RSM “Medicine and Me” event: ME and CFS – Hearing the patient’s voice

Note: One of the speakers at this RSM “Medicine and Me” event will be Professor Stephen Holgate, University of Southampton.

Professor Holgate chairs the “CFS/ME multi-disciplinary panel” convened by the MRC, last year. It’s not clear from the RSM event programme whether Professor Holgate is participating in this event on behalf of the MRC and in his capacity as chair of this panel but I would imagine that this is the case.

Professor Holgate is also a member of the MRC’s Physiological Systems and Clinical Sciences Board (PSCSB) and he chairs the MRC Respiratory Research Collaborative.  He is also chair of the CFS Research Foundation’s Research Committee and a member of the James Lind Alliance Strategy and Development Group.

The inaugural meeting of the MRC “CFS/ME multi-disciplinary panel” was held in December 08.  A second meeting took place in March, this year.  But this panel’s Terms of Reference have yet to be agreed and published…

Since 25 April 08, I have had an FOI request lodged with the MRC for a copy of the panel’s Terms of Reference. Further enquiries made of the MRC exactly a year later, on 26 April 09, elicited the following response from Ms Rosa Parker, MRC Corporate Governance and Policy:

“At their second meeting the MRC’s CFS/ME expert group requested further amendment to the terms of reference. The final terms of reference will be published on the MRC’s website once they have been confirmed, as agreed previously we will also send you a copy as soon as they are available.”

I had also asked for the official name of this panel but this enquiry was not addressed – though Ms Parker has referred twice to the panel as the “MRC’s CFS/ME Expert Group” .

On 12 December, last year, I obtained from the MRC, under the FOI Act, a list of panel members and their affiliations. I was advised at the time  that the names of the panel members would be published on the MRC website in due course. Nearly six months later, I have yet to find this information on the MRC’s website. 

For a list of current members of the “CFS/ME multi-disciplinary panel” or “CFS/ME Expert Group” see:

Freedom of Information Request: MRC CFS/ME multi-disciplinary panel members list

For a report by Action for ME (AfME) of the inaugural meeting of the multi-disciplinary panel see:

MRC multi-disciplinary panel “expert panel”: inaugural meeting

 According to Sir Peter Spencer’s report of the first meeting:

“A research collaborative will be formed from interested parties in the UK who have a stake in scientific research into M.E./CFS. The nucleus is the list of those who attended this meeting.  It is envisaged that the group will expand, bringing together medical scientists from a wide range of different disciplines, funding organisations, royal colleges, professional organisations, patient charities and other relevant parties, to agree a common agenda for increasing the scale and quality of research into M.E. in the UK, along the lines of the achievements of the UK Respiratory Research Collaborative…”

No other patient organisations, other than Action for M.E. and the ME Association appear to be having any form of involvement in the business of this panel.

Professor Stephen Holgate’s presentation at this forthcoming RSM event is called “ME: a research orphan for too long”. Given the MRC’s track record for funding research and the length of time it is taking this panel to actually get down to business you can pretty much guarantee that ME will continue a “research orphan” for many years to come…

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Royal Society of Medicine Event in the “Medicine and Me” series

http://www.roysocmed.ac.uk/academ/x2g106.php

Medicine and Me: ME and CFS – Hearing the patient’s voice

Saturday 11 July 2009

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

organised by the Royal Society of Medicine and The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

This ‘Medicine and Me: ME and CFS’ conference is organised jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share experiences, to hear about the latest research and treatment, to discuss treatment choices and access to treatment, and to question the experts on a wide range of issues.

This meeting will focus on the difficulties and delays in diagnosis, ME and CFS in children and adolescents, the existing range of treatments, and the latest research and its impact on the development of new, disease-modifying treatments.

The audience at ‘Medicine and Me’ meetings typically comprises patients, their families, carers and advocates, representing at least 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other health professionals involved in the treatment and care of patients with ME and CFS.

This meeting will be suitable for all those affected by ME and CFS

Registration Details:
Fellow: £50
Associate: £30
Trainee – Fellow: £30
Retired Fellow: £30
Student Members: £20
Non-Fellow: £70
Allied Health Professional: £35
Nurse: £35
Trainee – Non-Fellow: £35
Student: £25
Patient: £10
Carer: £10
CPD: 3 credits

[Registration button]

Agenda:

12.15 pm

Registration and coffee

1.00 pm

Welcome address
Dr David Misselbrook, Dean, RSM & Ms Jane Colby, Executive Director, The Young ME Sufferers Trust

Session One
Chair: Dr Charles Shepherd, ME Association

1.10 pm
Diagnosis: the patient’s perspective
Mr Jez Harding, Jez Harding Consulting Ltd, London

1.25 pm
Patient videos

1.35 pm
A rational, efficient and practical approach to diagnosis
Dr Abhijit Chaudhuri, Essex Centre for Neurosciences

1.50 pm
Questions

1.55 pm
ME in children and adolescents: the patient’s perspective
Miss Shannen Dabson

2.10 pm
Addressing the educational impact of ME
Mr Hardip Begol, Department for Children, Schools and Families, London

2.25 pm
Questions

2.30 pm
Treatment: the patient’s perspective
Ms Annette Barclay

2.50 pm
Treatment- evidence based and pragmatic approaches

Professor Anthony Pinching, Peninsula Medical School

3.05 pm
Questions

3.10 pm
Tea break

Session Two
Chair: Sir Peter Spencer, Action for ME

3.35 pm
Research: what do patients want and why isn’t it happening?

Dr Neil Abbot, ME Research UK and University of Dundee

3.50 pm
ME: a research orphan for too long
Professor Stephen Holgate, University of Southampton

Session Three
Chair: David Misselbrook, Dean, RSM

4.05 pm
Panel discussion
All speakers and Dr Nigel Speight, adviser to ME Association and Professionals Referral Panel, The Young ME Sufferers Trust

4.55 pm
Closing remarks
Mrs Mary-Jane Willows, Association for Young People with ME

Mr Simon Lawrence, The 25% ME Group

Dr David Misselbrook, Dean RSM

5.00 pm
Close of meeting

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