Two UK regional “CFS” conferences in September and October

Two UK regional “Chronic Fatigue Syndrome” conferences in September and October

There are two UK regional conferences on “Chronic Fatigue Syndrome” for medical professionals, students and allied health professionals only, being held by The Royal Society of Medicine (RSM), Wessex Region and The Royal College of Psychiatrists, South West Division Training (RCPsych SWDT) in September and October. 

Note that Dr Esther Crawley, who is presenting at both conferences, was a member of the NICE Guideline Development Group. Mary-Jane Willows, listed as a “Person with CFS/ME” is the CEO of the children and young person’s organisation, AYME. Professor Tony Pinching is a medical advisor to Action for ME (AfME). Professor Peter Denton White will again be speaking on “What is Chronic Fatigue Syndrome and what is ME?”. 

The ME Association published a summary of Professor White’s April presentation for the RSM which you can read here http://meagenda.wordpress.com/2008/05/15/mea-summary-of-prof-peter-d whites-rsm-presentation/

Webcasts of the presentation, together with those of the nine other London RSM conference speakers can be viewed at:
http://rsm.mediaondemand.net/events.aspx
 

The PDF Registration and Agenda form for the RSM’s controversial “CFS” Conference which took place in London, in April, had very usefully included the names of the members of its Planning Committee. It revealed that the planning group had comprised Dr John Scadding (Dean, RSM, Planning Committee Chair) and Miss Bina Arpino (RSM Events admin) and that the rest of the Planning Committee had been made up exclusively of psychiatrists: Professor Peter White, Professor Simon Wessley and his colleagues, Professors Kam Bhui and Matthew Hotopf. The names of Planning Committee members for this Thursday’s Bristol conference have not been given.

1] Royal Society of Medicine Wessex Region – Bristol

Chronic Fatigue Syndrome Conference

A one day regional conference organised by The Royal Society of Medicine Wessex
Region

Date: Thursday, 18 September 2008
Venue: UBHT Education Centre, Upper Mauldin Street Bristol BS2 8AE

A PDF of the Registration and Agenda form does not appear to be available from the RSM’s website but a copy can be found here and in the previous posting:

http://www.rheumatology.org.uk/education/event/rpcf1

For Registration information and Agenda see also:

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

“Chronic fatigue syndrome is a common and debilitating illness which can persist for years. Despite extensive research, the nature and pathogenesis of the condition remains 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.”

Accreditation: CPD: 5 credits

Agenda

9.30 am
Registration and Coffee

9.55 am
Welcome Address
Prof Mick Leary, Regional Sub Dean Royal Society of Medicine, Wessex

Session One
Chair: Prof Mick Leary, Regional Sub Dean Royal Society of Medicine, Wessex

10.00 am
What is Chronic Fatigue Syndrome and what is ME?
Prof Peter White, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, London

10.30 am
What we know about the genetics of CFS/ME
Dr Nicholas Timson, Department of Social Medicine, University of Bristol

11.00 am
Differential diagnosis of CFS/ME
Prof Damien Longson, Department of Psychiatry, North Manchester General Hospital

11.30 am
Discussion

11.40 am
Coffee

Session Two

Chair: Dr Esther Crawley, Royal National Hospital for Rheumatic Diseases, Bath

12.10 pm
What it feels like to have CFS/ME
Mary-Jane Willows, Person with CFS/ME

12.40 pm
Cognitive behaviour therapy for behaviour change in medical conditions
Dr Hazel O’Dowd, Team Leader CFS/ME Services, Frenchay Hospital, Bristol

1.10 pm
Discussion

1.20 pm
Lunch

Session Three

Chair: Dr Tim Chambers, Bristol Royal Children’s Hospital

2.20 pm
The NICE guidelines
[No speaker name given]

2.50 pm
The practical management of CFS/ME
Dr Esther Crawley, Royal National Hospital for Rheumatic Diseases, Bath

3.20 pm
Medication for symptom control. And beyond?
Prof Tony Pinching, Associate Dean for Cornwall & Professor of Clinical Immunology

3.50 pm
Questions and Discussion

4.20 pm
Close of Meeting

Contact: Joyce Achampong, RSM, 1 Wimpole Street, London W1G 0AE, UK
Fax: (+44) (0) 20 7290 2989 Tel: (+44) (0) 20 7290 2980
Email: joyce.achampong@rsm.ac.uk

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

2] Royal College of Psychiatrists South West Division Training SWDT

Conference on Chronic Fatigue Syndrome in Children and Young People

Date: Friday, 24th October 2008
Venue: St Cuthbert’s Conference Centre, Buckfastleigh, Devon

PDF of RCPysch conference flyer

http://www.rcpsych.ac.uk/pdf/Leaflet-CFS-final%20-%20web.pdf

Make SWDT part of your personal development plan

Meeting management, teaching and personal development needs for psychiatrists and other disciplines by providing top quality courses for consultants, retired consultants, staff grade doctors and associate specialists, specialist registrars, nurses, etc.

