Archive for the Sir Peter Spencer Category

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

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Position on RSM Bristol conference: TYMES Trust, 25% M.E. Group

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on September 18, 2008 by meagenda

ME patient organisations’ positions on the RSM’s regional conference on “CFS”

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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Squeeze the psychs out of M.E.: Prof Wessely RSM presentation

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, UNUM on July 9, 2008 by meagenda

During his presentation at the Royal Society of Medicine’s “CFS” Conference on 28 April 2008, Professor Simon Wessely referred to “the demonstration Squeeze the psychs out of M.E.” using a PowerPoint slide of the “Squeeze the psychs out of M.E.” graphic to illustrate this section of his talk. I would like to point out that whilst I am happy for Professor Wessely to have included my graphic in his presentation, that the “Squeeze the psychs out of M.E.” graphic and slogan were prepared exclusively for use with the RSM “On a Postcard, please” campaign and that both were initiatives independent of the RSM Protest organised by Gus Ryan outside the RSM building on the afternoon of the conference.

This extract from the closing minutes of Professor Simon Wessley’s presentation to the Royal Society of Medicine “CFS” Conference is not an official transcript. Whilst considerable care has been taken to prepare a fair and verbatim transcript, some errors and omissions may remain.

 

Prof Simon Wessely’s RSM CFS Conference presentation (and PDF of PowerPoint slides)

Epidemiology: Professor Simon Wessely, King’s College London

Webcast available from RSM website (registration required) at: http://rsm.mediaondemand.net/events.aspx  

PowerPoint slides only available to download at:

Epidemiology [PDF 544k]
Professor Simon Wessely, King’s College London
http://www.rsm.ac.uk/chronicfatigue08/wessely.pdf  

Title: Epidemiology counts… [illustrated with 54 PowerPoint slides]

http://rsm.mediaondemand.net/player.aspx?EventID=1293

32.00 mins into Prof Wessely’s presentation [34.38 mins]

These are important, then, because what we’re saying is that any proposed model for CFS, if it’s going to reflect the world as it is, must explain these epidemiological findings, it must explain the genetics finding, it must explain the gender bias, it must explain these links with previous psychological disorders, it must explain why some, but not all agents can initiate CFS and it must explain these complicated links with activity.

Copyright Suzy Chapman

Copyright Suzy Chapman

PowerPoint slide 53: Image: “Squeeze the psychs out of M.E.” graphic from “On a Postcard, please” campaign

It’s not possible, really though, to completely avoid the outside world much as though we would like, and this kind of erm, demonstration “Squeeze the psychs out of M.E.” – and one can understand the emotions behind this – but I do find it hard to sympathise and I also think it’s a great mistake because if you really actually want to understand chronic fatigue syndrome, M.E. whatever we’re going to call it, you have to do so in possession of all the facts – not just those facts that you like, but all of them; you can’t pick and choose and the history of science tells us very clearly that turning your back on erm, things that you don’t like, things that aren’t going the way you want them to, and there are many, many examples of this, at best leads to false conclusions and bad decisions, and at worst leads to bigotry and intolerance.

It is not good enough to dismiss the research that we have described as “nonsense” or those who followed it as “knaves”, “charlatans” or “varlets” because they’re none of those things – if you want to help sufferers you have to see the world as it is, in all its complexity and not just parts of it.

[Image]

PowerPoint slide 54: Image: Front cover: Kings Centre for Military Health Research Ten Year Report
http://www.kcl.ac.uk/content/1/c4/79/73/SW%20Publications.doc

That’s ought to be my last slide but I don’t want to leave it like that as I don’t like it, so this actually is my last slide and this is just finally a kind of personal note – a strange thing has happened, I still see patients every week but I’ve really pulled out of research in this area and I have very little involvement, now, and I’ve done the exact opposite of Sir Peter Spence [sic] there at the back. He’s moved from the armed forces into the world of chronic fatigue syndrome at about the same time as I’ve done exactly the opposite – I haven’t joined the armed forces, by the way, so those interested in the security of the country can be, can be relaxed on that one [laughter] but I have now devote nearly all of my time towards research into this area and erm, if Sir Peter, if things are going as well for you as they are for me in this area then you’re a very happy man because I certainly am, as well. At that point, thank you very much.

[No question sesssion included in webcast]

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RSM CFS Conference Webcasts and Presentation PDFs

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, UNUM on July 3, 2008 by meagenda

Royal Society of Medicine “Chronic Fatigue Syndrome” Conference 28 April 2008

Webcasts and PDFs of Presentation documents

Webcasts of all ten presentations have now been added to the RSM’s website. These also include PowerPoint slides which accompanied the presentations.

