Archive for the ME Association 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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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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NICE CFS/ME Judicial Review: Launch of supporters’ website

Posted in AfME/Action for ME, CBT/GET, Judicial Review, ME Association, ME in the media, NICE CFS/ME guideline on September 23, 2008 by meagenda

NICE CFS/ME Guideline legal challenge supporters’ website for information, updates and appeals for assistance with Judicial Review

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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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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Bristol RSM Conference: Where’s the action?

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

Bristol RSM Conference: Where’s the action?

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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Update on the RSM’s “Medicine and Me” conference

Posted in AfME/Action for ME, AYME, Invest in ME, ME Association, Royal Society of Medicine, The Young ME Sufferers Trust, Uncategorized on September 9, 2008 by meagenda

Update on the planning of the Royal Society of Medicine’s “Medicine and Me” conference

Note that this proposed event at the RSM’s London conference venue would be one in a series of “Medicine and Me” events for topics around various medical conditions aimed at patient group participation held by the RSM, over the past few years. The title does not refer to “Medicine and M.E.” so this meeting would, ironically, be a “Medicine and Me” event on “CFS” or possibly “CFS/ME”, though the RSM did not use the terms “CFS/ME”, “ME/CFS” or “ME” in its April “CFS” Conference.

Further information about the format of these patient events, which in the past, have been held in association with just one patient organisation, not several, can be found here

Some information about this event is beginning to trickle out. In the summary of its September Board meeting, the ME Association reports:

ROYAL SOCIETY OF MEDICINE (RSM) – 2009 MEDICAL MEETING FOR PEOPLE WITH ME: Charles Shepherd, along with representatives from four other national support charities (AfME, AYME, Tymes Trust, 25% Group), will be attending a further planning meeting at the RSM on Thursday September 4th. At present, it looks as though this half day meeting aimed at people with ME, and planned by people with ME and charity representatives, will be taking place in Spring or early Summer 2009. The planning meeting will be deciding on the content of the paired presentations part of the programme and the choice of medical speakers who will be invited to participate.”

Meanwhile, Invest in ME has concerns about the selection process through which organisations were invited to participate in the planning of this event and the rejection of its offer to participate in the planning stages of this event.  In its September newsletter, Invest in ME reports:

RSM – Medicine and ME

“After the Royal Society of Medicine announced their intention to hold a conference on CFS in April Invest in ME contacted the then President of the RSM, Baroness Finlay, and passed to her factual information regarding ME/CFS. We also invited her to our London conference and offered help in planning a Medicine and ME conference which we were told the RSM was considering.

“We contacted the Baroness again in July and our letter was passed to Dr John Scadding.

“Dr Scadding replied to our offer to help by stating that only the following organisations were to be invited to be in the planning of this event – the 25% Group, AfME, AYME, MEA and Tymes Trust.

“We replied to Dr Scadding that we thought we could offer valuable experience in planning such an event and have been working on behalf of patients contacting us for help. We weren’t sure why those organisations alone were chosen or why an arbitrary number of organisations seems to have been invited.

“Dr Scadding rejected our offer, having “sought the advice of a number of others”. We can only guess who these “others” are who are advising him.

“Dr Scadding went on to describe the reasons for IiME’s exclusion as –

“… 1. The group is already very large, with the 5 patient charities, patients with CFS / ME and the necessary RSM staff. Very large groups often have difficulty in reaching a consensus in a committee situation. I have planned many Medicine and Me meetings, usually in partnership with just one patient charity / support group. Patients attending the subsequent Medicine and Me meetings have not complained of bias or exclusion of their interests.

2. I am reasonably confident that the group is representative of CFS / ME sufferers overall, and that no interests will be forgotten, excluded or ignored.

