National ME Observatory: So, who is on the Steering Group?
In March 2006, AfME received a £500,000 grant from the Big Lottery Research Grants Programme. This considerable sum of money has been used by AfME to establish the National ME Observatory.
The March issue of AfME’s InterAction magazine [Issue 59] carried a full page advertisement inviting applications from people with ME who have “an understanding of research processes” to apply for membership of the Steering Group. The Steering Group is said to comprise Action for ME, clinicians, health and social care professionals and people with ME or their carers. It has been formed to “monitor progress and expenditure, to maintain overall supervision of staff employed on the project, to advise on specific issues including necessary changes of direction, as they arise, to plan dissemination of research findings and to prepare detailed reports for the Big Lottery Fund”.
The duties of lay Steering Group members would involve reading scientific papers, monitoring the project and attending quarterly meetings held on a rotation basis in London, Bristol, York and Norwich. A “buddy scheme” was mentioned in order to facilitate the participation of the severely affected who might have difficulties attending meetings, in person – for AfME were keen, they said, to be inclusive of the severely affected.
Issue 61 of AfME’s InterAction magazine carries an update on this three-year project*.
The first meeting of the Observatory Steering Group was scheduled for 15 June with the next meeting scheduled for September.
Following the June meeting of the Board of Trustees of the ME Association, Dr Charles Shepherd published a Summary of the June Board meeting.
Under the heading,
“MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES”
Dr Shepherd had written:
“A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board meeting, the MEA could not, unfortunately, be represented.”
To the best of my knowledge, the ME Association has made no announcement, but it appears from this summary that Dr Charles Shepherd has a seat on the Steering Group of the National Research Observatory.
The InterAction Observatory update article lists the following as having been appointed to the Steering Group:
There is also a Reference Group. The update states that “The Reference Group was put together for two reasons. Firstly, to enable people to comment on papers etc. who, due to the severity of their M.E. are unable to travel to Steering Group meetings. Secondly, because of the overwhelming response received to this project, it gives people who could not be appointed to the Steering Group, a chance to become involved.”
So what happened to the “Buddy Scheme”?
Some further questions:
AfME members have been told that the Steering Group comprises Action for ME, clinicians, health and social care professionals but AfME has failed to disclose to its members just who these individuals and organisations are. Only the names of lay members drawn from the ME patient community, and those applicants who have been shuffled into the Reference Group have been disclosed – apart from one, Ben Brown, who has a seat on both the Management Group and the Reference Group.
1] Have representatives of any other ME/CFS patient organisations been given seats on the Steering Group or the Management Group and if so, which organisations are represented, by whom, and through what process were these seats allocated?
2] Other than any ME patient organisations, what other organisations or individuals (other than those specifically named lay individuals that comprise the Steering and Reference Groups) have been allocated seats on the Steering, Management or any other group or groups that comprise the Observatory Project and through what process were these seats allocated?
3] Why has the ME Association not previously declared Dr Shepherd’s appointment to the Observatory Steering Group?
4] Why has AfME not published a FULL list of the names of all members of the Steering Group, Management Group (including AfME staff and Trustees) and Reference Group and the names of ALL others involved in this Observatory Project, which organisations they represent and their functions within this project.
That is, why have we not been told who the clinicians, health and social care professionals are that are, in effect, the caretakers of this £500,000 of funding?
5] Does AfME intend to disclose a full list of all members of the Steering Group to its members and the wider ME community and when might we anticipate being given this information?
Shades of the AfME/MRC Summit?
The Summit was held in November 2006. ME agenda obtained the complete list of those participating in this Summit under FOI, in December 2006 because, for a second time, AfME had failed to be transparent about who made up this (revised) list of attendees. In April, this year, AfME invited expressions of interest in reserving copies of the Summit Report; we are still waiting for the Report on a Summit which took place 10 months ago, to be published.
Research Observatory update [extract: InterAction article, Page 14-15, Issue 61, September 2007]
*The M.E. Research Observatory is a collaboration between Action for M.E., the University of East Anglia (UEA), Hull-York Medical School and the London School of Hygiene and Tropical Medicine. The M.E. Observatory Research Team Leader is Dr Malu Drachler.
The Observatory aims to produce and support the development of social and epidemiological research which responds to the needs of the M.E. community. There are 14 researchers involved at the University of East Anglia (UEA), three at Hull-York Medical School and two from the London School of Hygiene and Tropical Medicine. It is hoped that in due course, other representatives of the M.E. community and other universities, independent researchers and stakeholders will take part.
In the next three years, the Observatory will conduct six inter-related research studies funded by the National Lottery through Big Lottery Fund. While there are three university-based research teams working on the Observatory, each one is the lead institution for different studies (as indicated below).
The studies will involve:
. interviews with approximately 30 people who have M.E. about the impact their condition has had on their life and what they most need from health and social services (study led by UEA)
. a videotaped consultation of approximately eight people who have M.E. and an interview with their main health and social care professionals about their views on treating people with M.E. (UEA)
. a pilot of a National Disease Register of confirmed cases of M.E./CFS (Hull)
. a description of the occurrence and severity of the illness (London)
. a questionnaire survey on the factors that have an impact on the quality of life of people with M.E. and their carers (London)
. a review of the literature on the needs of people with M.E. and the services for them in England (UEA).
