List of Participants MRC Research Workshop, Literature Review and notes from CS

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Received, today, from MRC Corporate Information and Policy under FOI:

Shortlink: http://wp.me/p5foE-2q2

PDF: participant list November 2009 (2) [Locked PDF]

23 November 2009

Please find attached a copy of the participants list for the workshop, as promised. This is also available on the MRC website at:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

Yours sincerely

Rosa Parker

Rosa Parker | Corporate Information and Policy


Medical Research Council

20 Park Crescent

London

W1B 1AL



http://www.mrc.ac.uk/Ourresearch/ResearchFocus/CFSME/index.htm

MRC CFS/ME Research Workshop

The MRC held a small research workshop for CFS/ME on the 19 and 20th November 2009. The agenda, papers and meeting participants can be found at the links below

Agenda: MRC CFS/ME Research Workshop

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006511

List of participants of the MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

[PDF Format] CFSME Literature Review Jan 2004 Jun 2009[1] [3MB]

Papers circulated prior to the meeting:

CFS/ME Literature review Jan 2004 June 2009

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

Note of the Workshop to follow



[Ed: Note this is an unofficial note of the procedings prepared by Dr Charles Shepherd MEA, not the official MRC note of the Workshop.]

MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009
Monday, 23 November 2009 16:42

The Medical Research Councils 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.

PRESENTATIONS
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


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 OBrien, 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 Mars 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.

Personal note

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
 

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The PDF that was supplied to me this afternoon by Ms Parker, MRC Corporate Information and Policy, is a locked PDF, so I can't reproduce the List of Participants without typing it out [ go here to open PDF: http://wp.me/p5foE-2q2 ] but amongst the list of invitees to the Workshop were:

Professor Trudie Chalder (King's College London) and
Professor Rona Moss-Morris (U of Southampton)*


Meanwhile on planet Shepherd:

Personal note

"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."


...and so the CFS/ME Expert Group invites Chalder and Moss-Morris to its Research Workshop...aarrrrrggggghhhh!!!!!!!!!!!!!


*Here is UK based Rona Moss Morris selling CBT to the US:

Video of presentation by Prof Rona Moss Morris to School of Nursing, University of Wisconsin

http://videos.med.wisc.edu/videoInfo.php?videoid=806

Medically Unexplained Symptoms: Medicine’s Dirty Little Secret

Rona Moss Morris
Professor of Health Psychology, University of Southampton UK

October 2007, 46 minutes

“Rona Moss Morris, PhD, describes her program of research to enhance coping with symptoms for individuals with chronic fatigue syndrome and irritable bowel syndrome using a model of self-regulation and cognitive behavioral therapy.”

