Initiating ME Research IIMEC1

IIMEC1 London, May 2006

Our first Invest in ME International ME Conference - held in 2006 - IIMEC1 - took place on 12th May 2006 in London, less than a month after Invest in ME was registered as a UK charity, and only five months after planning began for the conference.

The theme for IIMEC1 was Initiating ME Research.

We welcomed international researchers and clinicians discussing current and research into ME.

The conference was given the maximum 6 points CPD (Continuous Professional Development) accreditation by the Royal Colleges. The conference provided a chance to hear the latest news on ME from the most prominent speakers within the ME community - on ME Awareness Day, in ME Awareness Month 2006. Invest in ME hoped that this conference would highlight the need for publicly funded biomedical research which would lead to treatment and a cure for this devastating illness - an illness which is about 5 times more common in the UK than HIV/AIDS.

Why a Conference? Invest in ME is about education, publicising and lobbying regarding the treatment of ME sufferers in the UK and regarding the need for public funding of biomedical research into ME. In recent years there are many who feel that ME Awareness Week (as it had become) had passed with too little public attention gained, little co-ordination of events and limited success in rallying people behind our cause, all of which had produced little or no long term benefit for the ME sufferers. Therefore, we considered how we could complement all the on-going good efforts and attract a much larger interest from professionals in the medical, healthcare, academic and media worlds that could also raise the profile politically.

Since IiME had forged links with academia and some politicians, we thought that a public event to expose current activities to a wider audience would be of benefit to all.

We believe it is important to provide a possibility for people within government, health departments, social services and schools to be able to be informed of the true nature of ME. By attracting some of the most powerful speakers possible, at one conference, we believed we could gain much publicity and awareness of ME as possible.

Why London?

We chose London to attract major presenters, to allow the possibility for known professionals and researchers to attend and focus attention on raising awareness in the heart of power in the UK - Westminster.

SOur hope was to attempt to attract clinicians, researchers, healthcare staff, charities, support groups and patients and carers to participate in research discussions and allow unique networking opportunities and increase the potential for one of the charity's main objectives - international collaboration between researchers.

IIMEC1 in Journal of Clinical Pathology

The presentations from the International ME Conference in London during May 2006 have now been adapted and published in the Journal of Clinical Pathology.

IIMEC1 Conference Agenda 2006

Lecture Theatre Birdcage Walk

Conference Speakers

Former Dean of Biological Sciences, UEA

Dr Ian Gibson, former Labour MP for Norwich North, worked at University of East Anglia for 32 years, became Dean of the school of biological sciences in 1991 and was head of a cancer research team and set up the Francesca Gunn Leukaemia Laboratory at UEA.

Internal medicine, Saanichton, British Columbia Principal author of the Canadian Guidelines

Bruce M. Carruthers, MD, CM, FRCP(C) was born in India. He has had an internship at the Charity Hospital of Lousiana, New Orleans, residencies in the Internal Medicine at the Hospital of the University of Pensylvania, Philadelphia, research fellowships at the American Diabetes Association in Philadelphia, and at the Clinical Investigation Unit of Shaughnessy Hospital, Vancouver. Dr. Carruthers has also had a fellowship of the Royal College of Physicians and Surgeons of Canada - specialising in Internal Medicine - and was a Research Scholar of the Medical Research Council of Canada. He has specialised in diabetes and metabolic disorders as well as continuing clinical research in cellular information processing, diabetes mellitus and metabolic problems. Dr. Carruthers still maintains a private practice as Consultant in Internal Medicine with a special interest in chronic fatigue, chronic pain problems of soft tissue origin and health enhancement. Since 1998 Dr. Carruthers has been concentrating on writing. From 1999-2003 he arranged and was the principal author for Canadian Consensus article 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Case Definition, Diagnostic and Treatment Protocols' which was published in Journal of Chronic Fatigue Syndrome 2003, 11: 7-115. From 1999-2003 he arranged and was the principal author and co-editor of 'Fibromyalgia Syndrome: Canadian Clinical Working Group Case Definition, Diagnostic and Treatment Protocols - a Consensus Document' which was published in Journal of Musculoskeletal Pain 2003, 11: 3-107. Until the present day Dr. Carruthers has continued to follow research interest in the role of consciousness in theclinical activities of Diagnosis, Prognosis, Treatment and Prevention, as presented in Consciousness Research Abstracts and Poster Presentations at the 'Towards A Science of Consciousness' Conferences, held biennially in Tuscon, Arizona at the 2004 convention. He has presented in the UK in 2005 with 'Uncovering Significant Patterns of ME - Using a Clinical Definition To Ground a Dynamical Systems Approach'. He also produced in 2005 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome : A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document. He has also produced 'Teach ME: A Source Book for Teachers' with Dr. David Bell and the TEACH-ME Task Force (teachers with ME/CFS and/or FMS).

