The Invest in ME Research Biomedical Research into ME Colloquiums (BRMEC) are closed research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst researchers.
This has been one of the main objectives of the charity.

Invest in ME Research began arranging cpd-accredited public international biomedical research conferences in 2006.
The BRMEC Colloquiums began in 2011 as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas.
Over the years this has broadened into sharing of experiences, data and plans for future research and international collaboration.
A culmination of much of this effort was the initiation of The European ME Research Group (EMERG) concept which formed in October 2015 in London in an attempt to set up a strategy of European collaboration in ME research.

Our aim with the annual CPD-accredited research colloquiums has also been to introduce new researchers into the field of ME research, to gain new insights into the disease and enhance the strategy of research we are building.
This builds the basis for creating a strategy of high-quality international biomedical research - something which had been lacking in the past decades - and facilitating the increase in capacity for research. This increases chances of finding funding opportunities and raising awareness of biomedical research into ME.
In 2018 we added the initiative to begin developing foundations for the future by arranging our Thinking the Future workshops to create a network of young and early career researchers interested in or already performing biomedical research into ME.
This has now formed into Young EMERG - the European ME Research Group Early Career Researcher group.

The Invest in ME Research Colloquium events have spawned a multitude of positive initiatives over the years and are the most successful research meetings for forming new research initiatives for ME with multiple collaborative initiatives being formed across continents.


Invest in ME Research Colloquiums

Click below to expand detail for each Colloquium event

ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue

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The 12th International Biomedical Research into ME Research Colloquium took place on 31 May - 1 June 2023.
Developing further insights into mechanisms and complexity of myalgic encephalomyelitis including aspects of long covid research.
ME, and more recently Long Covid, place a huge burden in healthcare yet the capacity of research has continually been restricted by limited funding.
With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic was also included as a central component of the agenda and a number of presentations concerning ME and long covid were given with a focus on the aetiology of the disease.
The knowledge and the road travelled by ME researchers and clinicians is an invaluable aid for understanding long Covid.
Understanding the viral and immunological mechanisms behind both of those conditions is the key to making progress.

This was the first in person Colloquium since the pandemic began in 2020.
The charity was also using a new venue - the Wellcome Genome Campus near London Stansted airport and in between the city of London and Cambridge.

Some of the institutes, organisations and agencies that have speakers, representatives and participants attending the conference week 2023 events -

Quadram Institute
National Institutes of Health (NIH)
University of East Anglia
Kings College London
University of Oslo
University of Bergen
University of Helsinki
University of Uppsala
University of Würzburg
Nova Southeastern University, Miami
Université de Montréal
Charité University Hospital, Berlin
Universidad Católica de Valencia
Harvard Medical School
Aarhus Universitet
Georgetown University
University College London
European ME Research Group
Copenhagen University Hospital
Cornell University
University of South Florida
University of Vermont
The Jackson Laboratory
NCNED, Australia
University of Liverpool
The Free University in Amsterdam
Centers for Disease Control and Prevention (CDC)
Medical University of Vienna
Imperial College London
Mayo Clinic
Linköping University
Simmaron Research
North-West University
Queen Mary University London
University of Utrecht
Stanford Genome Technology Center
Columbia University
Radboud University
University of Nottingham
University of Amsterdam
University of Birmingham
University of Otago
Johns Hopkins University

