
Invest in ME Research International ME Conference 2009
IIMEC4 - Building a Future for Research into ME

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It was our pleasure to welcome Hillary Johnson as our guest in London for the Invest in ME pre-conference.
Her presentation was on CDC's influence on ME Research Throughout the World.
The presentation was impressive and shocking, telling some of the inside story of how ME has been manipulated by a government agency.
This had so many parallels to the concerted campaign to misinform which had occurred in the UK over the years.
Hillary's presentation will be available on our 2009 conference DVD but she has also added it to her web site - http://oslersweb.com.
The conference version of the Journal of IiME contained all of the abstracts for the conference - [journals.shtml#pre2010].
The Whittemore-Peterson Institute for Neuro-immune Diseases was represented with Annette Whittemore giving the conference keynote speech.
Dr Dan Peterson gave a comprehensive lecture based on his 25 years of clinical experience and the solid research using being performed at the WPI.
This was followed by a presentation showing the dynamics and power of science by the WPI's research director Dr Judy Mikovits.
We looked forward to seeing this important work being published and validated.
Professor Garth Nicolson gave a very good overall lecture on the role of chronic infections and complex illnesses. His presentation was full of information to show the difficulties researchers and clinicians are faced with when meeting this group of patients.
Professor Nyland based his lecture on two recent epidemics in Norway. This has given researchers there a chance to do follow up studies on the patients who have remained ill with ME like illness. One outbreak was due to Giardia parasite and the other due to Legionella bacterium.
Dr Baumgarten showed us what can be done with public funds when politicians are supportive and patients' voice is being listened to. The importance of defining the patient base carefully using the Canadian consensus document was made clear and she confirmed the inadequacies of the NICE guidelines for diagnosis.
Dr Kerr had replicated and expanded on his previous gene expression work and he showed us his usual high quality research. His team has looked at various infections linked with ME/CFS (EBV, parvovirus, enterovirus, coxiella burnettii and chlamydia pneumoniae) and found among other things that the late phase marker for EBV ( nuclear antigen IGG) varied among patients compared to normal controls with patients having lesser levels. Dr Kerr and his team have also looked at the possibility of developing a SNP (single nucleotide polymorphism) based test for the genomic subtypes.
Dr Chia showed us his excellent, solid research on enteroviruses which is confirming previous work done in the UK. He is concentrating his efforts in finding antiviral therapy against enteroviruses. He has found Oxymatrine to be beneficial for about 53% of his patients.
Professor De Meirleir preceded his conference presentation with a press conference in London on the day before (May 28, 2009) entitled 'ME: End of an Era of Medical Negation' unveiling his findings from recent research which has included examining many patients in Norway and displayed conclusions regarding the complex mechanisms of ME/CFS pathogenesis, a diagnostic test, and directions for therapeutic strategies.
A separate study by Professor De Meirleir et al. has been published In Vivo, http://bit.ly/fqKF5. Here they observed intestinal overgrowth of Gram positive D/L lactate-producing bacteria which are also known to produce H2S [hydrogen sulphide] in presence of certain heavy metals as a survival defence mechanism.
Also present at the conference was Marian Dix Lemle who is a science writer and has published a hypothesis on hydrogen sulphide and CFS which can be found here http://linkinghub.elsevier.com/retrieve/pii/S0306-9877(08)00391-5
The progress being made in biomedical research into ME, despite the lack of adequate funding by national organisations, such as the UK Medical Research Council or the US CDC, again demonstrated that there is absolutely no value in attempting to join biomedical researchers with those who advocate the psychosocial view of ME (as advocated by the MRC and cynically implied by NICE).
Invest in ME published its Journal of IiME [click here] at the conference and abstracts of the conference presenters' presentations are included therein.
Conference Presentations from IIMEC4
Our Sponsors for IIMEC4
Invest in ME wish to thank the following organisations for helping to sponsor the 4th Invest in ME International ME Conference 2009.
The Irish ME Trust
The Irish ME Trust have sponsored a speaker at all of our conferences and we would like to thank them for their continued support.
