Invest in ME Statement

Clinical Autoimmunity Working Group

Building a future for research into ME

 

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group which met in London on 30-31st May 2012.

 

 

MEDIA BRIEFING

CLINICAL AUTOIMMUNITY WORKING GROUP


 

MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

CLINICAL AUTOIMMUNITY WORKING GROUP MEETING

Wednesday 30 – Thursday 31 May 2012

LONDON

UNITED KINGDOM

  

WELCOME ADDRESS

DAME BRIDGET OGILVIE, AC DBE FRS

 

CONVENORS

BOND UNIVERSITY

Population Health and Neuroimmunology Research Unit

Faculty of Health Sciences and Medicine

Gold Coast Australia

 

UNIVERSITY OF EAST ANGLIA

Biomedical Research Centre

Faculty of Science

Norwich, United Kingdom

 

 

GRIFFITH UNIVERSITY

School of Medical Science

Griffith Health Institute

Gold Coast, Australia

 

 

ALISON HUNTER MEMORIAL FOUNDATION

AUSTRALIA

 

INVEST IN ME

UNITED KINGDOM

 

INTERNATIONAL SCIENTISTS EXPLORE AUTOIMMUNITY IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME

Medical and scientific experts from around the world convened in London on 30 and 31 May to discuss recent scientific developments in understanding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

Co-Chair of the clinical autoimmunity working group for ME/CFS, public health physician Dr Don Staines stated ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin’. 

While the clinicians who made the discovery, Dr Oystein Fluge and Dr Olav Mella  and co-workers remain guarded in drawing unwarranted conclusions from the study published in PLoS late last year, further studies are now being planned in the hope of extending the study to a number of clinical sites and to increase the number of patients in the studies.

 Dr Staines said ‘The findings of Drs Fluge and Mella and their co-workers are consistent with theories previously published that ME/CFS may be an autoimmune disease. Despite compelling evidence that this disease is linked epidemiologically to infection and the disorder possibly being a post-infection disturbance of the immune system, little funding has gone into studies of autoimmunity. This is clearly a multi-system illness which has been badly managed in terms of the research agenda.’

Experts who will attend the meeting include Professor Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins Hospital (USA), Professor Stephen Miller (USA), Dr Mario Delgado (Spain) and Professor Hugh Perry, the chairman of the UK Medical Research Council Neurosciences and Mental Health Board. Immunological discoveries which may serve to act as biomarkers for ME/CFS will be presented by Dr Sonya Marshall-Gradisnik,  Bond University, Australia.

 

Alison Hunter Memorial Foundation chunter@ahmf.org  +61 2 99586285
Invest in ME info@investinme.org 07759 349743

           

PARTICIPANTS

Dr Amolak Bansal MD
 
Dr. James N Baraniuk MD
 
Dr Monica Carson PhD
 
Professor Simon Carding PhD
 
Dr Abhijit Chaudhuri MD PhD
 
Dr Mario Delgado PhD
 
Dr Řystein Fluge MD PhD
 
Dr Ian Gibson PhD
 
Dr Konstance Knox PhD
 
Dr Andreas Kogelnik MD PhD
 
Dr Richard Kwiatek MBBS FRACP
 
Professor Stephen D. Miller PhD
 
Dr Sonya Marshall-Gradisnik PhD
 
Professor Olav Mella MD PhD
 
Dame Bridget Ogilvie AC, DBE, FRS
 
Professor Hugh Perry PhD
 
Dr Daniel Peterson MD
 
Professor Noel Rose MD PhD
 
Dr Katherine Rowe MD MBBS FRACP MPH DipEd
 
Dr Rosamund Vallings MD
 
Professor Tom Wileman PhD
 

 

PROGRAMME - DAY 1

9.00

Welcome address

Dame Bridget Ogilvie AC DBE FRS

9.10

Overview of criteria required to support an autoimmune basis to ME/CFS

Noel Rose MD PhD  Professor Johns Hopkins Bloomberg School of Public Health Director Center for Autoimmune Disease Research Baltimore USA

9.50

Review of experience of Rituximab in ME/CFS and a case for extending clinical trials as per Norwegian protocols or other parallel trials

Oystein Fluge MD PhD  University of Bergen Institute of Medicine, Section for Oncology Haukeland University Hospital Bergen Norway

Olav Mella MD PhD  Professor University of Bergen Institute of Medicine, Section for Oncology, Helse Bergen Haukeland University Hospital Bergen Norway

10.30

Break

 