For ease of reference, all links to webcasts are collated in this one posting, together with links for the ten presentation document PDFs. Those on dial-up internet access please note that the PDF for Sir Peter Spencer’s presentation is around 6.0MB file size.

The webcasts are available in four session sections. Registration is required to view these webcasts but this does not take long to fill in and is processed immediately – you may need to log in each time you return to the site.

http://rsm.mediaondemand.net/events.aspx

Introduction by RSM Dean Dr Scadding
http://rsm.mediaondemand.net/player.aspx?EventID=1294

What is Chronic Fatigue Syndrome & what is ME?: Professor Peter White, Barts & the London School of Medicine
http://rsm.mediaondemand.net/player.aspx?EventID=1291

Epidemiology: Professor Simon Wessely, King’s College London
http://rsm.mediaondemand.net/player.aspx?EventID=1293

Pathophysiology: Dr Anthony Cleare, Institue of Psychiatry, London
http://rsm.mediaondemand.net/player.aspx?EventID=1292

Assessment: general practitioners’ approach: Professor Chris Dowrick, University of Liverpool
http://rsm.mediaondemand.net/player.aspx?EventID=1334

Assessment: psychiatrist’s approach: Professor Matthew Hotopf, Institute of Psychiatry, London
http://rsm.mediaondemand.net/player.aspx?EventID=1333

M.E.- The Patient Perspective, Sir Peter Spencer
http://rsm.mediaondemand.net/player.aspx?EventID=1336

Management: NICE Guidelines, Professor Richard Baker
http://rsm.mediaondemand.net/player.aspx?EventID=1335

CBT and GET, Professor Rona Moss-Morris
http://rsm.mediaondemand.net/player.aspx?EventID=1338

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

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

At the link below on the RSM site are links to extra online resources to accompany the conference: These are a single PDF of Speaker Abstracts and Biographies and ten PDFs of Presentation documents. No site registration is required in order to view or download the PDFs.

http://www.rsm.ac.uk/chronicfatigue08/index.php  

Chronic Fatigue Syndrome

Further resources to accompany the conference

Please note all presentations open in a new browser window

Speaker Abstracts and Biographies

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

Speaker Presentation documents

Introduction, Dr. John Scadding. Dean of the RSM
Only Webcast available (Registation required)
http://rsm.mediaondemand.net/player.aspx?EventID=1294

What is Chronic Fatigue Syndrome & what is ME? [PDF 278k]
Professor Peter White, Barts & the London School ofMedicine
http://www.rsm.ac.uk/chronicfatigue08/white.pdf

Pathophysiology [PDF 311k]
Dr Anthony Cleare, Institue of Psychiatry, London
http://www.rsm.ac.uk/chronicfatigue08/cleare.pdf

Epidemiology [PDF 544k]
Professor Simon Wessely, King’s College London
http://www.rsm.ac.uk/chronicfatigue08/wessely.pdf

Assessment: general practitioners’ approach [PDF 576k]
Professor Chris Dowrick, University of Liverpool
http://www.rsm.ac.uk/chronicfatigue08/dowrick.pdf  

Assessment: psychiatrist’s approach [PDF 225k]
Professor Matthew Hotopf, Institute of Psychiatry, London
http://www.rsm.ac.uk/chronicfatigue08/hotopf.pdf

M.E. – The patient perspective [PDF 6.1mb]
Sir Peter Spencer, Action for M.E.
http://www.rsm.ac.uk/chronicfatigue08/spencer.pdf

Management: NICE Guidelines [PDF 301k]
Professor Richard Baker, Leicester University
http://www.rsm.ac.uk/chronicfatigue08/baker.pdf

CBT and GET [PDF 269k]
Professor Rona Moss-Morris, University of Southampton
http://www.rsm.ac.uk/chronicfatigue08/moss_morris.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

“Please note that copyright in the presentations on the RSM’s site belong to the authors listed. Permission must be sought for any copying or other re-use of their material.”

“The Royal Society of Medicine is not responsible for the content of the presentations of the listed authors.”

Apologies for the error in one of the links that were mailed out via Co-Cure e-list, yesterday, this has now been corrected in a follow up posting.