The Alison Hunter Memorial Foundation
The Alison Hunter Memorial Foundation of Australia has agreed to sponsor the Invest in ME International ME/CFS Conference 2009 by providing funds for the production of the DVD. This will enable IiME to provide another CPD-accredited conference on DVD to those around the world who would wish to be present at the conference but cannot.
Invest in ME wish to thank the AHMF for this supremely generous offer - an offer which allows us to achieve another of the objectives of the conference. The AHMF is an inspirational and enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Read more click here.
Hillary Johnson
Prior to IIMEC4 the charity arranged a pre-conference dinner evening with guest speakers Hillary Johnson and Dr Daniel Peterson.
We hope that you have enjoyed the conference videos.
Invest in ME Research is a charity of volunteers attempting to make progress in research into ME
We welcome support to enable us to continue our efforts.
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IiMER Links
Professor Jonathan Brostoff
Professor Jonathan Brostoff MA DM DSc(Med) FRCP FRCPath FIBiol - Senior Research Fellow and Professor Emeritus of Allergy and Environmental Health at Kings College, London
Jonathan Brostoff is Senior Research Fellow and Professor Emeritus of Allergy and Environmental Health at Kings College, London. He was the Foundation Professor of Allergy and Environmental Health and Director of the Centre for Allergy Research at University College London. Whilst at University College Hospital he was Physician in charge of the Allergy Clinic. He is recognized as a leading international authority on food allergy and intolerance. Professor Brostoff was involved in one of the few, and much-quoted Spect scan studies of ME patients [Brainstem perfusion is impaired in patients with chronic fatigue syndrome. Costa DC, Tannock C and Brostoff J. Quarterly Journal of Medicine 1995:88:767 773]
Professor Garth Nicolson
Similar Infections Found in ME/CFS and Neurodegenerative and Neurobehavioral DiseasesThe Institute for Molecular Medicine at California
Professor Garth Nicolson PhD: - Research Professor at the Institute for Molecular Medicine, Laguna Beach, California, USA.
President, Chief Scientific Officer and a Research Professor at the Institute for Molecular Medicine, Laguna Beach, California, USA. Conjoint Professor, Faculty of Science and Technology, University of Newcastle, Australia. Professor of Integrative Medicine, Capital University of Integrative Medicine, Washington DC. Professor Nicolson has published over 550 papers, three of them current content citation classics, and his recent publications include: Chronic Fatigue Syndrome patients subsequently diagnosed with Lyme Disease Borrelia burgdorferi: evidence for Mycoplasma species co-infections; Chronic infections in neurodegenerative and neurobehavioral diseases; New emerging infections: Their development, testing and resulting disease.
Annette Whittemore
Keynote SpeechWhittemore Peterson Institute for Neuroimmune Diseases, Reno, Nevada, USA
Whittemore Peterson Institute for Neuroimmune Diseases, Reno, Nevada, USA
Founder and President of the Whittemore Peterson Institute for Neuroimmune Diseases, Reno, Nevada, USA.
The Institute is located on the medical campus of the University of Nevada.
Its mission is to serve those with complex neuro-immune diseases such as ME/CFS,
viral induced central nervous system dysfunction and fibromyalgia. Annette Whittemore
graduated in Elementary and Special Education at the University of Nevada and taught
children with neuro-cognitive deficits, such as those found in autism, ADD, and learning
disabilities. As the president and director of the current operations at the Institute
Annette supports the basic and clinical research program, and actively recruits physicians
and other support personnel for the Institute.
Professor Harald Nyland
Epidemics & ME: Lessons from the Giardia epidemic in NorwayDepartment of Neurology, Haukeland University Hospital, Bergen, Norway
Professor Harald Nyland MD, PhD: - Department of Neurology, Haukeland University Hospital, Bergen, Norway
Professor Nyland has seen several thousand ME patients, among them many severely ill. His recent research involves an ME/CFS Epidemic Following a Giardia lamblia Infection in Bergen. Professor Nyland was knighted in 2007 for his services of over 30 years for MS patients in Norway.
