Archive for March, 2008

Further questions to the RSM

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 March 31, 2008 by meagenda

The following questions have been raised with the RSM, today:

See also: http://www.rsm.ac.uk/sponsorship/plan.php and

http://www.rsm.ac.uk/sponsorship/exclsponsor.php

  
To: Ms Bina Arpino, RSM Administration
CC: Mrs Jo Parkinson, RSM Director of Education and Professional Development

Sent: Monday, March 31, 2008 8:37 AM
Subject: Concerning the planning of CFS Conference 28 April 2008

Re: CFS Conference Monday, 28 April 2008

Dear Ms Arpino,

It is my understanding that RSM conferences can be planned by the RSM around topics proposed by external bodies, organisations or companies.

With regard to the forthcoming conference on Chronic fatigue syndrome, on 28 April, I should be pleased if you would clarify the following:

1] Was the concept for this CFS conference initiated internally or externally and does the conference have sponsors?

2] If externally, please specify which companies, bodies or organisations initiated the concept and/or have sponsorship status within this specific conference?

If internally, are any companies, bodies or organisations sponsoring this conference and who are these sponsors?

3] Through what process were members of the CFS Conference Planning Committee, other than RSM office holders and personnel, appointed?

4] Through what process were potential speakers for this conference identified, that is:

was the drawing up of a list of potential speakers for this specific conference the preserve of the CFS Planning Committee or did any external body or organisation with an interest in, or sponsorship status within the conference put forward suggestions for potential speakers, and if so, please specify which bodies or organisations and which speakers were identified as a result;

was any external body or organisation not directly involved with the conference or a sponsor of the conference consulted by the RSM for suggestions for potential speakers, and if so please specify which bodies or organisations were approached and which speakers were identified as a result.

Sincerely,

Suzy Chapman

 

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Invest in ME issues statement on RSM CFS Conference

Posted in 25% ME Group, AfME/Action for ME, Royal Society of Medicine on March 30, 2008 by meagenda
Invest in ME statement
Statement from Invest in ME on the forthcoming Royal Society of Medicine Conference on CFS

21 March 2008

Invest in ME have been asked by a number of people to comment on the planned psychosocial conference on CFS being arranged by the Royal Society of Medicine in April and in which the chairman of the ME charity, AfME, is taking part.

Invest in ME supports the view stated recently by the 25% Group that there is no justification for the CEO or chairman of any ME charity to be speaking at the RSM conference and that it is doubtful that such participation will benefit patients with ME or their families and does imply some patient-backed validity to psychiatric involvement in ME – unless an unequivocal and correct view of the physical nature of ME is presented and the proceedings of the conference are published afterwards for all to see.

We do not believe that it is necessary to avoid mentioning conferences such as the RSM conference. Making people aware of these conferences can also serve to highlight the lack of scientific rigour and data in the arguments of those who perpetuate the view of ME as a somatoform illness (as also illustrated in the IiME Quotable Quotes booklet).

Similar psychosocial conferences occur around the world and we feel the best way to publicise a balanced and informed view of ME is to try to provide a means of presenting objective science relating to the extensive biomedical research which has already proven the organic nature of ME. This we are doing with our annual biomedical research conferences.

In the case of the RSM conference the active participation of AfME in another psychosocial conference, occurring six months after their previous psychosocial conference in October 2007, has helped to illustrate that people with ME and their families could look to other organisations to help promote better awareness of ME as a physical illness. It is to be noted that no representative of AfME has ever attended one of the IiME international biomedical conferences.

However, rather than expending time and energy worrying about the conduct of another organisation Invest in ME are instead concentrating fully on our international biomedical research conference in London on 23rd May.

Our theme for the conference is Sub Grouping and Treatments for ME and we hope the conference will itself highlight the biased and unscientific views likely to be portrayed at the RSM conference and cause those “ME charities” who support those views to rethink their position.

This will be IiME’s third such conference and this year we have some of the foremost experts in the world presenting at the conference and delivering scientific data from biomedical research into ME. The IiME conference offers unrivalled knowledge to be presented to a UK/European audience.

Experts such as Dr. Leonard Jason, Dr John Chia, Dr Martin Lerner, Dr Jonathan Kerr, the Whittemore-Peterson Institute represented by their research director Dr Judy Mikovits, Dr Irving Spurr of the John Richardson Research Group, Dr Julia Newton, Dr Jean Monro and Professor Malcolm Hooper will be representing decades of research into ME.

