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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Image | bortescristian Creative Commons

High Court Hearing Countdown

Judicial Review of NICE Guideline for CFS/ME

East Block location maps | http://www.nicemecourt.co.uk

When? | 11th and 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk  

Whom do I contact? | contact@nicemecourt.co.uk

Image FreeFoto.com

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http://www.youtube.com/watch?v=uojoJ07OktE

“Annette Barclay talks about the impending legal challenge to the NICE guidelines on M.E.”

8.17 mins

by GBCOne

Added 4 January 2008

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For information about the Judicial Review and copies of NICE JR related documents by Margaret Williams go to:

http://www.meactionuk.org.uk/nicejr.htm

For a document setting out what a Judicial Review is, what it is not, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance

Supporters’ website:

An unoffical site has been set up for supporters of the NICE CFS/ME Judicial Review, for information and updates for those planning to attend the hearing and for those able to offer assistance with arrangements and publicity. The site can be found at:

http://www.nicemecourt.co.uk/

Please note that ME agenda site and Suzy Chapman have no connection with either of the two legal cases involved in the Judicial Review or with the supporters’ website.  All enquiries about this Judicial Review, including media enquiries, should be directed to the legal firms concerned or to the High Court, as appropriate.  Members of the ME community and their advocates planning to attend the Court hearing or who are able to offer assistance should direct enquiries about arrangements for what is currently scheduled for at least a two day hearing, to the web master of the NICE CFS/ME Judicial Review Supporters’ website.

Previous postings around the NICE Judicial Review are archived under Judicial Review in the Categories list in the left hand sidebar of ME agenda site.

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Let’s hope that 2009 will be the year that sees proper recognition of this illness and of the desperate need for funding biomedical research.

Read ME UK Events and ME agenda sites will remain active over the Christmas and New Year period.  I’d like to thank readers for their support and encouragement over the past twelve months.

Our thoughts are with the Gilderdale Family.

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Saturday 11 July 2009

In AfME’s InterAction magazine, Page 3, CEO’s report, Sir Peter Spencer writes:

“Next year also, patients and carers will be invited to attend the Royal Society of Medicine’s (RSM’s) ‘Medicine and me’ conference on M.E. on Saturday 11 July in London. ‘Medicine and me’ meetings bring together patients, carers, advocates, patient support groups, clinicians and researchers to discuss care and research matters of interest to patients with a specific condition. It will be a great opportunity for face-to-face contact with some of the leading M.E. clinicians and researchers in the land, so I hope those who are well enough will be there. Booking will be essential. Further details will be posted in InterAction, on our website and on the RSM website at www.rsm.ac.uk  

http://www.afme.org.uk

Please note that ‘Medicine and me’ meetings are held for various conditions.

For the format of these meetings see:

http://meagenda.wordpress.com/2008/09/09/update-on-planning-of-rsm-medicine-and-me-conference/

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Stephen Ralph has created a page for all Judicial Review documents and this can be found on a button at the top of the main page of www.meactionuk.org.uk

Alternatively you can find the page directly by clicking on this link:

http://www.meactionuk.org.uk/nicejr.htm

Please note that there is some duplication of documents already published.

Document 1: http://www.meactionuk.org.uk/Background_Information_re_CBT.htm  

Background information and illustrations of evidence that CBT cannot improve ME/CFS which NICE disregarded

Margaret Williams 25 July 2008

Document 2: http://www.meactionuk.org.uk/Facts_re_GET.htm

Evidence that the Guideline Development Group that produced the NICE Guideline on CFS/ME (C53) failed to fulfil its remit

(particularly in relation to the potential dangers of graded exercise therapy)

Margaret Williams 7 July 2008

Document 3: http://www.meactionuk.org.uk/Cardiovascular.htm  

Evidence of cardiovascular problems in ME/CFS that NICE disregarded

Margaret Williams 4 August 2008

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Read ME UK Events and ME agenda has no connection with the legal cases – please address all enquiries concerning the Judicial Review to the legal team representing the Fraser/Short case and the legal representives for the ONE CLICK case or to the High Court, where appropriate. Enquiries relating to the content of this article by Margaret Williams should be directed to Stephen Ralph of MEactionUK

For a document setting out what a Judicial Review is, what it is not and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance/

An unoffical site has been set up for supporters of the NICE CFS/ME Judicial Review, for information and updates for those planning to attend the hearing and for those able to offer assistance with arrangements and publicity. The site can be found here:

http://www.nicemecourt.co.uk/

“This [NICE Judicial Review] is undoubtedly a high profile case. At the preliminary Hearing in June, there was standing room only. The Hearing is listed for 11th-12th February 2009. High Court officials are now busy rearranging the Court venue in order to ensure not only disabled access and facilities, but also to accommodate the coach-loads of people from the UK ME/CFS community who are expected to turn up to witness what will undoubtedly be a landmark legal action that will have global ramifications.” M Williams

Prejudice-based Medicine?

