The MEA and the James Lind Alliance

The ME Association and the James Lind Alliance

In a previous entry, I reported that Professor Stephen Holgate, chair of the MRC’s new CFS/ME “multi-disciplinary panel”, is a Member of the James Lind Alliance Strategy and Development Group, 2008.

The James Lind Alliance was co-founded in April 2004 by Dr John Scadding, Dean of the RSM and Dr Scadding remains a Member of the JLA Strategy and Development Group.

The co-convenors of the James Lind Alliance were:

INVOLVE
Nick Partridge, Chair, INVOLVE (Consumers in NHS Research) www.invo.org.uk

The Royal Society of Medicine
John Scadding, Associate Dean, Royal Society of Medicine www.rsm.ac.uk

The James Lind Library
Iain Chalmers, Editor, James Lind Library
www.jameslindlibrary.org

For more information about the James Lind Alliance see:

http://www.jameslindlibrary.org/pdf/james_lind_alliance.pdf

http://www.lindalliance.org/  

For a list of members of the James Lind Alliance Strategy and Development Group 2008 see:

https://readmeukevents.wordpress.com/2008/04/25/dr-scadding-and-the-james-lind-alliance-two/

Dr Charles Shepherd, trustee and Honorary Medical Adviser to the ME Association is very enthusiastic about the James Lind Alliance.

Last year, Dr Shepherd attended a number of meetings arranged by the JLA. In the summary of the November ’07 MEA Board of Trustees meeting, he writes:

“The James Lind Alliance aims to:

1 Draw attention to the importance of research agenda that addresses unanswered questions about treatment uncertainties prioritised jointly by patients and clinicians.

2 Promote working partnerships and collaborations between patients and clinicians to identify and promote their shared priorities for therapeutic research.

3 Increase general awareness and understanding of the need to refocus the therapeutic research agenda.

The presentations and discussions involving researchers, patients and medical charity representatives that made up the two meetings held during 2007 covered a lot of ground that is relevant to ME/CFS and were well worth attending.”

and according to an earlier report:

“Trustees agreed to apply for associate membership of the James Lind Alliance – a charity that works to bring patients and researchers together. The James Lind Alliance has arranged several useful research orientated meetings during the year which have been attended by MEA representatives.”

Professor Stephen Holgate’s areas of expertise are listed as asthma, air pollution and allergies, genetics of asthma and allergy, genetics and virus infections (lung). Professor Holgate is an advisor to the government, sits on a number of government scientific and advisory boards, already chairs or is a member of several Medical Research Council committees and sits on numerous scientific advisory boards, including the CFS Research Foundation’s research committee.

See statement from the CFS Research Foundation here:

http://meagenda.wordpress.com/2008/04/27/cfsrf-statement-re-mrc-cfsme-panel/

In addition to Professor Stephen Holgate, with his various interests in ME/CFS (CFS Research Foundation, genetics and now chair of the MRC’s CFS/ME multi-disciplinary panel), Sally Crowe, Director of Crowe Associates is also a member of the James Lind Alliance Strategy and Development Group.

Ms Crowe is Project Consultant to the PRIME (Partnership for ME Research) Project and a member of the PRIME Steering Group. Both Ms Crowe, PRIME, and Douglas Badenoch, Project Manager, Minervation Ltd, hold seats on the AfME National ME Observatory Steering Group*.

According to the May ’07 Guardian article Turning the tables by Sophie Petit-Zeman, in 2007 Ms Crowe was chairing the James Lind Alliance strategy and development group.

At the 2006 NICE: Tackling Health Priorities Annual Conference and Exhibition held at the ICC in Birmingham, Ms Crowe addressed the conference in association with the James Lind Alliance in a session chaired by Dr John Scadding. Ms Crowe and Dr Scadding were joined by speaker Dr Sophie Petit-Zeman. Sophie Petit-Zeman, author and writer for the Guardian, is also Director of Public Dialogue, Association of Medical Research Charities. Dr Petit-Zeman is a member of the James Lind Alliance Strategy and Development Group 2008.

For Sophie Petit-Zeman’s Guardian article see:

http://www.guardian.co.uk/society/2007/may/21/health/

So there are now at least three individuals, Professor Stephen Holgate (MRC multi-disciplinary panel chair, CFSRF research committee), Sally Crowe (PRIME Steering Group, AfME National ME Observatory Steering Group) and now, Dr Charles Shepherd (ME Association, AfME National ME Observatory Steering Group), all with close associations with ME who are attending James Lind Alliance Strategy and Development Group meetings, or inputting into meetings hosted or jointly hosted by the James Lind Alliance.