IiME welcome everyone to our conferences to learn about the true nature of ME and the proceedings are always publicised afterwards. In previous years as funding has become available IiME have created a DVD of the conference lectures and presentations and some of the lectures at our conferences have been published in the Journal of Clinical Pathology.

We have heavily discounted the ticket prices for people with ME and their carers and have a scheme which allows healthcare professionals to attend at a discounted rate if they are connected with a local ME group. We have done this to encourage real cooperation between healthcare professionals and people with ME and their families.

The ticket prices for professionals are also very competitive for a conference which carries full CPD accreditation (6 points).

We would invite people who feel strongly about the RSM conference to support the IiME conference on 23rd May and help us to promote awareness of biomedical research which is on display and which will undoubtedly provide the only sure way to develop treatments and a cure for ME.

3rd Invest in ME International ME/CFS Conference – London 23rd May 2008

www.investinme.org

 

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“On a Post Card, please” Campaign

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine on March 29, 2008 by meagenda

It’s hoped that as many of you as possible will join the demo outside the Royal Society of Medicine on Monday, 28 April – if only for an hour or so. But if you’re not well enough to attend, can a carer, friend or relative come instead?

And if no-one can come on your behalf, can you please send a postcard to the RSM? 

Postcard Campaign

Today, with four weeks to go before the RSM conference, I’m launching the “On a Postcard, please” Campaign as a means by which those of you who can’t attend the demo can still have a voice.

You’ve seen the line-up for this conference: the Planning Committee included Wessely, White, Hotopf and Bhui. The presenters include Wessely (KCL), White (BARTS, PACE Trial), Hotopf, Moss-Morris, Dowrick (FINE Trial) and Cleare (IoP) yet the conference is being promoted as taking “a broad look at chronic fatigue syndrome”.

The Dean of the RSM is Dr John Scadding, a Consultant neurologist and Honorary Senior Lecturer at the Institute of Neurology; Dr Scadding also chairs the CFS Conference Planning Committee.

Please write to the Dean and tell him what’s wrong with this conference.

The influence of Wessely and White impacts on the quality of care, services and financial support that ME sufferers receive and on the treatments and testing to which they have access both here in the UK, and internationally – can you send a postcard to the RSM even if you live outside the UK?

An A6 or 4″ x 6″ piece of card or stiff paper will do if you don’t have a plain postcard to hand.

Post card front

Address as above.

Post Card Back

On the back, write, print or paste your own message.

You might want to focus on the psychiatric/psychological bias to the presentations and maybe include an issue such as research funding, CBT/GET, CFS Clinics, UNUM or NICE; whatever.  Or you may want to raise questions about the planning and development of the conference, itself, and whose initiative this was.

Keep it courteous and constructive.
Don’t forget the stamp!

If you’re not up to writing, please ask someone to write it for you.

If you’re not able to get out, ask someone to post it for you to arrive before Monday 28 April.

If you’re sending from outside the UK please allow extra time for delivery.

In the run up to this contentious conference I’m urging as many of you as possible to take the opportunity of making the RSM aware of your concerns.

We’ve got four weeks, can hundreds of us here in the UK and internationally, let the Dean know what we think? 

Thank you!

For a PDF of the RSM CFS Conference programme click here

A copy of this posting is also available under Information:
RSM Post Card Campaign

 

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The use of stands at RSM conference: a request for clarification

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on March 25, 2008 by meagenda

Well, first the RSM says that the ME Association cannot have a stand, and then it says they can.  Now rumours are flying round the internet lists that the RSM says it would also allow the ME Association to attend the conference, itself, as long as they pay the entrance fee (but no mention of this apparent change of RSM policy in the MEA’s latest statement).

And if the RSM has relaxed its policy towards who can and who cannot apply for conference seats – just what is the RSM’s current policy or are they making an exception solely for the ME Association?

And if it is the case that the MEA is now being granted access to the conference – well that places the MEA in a somewhat difficult position: should it book a seat and send a representative so that it is able to report on the proceedings of the conference to its members or should it boycott the conference altogether, other than to man a stand outside the conference hall? 

On 18 March, a colleague approached the RSM for a policy statement on the issue of taking stands at RSM conferences: he’s still waiting on a response:

From: Mr. Ciaran Farrell
Sent: 18 March 2008 20:54
To:
jo.parkinson@rsm.ac.uk 
Subject: RSM 28th April CFS conference “stands” or “stalls”

Dear Mrs. Parkinson,

There has been considerable speculation on the Internet concerning the use of stands or stalls at the RSM Conference on Chronic Fatigue Syndrome scheduled for the 28th of April.

