terms of Reference needed
to incorporate encouragement of new researchers into the field. It was
agreed that revised Terms of Reference would be circulated to members for
final approval.
4. Update on work of CFS/ME charities
4.1 Sir Peter Spencer and Dr Charles Shepherd updated the Group on progress
with the feasibility study for a Post-Mortem Tissue Bank for CFS/ME.
4.2 It was agreed that determining a good clinical phenotype would be key
for the success of the proposed bank. This could be aided through setting
up longitudinal and natural history studies in addition to a tissue
archive. This would be an important area for discussion for the workshop.
5. Discussion on a CFS/ME research workshop
5.1 The Group discussed the format for the research workshop. It was agreed
that this would be a small working event attended by CFS/ME researchers,
researchers from outside the field and representatives from charities
involved in research.
5.2 An overview of current research should be included, and this would be
best achieved by providing the participants with a literature review. A two
day meeting, from lunchtime to lunchtime, would allow sufficient time for
an overview of research in key thematic areas to be presented through short
talks, followed by a second day of discussions by small groups tasked with
identifying research priorities.
5.3 An integrative approach would be important in helping to understand the
causes of CFS/ME, and this should be reflected in the thematic areas
highlighted for the short talks. Thefollowing areas were identified for
these presentations:
. phenotyping and epidemiology
. autonomic dysfunction including cardiovascular dysfunction
. fatigue
. sleep
. pain
. neuropsychology
. imaging
new technologies and technological platforms
. neuroendocrinology
. immune dysregulation
. infection
5.4 It would be important to try and bring in leading experts in the above
areas from outside of the CFS/ME field, and ideally some of the talks
should be presented by such experts. Opening the workshop up to researchers
from other fields should provide an opportunity for new expertise to be
bought in and could, in time, lead to increased engagement from the outside
community.
5.5 Areas for consideration by the discussion groups on the second day of
the workshop should include the following questions:
. how can capacity in the field be increased?
. where are the UK strengths, in the context of international competition,
and how could relevant links be forged?
. are there new technologies and/or technological platforms that could help
move the field forward?
6. Date of next meeting
Members agreed that the next meeting should be held following the workshop.
The secretariat would circulate potential dates in due course.
7. Close
The Chairman thanked members once again for their valuable contributions
and closed the meeting.
[Ends]
Suzy Chapman
_____________________
me.agenda@virgin.net
http://meagenda.wordpress.com
http://twitter.com/MEagenda
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