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Emeritus Professor of Medicinal Chemistry, University of Sunderland

Professor Hooper graduated from University of London and had held appointments at Sunderland Technical College, Sunderland Polytechnic and the University of Sunderland, where he was made Emeritus Professor of Medicinal Chemistry in 1993. He has served at many UK universities as well as in India and Tanzania. He has inaugurated links with Indian research institutions and universities and celebrated 25 years of productive and on-going links which have, particularly, involved the design and development of new drugs for tropical diseases and an exploration of natural products associated with Ayurvedic medicine. He has published some 50 papers in peer-reviewed journals in the field of medicinal chemistry together with major reviews on the Chemotherapy of Leprosy, the Chemistry of Isatogens. Edited one book on the Chemotherapy of Tropical Diseases. He acted as a referee for a number of important journals and served on one editorial board. He has served on committees of the Council for National Academic Awards (CNAA), the World Health Organisation (WHO) and the Science and Engineering Research Council (SERC). Professor Hooper is a member of a number of learned bodies, including the Royal Chemical Society, the British Pharmacological Society and the Society for Drug Research (SDR), now renamed the Society for Medicines Research, where he has served on the committee for 12 years and served as Chairman for 2 years. This involved the planning and organising of major national and international conferences. He was appointed Chief Scientific Advisor to the Gulf Veterans Association (GVA) and accepted by the Ministry of Defence (MoD) as their nominee on the Independent Panel established to consider the possible interactions between Vaccines and NAPS tablets. He has also served on the Gulf Support Group convened at the Royal British Legion. His involvement with the GVA brought contact with Chronic Fatigue Syndrome/Myalegic Encephalomyelitis (CFS/M.E.) and related disorders. Gulf War Illness/Syndrome (GWI/S) has much in common with M.E./CFS. He is Patron of the Sunderland and South Shields M.E. Association and a member of the Newcastle Research Group, which includes eminent physicians and scientists performing research in to CFS/M.E., where one recent aspect has been the identification of organochlorine pesticide poisoning being misdiagnosed as M.E./CFS. He has addressed meetings of the Pesticide Exchange Network and consulted to the Organo-Phosphate Information Network (OPIN). He worked with the Autism Research Unit (ARU) at the University of Sunderland for over 20 years, leading to involvement in biochemical studies to offer help, support and treatment for people with autism. This has also lead to research and urine-analysis of Indolyl-Acroyl-Glycine (IAG), which is an unusual metabolite found in excess of 90% of people examined in different groups of GWV, M.E./CFS and Organo-Phosphate (OP) poisoning sufferers. He served on the General Synod of the Church of England from 1970 to 1980 and he is a Christian Lay Leader, Preacher and Teacher. He is currently involved in three environmental campaigns: Toxic waste dumping, including campaign against sewage in the sea presenting to the Select Committee on Sewage Treatment and Disposal GWI/S, presenting to the Defence Select Committee M.E./CFS and OP/Pesticide poisoning

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Former Head Teacher / Executive Director of The Young ME Sufferers Trust

