The AfME Research Summit and the list they did not want us to see

The AfME Research Summit and the list they did not want us to see…

The joint AfME MRC Research Summit, first scheduled for April 2006 but postponed following representations from outraged campaigning groups and patients, finally took place last November.

The list of invitees for the original Summit – a line-up of researchers and clinicians with backgrounds predominately in psychiatry and psychology was leaked to the ONE CLICK Group in late 2005. The list included names like White, Sharpe, Chalder, Weardon, Garralda, Morriss, Reid and Creed and read like the boarding list for the 2002 psych jolly to the island paradise of Rarotonga.

[See ONE CLICK’s write up of the brouhaha surrounding this Psych Fest and for a list of the original invitees].

We use the word “leaked” without reservation since AfME had guarded the identities of those who had been invited to attend these events as if this Summit had been convened not by the MRC, but by MI5. In the annals of ME charity history, AfME’s reluctance to cough up with a list of just who did attend this bash is eclipsed only by the cephalopodan grip the ME Association maintains on its own Membership Register.

On 8 November, on the eve of the Summit, as attendees were gathering for a pre Workshop dinner, we contacted Heather Walker of AfME and asked for a copy of the Agenda for the Workshops and a list of all those who would be participating in the Summit. We received no response.

On 15 November, Ms Walker finally replied saying that she was not a Freedom of Information expert and that she was not sure if releasing people’s names without their permission would put AfME in contravention of the Data Protection Act; that she had contacted the MRC as AfME’s co-organisers and that they would be in touch to answer our enquiry.

Given the experiences of others before us who had failed to obtain this information and in anticipation that we would likely as not meet with similar resistance, we had taken the precaution of simultaneously putting in a request to the MRC for copies of this material under the Freedom of Information Act when we first wrote to Ms Walker.

On 6 December 2006, much to our satisfaction, we received PDF copies of the Summit Agenda and the List of Attendees from the MRC’s Information Analyst – material which AfME could have released, themselves, had they been of a mind to. Why was it necessary to obtain basic information like this under Freedom of Information?

But that was all we were given – just a list of names. No specialities or job titles or the names of the establishments where these individuals were employed and no titles, either, like Dr or Professor, to assist us with identification.

So although some of the names were already very familiar to us from the psychology departments of King’s College London, University of Manchester and Royal Liverpool University Hospital and we recognised a number of others from the footnotes of psychological research papers, it took us quite some time to establish just who all these people are, what they do and where they do it. We list them all below, with apologies for any cases of mistaken identity.

In early November 2006, under the banner of “Supporting biomedical research into M.E.”, AfME had sent out letters signed by AfME’s President, Claire Francis, asking for funds to kick start “biomedical pilot studies […] projects which will have a real chance of being developed into quality research proposals for submission to the Medical Research Council […] We need whatever money you can afford to give.”

Nowhere did it mention in this letter that this Summit was a joint venture between AfME and the MRC and no list of any of those attending or presenting at this Workshop was included.

In September 2006, AfME had announced, “As far as we know, this will be the first time that neurologists, immunologists, pain and sleep disorder specialists, epidemiological psychiatrists, pathophysiologists and others will work together to explore innovative ways of tackling ME”.

If this Workshop had been organised to knock around ideas for biomedical research into ME/CFS, how come so many psychiatrists and psychologists were invited and who was responsible for drawing up the invitation list and on what basis?

This letter was also being sent out to AfME members whose memberships had lapsed. Some of these lapsed members would not have received the last few issues of AfME’s InterAction magazine and would have known very little about this Summit – and if they weren’t plugged into the ME online community many would not have been aware of the debacle which had taken place over the drawing up of the original guest list for this event and the reasons why the first Summit Workshop was postponed.

So, not only were AfME not willing to disclose their first list, they were reluctant to disclose the second, as well, or include a list of those involved in this research workshop project with the appeal they put out to their members for donations and AfME had no compunction about contacting lapsed members, many of whom will be struggling financially, with a hand stretched out for money for an AfME/MRC “pig in a poke”.

In Issue 59 [March 2007] of InterAction magazine there was an update on the Research Summit on Page 11. AfME wrote:

“A conference report is being produced, outlining the presentations and outcomes of the ME/CFS Research Summit which was organised by Action for ME in association with the Medical Research Council (MRC) in November. Scientists and clinicians who attended the event have been developing and writing up the proposals which came out of brainstorming sessions held as part of the programme. Proposals will be put to a Research Advisory Panel, which is being set up for the purpose. Action for ME hopes to fund a number of pilot projects which, we hope, will lead to new biomedical research. A virtual network of researchers who attended the Summit has also been established, to facilitate further discussion and interdisciplinary networking. For further information about the Summit see p2 of InterAction 58 (December 2006) or go to our website at http://www.afme.org.uk To reserve a copy of the conference report, please contact Chloe Stirk. Telephone 0117 930 1322 or e-mail chloe.stirk@afme.org.uk

We suggested at the time that readers got their names down for a copy. On 2 April, I wrote to AfME and registered my interest in receiving a copy of the Summit Conference Report; that was over six months ago, and still this report has not been published!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

List of Attendees

[Disclaimer: The list of Attendees as supplied to us 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 ourselves; 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. We 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.]

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]

11 October 2007

A version of this commentary was originally published by Suzy Chapman & Ciaran Farrell in April 2007

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