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The 12th Biomedical Research into ME Colloquium was possibly the best yet of the series of colloquia that were started in 2011, five years after we initiated the international ME conferences.
This year Invest in ME Research started late in preparations, unsure of the response from researchers following easing of covid restrictions. However, the team managed to bring together a good programme of interesting research and used the expertise of the European ME Research Group (EMERG) to chair sessions and bring in new expertise alongside the existing and increasing family of researchers that the charity has developed.
There was more interest from researchers than ever - despite this being our first to meet in person since before the pandemic began - justifying resources used/commitment given to make it work.
This year also, partly as an aid to help social distancing at the events, we used a new venue which had the added benefit of giving greater possibilities to improve and develop international collaboration amongst researchers, one of the charity's continuing and abiding objectives.
In this we feel we were very successful.
Many new collaborations were formed - one of the advantages of focusing efforts on getting the right people together in a productive atmosphere.
Many of these collaborations may not come to fruition for a while but they were, nevertheless, generated by the ability to meet in pleasant surroundings and inspired with the atmosphere of this international meeting. As one good friend and BRMEC12 delegate commented -
‘the agenda, speakers you chose, networking you encouraged & every detail helped us all meet new collaborators & have more hope that things are getting closer to answers’
Amongst some of the invitations to attend from the charity there was included one to the Norwegian Directorate of Health (Norges Helsedirektoratet). The situation for ME in Norway should be the best in the world but there are continuing issues with flawed policies being promoted.
So, we suggested to one of the EMERG researchers in Norway if we could assist by inviting such an organisation to the Colloquium as our guests to hear of the research that was being conducted and to mix with researchers.
Eventually we had four representatives from helsedirektoratet attending and we hope that this will prove beneficial to all people with ME and their carers in Norway, and ultimately to all patients in Europe.


ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue

The 11th International Biomedical Research into ME Research Colloquium took place on 18 - 19 May 2022. With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic will be also included as a central component of the agenda and a number of hypotheses will be proposed concerning ME and long covid - with a focus on the aetiology of the disease.

ME and Long Covid: Emerging insights in mechanisms and complexity of post-viral fatigue

The 11th International Biomedical Research into ME Research Colloquium took place on 18 - 19 May 2022. With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic will be also included as a central component of the agenda and a number of hypotheses will be proposed concerning ME and long covid - with a focus on the aetiology of the disease.

Click below to expand and show each day of the Colloquium

All times in CET (Central European Time)


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IIMER BRMEC10 RESEARCH MEETING LONDON, 2021

2 - 3 June 2021
The Invest in ME Research Biomedical Research into ME Colloquium 10 (BRMEC10) took place in London over two days.
Due to the pandemic this Colloquium was conducted using Zoom.
The European ME Research Group (EMERG) was tasked with producing an agenda appropriate for this environment and in order to move things on with research into ME while the pandemic limited in-person meetings.
We again had representation from National Institutes of Health (NIH), Centers for Disease Control (CDC), USA, Canada, Europe and Australasia.

IIMER BRMEC10 RESEARCH MEETING LONDON, 2021

2 - 3 June 2021

In replacing the annual London event with a a virtual event we used the different opportunities presented by this format to bring forward new ideas to stimulate discussions between researchers.
Every Colloquium has aimed to improve understanding, collaboration and cooperation.

With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic was also added to the agenda.

For BRMEC10 a new approach and a new format to the meeting was created in order to try to make a step-change in thinking and aid everyone researching ME. Working with Invest in ME Research the European ME Research Group (EMERG) were tasked with forming the agenda.

A number of hypotheses were proposed concerning ME - all leading back to the aetiology of the disease. This was augmented by referencing long covid. The hypotheses were discussed by researchers.

A paper from one of these sessions was published - 'What Causes ME/CFS: The Role of the Dysfunctional Immune System and Viral Infections' - Click here

The BRMEC10 Colloquium also gave rise to discussions on outcome measures for research into ME. Toegether with the NIH and the European ME Research Group a core group of researchers formed a working group to discuss outcome measures and this working group would meet after the colloquium.

Colloquium Videos

We hope to add Colloquium videos to the site soon.

Read more

IIMER BRMEC9 RESEARCH MEETING LONDON, 2021

2 - 3 June 2021
The Invest in ME Research Biomedical Research into ME Colloquium 10 (BRMEC9) took place in London over two days.
Due to the pandemic this Colloquium was conducted using Zoom.
The European ME Research Group (EMERG) was tasked with producing an agenda appropriate for this environment and in order to move things on with research into ME while the pandemic limited in-person meetings.
We again had representation from National Institutes of Health (NIH), Centers for Disease Control (CDC), USA, Canada, Europe and Australasia. In replacing the annual London event with a a virtual event we are using the different opportunities presented by this format to bring forward new ideas to stimulate discussions between researchers. Every Colloquium has aimed to improve understanding, collaboration and cooperation. With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic will be also added to the agenda. For BRMEC9 we will present a new approach and a new format to the meeting in order to try to make a step-change in thinking and aid everyone researching ME. Working with Invest in ME Research will be the European ME Research Group (EMERG) who have been tasked with forming the agenda. A number of hypotheses will be proposed concerning ME - all leading back to the aetiology of the disease. This will be augmented by reference to long covid. The hypotheses will be discussed by researchers.