Jane Colby is a former head teacher, a member of the National Association of Educational Inspectors Advisers and Consultants, co-author of the largest study to date of ME/CFS (Journal of Chronic Fatigue Syndrome 1997) showing that this condition is the biggest cause of long-term sickness absence from school, and a medical and educational author for professional journals and patient literature. As a member of the Chief Medical Officer’s Working Group on CFS/ME, she played a major role in writing Chapter 5 of the subsequent Report (DOH 2002). She has been commissioned to write the first book for the education profession on teaching children with ME/CFS. She is joint author of ME/CFS Guidelines for Educational Psychologists (the first such guidelines) published by The Young ME Sufferers Trust in September 2005. She prepared the questionnaire for the BBC Panorama programme on ME, is author of ME – The New Plague on the relationship between ME and poliomyelitis, and Zoe’s Win (for young people with ME). She recently edited Young Hearts, a book of inspirational poetry by children and young people with ME, with a foreword by Terry Waite CBE. This book was published by the Trust and launched in Warwick Castle by Terry Waite. Jane was formerly severely disabled with ME due to a virus related to poliomyelitis. About The Young ME Sufferers Trust The Trust is the longest-running support organisation for children and young people with ME and specialises in education. It runs an Advice Line, a Professionals Referral Service for doctors, teachers and others, and produces VISION, an informative magazine in which children are encouraged to express their views. The Trust's publications are available free of charge on its website The Young ME Sufferers Trust works with Nisai Education to provide a virtual classroom for Stage 3 pupils with ME/CFS and free over-16 virtual education for students with ME/CFS in conjunction with the Learning and Skills Council. Full information about The Young ME Sufferers Trust including an endorsement by the Prime Minister is at The Trust’s “Tymes Trustcard” is a pass card for children with ME in school, endorsed on its launch by Education Minister Baroness Ashton and by the Secondary Heads Association and supported by Lord Clement-Jones CBE and Earl Howe.

Nightingale Research Foundation, Canada

Dr. Byron Hyde attended the Haileybury School of Mines and worked as a geophysicist. He then did premedicine in the Faculty of Medicine and University College, University of Toronto, obtaining a degree in chemistry and nutrition. He graduated in medicine from the University of Ottawa where he was the Director and Chief of the International Exchange Program for the Canadian Association of Medical Students and Interns (CAMSI). Dr. Hyde founded the International Summer School in Tropical Medicine. He interned at Hotel Dieu in Montreal, was a resident at St. Justine Hospital in Montreal and at the Ottawa Civic Hospital. He also studied in Munich at the University Kinderklinik and in Paris at the Necker Hospital for Children. He was a research chemist at the Roscoe B. Jackson Laboratory at Bar Harbour, Maine, a leading world laboratory in immunological research. Following this, he was Chief Technician in charge of the Electron Microscope Laboratory in Toronto at the Hospital for Sick Children, followed by a similar post at the University of British Columbia. Dr. Hyde has authored a book on Electron Microscopy and two non-medical books. Dr. Hyde has been a physician for 25 years and has performed charitable work as a physician in Laos and the Caribbean. He held the position of Chairman of the Ottawa Community Health Services Association, and is presently Chairman of The Nightingale Research Foundation. In 1984, Dr. Hyde began the full-time study of the disease process then known as Myalgic Encephalomyelitis (renamed in 1986 by Dr. Gary Holmes in the USA to Chronic Fatigue Syndrome). He has worked exclusively with M.E./CFS patients since 1985. In 1988, Dr. Hyde organized an association and founded The Nightingale Research Foundation, dedicated to the study of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. He has also acted as Chairman of the 1990 Cambridge Easter Symposium and of the Workshop on Canadian Research Directions for Myalgic Encephalomyelitis / Chronic fatigue Syndrome in May, 1991, at the University of British Columbia. (the above was extracted from the Nightingale Foundation.)

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Sir Joseph Hotung Clinical Senior Lecturer in Inflammation, St. George’s University of London, UK

Dr. Jonathan Kerr BSc, MBBCh, MD, PhD, FRCPath. GJonathan 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, raised some important questions. The first of which pertains to the need for funding of microbiological CFS research. 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.

Journal of Clinical Pathology

Professor and Consultant, MRC Clinical Sciences Centre, Hammersmith Hospital, Imperial College School of Medicine, UK

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.

All presenters

An open and interactive panel discussion allowing questions from the audience.

Conference Report

by Doris Jones

IIMEC1 Conference Report


This was an excellent and well attended conference, organized and managed by parents of children with ME. Invest in ME was only formed six months ago.

People from around the world were attending this conference.

Dr Ian Gibson, MP for Norwich North, reported on progress made with the Informal Inquiry into ME. It was necessary to raise the profile of ME – there was much bias. Patient group representatives, Drs. Byron Hyde and Bruce Carruthers had given evidence, and delegates from NICE were asked probing questions. Next they would hear evidence from experts. He hoped that as a result of this inquiry matters could be taken forward.