Altogether, the studies aim to:
contribute to finding out how many people are currently living with M.E.; provide sound information on the impact of M.E. on their lives and the lives of their carers; examine what people living with M.E. need most from health and social services; establish what resources are currently available in England to support them. The information is important to improve planning of appropriate services and resources.
In his first months in post, Peter Spencer, Action for M.E.’s new CEO, has taken a keen interest in the Research Observatory. He told InterAction:
“I was involved in selecting new members for the Steering Group. It was very important that we follow our own principles and have patient representation at the heart of this important and exciting FAm research initiative. “We had a wealth of talent from which to choose but eventually narrowed the field down. Six people will join the Steering Group. Their profiles are listed below.”
A seventh, Ben Brown, has joined the Management Group to help me oversee our contractual obligations to the Big Lottery Fund. Ben has a wealth of experience in research and project management.
“A number of people who we were not able to take onto the Steering Group, have agreed to form part of a Reference Group. They will pay a key role in helping to review the research which is being done by the three universities.”
The new members of the Steering Group agreed to supply us with their biographies. What follows are extracts for reasons of space.
Alison Collins: My personal involvement with M.E. began in 2000 when I was diagnosed with the illness after suffering from numerous symptoms including extreme fatigue, throat problems, mobility difficulties and brain fogs. Prior to M.E., I was Sales and Marketing Manager in a biological reagents company distributing US and European products in the UK market. This was often a most demanding role but very interesting as it used my PhD research experience combined with new business skills. Physically, I realise that membership of this steering group will be a challenge however I am determined to participate in something that will be of benefit to myself and fellow M.E. sufferers.
Joanna Doherty: I have had M.E. for about four years. In addition, my sister has suffered from severe M.E. for almost two years. Prior to becoming ill, I was in the middle of a PhD in sensory neuroscience at Oxford (I was finally forced to suspend this indefinitely in early 2006). As well as my interest in science, I was also actively involved in several charities over a number of years, both through (unpaid) managerial positions, such as trustee, and voluntary work with children and vulnerable individuals.
Cecilia Finnerty: M.E. became a part of my life in 1998. Thankfully, I have never been at the severe end of the spectrum: just sufficient to change me from someone who could never sit down to someone who sits down quite a lot actually! I’m interested in complementary therapies – they all seem to advocate a relaxed approach to life – and have qualified as a reflexologist and studied Nutritional Medicine, having found both reflexology and attention to diet helpful in the months following acceptance that M.E. was not going to be a quick process.
Philip Johnson: I am here in the capacity of a carer/buddy – my wife has had M.E. since 2000. She is virtually housebound and leads a very restricted 14 InterAction 61 September 2007 life, though she is recovering slowly now. We have come up against professional ignorance of M.E., suspicion, slow diagnosis, inappropriate advice/medication etc. and experienced the sense of isolation and difficulty in finding competent professionals with the right experience. We had to make judgements about alternative treatments on very little evidence or any hard facts. My background is a BSc (Nottingham) and PhD in Chemistry (Royal Military College of Science). I have research, lecturing and teaching experience. Author of several papers (in proper peer reviewed journals!). I retrained in operational research, joined the permanent Scientific Civil Service and ran research contracts for the Home Office and the Navy as well as conducting internal research as part of a team.
Keith Kahn-Harris: I developed M.E. in 1993, following an infection with the Epstein-Barr virus, but I was not diagnosed until 1996. My health has been up and down in the last 14 years. At times, in particular between 1999 and 2001, I would describe myself as having been 90-95 well. Since a relapse in 2002 I have generally fallen into the category of mild to moderately affected. My wife and I have two young children and I work from home about 50 full-time. After many problems I have organised my life so as to be able to deal with my various commitments without relapsing. I am a sociologist by training. Since completing my undergraduate degree in 1994 I have completed an MA and a PhD in sociology. I have contributed to academic organisations, conferences and journals and following a successful grant application I am now employed part time by Goldsmiths College on a temporary contract. I have also worked on commissioned research projects with a number of non-academic organisations.
Helen Veale: Before seven years ago I enjoyed career, starting out as a local government, and later to become a manager in the NHS then in the Department of Health. Now I’ve given up paid work I am able to pursue more of my interests – walking, cycling, yoga, singing, reading and studying (currently hypnotherapy and NLP). I am a volunteer tutor with the Expert Patient Programme and a member of the St Bart’s Hospital Clinical Network Co-ordinating Committee for M.E. services. As I’m also Mum to two teenage boys, I have to be careful to keep pacing myself so that I don’t overdo things!
The Reference Group was put together for two reasons. Firstly, to enable people to comment on papers etc. who, due to the severity of their M.E. are unable to travel to Steering Group meetings. Secondly, because of the overwhelming response received to this project, it gives people who could not be appointed to the Steering Group, a chance to become involved. Action for M.E. and the National Research Observatory team are pleased to welcome to the Reference Group:
Nicolette Bolgar, Sally Dench, Ciaran Farrell, Sarah Feehan,
Frances Gibson, Sarah Harper, Catherine Hislop, Barbara Hutchison,
Caroline Marr, Caroline Middleton, Erzsebet Toth, Joanna Shackleton,
Angela Bradley, Sasya Morar, Nina Crummy and Ben Brown
Extract from InterAction magazine, Issue 61, September 2007