BRMEC9 AGENDA

Click below to expand and show each day of the Colloquium

BRMEC9 Colloquium Agenda - Day 1

Session Presenter(s)
Arrival Refreshments
Welcome to the BRMEC9

Ian Gibson

University of East Anglia, UK
Clinical Research/ Clinical Trials/Treatment Experiences
Impact of Co-morbid Conditions on ME/CFS: Information from complementary data sources

Elizabeth Unger

CDC, USA
NIH Strategy Update

Vicky Whittemore

NIH, USA
Harvard Plans for Clinical Research for ME

Ron Tompkins

Massachusetts General Hospital, USA
Clinical Collaboration in Europe – A Bridge to Research

EMECC

European ME Clinicians Council
Catecholamine Replacement Therapy (CRT) in ME

Olli Polo

University of Tampere, Finland
Cyclophosphamide intervention in ME/CFS and associations to molecular markers

Ingrid G. Rekeland

Bergen, Norway
HLA associations in ME

Benedicte Lie

Oslo, Norway
Epstein-Barr virus induced ME/CFS

Jonathan Kerr

Norwich, UK
Chaired Discussion - Clinical Research/ Clinical Trials/Treatment Experiences
Systems Biology
Establishing new mechanistic and diagnostic paradigms for ME/CFS

Ron Davis

Stanford, USA
Severely Ill Patient Study of ME/CFS

Wenzhong Xiao

Harvard, USA
Identifying Genetic Predisposition, and Genomic Dysfunction of Immune system, Hormone and Metabolic Regulation in ME/CFS for Improved Diagnostics and Treatment Avenues

Travis Craddock

Nova Southeastern University, USA
The systems-level immunology of ME/CFS, and activation of the inflammatory reflex

Petter Brodin

Karolinska Institutet, Sweden
Sex-specific differences in miRNA expression in ME/CFS

Lubov Nathanson

Nova Southeastern University, USA
Chaired Discussion
Metabolomics
Immunocellular bioenergetics in Danish females with ME

Rikke Olsen

Aarhus University Hospital, Denmark
Targeted metabolic profiling and associations to clinical data in ME

Øystein Fluge

Bergen, Norway
Untargeted metabolic profiling and associations to clinical data in ME

Karl Johan Tronstad

Bergen, Norway
Longitudinal Metabolomics Research into ME/CFS (tbc)

Chris Armstrong

Stanford, USA
Chaired Discussion - Metabolomics

BRMEC9 Colloquium Agenda - Day 2

Session Presenter(s)
Arrival Refreshments
Welcome to Day 2 BRMEC9

Ian Gibson

UEA,UK
Microbiome/Virome
Are bacteria good for your brain? Communication between the gut microbiota and the blood-brain barrier”? The influence of the gut microbiota upon the brain’s defences and the implications for cognition

Simon McArthur

Queen Mary, University of London, UK
Virome and gut microbiota research at QIB

Daniel Vipond

Quadram Institute, UK
Microbiome-host communication in ME/CFS

Mady Hornig

Columbia University Mailman School of Public Health, USA
Chaired Discussion - Microbiome
Pathophysiology:
Transient receptor potential ion channels in the aetiology and pathomechanism of CFS/ME’

Don Staines

NCNED, Australia
Pathophysiological basis of Fibromyalgia

David Andersson/Stuart Bevan

Kings College London, UK
Characteristics and pathophysiological changes in a large cohort of Danish ME-patients

Jesper Mehlsen

Copenhagen, Denmark
Chaired Discussion - Pathophysiology:
Neuroscience/Neuroimaging
Ongoing study of physiological and fMRI measures before and after symptom provocation by invasive cardiopulmonary exercise testing

Michael VanElzakker

Massachusetts General Hospital, Harvard Medical School, and Tufts University, USA
PEM in fMRI-Exercise paradigm

James Baraniuk

Georgetown University, USA
Chaired Discussion - Neuroscience
Biomarkers
Preliminary Data Coming from SNP study