Objectives

. To enable psychiatrists and paediatricians to recognise and treat both the physical and mental symptoms of this illness

. To recognise the role that psychiatrists, paediatricians and GPs have in the treatment of sufferers

. To provide an opportunity for paediatricians and psychiatrists to explore both physical and mental aspects of this syndrome

. Explore the rights of children within medico legal boundaries

5 CPD Hours
This event is considered suitable for CPD subject to the agreement of the individuals peer group South West Division Training

Agenda

Chronic Fatigue Syndrome in Children and Young People

“Because Chronic Fatigue Syndrome can affect both the physical and mental health of children and young people this conference brings together paediatric and psychiatric doctors to explore both aspects of this illness.

“Our speakers have a great deal of experience in this area and the case studies they will present will aid indepth discussions.

“This conference is for Psychiatrists, Paediatricians, GPs and other disciplines working with patients with this syndrome”

The agenda for the day will be as follows:

9:00 Registration

9:30 ‘Chronic Fatigue Syndrome – Everything you need to know’
Dr Esther Crawley
Senior Clinical Lecturer Centre for Child and Adolescent Health
University of Bristol

10:15 The Role of the Psychiatrist’
Dr Sebastian Kraemer
Honorary Consultant, Tavistock Clinic, London and
Consultant Child and Adolescent Psychiatrist
Whittington Hospital NHS Trust, London

11:00 Coffee

11:30 ‘The pitfalls of clinical practice in CFS/ME’
Dr Bryony Hooper
Medicolegal Adviser
Medical Protection Society

12:15 ‘Development of services/role of the paediatrician’
Dr Gareth Roberts
Consultant Paediatrician in Child Health
North Bristol Health Trust

13:00 Lunch followed by an open meeting

14:30 Case presentations

15:30 Tea

16:00 Plenary with panel of speakers

16.30 Close

Contact:

Pat McPhee
South West Division Manager
Royal College of Psychiatrists
Coombe Lodge
Blagdon
North Somerset BS40 7RG
Tel: 01761 463979
Fax: 01761 463978
Email: pmcphee@southwestdiv.rcpsych.ac.uk

Registration Form and Agenda: Bristol regional RSM CFS Conference

Registration Form and Agenda: Bristol regional RSM CFS Conference, Thursday 18 September

Although no file for the Registration Form and Agenda for the RSM’s London Conference was available to download from the RSM’s website, in March/April, I did manage to track down a copy elsewhere, on the Events Diary page of the website of The British Society for Rheumatology.

This PDF document very usefully included the names of the members of the Planning Committee for the RSM’s London conference.  It revealed that the planning group had comprised Dr John Scadding (Dean, RSM, Planning Committee Chair) and Miss Bina Arpino (RSM Events admin) and that the rest of the Planning Committee was made up exclusively of psychiatrists: Professor Peter White, Professor Simon Wessley and his colleagues, Professor Kam Bhui and Professor Matthew Hotopf.

The British Society for Rheumatology Events Diary page for September also has a copy of the Registration Form and Agenda for the Bristol regional RSM CFS Conference which takes place, next Thursday.

This document does not include the names of the members of the Planning Committee for the Bristol event, but should anyone want a copy it can be accessed here, in PDF format:

RSM Bristol Registration and Agenda Form  [PDF 145 KB]

or from

The British Society for Rheumatology Events Diary page

Chronic Fatigue and Ethnicity, MRC, Bhui, Nazroo (PIs)

In the previous posting at:

http://meagenda.wordpress.com/2008/09/12/the-medical-research-council-a-case-to-answer-dr-neil-abbot/

Dr Neil Abbot refers to the study

3. An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

this is the study

Chronic Fatigue and Ethnicity, Medical Research Council, Prof K Bhui (PI)

Manchester University website list Prof James Nazroo as co Principal Investigator (PI) with Prof Kam Bhui and lists three co-researchers for this study as “Ashby, Wessely and White”.

Very little information appears to be available on the MRC site about this Chronic Fatigue and Ethnicity study.  In August, I submitted a request to the MRC for information under FOI.

I received the following response from the MRC on 18 August 2008 from Rosa Parker, Corporate Governance and Policy, Medical Research Council

18 August 2008

Freedom of Information Request

Thank you for your request under the Freedom of Information Act for a copy of the Study Protocol for the Professor Bhui’s MRC funded grant entitled ‘Chronic Fatigue and Ethnicity. I am sorry that your request was not acknowledged when it was received here.

As you may know summary information on this study, and other studies supported by the MRC in the field of CFS/ME is available on our website. I have also attached the information which we would normally provide on any grant we have funded, namely the title, principal applicant and the abstract of research, including the lay summary. This is attached for your information.

As a research project and not a trial, the project does not have a study protocol, however a description of the research proposal was included in the original application submitted to the MRC and we have interpreted this to be the subject of your current request. As applications are submitted to the MRC in confidence we are not able to provide copies of the research proposal at this stage and would consider that a number of exemptions would apply, particularly as the research is still ongoing.