I’d like to take this opportunity of thanking the following: Gus Ryan for organising the RSM Protest on the afternoon of the conference, his two stewards, Annette Barclay and Ciaran Farrell, all those who attended the protest and prepared presentation letters; Joan and Dewi Crawford for attending in the morning and handing out several hundred information leaflets to conference attendees; everyone both here in the UK and internationally, who sent postcards, letters and emails to the RSM in protest against the make-up of the planning committee, the line-up of presenters and the conference agenda – according to the RSM’s Mrs Jo Parkinson, they were “inundated”; all those who raised awareness of the various protests on websites, forums, e-lists and social networking sites and all those who agitated before and following the conference for transcripts and videos of the presentations to be made available on the RSM’s website.

Suzy Chapman,
“On a Postcard, please” Campaign Co-ordinator

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RSM Conference webcast: Prof M Hotopf

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on June 30, 2008 by meagenda

The fourth and fifth RSM Conference webcast

 

Pathophysiology: Dr Anthony Cleare, Institue of Psychiatry, London

http://rsm.mediaondemand.net/player.aspx?EventID=1292  

Assessment: psychiatrist’s approach: Professor Matthew Hotopf, Institute of Psychiatry, London

http://rsm.mediaondemand.net/player.aspx?EventID=1333

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RSM webcast: Dr Anthony Cleare

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on June 30, 2008 by meagenda

Webcast of presentation by Dr Anthony Cleare has now been added to the RSM website.

Registration is required to view RSM webcasts

Presentation by Dr Anthony Cleare at:

http://rsm.mediaondemand.net/player.aspx?EventID=1292

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RSM “CFS” Conference webcasts and abstracts

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on June 30, 2008 by meagenda

RSM “CFS” Conference webcasts are now available on the RSM website

http://rsm.mediaondemand.net/events.aspx  

Three webcasts are currently available to view at the link above. These are:

Introduction by RSM Dean Dr Scadding
http://rsm.mediaondemand.net/player.aspx?EventID=1294

Presentation by Professor Peter Denton White
http://rsm.mediaondemand.net/player.aspx?EventID=1291

Presentation by Professor Simon Wessely
http://rsm.mediaondemand.net/player.aspx?EventID=1293

Registration is required to view these webcasts but this does not take long to fill in and is processed immediately.

I will post the links for further webcasts as these become available on the RSM’s site. I was told on Friday, by the RSM that it was anticipated that webcasts of all presentations would be available by the end of this week.

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

At the link below on the RSM site are links to extra online resources to accompany the conference: Chronic Fatigue Syndrome which took place on Monday 28 April 2008. These are PDFs of Speaker Abstracts and Biographies:

http://www.rsm.ac.uk/chronicfatigue08/index.php

Chronic Fatigue Syndrome
Further resources to accompany the conference

Please note all presentations open in a new browser window

Speaker Abstracts and Biographies

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

Speaker Presentations

Introduction, Dr. John Scadding. Dean of the RSM
View Webcast (Registation required)
http://rsm.mediaondemand.net/player.aspx?EventID=1294

What is Chronic Fatigue Syndrome & what is ME? [PDF 278k]
Professor Peter White, Barts & the London School ofMedicine
http://www.rsm.ac.uk/chronicfatigue08/white.pdf
View Webcast http://rsm.mediaondemand.net/player.aspx?EventID=1291

Pathophysiology [PDF 311k]
Dr Anthony Cleare, Institue of Psychiatry, London

http://www.rsm.ac.uk/chronicfatigue08/cleare.pdf

Epidemiology [PDF 544k]
Professor Simon Wessely, King’s College London

http://www.rsm.ac.uk/chronicfatigue08/wessely.pdf
View Webcast http://rsm.mediaondemand.net/player.aspx?EventID=1293

Assessment: general practitioners’ approach [PDF 576k]
Professor Chris Dowrick, University of Liverpool

http://www.rsm.ac.uk/chronicfatigue08/dowrick.pdf

Assessment: psychiatrist’s approach [PDF 225k]
Professor Matthew Hotopf, Institute of Psychiatry, London
http://www.rsm.ac.uk/chronicfatigue08/hotopf.pdf

M.E. – The patient perspective [PDF 6.1mb]
Sir Peter Spencer, Action for M.E.

http://www.rsm.ac.uk/chronicfatigue08/spencer.pdf

Management: NICE Guidelines [PDF 301k]
Professor Richard Baker, Leicester University

http://www.rsm.ac.uk/chronicfatigue08/baker.pdf

CBT and GET [PDF 269k]
Professor Rona Moss-Morris, University of Southampton
http://www.rsm.ac.uk/chronicfatigue08/moss_morris.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_morris.pdf

Please note that copyright in the presentations on the RSM’s site belong to the authors listed. Permission must be sought for any copying or other re-use of their material.

The Royal Society of Medicine is not responsible for the content of the presentations of the listed authors.

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