Nancy Klimas

Nova Southeastern University, USA
Extracellular Vesicles in ME/CFS

Maureen Hanson

Cornell University, USA
Proteomics and autoantibodies

Jonas Bergquist

Uppsala, Sweden
Oxidative stress hypothesis for reprogramming PBMC to iPSCs then to Neurons in ME/CFS patients

tbc

Transposable element activation links to ME/CFS

Elisa Oltra

Universidad Católica de Valencia, Valencia, Spain
Chaired Discussion - Biomarkers
Group Discussion of Issues led by European ME Clinicians Council

Professor Markku Partinen

University of Helsinki, Finland
BRMEC9 Summary

Young Researchers

The Thinking the Future conferences are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst young and early career researchers. This has been a major objective of the charity. An international family of researchers working together has been facilitated by the Invest in ME Research BRMEC* Biomedical Research into ME Colloquiums held annually in London, UK. To ensure that a foundation of biomedical research into ME can be sustained and to encourage new ideas from new areas then we cannot rely just on this family of researchers that has been built up from all parts of the world. We need to draw in knowledge and expertise from other areas – as we have been doing for many years with our research Colloquiums and international Conferences. Importantly, we also need to encourage early career researchers – and young researchers.

In 2019 Invest in ME Research worked with the USA National Institues of Health (NIH) to arrange two TtF conferences - one in Washington DC and one in London. Read more

Our Conference Journals

Our Conference Journals
For each conference we produce an edition of the Journal of IiMER.
Containing news, articles and conference presentation abstracts.

Read more

IIMER BRMEC8 RESEARCH MEETING LONDON, 2021

30 - 31st May 2018 The Invest in ME Research Biomedical Research into ME Colloquium 8 (BRMEC8) took place in London over two days from 30th - 31st May 2018.

The eighth Colloquium aimed to increase international collaboration in research into ME.

There was representation from most of the main biomedical research initiatives occurring throughout the world and also participation fron USA's Centers for Disease Control (CDC) and National Institutes of Health (NIH).

The research Colloquium in London will precede the IIMEC13 annual public international biomedical research conference on 1st June 2018.

BRMEC8 AGENDA

Click below to expand and show each day of the Colloquium

Agenda for BRMEC8 - Day 1


The agenda for the Day 1 programme on 30th May 2018


Event Presenter(s)
08:30 Arrival Refreshments
Welcome to the 8th Invest in ME International Biomedical Research into ME Colloquium Dr Ian Gibson, UEA, UK
Clinical Research
CDC Multisite study and future plans Dr Elizabeth R. Unger, CDC, USA
NIH Common Data Elements Dr Vicky Whittemore, NIH, USA
Challenges in study design and identification of patients with post-infectious ME Dr Avindra Nath, NIH, USA
From phenotype to endotype: empirical and data-driven approaches for parsing clinical heterogeneity of ME using immune signatures, proteomics and metabolomics Associate Professor Mady Hornig, Columbia University, USA
Chaired Discussion - Clinical Research Professor Angela Vincent, University of Oxford, UK
Clinical Trials
Clinical trial Results: Rituximab Dr Øystein Fluge, Bergen, Norway
Neuronal antibodies in Norwegian ME cohort Angela Vincent, Oxford University, UK
Clinical trial Results: CycloME Dr Ingrid G. Rekeland, Bergen, Norway
Chaired Discussion - Clinical Trials and Research Amolak Bansal, Epsom and St.Helier NHS Trust, UK
Microbiome
Double-blinded, placebo-controlled clinical Trial: faecal microbiota transplantation Dr Rasmus Gol /Dr Peter Johnsen, Universit of Tromso, Norway
Virome and gut microbiota research at QIB Fiona Newberry/Katharine Seton, Quadram Institute Bioscience, UK
Chaired Discussion - Microbiome Professor Maureen Hanson, Cornell University, USA
Purinergic Signalling / Metabolomics
Extracellular ATP and its role as a neurotransmitter and in regulating inflammatory responses Dr Samuel Fountain, UEA, UK
Biobank Metabolomics Data Dr Øystein Fluge, Bergen, Norway
How UK Biobank can facilitate research into ME Naomi Allen, UK Biobank / University of Oxford, UK
Cellular energetics Professor Karl Johan Tronstad, Bergen, Norway
Metabolism in ME/CFS Professor Maureen Hanson, Cornell University, USA
Stanford Metabolomics/ME Update Professor Ron Davis, Stanford, USA
How important are the associated metabolic changes in ME/CFS in driving the illness? Dr Karl Morten, University of Oxford, UK
Chaired Discussion - Purinergic Signalling / Metabolomics Professor Jonas Bergquist, Uppsala, Sweden