Dr Bruce Carruthers (Canada) spoke about the Canadian Consensus Clinical Case Definition. FM was included in the discussion of CFS. The use of this document in Canada for a few years had made a lot of difference to ME and FM patients. The English clinician Thomas Sydenham was a mentor in devising these new guidelines – he had pioneered with clinical descriptions of cases and diseases, which was the approach taken in compiling the new guidelines. The patient was the focus of attention. He explained how these guidelines work in practice and contrasted this ‘entity focus’ diagnosis briefly with the new ‘non-entity’ diagnosis, which was based on the bio-psycho-social model of illness. - Copies of the condensed version of the new guidelines were provided.

Professor Malcolm Hooper outlined key findings in biomedical research. He mentioned three DVDs: His own ‘Engaging with ME’, Dr Vance Spence’s ‘Energizing Biomedical Research in ME/CFS’ and Dr John Gow’s DVD. GWS, OPs, MCS, ME/CFS and FMS were multi-system and multi-organ diseases, involving the neurological -, autonomic -, central + peripheral nervous -, cardiovascular -, immune – and gastro-intestinal systems. These and others are overlapping syndromes. He listed findings from a recent NIH debate on CFS and mentioned the Countess of Mar’s ‘battle’ with Lord Warner over the classification of ME as a neurological disease (under G93.3) by the WHO. The bio-psycho-social model was based on fraud and ignorance, an Australian paper stated. This and several other articles discussed these issues. He made a plea for the adoption and application of the 2003 Canadian Consensus Panel Criteria for ME. There was a need for subtypes. Finally he listed a number of crucial books on ME as well as important recent articles. – By any standards, this was a most remarkable lecture.

Jane Colby spoke about the Young ME Sufferers Trust (TYMES) and her own experiences with severe ME. TYMES is a registered charity, run by (unpaid) volunteers. They are now co-funding with MERGE the first biomedical study on children with ME. She described the scale of the problem, the illness pattern in schools, clustering of cases, frequent misdiagnosis and an inevitable conflict between health vs education. ME was a polio-like illness, as shown in her book ‘The New Plague’, triggered by over 70 enteroviruses. An estimated 25,000 schoolchildren are affected by ME in the UK. She had co-authored a study with Dr EG Dowsett, which showed that 51% of long-term sickness absence in schools was due to ME. She had also helped with the 1999 BBC Panorama programme, showing how children with ME are being treated: 59% of families were told by GPs that the child’s illness was psychological. Now teachers are being taught about ME in schools.

Dr Byron Hyde (Canada) has taken an interest in ME for over 20 years. His charity, the Nightingale Research Foundation, was named after Florence Nightingale, who fell ill with an ME-like illness after the Crimean War. She was bedridden most of the time after return. – He stressed that ME was not the same as CFS. Brain dysfunction was the defining symptom in ME, not fatigue. He had outlined his views and experiences in a red-cover booklet, which was available. He was most critical of the strong psychiatric involvement in ME – none of their theories or hypotheses can be tested, he said. He described the initial inappropriate psychiatric treatment meted out to some of his patients with resultant further problems. Thyroid scans and tests had shown that the thyroid shrinks, in some cases by 2/3rds over a 5-year period. He stressed links between vaccines and ME onset (especially recombinant Hepatitis B) and outlined the situations and locations, which favour the onset of ME: hospitals, schools, exhausted students or travelling musicians.

Dr Jonathan Kerr spoke about Functional Genomic Studies in CFS. Using the CDC criteria, his team looked at gene differentiation in 25 ME/CFS patients and 25 normal people. He gave an overview of basic cell processes. Six key areas of body function are affected, he stated, two affecting the immune system, and others affecting the neurological functioning and the mitochondria. A complex pathogenesis became apparent, which offered support for biological processes in CFS (as opposed to psychological ones).

Professor Bassant Puri, known as the ‘fish oil expert’, gave a presentation on lipid neuroscience. He said that Proton Neurospectroscopy, a powerful scanning technique, had identified a differential variation in choline levels in the brains of ME patients, meaning there aren’t sufficient chains of fatty acids. Prostaglandines, cytokines etc all come from EFAs. Using VegEPA capsules in conjunction with a nutrient-rich diet had shown good results.