10.50

Regulation of EAE using antigen-specific tolerance and B cell targeting

Stephen Miller PhD  Professor Northwestern University Feinberg School of Medicine Judy Guggenheim Research Professor of Microbiology-Immunology Chicago USA

11.30

Potential for pathogenicity of autoimmunity to vasoactive neuropeptides and their receptors

Mario Delgado PhD  Head of Department of Immunology and Cell Biology The Institute of Parasitology and Biomedicine Granada Spain

12.15

Lunch

 

1.00

Exploring autoimmune pathomechanisms in ME/CFS

Sonya Marshall Gradisnik PhD  Associate Professor Bond University Faculty of Health Sciences and Medicine Gold Coast Australia

1.40

Do symptoms match putative autoimmune targets in ME?

Don Staines MBBS MPH  Public Health Medical Officer Gold Coast Public Health Unit

Associate Professor (Adjunct) Bond University, Griffith University, Queensland Australia

2.10

Symptomatology of the clinical spectrum of ME/CFS

Daniel Peterson MD  Adjunct Professor Bond University Gold Coast

CEO Simmaron Research Foundation for Chronic Fatigue Syndrome Incline Village USA

3.15

Break

 

3.30 Plenary session

Chair: Ian Gibson PhD

5.30 Close
   

 

 

PROGRAMME - DAY 2

9.00

Overview/summary of previous day - objectives of DAY 2

Tom Wileman PhD   Don Staines MBBS MPH

9.10

Developments in neuropathology

Hugh Perry PhD  Professor University of Southampton Experimental Neuropathology Centre for Biological Sciences Southampton UK

9.30

MRI evidence: Microvascular changes in CNS (DVD

Richard Kwiatek MBBS FRACP  Lyell McEwin Hospital Senior Visiting Medical Specialist in Rheumatology Adelaide Australia

10.20

Break

 

10.50

Genetics and informatics

Andy Kogelnik MD PhD  Director Open Medicine Institute Mountain View CA USA

11.20

Plenary session

Chair: Ian Gibson PhD

12.00

Lunch

 

12.45

Lessons from neuropathology of ME/CFS

Abhijit Chaudhuri DM MD PhD FACP FRCP Glasg FRCP Lond  Senior Consultant Neurologist Queen’s Hospital Romford Essex Centre for Neurological Sciences UK

1.15

Plenary Session – Open discussion: collaboration strategies which might target research agencies such as NIH (US), NHMRC (Aus), MRC (UK). Consider developing an overarching strategic approach.

Chair: Ian Gibson PhD

2.45

Break

 

3.00

Summary and future directions

4.00

Acknowledgements and Close

Alison Hunter Memorial Foundation

Invest in ME

 

 

Alison Hunter Memorial Foundation   

People with ME face enormous obstacles to access health care. Among the impediments over past decades has been research which has shifted emphasis to fatigue and fatigue states with scant regard for the myriad yet distinguishing neurological, autonomic, and gastrointestinal features of ME. Semantics and biased attributions continue to deny the severely ill, both child and adult, the right to care which addresses their acute and chronic medical needs without fear.

The Alison Hunter Memorial Foundation was established in 1998 through the initiative of the Public Interest Advocacy Centre, Sydney. The Foundation has a primary interest in the medical, legal and social needs of people with ME and the clinical documentation of severity.

The Foundation supports biomedical research.

Christine Hunter AM     www.ahmf.org

 

Invest in ME

There is an urgent need for a coordinated strategy of biomedical research into myalgic encephalomyelitis (ME). Good quality collaborative research efforts lead to understanding of the disease and better patient care and education of health care professionals.
The approach to treating ME must reflect the latest biomedical research evidence and ME needs to be accepted as a mainstream disease requiring major attention from the medical profession and research institutions.  Patients need access to knowledgeable ME consultants who can make correct diagnoses using proper guidelines and need to understand the disease in its all phases.
Invest in ME is a UK charity established in 2006 by ME patients and parents of children with ME.  The charity was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.

Our efforts are focused on setting up a UK Centre of Excellence which will provide proper examinations and diagnosis for ME patients and initiate a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Invest in ME - Charity Nr. 1114035
www.investinme.org

 

SPONSORS

Alison Hunter Memorial Foundation

Invest in ME

Department of Science, Information Technology, Innovation and The Arts, Queensland Government Australia

 

 

 

 

Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ, UK

www.investinme.org

 

Support ME Awareness - Invest in ME

May 2012