The schedule is subject to change

#BRMEC8 Day 1 is followed by a researchers' dinner organised by IiMER where more discussions are able to be carried out between researchers.

Agenda for BRMEC8 - Day 2


The agenda for the Day 2 programme on 31st May 2018


Event Presenter(s)
08:30 Arrival Refreshments
Welcome to the 8th Invest in ME International Biomedical Research into ME Colloquium Dr Ian Gibson, UEA, UK
Virology
The role of enteroviruses in T1 diabetes Professor Heikki Hyöty, University of Tampere, Finland
HPV and autoimmunity Dr Jesper Mehlsen, Copenhagen, Denmark
Chaired Discussion - Virology Professor Tom Wileman, University of East Anglia, UK
Immunology
Mast cells and ME Professor Theoharis Theoharides, Tufts University, USA
T cell homeostasis Dr Ben Seddon, UCL, London, UK
Oxidative stress hypothesis for reprogramming PBMC to iPSCs then to Neurons in ME/CFS patients Malav Trivedi, Nova Southeastern University, USA
Chaired Discussion - Immunology Anne Cooke, University of Cambridge, UK
Systems Biology
Integrated systems biology to understand the role of the gut microbiome in health and disease Lesley Hoyles, Imperial College London, UK
Using machine learning to objectively define ME/CFS subtypes Travis Craddock, Nova Southeastern University, USA
Chaired Discussion - Systems Biology Professor Jonas Bergquist, University of Uppsala, Sweden
ANS
Observations in Paediatric ME Professor Kristian Sommerfelt, Bergen, Norway
Relationship between sleep quality and functioning of the autonomic nervous system in ME/CFS Markku Partinen, University of Helsinki, Finland
Chaired Discussion - ANS Amolak Bansal, Epsom and St.Helier NHS Trust, UK
Biomarkers
Emerging TRP pathology: the way forward in pharmacotherapeutics and treatment Don Staines, NCNED, Australia
Immunogenetic studies in ME Asgeir Lande, Oslo, Norway
Proteomics, steroids and autoantibodies Jonas Bergquist, Uppsala, Sweden
Dolorimetry, cerebrospinal fluid miRNA, proteomics, metabolomics data James Baraniuk, Georgetown University, USA
Analysis of miRNA comparing PBMCs and exosomes profiles Elisa Oltra, Universidad Católica de Valencia “San Vicente Mártir”, Spain
Chaired Discussion - Biomarkers Professor Jonas Bergquist, Uppsala, Sweden
Summary Professor Jonas Blomberg, Uppsala, Sweden


The schedule is subject to change

#BRMEC8 Day 2 is followed by the #IIMEC13 International ME Conference 2018 Pre-Conference Dinner

Young Researchers

The Thinking the Future conferences are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst young and early career researchers. This has been a major objective of the charity. An international family of researchers working together has been facilitated by the Invest in ME Research BRMEC* Biomedical Research into ME Colloquiums held annually in London, UK. To ensure that a foundation of biomedical research into ME can be sustained and to encourage new ideas from new areas then we cannot rely just on this family of researchers that has been built up from all parts of the world. We need to draw in knowledge and expertise from other areas – as we have been doing for many years with our research Colloquiums and international Conferences. Importantly, we also need to encourage early career researchers – and young researchers.

29th May 2018

The first Young/ECR Conference took place in London on 29th May 2018. The conference aimed to increase international collaboration in research into ME by initiating a new network for young/ECR researchers. Representation came from six countries and included experienced researchers from Oxford, Cambridge, Uppsala in Sweden, Columbia and Tufts in USA. The USA National Institutes of Health (NIH) was also represented. Read more

Our Conference Journals

Our Conference Journal
For each conference we produce an edition of the Journal of IiMER.
Containing news, articles and conference presentation abstracts.