The Q+A session raised important issues. Criona Wilson told the harrowing story of her daughter’s death due to medical neglect and mismanagement. – Invest in ME ( will produce a DVD of this conference (estimated price £13). A more detailed report of this conference will be on the 25% ME Group website soon. – With thanks to the 25% ME Group for paying the fee for my attending this conference.

Doris Jones. 7.6.06.

Conference DVD

IIMEC1 Conference DVD

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The DVD contains 4 discs and is in PAL format- containing The full set of presentations from the Invest in ME ME/CFS Conference of 2006, plus extra programmes from ITV Meridian and Norway's NRK channel on severe ME.

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Format: PAL
Length 400 minutes
Contents Full presentations from conference
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    An amazing achievement to produce all of these presentations of the conference. I found it so informative and you have performed an incredible task in doing all of this.

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    The content is rivetting..especially being a physio/ mum of ME child, regarding the evidence behind exercise.

The views expressed at the Invest in ME International ME Conference conferences by the presenters and delegates to the conference and any information material distributed are their own personal opinions that are not necessarily shared or endorsed by the Trustees of Invest in ME/Invest in ME Research.

Invest in ME/Invest in ME Research accept no responsibility for the views expressed or any subsequent action taken. The contents of any presentation should not be deemed to be an endorsement, recommendation or approval of such content by Invest in ME/Invest in ME Research. The materials presented at the 1st Invest in ME International ME Conference 2006 do not constitute medical advice. No medical recommendations are given or implied by Invest in ME/Invest in ME Research. Any person registering or attending the conference, or purchasing the DVD, who may take any action or consider medical treatment or referrals should take detailed advice from their own medical practitioner. Invest in ME/Invest in ME Research disclaims any implied guarantee about the accuracy, completeness, timeliness or relevance of any information contained at the conference.

By purchasing any of the conference DVDs you agree that Invest in ME/Invest in ME Research is not liable for any complications, injuries, loss or other medical problems arising from, or in connection with, the use of or reliance upon any information contained in the conference.


Images from IIMEC1, London, 2006


More details of previous Invest in ME conferences can be found on the current IIMEC* conference overview page - Click here.

Our Sponsors for IIMEC1

Invest in ME wish to thank the following organisations for helping to sponsor the 1st Invest in ME International ME Conference 2006.

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.


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If you have any questions regarding the conference then please contact us by email and we will get back to you as soon as possible. Thank you for your interest in the charity.

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  • Address: Invest in ME Research PO Box 561 Eastleigh SO50 0GQ Hampshire UK
  • Phone: 02380 643736 / 07759 349743
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Research funded and facilitated by Invest in ME Research.

View the completed and ongoing projects made possible by the supporters of the charity.


IIMER are facilitating a strategy of biomedical research into ME. The charity is currently funding possibly important research projects for ME in the UK with international collaboration.
Currently the main hub of research is at Quadram Institute Bioscience and University of East Anglia ) in the Norwich Research Park and we also fund research at UCL. These involve a gut microbiota project in Norwich and B cell research in London.

Advisory Board

The IIMER Advisory Board is made up of eminent researchers who are helping the charity to form a credible and productive biomedical research strategy which will provide the best and quickest route for possible treatments and cures for this disease.

Centre of Excellence for ME

Translational biomedical research - an iterative feedback of information between the basic and clinical research domains in order to accelerate knowledge translation from lab to bedside and back to lab again - allows translation of findings in basic research more quickly and efficiently into medical practice to produce more meaningful health outcomes and facilitate the sharing of repositories and research-based facilities and laboratories. This is the model IiMER are attempting to promote in the proposal for an examination and research facility based in Norwich.

Let's Do It For ME

Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based around the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

Research Colloquiums

In addition to the International ME Conference the charity also organises an annual International Research Colloquium which attracts researchers from around the world in order to discuss experiences and open up collaborations in order to find answers for this disease.

European Collaboration

Invest in ME Research is one of the founder members of the European ME Alliance (EMEA) – a grouping of charities and patient organisations working together across Europe. Now fifteen European countries collaborating.


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