------------

This is the list of attendees at the 2006

Action for ME/MRC CFS/ME Research Summit Workshop
9 November 2006**


Attendees

Abhijit Chaudhuri [Dr. Consultant Neurologist, Essex Centre of Neurological Science]
Basant Puri [Professor. Senior Lecturer and Honorary Consultant, MRC Clinical Sciences Centre, Hammersmith Hospital, Imperial College School of Medicine]
Bill Reeves [Dr. William Reeves, in charge of CFIDS research at the CDC, USA]
Birgitta Evengard [Dr. Specialist in infectious diseases and clinical immunology]
Colin Blakemore [Professor. At the time, Chief Executive, MRC]
Derek Pheby [Dr. Applied Epidemiology, Project Co-ordinator, AfME National M.E. Research Observatory]
Douglas Badenoch [PRIME - Minervation, also moderator of PRIME's internet forums]
Elaine Weatherley-Jones [Chartered Psychologist, Sheffield]
Elena Garralda [Professor in Child and Adolescent Psychiatry, Imperial College, London]
Esther Crawley [Dr. Paediatric Consultant, Royal United Hospital, Bath, member of NICE Guideline Development Group]
Francis Creed [Professor of Psychological Medicine, School of Psychiatry & Behavioural Sciences, University of Manchester]
Heather Walker [AfME]
Hugo Critchley [Professor, Neuroscientist, Chair in Psychiatry Brighton and Sussex Medical School]
Irene Tracey [Human Anatomy and Genetics Department Centre, Oxford University]
Jane Turner [Facilitator]
Jim Horne [Professor of Psychophysiology, Loughborough University]
John Gow [Dr. Senior Lecturer in Clinical Neuroscience, Glasgow]
Jonathan Kerr [Dr. Honorary Senior Lecturer, Imperial College, London]
Julia Newton [Dr. Clinical Senior Lecturer/Consultant NHS Consultant Physician with an interest in Care of the Elderly at the Newcastle Hospitals NHS Trust and Honorary Clinical Senior Lecturer, University of Newcastle.
Kam Bhui [Professor. Lecturer, Department of Psychiatry, Professor of Cultural Psychology and Epidemiology, St Barts and the London Medical School, Queen Mary's University of London]
Kirstie Haywood [PRIME]
Leslie J Findley [Dr. Consultant neurologist and clinical lead at the Essex Neurosciences Unit, Oldchurch Hospital]
Luis Nacul [Dr. Lecturer in social medicine London School of Hygiene and Tropical Medicine also AfME M.E. Research Observatory]
Malu Drachler [Dr. University of East Anglia, School of Allied Health Professions also Principal Investigator, AfME M.E. Research Observatory]
Mary Jane Willows [CEO AYME]
Matthew Bridge [to be confirmed]
Meirion Llewelyn [Dr. Consultant Physician in General Medicine/ Infectious Diseases, Royal Gwent Hospital, Newport]
Mike Davies [to be confirmed]
Nancy Klimas [Professor of Medicine and director of the Chronic Fatigue Syndrome research center, University of Miami School of Medicine]
Peter Fleming [Professor of Infant Health, University of Bristol]
Peter White [Professor, Psychiatrist, Department of Psychological Medicine, St Bartholomew's Hospital also Leader of the PACE trial]
Richard Morriss [Dr. Psychologist, Department of Psychiatry, Royal Liverpool University Hospital.]
Sally Crowe [PRIME]
Samuele Marcora [School of Sport, Health and Exercise Sciences, University of Wales-Bangor, Gwynedd]
Sara Brooks [AfME]
Sarah Perkins [MRC]
Sarah Peters [Dr. University of Manchester Senior Lecturer School of Psychological Sciences]
Shahrad Taheri [Dr. Lecturer in Medicine and Endocrinology, Bristol University]
Simon Wilde [to be confirmed]
Stephen Reid [Academic Department of Psychological Medicine, King's College, Clinical research fellow, Guy's, Kings, and St Thomas's School of Medicine and Institute of Psychiatry]
Trish Taylor [At the time, Acting CEO, AfME]
Trudie Chalder [Professor, former Mental Health Nurse, Kings College London]

**[Disclaimer: The list of Attendees as supplied to me by the Medical Research Council under MRC FOI request No: AF10018E on 6 December 2006 was provided as a list of names only, for example, Peter White, Trudie Chalder, Elena Garralda. Some of these names were incorrectly spelled. Additional information in square brackets was sourced by me; it wasn't possible to identify the establishments for which all attendees worked, their job titles or the capacities in which they had attended the Summit. I accept no liability for the accuracy or up-to-dateness of this additional information or for any errors or omissions. Please refer any enquiries to AfME or to the MRC.]

-----------

Here you can download a PDF of the MRC Workshop of 2003:

Report of MRC CFS/ME research workshop on Epidemiology held on 10th September 2003.

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC003411
 

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Participant list in plain text

The converted to text list as supplied to me yesterday contained errors. This is the corrected version:

MRC CFS/ME Research Workshop

19th and 20th November 2009

Participant list


Dr Neil Abbot - ME Research UK

Professor Jangu Banatvala - King's College London

Dr Kate Bishop - National Institute for Medical Research

Dr Gijs Bleijenberg - Radbound University

Professor Tim Cawston - University of Newcastle

Professor Trudie Chalder - King's College London

Dr Charlotte Clark - Barts and the London

Professor Philip Cowen - University of Oxford

Dr Esther Crawley - University of Bristol

Professor Maria Fitzgerald - University College London

Dr Suzanne Hagan - Glasgow Caledonian University

Dr Kirstie Haywood - University of Warwick

Professor Stephen Holgate - University of Southampton

Professor Jim Horne - University of Loughborough

Dr Jonathan Kerr - St George's University of London

Professor Paul Little - University of Southampton

Dr Samuele Marcora - Bangor University

Professor Chris Mathias - Imperial College London

Professor Paul Moss - University of Birmingham

Professor Rona Moss-Morris - University of Southampton

Dr Luis Nacul - London School of Hygiene and Tropical Medicine

Professor Julia Newton - University of Newcastle

Dr Derek Pheby - ME Observatory

Professor Anthony Pinching - Peninsula Medical School

Professor Chris Ponting - MRC Functional Genomics Unit

Professor Alan Rickinson - University of Birmingham

Dr Charles Shepherd - ME Association

Dr Vance Spence - ME Research UK

Sir Peter Spencer - Action for ME

Dr Jonathan Stoye - National Institute for Medical Research

Professor Chris Ward - University of Nottingham

Professor Peter White - Barts and the London

Mary-Jane Willow - Association of Young People with ME

MRC Head office Staff

Dr Rob Buckle
Dr Jo Latimer
 

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...meanwhile, Dr Charles Shepherd is calling for the Fukuda Criteria to be used in the UK for XMRV studies and not the more rigorous Canadian Criteria.