Read more


IIMER BRMEC7 RESEARCH MEETING LONDON, 2021

The Biomedical Research into ME Colloquium 7 (BRMEC7) took place in London over two days from 31st - 1nd June 2017.

This was the seventh Invest in ME Research Colloquium and the objective was to increase international collaboration in research into ME.

Chairing and participating in the meeting were members of the Invest in ME Research Advisory Board and the newly formed European ME Research Group (EMERG).

We had representation from most of the main biomedical research initiatives occurring throughout the world as well asparticipation from the USA by the CDC and NIH.

The research Colloquium in London preceded the IIMEC12 international biomedical research conference on 2nd June 2017.

BRMEC7 - Day 1
Welcome to the 7th Invest in ME Research International Biomedical Research into ME Colloquium 7 2017 Dr Ian Gibson, UEA, UK
NIH Research into ME - Status Update and Plans Dr Vicky Whittemore, NIH, USA
CDC Multisite study and future plans Dr. Elizabeth Unger, CDC, USA
Data Collection (including the following)
Modelling Professor Nancy Klimas, Fort Lauderdale, USA
Long-term follow up: Experience and lessons for ME from Norfolk Arthritis Registry Project (NOAR) Professor Alex MacGregor, Norwich, UK
Discussion
Immunology (including the following)
Dysregulation of Transient Receptor Potential (TRP) ion channels and calcium in natural killer cells in CFS/ME patients’ Professor Sonya Marshall-Gradisnik, NCNED, Australia
Professor Don Staines, NCNED, Australia
Update on B-cell research and future plans at UCL Dr Jo Cambridge, London, UK
Fane Mensah, London, UK
Studies of NK cells and cytotoxic T-cells in ME-patients from one Swedish and one Norwegian cohort Dr Jakob Theorell, Stockholm, Sweden
EBV and lymphoma Professor Michelle West, Sussex, UK
Discussion
Metabolomics (including the following)
Stanford Update Professor Ron Davis, Stanford Genome Institute, USA
Cornell Update Professor Maureen Hanson, New York, USA
Australian Update Dr Chris Armstrong, Melbourne, Australia
Overview of metabolism studies at Haukeland Professor Karl Johan Tronstad, Bergen, Norway
Discussion
Neuroimaging (including the following)
ME imaging review and ongoing study Dr Per Julin, Stockholm, Sweden
Discussion

BRMEC7 - Day 2
Opening 7th Invest in ME Research International Biomedical Research into ME Colloquium 7 2017 - Day 2 Dr Ian Gibson, UEA, UK
Clinical Trials (including the following)
LDN in ME/CFS: data on safety and efficacy Dr Olli Polo, Tampere, Finland
RituxME and CycloME clinical trials Professor Olav Mella, Bergen, Norway
Impaired glucose metabolism and PDH in ME/CFS? Dr. Øystein Fluge, Bergen, Norway
B-vitamins in ME/CFS Dr. Ingrid G. Rekeland, Bergen, Norway
Immunadsorbtion trial Professor Carmen Scheibenbogen, Berlin, Germany
Discussion
Microbiome (including the following)
IFR/UEA update Professor Simon Carding, Norwich, UK
Alterations in the enteric bacterial and viral microbiome in ME/CFS Professor Ludovic Giloteaux, New York, USA
Columbia update Associate Professor Mady Hornig, New York, USA
Discussion
Biomarkers (including the following)
miRNA in CSF Professor James Baraniuk, Washington DC, USA
Epigenetic changes in ME/CFS Dr Lubov Nathanson, Fort Lauderdale, USA
Genetic and functional genetic studies in ME / HLA and ME Dr Asgeir Lande , Oslo, Norway
Professor Ola Didrik Saugstad , Oslo, Norway
Tbc Professor Warren Tate, Otago, New Zealand
Lactate during exercise in ME/CFS Dr Katarina Lien, Oslo, Norway
Discussion
Colloquium Summary

LinkedIn

Our #BRMEC7 linkedin article 2017 April, 2017

Our Conference Journals

Our Conference Journal for 2017

Read more

1st - 2nd June 2016

The CPD-accredited Biomedical Research into ME Colloquium 6 (BRMEC6) took place in London over two days from 1st - 2nd June 2016.