Could you please clarify if any organisations or prominent individuals are permitted to have stands, stalls or a similar type of static display which would involve personnel from an organisation or an individual sitting at a table and giving out, or otherwise providing the person’s or organisation’s literature to RSM Members and other attendees at the conference as part of the activities of the conference?

If the answer to this question is “yes” then could you please tell me by what rules govern the application for stalls and their use, and how one would apply to have a stall at the conference, and to whom?

Yours Faithfully

Ciaran Farrell

 

ED: Mr Farrell has now received the following response from Mrs Jo Parkinson, Director of Education and Professional Development, Royal Society of Medicine

That depending on the nature of the conference the RSM offers opportunities for companies and organisations to have a stand at a conference.

That the RSA can confirm that the MEA has been offered a stand at the Chronic Fatigue Syndrome conference on 28 April 2008, which has been accepted.  That no other organisations have approached the RSM for a stand; that applications for stands are reviewed as they come in.

 

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ME Association issues revised statement on RSM Conference

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on March 25, 2008 by meagenda

Today, the ME Association has issued a revision to an earlier statement which confirms the Royal Society of Medicine’s volte-face regarding the organisation’s request to have a stand at the CFS Conference on 28 April. The MEA is aware that the Planning Committee for this conference included Professor Peter White, Professor Simon Wessley, Professor Kam Bhui and Professor Matthew Hotopf – so it isn’t too difficult to understand why the predominance of speakers from a psychiatric / psychological background. 

The RSM has said “The RSM went through a process of establishing a planning group to discuss the content of this conference well over a year ago. The programme is now fixed and speakers have been engaged for some considerable time and it is too late to change the programme.”

It would be interesting to know whose initiative this conference was and who was responsible for the drawing up and selection of the members of the conference Planning Committee.  Dr John Scadding Chairs the Planning Committee.

 

Royal Society of Medicine meeting on CFS/ME – 28 April 2008

Statement by The ME Association

25 March 2008

The ME Association fully shares the concerns of a growing number of our members who have been contacting us about the strong psychiatric/psychological bias to the presentations that will be given to a meeting on CFS at the Royal Society of Medicine (RSM) on April 28.

When we were first contacted about this meeting by the RSM we included details on our website and in our magazine ‘Events Diary’ – as we believe everyone should be made aware of meetings and conferences that may be of interest to both people with ME/CFS and to health professionals.

We then asked the RSM if it would be possible for the MEA to have a stand at the conference in order to provide some balanced information. Our request for a stand, for which we were willing to pay, was initially turned down by the RSM.

We have just been informed that the RSM has changed its mind and that we shall now be able to provide information to attendees at this Conference. The trustees thought long and hard about whether, by attending this meeting, we were in any way endorsing it. Let me assure you, that is not our intention. Our judgement is that it is better to be at this meeting and provide balanced information to the attendees than to leave them to hear the overwhelmingly psychiatric / psychological views of the speakers at this meeting.

We shall provide information and offer discussion on:

  • research and the need for further biomedical research.
  • management of the illness, especially activity/energy management
  • why we are unable to endorse the NICE guideline
  • occupational health issues-as an alternative to the unbalanced information from NHS Plus.

It is hard to understand why the RSM has failed to grasp the opportunity to put on a meeting that really does take a broad look at an illness that is classified as neurological by the World Health Organisation. Our attendance at the meeting is an opportunity to redress the balance.

Neil Riley
Chairman of the ME Association

 

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RSM CFS Conference programme

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 March 23, 2008 by meagenda

“Planning Committee: Dr John Scadding (Chair), Miss Bina Arpino, Professor Peter White, Professor Simon Wessley, Professor Kam Bhui, Professor Matthew Hotopf.”

Ed: Ms Bina Arpino is a member of the RSM events admin staff, the others are all presenters at the conference or session chairs.

Click link for programme in PDF format

RSM CFS Conference programme PDF

Chronic Fatigue Syndrome

Monday 28 April 2008

Venue:
The Royal Society of Medicine,
1 Wimpole Street
London,
W1G 0AE

Chronic Fatigue Syndrome
Monday 28 April 2008

Aims and Objectives:

Chronic fatigue syndrome is a common and debilitating illness which can persist for years. Despite extensive research, the nature and pathogenesis of the condition remain enigmatic. There is continuing uncertainty and controversy concerning the physical and psychological components that may contribute to the initiation and perpetuation of the symptoms of chronic fatigue syndrome.

