BRMEC14 Colloquium 2024
Advancing biomedical research into ME and related post-infectious illnesses
To raise awareness of Myalgic encephalomyelitis, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME 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 colloquium which met in London.
BRMEC2 Introduction Statements to BRMEC2 - CAWG
Kathleen McCall
Chairman 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).
Christine Hunter AM
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.
BRMEC2 Media Briefing Myalgic Encephalomyelitis Clinical Autoimmunity Working Group Meeting
| BRMEC2 - CAWG Day 2 | |
|---|---|
| Overview/summary of previous day Objectives of DAY 2 | Tom Wileman PhD Don Staines MBBS MPH |
| Developments in neuropathology | Hugh Perry PhD Professor University of Southampton Experimental Neuropathology Centre for Biological Sciences Southampton UK |
| MRI evidence: Microvascular changes in CNS | Richard Kwiatek MBBS FRACP Lyell McEwin Hospital Senior Visiting Medical Specialist in Rheumatology Adelaide Australia |
| Genetics and informatics | Andy Kogelnik MD PhD Director Open Medicine Institute Mountain View CA USA |
| Plenary session | Chair: Ian Gibson PhD |
| 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 |
| 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 |
| Summary and future directions | Chair: Ian Gibson PhD |
| Acknowledgements and Close | Invest in ME / Alison Hunter Memorial Foundation |
INTERNATIONAL SCIENTISTS EXPLORE AUTOIMMUNITY IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
30 - 31 May 2012, LONDON, UK
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
Invest in ME info@investinme.org
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, UK
- GRIFFITH UNIVERSITY, School of Medical Science, Griffith Health Institute, Gold Coast, Australia
- ALISON HUNTER MEMORIAL FOUNDATION, AUSTRALIA
- INVEST IN ME, UK
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 Oystein 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