This was the sixth Invest in ME - Research Colloquium and the objective was to increase international collaboration in research into ME.

The sixth colloquium was opened by Dr Vicky Whittemore of the USA National Institute of Research.

With full CPD accreditation the Colloquium involved the most experienced researchers in areas such as immunology, virology, neurology and bioinformatics.

Chairing and participating in the meeting were members of the Invest in ME Research Advisory Board and the newly formed European ME Research Group (EMERG).

We again had most of the main biomedical research initiatives now occurring throughout the world represented at the meeting.

The research Colloquium was in London and preceded the IIMEC11 annual international biomedical research conference on 1st June 2016.

BRMEC6 - Day 1
Welcome to the 6th Invest in ME International Biomedical Research into ME Colloquium Dr Ian Gibson, UEA, UK Professor Jonathan Edwards, UCL, UK
NIH Research into ME Dr Vicky Whittemore, NIH, USA
Diagnosis (clinical) – Patient Stratification (including the following)
Clinical signs/symptoms of ME Professor Olli Polo, Tampere University, Finland
Diagnostics and Patient Stratification for Research Dr Amolak Bansal, Epsom & St Helier NHS Trust, UK
Protocols and Patient Databases for ME Dr Luis Nacul, LSHTM, UK
Big Data Approach: Severely Ill ME Cohort Professor Ron Davis, Stanford, USA
Chaired Discussion - Criteria to Use for ME/CFS Diagnosis Professor Angela Vincent, Oxford University, UK
Sample Standardisation SOPs for Research (including the following)
Biobank Samples and Protocols for UK/Europe Dr Eliana Lacerda, LSHTM, UK
Analysis Protocols for ME Professor Jonas Bergquist, Uppsala University, Sweden
Chaired discussion Sample Standardisation SOPs for Research Dr Jo Cambridge, UCL, UK
Biomarkers: 1 Data
Keynote Speech: Longitudinal Immunological & Virological Study for ME/CFS Biomarker Discovery Professor Eleanor Riley, LSHTM, UK
Biomarkers: 2 Imaging
Immune-Brain Communication and Relationship to Inflammation and Cohort Selection Challenges Dr Neil Harrison, Sussex University, UK
Neuroimaging in Clinical Practice in ME tbc
Chaired Discussion Neuroimaging in ME Research Professor Jonathan Edwards, UCL, UK
Biomarkers: 3 Mitochondria
Keynote Speech: Understanding and Preventing Mitochondrial Oxidative Damage Dr Mike Murphy, MRC and Cambridge University, UK
Mitochondria in ME/CFS Professor Maureen Hanson, Cornell University, USA
Chaired discussion/workshop with participants Professor Jonas Blomberg, Uppsala University, Sweden
Adjourn

BRMEC6 - Day 2
Summary Day 1 - Objectives of DAY 2 Dr Ian Gibson, UEA, UK Professor Jonathan Edwards, UCL, UK
Biomarkers: 4 Antibodies (including the following)
Autoantibodies in ME/CFS Professor Carmen Scheibenbogen, Charite, Berlin, Germany
Antibodies to small DNA viruses Professor Jonas Blomberg, Uppala Uuniversity, Sweden
Novel form of RNaseL Professor Elisa Oltra, Cell and Molecular Biology at the Universidad Católica de Valencia “San Vicente Mártir”,  Spain
B cell biology and ME Dr Jo Cambridge, UCL, UK Fane Mensah, UCL, UK
Chaired discussion Antibodies in ME/CFS Dr Juliá Blanco, IrsiCaixa, Institute for AIDS Research, Spai
Biomarkers: 5 Big Data Updates
Big Data Approach for ME/CFS at Columbia University Professor Mady Hornig, Columbia University, USA
Big Data Update from Stanford Professor Ron Davis, Standord Genome, USA
Recent discoveries from NCNED data set: Gene expression & Receptor id Dr Don Staines, NCNED, Australia
Chaired discussion - Challenges of Big Data Strategies Professor Jonas Bergquist, Uppsala University, Sweden
Biomarkers: 6 Phenotypes (including the following)
Glucocorticoid Resistance in ME Dr Amolak Bansal, Epsom & St. Helier NHS, UK
Exercise Data, Orthostatic Tachycardia and Proteomics in ME Professor James Baraniuk, Georgetown University, USA
Virome and Gut Microbiota in ME Professor Tom Wileman, UEA, UK
Gut Microbe and Metabolomic Study of ME/CFS Patients Dr Christopher Armstrong, Dept Biochemistry and Molecular Biology, University of Melbourne, Australia
Discussion: Phenotypes in ME/CFS Professor Simon Carding, UEA/IFR, UK
Systems Biology (including the following)
A Systems Biology approach Dr Travis Craddock, Nova Southeastern University, Miami, USA
Novel Treatments (including the following)
Novel Treatments - Immunoadsorption Professor Carmen Scheibenbogen, Charite Berlin, Germany
Medical Education - BMJ Update Professor James Baraniuk, Georgetown University, USA
SUMMARY of BRMEC6 - Objectives Status Dr Ian Gibson Professor Jonathan Edwards
Adjourn

