Archive for August, 2008

12th May ME “Peoples Day” events: Patron resigns

Posted in 12 May ME events on August 22, 2008 by meagenda

12th May ME “Peoples Day” events: Patron resigns

Trevor Wainwright announced in July that he has resigned as Event Patron to the 12th May “Peoples Day” events held in London and organised by Diane Newman. No announcement has been issued by Ms Newman following Mr Wainwright’s resignation.

For this year’s events, letters and other material were handed in to Downing Street by Ms Newman on 12 May. On 15th May, an “M.E./CFS Open Forum” meeting was held in a House of Commons committee room, chaired by Ms Newman.

The minutes for this public meeting have yet to be published.

Please direct all enquiries to Diane Newman 12MayM.E.PeoplesDay_Events@live.co.uk

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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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