RSM “Medicine and Me” event: ME and CFS

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, ME Association, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on May 6, 2009 by meagenda

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

Back to Home page

Countdown: Judicial Review NICE CFS/ME Guideline

Posted in CBT/GET, Judicial Review, ME in the media, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on January 23, 2009 by meagenda

Royal Courts of Justice

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

Back to Home page

NICE CFS/ME Judicial Review: new YouTube

Posted in CBT/GET, Judicial Review, ME in the media, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on January 6, 2009 by meagenda

The NICE M.E. Guidelines Judicial Review new YouTube video

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

****************************************************

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.

Back to Home page

Admin: Christmas on Read ME UK Events

Posted in Admin, Gilderdale case on December 22, 2008 by meagenda

A peaceful Christmas and better health in the coming year

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.

candle

 

Back to Home page

Royal Society of Medicine: date for ‘Medicine and me’ meeting

Posted in AfME/Action for ME, Royal Society of Medicine on December 13, 2008 by meagenda

The Royal Society of Medicine plans to hold the proposed ‘Medicine and me’ conference on

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/

Back to Home page

Documents, NICE CFS/ME Judicial Review: M Williams

Posted in 25% ME Group, CBT/GET, Judicial Review, ME Association, ME in the media, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, UNUM on October 31, 2008 by meagenda

Margaret Williams has issued a series of documents created specifically for the NICE Judicial Review. These are being circulated by Stephen Ralph and are also available from the MEActionUK website.

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

Back to Home page

NICE Guideline on “CFS/ME”: Date for Hearing of Judicial Review

Posted in CBT/GET, Judicial Review, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on October 30, 2008 by meagenda

Margaret Williams has announced a Hearing listing for the Judicial Review of the NICE Guideline on “CFS/ME”.

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

Back to Home page

Follow

Get every new post delivered to your Inbox.