Daisymay
Senior Member
- Messages
- 754
http://www.investinme.org/IIME Statement 2012-05-31.htm
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.
The IiME proposal is based around using of existing and developed services and facilities to initiate an examination and research facility for ME - where proper diagnosis can be made and translational biomedical research can be established.
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
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
The 7th Invest in ME International ME/CFS Conference 2012
Building a Future for Research into ME Clinical and Research
http://www.investinme.org/IiME Conference 2012/IiMEC7 Home.htm
Support ME Awareness - Invest in ME
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.
The IiME proposal is based around using of existing and developed services and facilities to initiate an examination and research facility for ME - where proper diagnosis can be made and translational biomedical research can be established.
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
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
The 7th Invest in ME International ME/CFS Conference 2012
Building a Future for Research into ME Clinical and Research
http://www.investinme.org/IiME Conference 2012/IiMEC7 Home.htm
Support ME Awareness - Invest in ME