Disturbing, then, that Dr John Scadding, Chair of the RSM, co-founder of the James Lind Alliance and current member of the James Lind Alliance Strategy and Development Group 2008, gathered around him four psychiatrists to plan the RSM’s “CFS” Conference who proceed to invite themselves and colleagues with whom they have co-authored research papers to be speakers or session chairs at the RSM’s “CFS” Conference, held on 28 April, in Wimpole Street.

In her April 08 commentary, Concerns about the RSM Conference on 28th April 2008 on “CFS” Margaret Williams observes:

“This is all the more pertinent in that it was the same Dr John Scadding who on 17th September 2007 attended a conference in London entitled “Should patients Tell Researchers What To Do? If so, How?” that was arranged by the James Lind Alliance in conjunction with the Association of Medical Research Charities**; the meeting had as its main topic the importance of expert patient input into medical research and how this can best be achieved. It was Dr Scadding who chaired the afternoon Working Group session to establish an effective way of implementing patients’ input.

One question that was put before the panel was: “What would panel members suggest could be done to ensure that major UK funding and other Institutions – like the Medical Research Council, NICE, the Centre for Reviews and Dissemination at York, the National Health Service and the Department of Health – take more notice of what patients say?”. There can be no doubt that this issue was raised and that Dr Scadding was fully aware of the immense concerns amongst ME/CFS patients, so it is all the more disturbing that he has apparently agreed not only to host this controversial conference at the RSM, but that he is also scheduled as a speaker and co-chair of the event. As a result, it is difficult to reconcile his apparent sympathies with patients’ needs to be heeded with his support for and involvement with a conference to promote the psychiatric model of “CFS/ME”.”

**Ed: The Director of Public Dialogue, Association of Medical Research Charities, is Dr Sophie Petit-Zeman.

I have been unable to locate any information on the James Lind Alliance’s website about applications for “associate membership” – only applications for “Affiliation to the James Lind Alliance” here: http://www.lindalliance.org/Affiliate_Membership.asp

or “Working Partnerships” here:
http://www.lindalliance.org/Patient_Clinician_Partnerships.asp

So it’s not clear what type of involvement with the JLA the ME Association is seeking.

Is the ME Association looking to establish a “Working Partnership” or “Patient-Clinician Partnership” with the James Lind Alliance?
See: http://www.lindalliance.org/Patient_Clinician_Partnerships.asp

According to the website, an Asthma Working Partnership (Asthma UK and the British Thoracic Society) has already been set up and a JLA Working Partnership for Urinary Incontinence is currently being established.
See: http://www.lindalliance.org/Working_Partnership_Members.asp

To the best of my knowledge, the ME Association has yet to clarify whether it did proceed with its proposed application for “associate membership” of the James Lind Alliance, whether any application submitted has been accepted and if so, has yet to set out what benefits “associate membership” or affiliation with the James Lind Alliance might have for the MEA’s membership and the ME patient community, in general.

Mindful of the controversy surrounding Dr John Scadding and the Planning Group for the RSM’s “CFS” conference I call on the ME Association to clarify the current status of its own relationship and involvement with the James Lind Alliance.

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*Other than identifying the lay members who have been appointed to the Steering Group, the names of those who have seats on the Steering and Management Groups for the AfME National ME Observatory, have, for the most part, yet to be established, since AfME has failed to place this information in the public domain and has refused to disclose this information to enquirers. The names of the lay members were published in AfME’s “Interaction” magazine.

AfME has also refused to disclose through what process seats were allocated to non lay members or for which organisations these individuals work. Dr Derek Pheby, Project Co-ordinator, has confirmed to me only that Dr Charles Shepherd holds a seat on the Observatory Steering Group. This information has not been disclosed to the National ME Observatory’s Reference Group members, either. It was Douglas Badenoch, Project Manager of Minervation, who confirmed to me that three individuals associated with PRIME had obtained seats – not AfME or Dr Pheby.

The two partner academic institutions, East Anglia, York/Hull, which are involved in the National ME Observatory research projects have claimed in response to an FOI request that they do not hold this information on file. Professor Peter Campion has declared his interest to me, as a Steering Group member.

The Big Lottery Fund who awarded the grant of over £500,000 to AfME confirmed, in late 2007, that they had not been furnished with this information by AfME. AfME were requested by the Big Lottery Fund to provide this information to them by 23 November. It has yet to be established whether AfME complied with this request from its funding body.

Why has AfME been happy to publish the names of the lay members of the ME Observatory Steering Group, together with brief bios and yet refuses to provide the full list of all members of the Steering and Management Groups?

Another example of AfME’s refusal to operate in an open and transparent manner.

For further information see:

Can AfME claim a mandate to represent the patient perspective?

Suzy Chapman

08.05.08

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