Reasons for Judicial Review of the NICE Guideline on “CFS/ME”

by Margaret Williams

27th October 2008

The full article by Margaret Williams can be read on MEActionUK

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A member of the ME internet community has created a website to support the NICE Guidelines court case(s). This is an unofficial site and not connected to the organisers but for supporters who want to make the hearing a success.

The site can be found at:

http://www.nicemecourt.co.uk/  

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For guidance on what a Judicial Review is, what it isn’t, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance/

Judicial Review: Judgement Guidance

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For a summary of the application hearing which took place in June and a copy of the ME Association’s position regarding the NICE legal challenge see:

http://meagenda.wordpress.com/2008/06/18/summary-of-application-hearing-nice-cfsme-judicial-review/

Financing a judicial review of the NICE guideline on ME/CFS

Published by the MEA in November 2007

Summary of application hearing, NICE CFS/ME judicial review

The case against the NICE guideline on ME/CFS moved to Court 7 in the Royal Courts of Justice on Tuesday 17 June. Summary of key points made during the proceedings.

Produced by the ME Association

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In November AfME (Action for ME) issued a statement on their position regarding the NICE legal challenge see:

http://www.afme.org.uk/news.asp?newsid=343

Legal action against NICE

21 November 2007

There have been stories in the media about a possible legal challenge to the NICE guidelines. Action for M.E believes this challenge is misguided and will not be supporting it…

Read full statement from AfME here

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In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.

Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% M.E. Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.

Simon Lawrence, Chair The 25% M.E. Group

Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.

Jane Colby, Executive Director The Young ME Sufferers Trust

Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.

*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising/attending a gathering outside the conference to contact him.

I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.

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Before the controversial RSM’s London CFS Conference had taken place in April, it was already known that a regional one day conference on CFS had been scheduled by the Royal Society of Medicine Wessex Region for Bristol, for 18 September.

This conference takes place today and once again is intended for medical and allied health professionals, only.

I had been alerted to this event by Neil Riley, Chair of the ME Association Board of Trustees, on 13 April.

I flagged up this regional conference in a posting on Read ME UK Events site on the same day; the site received just under 3000 hits during the month of April, alone.

Since then, I have flagged up this Bristol conference several times on both Read ME UK Events and ME agenda site.

I have also put out a copy of the Agenda for tomorrow’s conference on the Co-Cure mailing list together with the Agenda for a conference on Chronic Fatigue Syndrome in Children and Young People by the Royal College of Psychiatrists South West Division Training being held in Devon, on 24 October.

Dr Esther Crawley, who was a member of the NICE Guideline Development Group, will be presenting at both the RSM’s Bristol conference and the Royal College of Psychiatrists conference. 
Click here for Agendas for these meetings.

In the run up to the RSM’s London CFS Conference, I had launched a Postcard Campaign to help raise awareness of the conference itself and to encourage the ME community to write in to the RSM and express their concerns. This was just one of a number of initiatives around this conference.

I’ve already mentioned, here, that unfortunately due to personal circumstances I have not been in a position to undertake a Postcard Campaign for the Bristol CFS Conference.

Given the interest in the RSM’s London conference in April, the ME community and the organisations which represent our interests have been notably subdued about the conference taking place tomorrow.

Although this is a regional conference it has implications for all of us in the UK, and internationally. There are many of us who consider that the influence of Professor Peter Denton White is equal to that of Professor Simon Wessely, and Professor White is giving the same presentation in Bristol that he gave in London, in April. There is also a presentation on behalf of NICE.

But as a regional conference, it has particular relevance to residents of the Bristol area for it is their medical professionals – their local GPs, medical trainees and allied health professionals – whose bums will be on the seats at UBHT Education Centre, tomorrow.

To the best of my knowledge no position statement has been issued by the Bristol ME Support Group whose members are amongst those for whom this conference has most relevance. On Saturday, I contacted the Bristol ME Support Group to ask what the Group’s position on this conference is, whether they had issued a position statement and whether the group were taking any action or had written to the media or to the RSM?

I’ve received no response so far on behalf of the group.

In March/April, AfME had issued a statement about Sir Peter Spencer’s participation in the London RSM Conference and this was followed by responses in the form of position statements from the ME Association, The 25% ME Group, The Young ME Sufferers Trust and Invest in ME. Full copies of all these positions statements were posted on both blogs and extracts were included in the “On a Postcard, please” Campaign Flyer. Paul Davis of RiME also provided a brief position statement specifically for inclusion in the Flyer.

Our patient organisations have also been notably muted on the issue of this Bristol conference.

Yesterday I contacted the ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether any of these organisations have issued or intend to issue position statements on the Bristol conference or have made any arrangements for material to be handed out to conference attendees.

I will post any responses I receive as they come in.

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