Dr Jonathan Kerr
Dr Jonathan Kerr
Jonathan Kerr qualified in medicine from Queen’s University of Belfast (1987), and completed training as a medical microbiologist (1995). He has worked as a microbiologist in Belfast, Manchester and London, taking up post as a Consultant Senior Lecturer in Microbiology at Royal Brompton Hospital / Imperial College in June 2001, and then Sir Joseph Hotung Clinical Senior Lecturer in Inflammation at St George’s University of London in 2005. His interest in Chronic Fatigue Syndrome (CFS) began during a study of the consequences of parvovirus B19 infection, when he showed that a percentage of infected cases developed CFS which persisted for several years. He is now the principal investigator in a programme of research in CFS. This involves development of a diagnostic test using mass spectrometry, analysis of human and viral gene expression in the white blood cells, and clinical trials of immunomodulatory drugs. Dr. Jonathan Kerr and colleagues at St. George’s University of London reported in the July 27, 2005 issue of the Journal of Clinical Pathology that a preliminary study of 25 CFS patients and 25 matched healthy controls revealed abnormalities in 35 of 9,522 genes analyzed using microarray technology. Polymerase chain reaction studies showed the same results for 16 of these genes. The study, and its results, raises some important questions. The first of which pertains to the need for funding of microbiological CFS research. He leads a group of 5 scientists at St George's.
His research on gene expression has resulted in several published papers – including evidence of 7 distinct sub types of ME/CFS.
Dr. Kerr also runs a ME/CFS research program. He studied the consequences of parvovirus B19 infection in ME/CFS and showed that a percentage of infected cases developed ME/CFS which persisted for several years. He has reported 88 human genes whose dysregulation is associated with CFS, and which can be used to derive genomic CFS subtypes which have marked differences in clinical phenotype and severity.
Other Links
Dr Barbara Baumgarten
Services for correct diagnosis and Management/Treatment of MEHead of ME-centre at Ullevål University Hospital, Oslo, Norway.
Dr Barbara Baumgarten MD
Head of ME-centre at Ullevål University Hospital, Oslo, Norway. Dr Barbara Baumgarten was born in Hamburg, Germany, and moved to Norway in 1980.
She studied medicine at the University of Oslo, graduated in 1992. From 1992-93 she worked at a hospital in internal medicine and surgery. From 1993 she has been working in General Practice, with a two year assignment at a nursing home.
Since 1996 she has had her own practice and has been seeing patients with ME since 1997.
From April 2006 she has been working one day a week as a GP at the department for infectious diseases, Ullevål University Hospital, Oslo. Her work there was to look at the need of specialized medical services for ME-patients.
That has resulted in a new ME-clinic. Since August 2008 her my main job at Ullevål University Hospital has been leader for the new ME-center, which was officially opened at December 11th 2008.
The ME Centre in Oslo is unique in that patients have been closely involved in its formation.
Dr Baumgarten has given many lectures about ME for GP’s, at hospitals and for the Norwegian ME Association.
She is a board member at the Oslo branch of the Norwegian Medical Association.
Professor Kenny De Meirleir
Research on Extremely Debilitated M.E. Patients Reveals the True Nature of the DisorderDirector of the Human Performance Laboratory and Fatigue Clinic, Vrije Universiteit Brussels
Professor De Meirleir is a professor of Physiology and Internal Medicine at Free University of Brussels in Belgium. He is co-editor of Chronic Fatigue Syndrome: A Biological Approach, co-editor of the Journal of Chronic Fatigue Syndrome, and reviewer for more than 10 other medical journals. Dr. De Meirleir was one of four international experts on the panel that developed the Canadian Consensus Document for ME/CFS. He assesses/treats 3,000 to 4,000 ME/CFS patients annually. Professor Kenny L. De Meirleir, MD received his medical degree at Vrije Universiteit Brussel, Magna cum laude. His research activities in Chronic Fatigue date back to 1990. His other research activities in exercise physiology, metabolism and endocrinology have led to the Solvay Prize and the NATO research award. He is director of the Human Performance Laboratory and Fatigue Clinic at the Vrije Universiteit Brussel, as well as consultant in the Division of Cardiology and director of the cardiac rehabilitation program at Vrijie Universiteit Brussel.