As the grant is reaching its conclusion, and Professor Bhui and co-investigators prepare their research for publication, information included in the research proposals on the aims and conduct of the study will be published in due course.  In addition the MRC considers that the release of the research proposal before publication of the paper(s) may prejudice the commercial interests of the researchers in undertaking further research which may result from the findings, and from the methodologies and skills applied. We therefore consider that there are three Freedom of Information exemptions which apply to this request:

Section 22: Information intended for future publication

[2 of 3]

Section 36 (2)b: Effective Conduct of Public Affairs
Premature publication or disclosure of ongoing work is considered likely to undermine the progress of this publicly funded study.

Section 43 Commercial Interests
Disclosure of the information requested is likely to prejudice the commercial interests of the researchers in undertaking further research resulting from their findings.

As the information you have requested will be published in the final scientific paper, or papers, the  MRC does not consider it to be in the public interest to release the information you requested into the public domain at present. It is thus our view that it would be inappropriate to release the information you requested before the research project has been fully completed and the findings have been published. Such an outcome would be considered to prejudice the effective conduct of public affairs in undermining the progress, and inhibiting the impact of, publicly funded research.

I hope that you are satisfied that you find the enclosed information helpful and that your request has been handled appropriately. If not, you may appeal using the MRC’s complaints procedure.

Details are on the MRC website at: www.mrc.ac.uk/index/about/about contact/aboutcomplaints_procedure.htm , alternatively you may contact the MRC Complaints Officer by email at customer.service@headoffice.mrc.ac.uk or write to The Complaints Officer, Medical Research Council, 20 Park Crescent, London W1B 1AL.

If, following the Complaints Officer’s reply, you remain dissatisfied; you may contact the Information Commissioner. Details of how to take your complaint further are at www.informationcommissioner.gov.uk .

Yours sincerely
Rosa Parker Corporate Governance and Policy
Direct line 020 7670 5477
e-mail: rosa.parker@headoffice.mrc.ac.uk
web: www.mrc.ac.uk

[Page 3 of 3]

Principal Applicant: Professor K Bhui, Queen Mary, University of London
Award: £162,146 Tenure of grant: 01/06/2006-30/11/2008

Title: Chronic Fatigue & Ethnicity

Scientific Abstract:

Chronic fatigue syndrome (CFS) causes significant disability. Early work suggested that CFS was more common in Caucasians than other ethnic groups; recent research casts doubt on this. The Ethnic Minorities Psychiatric Illness Rates in the Community study (EMPIRIC) provides a unique opportunity to answer this question. It included population samples of six ethnic groups: Black Caribbean (N=694), Irish (733), Indian (643), Pakistani (724), Bangladeshi (650), and White British (837). Questions assessed physical health, common mental disorders (CIS-R), physical function (SF-12), emotional strain, social support, work stress, coping and health service use. Ten questions about fatigue assessed duration, intensity, and effort to overcome fatigue; from these a CFS-like illness can be defined. A qualitative component assessed illness models and coping behaviours. The proposed two year quantitative and qualitative investigation of EMPIRIC data will assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours.

Lay Summary:

This study investigates fatigue and chronic fatigue like illnesses in six ethnic groups. Previous studies show that chronic fatigue related illnesses are uncommon among ethnic groups. Studies in the US show a higher prevalence of fatigue and associated illnesses among ethnic groups. In the UK we have inadequate information on the largest ethnic groups. If there are ethnic variations in prevalence, then risk factors may differ across groups, and this may give us clues about how fatigue and related illnesses are influenced by cultural factors, or whether they can be understood as a response to cultural adaptation, isolation, or other stressors such as discrimination. We can also find out if the frequency of service use, and personal explanations that people give for their condition, influence the likelihood of having a fatigue related illness. Therefore, at the moment, we do not know whether the interventions offered should be changed for ethnic groups, or whether ethnic groups present with similar syndromes that are just not recognized, perpetuating disability and a lack of timely intervention. We also do not know whether there are cultural rather than social factors that are neglected, not only in ethnic groups, but also in majority population. For example, coping behaviours such as social support, or exercise, or leisure activities, or religious activities may help some ethnic groups to reduce their risk of fatigue like illness. Findings such as this may help refine or develop future interventions. The study we propose exploits data that is already collected and is available for further analysis. It is deposited in a data archive which is accessible to the public and research community. Therefore the costs of the work are minimized. We will be able to analyze these data to identify which social, and cultural risk factors are influential related to having fatigue like illnesses, and to common mental health problems. The risk factors can be discerned from the statistical analyses, from the qualitative interviews and transcripts, and from questions about what the subject thought was the cause of fatigue: amongst the explanations is exercise, medication, illness etc. We therefore have a personal view from the subject, alongside statistical information to assess relevance of specific risk factors.