The guidelines published by NICE in August 2007 have met with a mixed response, but many have welcomed the development of evidence based advice about different treatment options.

The aim of this meeting is to take a broad look at chronic fatigue syndrome, examining its nature and definition, pathophysiology, epidemiology, clinical assessment and diagnosis, the patient perspective, and various approaches to treatment. This is a scientific conference and there will be an emphasis on an evidence based approach throughout.

Those attending the meeting will gain understanding of the various aspects of CFS being discussed, and be better able to help people suffering from this disabling condition.

The conference is intended for all health professionals who are involved in the assessment and treatment of those with CFS.

Planning Committee:
Dr John Scadding (Chair), Miss Bina Arpino, Professor Peter White, Professor Simon Wessley, Professor Kam Bhui, Professor Matthew Hotopf.

List of Contributors:
Dr John Scadding Dean, Royal Society of Medicine
Professor Peter White Barts & the London Queen Mary’s School of Medicine and Dentistry
Dr Anthony Cleare Institue of Psychiatry, London
Professor Simon Wessely King’s College London
Professor Anthony Pinching Peninsula Medical School
Professor Chris Dowrick Liverpool
Professor Matthew Hotopf Institute of Psychiatry, London
Professor Mansel Aylward Unum Centre for Psychosocial and Disability Research, Cardiff University
Sir Peter Spencer Action for M.E.
Professor Richard Baker Leicester University
Professor Kam Bhui Department of Psychiatry, Queen Mary School of Medicine and Dentistry
Professor Rona Moss-Morris University of Southampton
Dr Alastair Miller Royal Liverpool University Hospital

Accreditation:
5 CPD points (Applied for)

9.25 am Registration and Coffee

9.50 am Welcome address
Dr John Scadding
Dean, Royal Society of Medicine

SESSION ONE
Chair: Dr John Scadding
Dean, Royal Society of Medicine

9.55 am What is Chronic Fatigue Syndrome and what is ME?
Professor Peter White
Barts & the London, Queen Mary’s Schoolof Medicine and Dentistry

10.20 am Questions

10.25 am Pathophysiology
Dr Anthony Cleare
Institue of Psychiatry, London

10.50 am Questions

10.55 am Epidemiology
Professor Simon Wessely
King’s College London

11.20 am Questions

11.25 am Open discussion

11.40 am Coffee

SESSION TWO
Chair: Professor Anthony Pinching
Peninsula Medical School

12.05 pm Assessment: general practitioners’ approach
Professor Chris Dowrick
University of Liverpool

12.30 pm Questions

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

1.00 pm Questions

1.05 pm Lunch

SESSION THREE
Chair: Professor Mansel Aylward CB
Director, Unum Centre for Psychosocial and Disability Research, Cardiff University

2.00 pm M.E. – The patient persepective
Sir Peter Spencer
Action for M.E.

2.25 pm Questions

2.30 pm Management: NICE Guidelines
Professor Richard Baker
Leicester University

2.55 pm Questions

3.00 pm Tea

SESSION FOUR:
Chair: Professor Kam Bhui
Department of Psychiatry, Queen Mary School of Medicine and Dentistry

3.30 pm CBT and GET
Professor Rona Moss-Morris
University of Southampton

3.55 pm Questions

4.05 pm What drugs can I use?
Dr Alastair Miller Royal
Liverpool University Hospital

4.30 pm Questions

4.35 pm Open discussion

5.00 pm Close of meeting

 

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The Young ME Sufferers Trust: Statement on RSM CFS Conference

Posted in 25% ME Group, Royal Society of Medicine, The Young ME Sufferers Trust on March 22, 2008 by meagenda

Jane Colby, Executive Director, The Young ME Sufferers Trust, issued the following statement on 13 March:

The 25% Group have recently put out a statement which we are supporting as follows:

The Young ME Sufferers Trust supports the 25% ME Group on its stance over the RSM May conference.

The Trust does not consider that involvement with such a conference can do other than lend further credibility to those who already have undue influence on treatment for children with ME.

Families tell us that their children’s condition is either not being helped, or is being harmed by such dogma.

Jane Colby
Executive Director
The Young ME Sufferers Trust

PO Box 4347
Stock Ingatestone
Essex CM4 9TE
Tel 0845 003 9002

www.tymestrust.org

 

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