Dr Dan Peterson
Treatment Regimes for the Most Severe CasesWhittemore-Peterson Institute, Nevada, USA
Dr Daniel L. Peterson, Whittemore Peterson Institute for Neuroimmune Diseases, Reno, Nevada, USA
Daniel L. Peterson, M.D., is an internist in Incline Village, Nevada and recognized medical expert on CFS/ME. Dr. Peterson is founder of Simmaron Research, and serves on its Scientific Advisory Board. Dr. Peterson has devoted 25 years of his clinical career to diagnosing and caring for patients with CFS/ME and related neuroimmune disorders, and collaborating with researchers to better understand the illness. Dr. Peterson’s repository of more than 1,000 patient biological samples and records is a rich resource for research studies. His experience as both a clinician and a research collaborator provides a unique perspective on CFS/ME for developing translational science.
With over 25 years of medical practice, Dr Daniel L. Peterson has become a sought-after internist for diagnosing difficult and complex medical cases.
When several patients in Incline Village became ill with symptoms that resembled persistent mononucleosis, Daniel Peterson was one of the first physicians to recognize an outbreak of what is known as ME/Chronic Fatigue Syndrome (ME/CFS). He became a pioneering physician and researcher in understanding the biological characteristics and methods for diagnosing, managing and treating ME/CFS. He has also performed major studies of Ampligen as a treatment for ME/CFS, and studying the possible role of human herpes virus 6 (HHV-6) in CFS patients.
Dr. Peterson's experience as both a clinician and a research collaborator provides a unique perspective on CFS/ME for developing translational science.
Other Links
Professor Basant Puri
Professor Basant K. Puri
Professor Basant K. Puri is both a medical practitioner, working as a consultant at Hammersmith Hospital in London, and a senior scientist, working at Imperial College London. He is head of the Lipid Neuroscience Group at Imperial College and is the author of over 130 peer-reviewed medical and scientific papers and over 30 books.
Dr John Chia
Dr John Chia, Infectious Disease Specialist, Torrance, California, USA
Dr John Chia is an infectious disease specialist practicing in Torrance, California, USA and has published research recently (Chronic fatigue syndrome associated with chronic enterovirus infection of the stomach) on the role of enteroviruses in the aetiolgy of ME/CFS – an area which has been implicated as one of the causes by a number of studies. There are more than 70 different types of enteroviruses that can affect the central nervous system, heart and muscles, all of which is consistent with the symptoms of ME/CFS. By analyzing samples of stomach tissue from 165 patients with CFS, Dr Chia's team discovered that 82% of these individuals had high levels of enteroviruses in their digestive systems. Dr Chia's research may result in the development of antiviral drugs to treat the debilitating symptoms of ME/CFS.
Dr Jean Monro
Dr Jean Monro - Medical Director of the Breakspear Hospital, UK
Dr Jean Monro is the Medical Director of the Breakspear Hospital and is an internationally recognised specialist in environmental medicine. Dr Monro is a Fellow of the American Academy of Environmental Medicine, a Board Certified US examination. Dr Monro was Medical Advisor to Sanity and Medical Advisor to the Coeliac Association. In early 2007, Dr Monro was asked to be a witness for the House of Lords' Select Committee on Science and Technology on allergy treatments.
Dr Judy Mikovits
Dr Judy Mikovits, Research Director, Whittemore Peterson Institute, Nevada, USA
Dr Judy Mikovits obtained her Ph.D. in Biochemistry and Molecular Biology from George Washington University. She is Research Director at the Whittemore Peterson Nevada CFS centre for Neuro-Immune disorders and has co-authored over 40 peer reviewed publications that address fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology.
Plenary Session
At the end of the conference more questions were taken from the audience with Professor Jonathan Brostoff mediating. .
We hope that you have enjoyed the conference videos.
Invest in ME Research is a charity of volunteers attempting to make progress in research into ME
We welcome support to enable us to continue our efforts.
-
IiMER Links
IIMEC4 Interviews with Speakers
Priorto the IIMEC4 conference Invest in ME arranged interviews with some of the speakers by Professor Malcolm Hooper.
We hope that you have enjoyed the conference videos.
Invest in ME Research is a charity of volunteers attempting to make progress in research into ME
We welcome support to enable us to continue our efforts.
-
IiMER Links