Extract from: XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DONT WE KNOW? (VERSION 3) (04.11.09)

http://www.meassociation.org.uk

There is an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.

In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.


Why is the MEA not recommending use of the more rigorous Canadian Criteria for XMRV replication studies?

Well, several years ago the MEA held a formal postal ballot amongst its membership to vote for or against a proposal that the MEA should adopt the Canadian Criteria. Cases for and against adoption were published in the MEAs magazine, ME Essential, with Dr Shepherd presenting the case against adoption. Of the very small percentage of the membership that returned a vote, the majority vote was in favour of adoption.

The MEA announced the adoption in principle of the Canadian Criteria, then deftly kicked the Canadian Criteria under the carpet.

I suspect that in three years time the MRC will still be holding meetings and will still be holding Workshops to discuss "high quality research" into ME and CFS; I also predict that Professor Chalder and Moss-Morris' bums will still be firmly parked on the hotel conference room chairs...
 

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<snip>

Sure there are going to be some people in the Fukuda cohort who meet the Canadian criteria, but why start out on the back foot like this? The ME Association has made a commitment to the Canadian criteria so they need to follow it through. They need to demand that researchers select patients with the classic ME/CFS symptoms described in the Canadian criteria, and if that takes more time or more money, so what? Slow, high quality research is always going to trump fast, poor quality research. They should demand quality no matter how long it takes to get it.

I'm disappointed in Dr Shepherd.
Quite so, catch, but the fact is, the MEA (whose policies, position and direction are largely driven by Shepherd) is not committed to the Canadian Criteria and Shepherd continues to argue against its use, despite the views of its membership.

The membership ballot for the proposal that the MEA should adopt the Canadian Criteria took place in 2006. I would think that if the ballot were rerun, today, in late 2009, a significantly larger percentage of the membership would vote in favour of adoption.

(I might run a poll on this issue on my WordPress site.)

When the MEA put the case for and against adoption of the Canadian Criteria in ME Essential no medical professionals were invited to present the case in favour - which was viewed at the time to have given undue weight to Dr Shepherd's views.

In the next few days, I shall be putting together an FOI for University College London for information on the criteria to be used for the UCL Prof Towers PhD XMRV project, and how and from what source(s) and by whom, patient groups are to be recruited for part of this proposed project.

(See: http://www.findaphd.com/search/showp...rojectid=18971 )


By the way, according to Stephen Ralph (MEActionUK website and MEActionUK Yahoo Group) he asked Dr Shepherd, some time ago, if he or the MEA were going to be doing anything about the CISSD DSM-V, ICD-11 agenda. Stephen Ralph reports that Dr Shepherd said he was too busy and that it wasnt on his list of things to do...

Given that the MEA formerly changed its name to the "Myalgic encephalopathy Association" some years ago and given that "Myalgic encephalopathy" has no ICD-10 classification, a position statement on the MEA's recommendations for the future ICD-11 codings (technical work on revision needs to be completed by 2012) would be appropriate. Proposal forms for ICD Chapter V and Chapter VI are due shortly and the membership of the MEA and the wider ME community needs to know how the MEA board stands on this issue, whether they are intending to submit proposals at this stage in the revision process, and whether and when they intend to consult their membership on this issue.

There were some useful names on the Workshop Participant list - I don't know whether I shall have time to profile them all - but if I do, I'll post profiles here.

It was good to see that Dr Jonathan Stoye, Co-author of PERSPECTIVES article: Virology A New Virus for Old Diseases? John M. Coffin and Jonathan P. Stoye (23 October 2009) Science 326 (5952), 530. [DOI: 10.1126/science.1181349] was able to attend this Workshop.


According to the ME Association unofficial note of the MRC CFS/ME Research Workshop (see: http://tinyurl.com/MEAonMRCWS ):

"...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."

I'm not hopeful that anything much will come out of this latest workshop (which is the third such event). The MRC has been talking about quality research into ME and CFS since 2003...but has yet to put its money where its mouth is.
 

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CFS/ME Literature review Jan 2004 June 2009

ME agenda's 1st post in this thread about the UK's Medical Research Council (MRC) small research workshop for CFS/ME on the 19 and 20th November 2009 includes a link to a CFS/ME Literature review Jan 2004 June 2009, which was distributed before the meeting.

It seems it would be a useful resource. I couldn't find a table of contents. I'll put it on my list of projects I want to do, Of course, I would be happy to cross it off that long list should anyone else do it first.