3. The programme for the Medicine and Me conference must be driven by the patients on the planning group.

I think we need to be realistic about what can be achieved in a Medicine and Me meeting. It lasts only about three and a half to four hours. Three or four key areas of interest are nominated by the patients on the planning group; patients speak first on these and each is followed by an expert response. The topics may be about diagnosis, research, treatments, access to treatment, stigma, prognosis, etc etc. During the concluding lengthy panel discussion, any matter of concern about the condition to those in the audience can be raised, not just those forming the focus of the patient presentations.

It is clearly impossible in the time available during the meeting to cover every aspect of any disease, and patients have often requested further meetings (which we are happy to consider, but we need to be mindful of the multitude of chronic diseases that exist, each deserving of a Medicine and Me meeting).

I cannot predict at this stage the topics that will be chosen within CFS / ME to form the focus of the Medicine and Me meeting, but if you would like to make some suggestions now, I would be very pleased to float these at the planning group meeting.

I am aware of the interest of Invest in ME in promoting biomedical research, and I am sure this will be discussed. Indeed, it may well be that this is one of the topics chosen, but that is for patients to decide…”

As far as I can tell, the RSM has not made webcasts and PowerPoint presentations of previous “Medicine and ME” events available on its website, as it did following its “CFS” Conference, in response to pressure from the ME community.

Many of those who would have liked to have attended this “Medicine and ME” event will be disenfranchised because they are too unwell to travel, because of the cost of travel and conference tickets or because like me, they have committments as carers.

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Update on proposed RSM “Medicine and Me” event

Posted in AfME/Action for ME, ME Association, Prof Peter White, Royal Society of Medicine, The Young ME Sufferers Trust on August 12, 2008 by meagenda

Update on proposed RSM “Medicine and Me” event

I was told by Royal Society of Medicine Event Co-ordinator, Nicole Leida, on 14 March, prior to the RSM’s “CFS” Conference, that the RSM were considering holding a “Medicine and Me” event on Chronic Fatigue Syndrome.

This proposed event would be one in a series of “Medicine and Me” conferences for topics around various medical conditions involving patient group participation which have been held by the RSM over the past few years.

The event title does not refer to “Medicine and M.E.” so this meeting would, ironically, be a “Medicine and Me” event on “CFS” or possibly “CFS/ME”, though the RSM used only the term “CFS” for its April ’08 Conference.

In the standard letter sent out by Mr Ian Balmer, CE of the Royal Society of Medicine, following the RSM’s Conference, Mr Balmer wrote:

“In order to redress the issue of patient involvement, the RSM has decided [to] introduce a ‘Medicine and Me’ conference on the subject of CFS/ME.

“This will be part of a series of conferences aimed at a wider audience, the planning of which will include patients and the format of which allows patients to speak first, and experts to respond to the issues raised. Typically the audiences for these conferences will be comprised of 70% patients and families. This particular series has proved extremely successful in allowing patients to share their experiences, focus on issues of greatest important to them and allow true dialogue between patients and acknowledged experts. This conference will be held in the early part of the 2008/09 academic year.”

Past and scheduled RSM “Medicine and Me” meetings appear to be arranged in association with a single patient charity or organisation. The charge to patients and carers for seats at these events is currently between £20 and £25.00.

More information about the format of these events can be found on Read ME UK Events site at:

https://readmeukevents.wordpress.com/2008/05/14/rsm-medicine-and-me-events/

From the Medicine and Me: Eczema event which took place in September, 2007:

Educational aims & objectives:

‘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.

‘Medicine and Me: Eczema’ is jointly organised by the Royal Society of Medicine and the National Eczema Society.

‘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 their experiences, to hear about the latest research and to question the experts. Eight Medicine and Me meetings have been held to date, on a wide range of diseases; these have all proved to be popular with patients.

The programme for this meeting includes an initial review of recent research, then presentations from three patients, each followed by a response from an expert on eczema, who will discuss the issues raised by the patients, concerning treatment and research. The meeting will finish with an extended interactive discussion involving all the speakers and the audience.”

