Archive for the UNUM Category

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

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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 CFS Conference webcasts: update

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 June 27, 2008 by meagenda

RSM CFS Conference update on release of webcast

This morning (27 June) I telephoned the office of Mr Ian Balmer, Chief Executive of the Royal Society of Medicine for an update on the release of a webcast of the presentations made at the RSM’s CFS conference on 28 April.

I spoke to Mr Balmer’s personal assistant, Ms Joanna Rose, who telephoned me later with the following information:

That Power Point slides used during the presentations are expected to be available from the RSM website from next Monday (30th June).

That a webcast of the presentations is expected to be completed and available from the website by the end of next week (4th July).

I asked Ms Rose whether all the presentations would be available on the website since there had been some concerns that permission might not yet have been obtained from all presenters: Ms Rose advised me that it was her understanding that all presentations will be included.

The page on the RSM website for RSM webcasts is:

http://www.rsm.ac.uk/academ/video.php

I will update as soon as I can confirm that the Powerpoint Presentations have been published.

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Thanks to M.E. Support – Norfolk

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

Thanks to M.E. Support – Norfolk

M.E. Support – Norfolk group mails out an A5 monthly newsletter called MEMO to its membership.

I’d like to thank John Sayer, Editor of MEMO and Chair of M.E. Support – Norfolk’s committee for the coverage given to two initiatives associated with the Royal Society of Medicine “CFS” Conference which took place, in London, on 28 April 2008.

The first four pages of the April edition of MEMO were given over to the promotion of the Royal Society of Medicine demonstration – the RSM Protest, which included an introduction by Suzy Chapman, a full copy of the position statements issued by The 25% M.E. Group and Jane Colby on behalf of The Young M.E. Sufferers Trust, and the RSM Protest notice issued by RSM Protest Organiser, Gus Ryan.

The following edition of MEMO devoted an additional four pages to the promotion of the RSM Postcard Campaign launched by Suzy Chapman in the run up to the “CFS” conference.

It was very much appreciated that M.E. Support – Norfolk committee and MEMO editorial gave over so much space in two consecutive newsletters to help promote these initiatives launched in protest against the RSM Conference and to help raise awareness of the considerable concerns surrounding this line-up and agenda for this conference and I should like to thank John Sayer and his committee for their support.

Suzy Chapman,
“On a Postcard, please” Campaign Co-ordinator
https://readmeukevents.wordpress.com
http://meagenda.wordpress.com

A copy of this notice also appears on ME agenda site.

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Prof Mansel Aylward and the RSM

Posted in CBT/GET, Royal Society of Medicine, UNUM on May 26, 2008 by meagenda

Professor Mansel Aylward, Director, Unum Centre for Psychosocial and Disability Research, Cardiff University, was one of the session chairs at the Royal Society of Medicine’s “CFS” Conference held on 28 April.

Conference Programme here

Readers may not have been aware that Professor Aylward is also a Sub-Dean of the Royal Society of Medicine (Regional Sub-Dean for Wales).

According to http://www.cardiff.ac.uk/psych/unum/staff/index.html and the RSM’s website, Professor Mansel Aylward was appointed The Royal Society of Medicine’s Academic Sub Dean for Wales in 2001.

http://www.rsm.ac.uk/regions/regions_wales.php

Wales
Honorary Sub-Dean

Professor Mansel Aylward

Email: wales@rsm.ac.uk  

Professor Mansel Aylward CB MD FRCP FFOM FFPM is Director of the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University, Wales.

The Centre for Psychosocial and Disability Research at Cardiff University is the first of its kind to offer a unique opportunity to extend our knowledge and understanding of the psychosocial, social, economic and cultural factors that influence health, illness and disease, recovery, rehabilitation and reintegration into rewarding work.

He is also chair of the Wales Centre for Health which is a new body, established by the Welsh Assembly Government, to lead improvements in the nation’s health.

It aims to approach issues in a new way by advocating on public health issues, engaging with the public and their communities, advising on their concerns, and speaking independently on health, free from corporate or economic interests.

In July 2005 he became a Trustee of The Shaw Trust which provides training and work opportunities for people disadvantaged in the labour market due to disability, ill health, or other social circumstances.

From 1996 to April 2005 he was Chief Medical Adviser, Medical Director and Chief Scientist to the United Kingdom’s Department for Work and Pensions (DWP). He was also Chief Medical Adviser and Head of Profession at the Veterans’ Agency, Ministry of Defence.

He was made a Companion of the Bath in the Queen’s Birthday Honours List 2002. In 2001 he was appointed as The Royal Society of Medicine’s Academic Sub Dean for Wales.

He is a physician and specialist in rheumatology and rehabilitation, therapeutics and clinical pharmacology; a visiting Professor at several universities in Europe and North America and a consultant to the United States Social Security Administration and Department of Labour.

He entered the British Civil Service in 1985 and was appointed Chief Medical Adviser at the Department of Social Security in 1996 and at the Department for Work and Pensions in 2000. From 1974 to 1984 he was Chairman and Managing Director of Simbec Research Ltd, UK, and President of Simbec Inc, New Jersey USA.

He played a key role in development and evaluation of the UK’s medical assessment for incapacity (the All Work Test), and was heavily involved in developing the Personal Capability Assessment (PCA). He led the Corporate Medical Group on the UK Government’s Welfare Reform initiatives and made a major contribution in establishing the new postgraduate diploma for doctors in Disability Assessment Medicine.

He was closely involved in developing the UK’s successful “Pathways to Work” initiatives and a framework for Vocational Rehabilitation. He is keenly interested in addressing the health, work and social issues relevant to morbidity, mortality, work inactivity and social exclusion in the South Wales Valleys where he was born and brought up.

His interests are in rheumatology and rehabilitation, health and productivity, psychosocial illnesses, chronic fatigue syndromes and back pain disability. He has published widely in these various areas.

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