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For examples of the type of speakers, agenda and formats of previous events see:

http://www.rsm.ac.uk/academ/c10-z.php

Medicine and Me: Eczema, Tuesday 11 September 2007

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

Medicine and Me: Sleep Apnoea, Saturday 10 May 2008

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

Medicine and Me: Hepatitis C, Thursday 22 May 2008

http://www.rsm.ac.uk/academ/e10-lupus.php

Medicine and Me: Lupus, Tuesday 24 June 2008

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On page 31 of the July 2008 edition of ME Essential (Issue 107) there is an update on the proposed “Medicine and Me” event.

The ME Association reports that arrangements are being made for the Royal Society of Medicine to run another ME/CFS conference, with the major ME charities and patients involved in its planning that will be presented to an audience of predominately people with ME/CFS.

The MEA says that conference is expected to be held next year; that the Dean of the RSM, Dr John Scadding, has already held preliminary talks with the MEA, with Action for ME and with the Association of Young People with ME and that a further meeting will be held, probably in September, when the scope of the planning exercise will be widened to include the Young ME Sufferers Trust, The 25% M.E. Group for severe sufferers and individuals with ME.

The MEA says that Dr Scadding “is keen to make the event as attractive as possible to patients and avoid the criticisms levelled at this year’s event – when people with ME demonstrated against its psychiatric bias and the failure to include them in its programme.”

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What the ME Association does give is any details about how individuals with ME or carers of people with ME or other patient organisations other than those mentioned above should set about expressing an interest in becoming involved with the planning of this event at any future planning meeting which follows out of these “preliminary talks” with the MEA, AfME and AYME. I suggest that those interested in pursuing participation in the planning stages for this event should contact the RSM directly.

I have no information about which “experts”, researchers, clinicians, practitioners, patient organisation reps or individuals might be anticipated to be invited to make presentations but if you study the agendas of the four examples of previous events it is evident that there are around seven or eight individual presentations which are scheduled for around 15 minutes duration or less. These events are afternoon events and therefore less time is available for each presentation than was allocated for the RSM’s “CFS” Conference presentations.

Tickets for these “Medicine and Me” events are in the region of £20 to £25 per seat.

To the best of my knowledge, the RSM has not made webcasts of these patient orientated events available to the public in the past – so it’s not clear whether the RSM intends to record this proposed event. Since this is a patient group with particular mobility issues perhaps the RSM can be persuaded to record the presentations, although if these events are more informal gatherings and if the presentations are interwoven with patient contribution and discussion there may be difficulties obtaining permission to make recordings, in the first place, and to make them public, from all those who participated in discussion or question sessions. Note the RSM did not record the question and answer sessions at the end of the individual presentations at the April conference.

In this magazine item, the MEA does not mention the forthcoming regional RSM Conference on “CFS” scheduled for Bristol on 18 September, this year – see conference agenda here

so it’s not known whether the MEA, AfME or AYME are intending to take stands at this regional conference as they did for the April Conference in London.

Professor Peter Denton White will also be presenting at this Bristol conference as is AfME medical adviser, Prof Tony Pinching.

Mary Jane Willows (CEO AYME) is also one of the presenters at this event. Ms Willow’s presentation is listed on the Bristol conference agenda as “What it feels like to have CFS/ME, Mary-Jane Willows, Person with CFS/ME”; her interest as CEO of AYME has not been given on the Agenda.

Another presenter at this Bristol conference is Dr Esther Crawley, Royal National Hospital for Rheumatic Diseases, Bath speaking on “The practical management of CFS/ME”. Dr Crawley is a medical adviser to AYME.

Also on page 31 of ME Essential magazine is some information on the availability of webcasts of the RSM’s April Conference which was nearly a month out of date at the time of publication. All ten webcasts have been available from the RSM’s site since 2 July.

Links for the webcasts and PDFs of PowerPoint presentations can be read on Read ME UK Events here

Compiled by Suzy Chapman
12 August 2008

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