LinkedIn

Our #BRMEC6 Linkedin article 2016 April, 2016

Our Conference Journals

Our Conference Journal for 2016

Read more

BRMEC5 IIME RESEARCH MEETING LONDON, 2015

The Biomedical Research into ME Colloquium 5 (BRMEC5) took place over two days from 27th-28th May 2015.

This was the fifth Invest in ME Research Colloquium and over sixty researchers from thirteen countries round the world convened in London to discuss research, strategies and future planning.

The fifth colloquium built on past years and has now evolved into a major international event, with CPD accreditation, and involving the most experienced researchers in areas such as immunology, virology, neurology and bioinformatics.

Chairing the meeting was Dr Ian Gibson and Professor Jonathan Edwards - along with the Invest in ME Research Advisory Board.

The research meeting was by invitation only but the charity made available places for researchers and some students who would add to the meeting or who were interested collaborating with our increasing group of international researchers in performing biomedical research into ME.

We had representatives from most of the main biomedical research initiatives now occurring throughout the world represented at the meeting.

BRMEC5 - Day 1
Welcome to the 5th Invest in ME International Biomedical Research into ME Colloquium Dr Ian Gibson/ Professor Jonathan Edwards
Foundations for Research
Epidemiology: Incidence/Prevalence in UK Dr Luis Nacul, London School of Hygiene and Tropical Medicine, UK
Diagnostics/patient selection for research -
Experience from clinic/Characteristics of patients – from new to severely ill
Dr Amolak Bansal, Epson and St.Helier NHS University Hospital, UK
IOM Implications Dr Dan Peterson, Simmaron Research, USA
Discussions
Chaired discussion with participants
Immunology 1: Gut Microbiota - Session Lead Professor Simon Carding (IFR)
USA Columbia Microbiome study Prof Mady Hornig, Columbia Univ, USA
The Cornell Microbiome Study Prof Maureen Hanson Cornell Uni,USA
Discussions
Chaired discussion with participants
Immunology 2:
Immunological and metabolic markers Prof Mady Hornig Columbia Univ, USA
B cell biology Dr Jo Cambridge UCL, UK
Immunological markers in a Spanish patient cohort Dr Julian Blanco, Irsi Caixa, Spain
Lymphocyte markers of fatigue in CFS/ME & breast cancer patients Dr Clive Carter, Leeds Teaching Hospitals NHS Trust, UK
Cytokine and Chemokine Profiles of ME/CFS Patients Dr Amir Landi, University of Alberta, Canada
Discussions
Chaired discussion with participants
Virology
Enteroviral Research into ME/CFS Dr John Chia, UCLA, USA
EBV and ME/CFS Prof Carmen Scheibenbogen Charite, Berlin, DE
Discussions Chaired discussion with participants
Summary of first day Dr Ian Gibson, UEA, UK
Prof Jonathan Edwards, UCL, UK
Adjourn


BRMEC5 - Day 2
Welcome - Overview/summary of previous day Objectives of DAY 2 Dr Ian Gibson, UEA, UK Prof Jonathan Edwards, UCL, UK
Neurology: Lead Angela Vincent (Oxford Univ.)
Keynote Speech:
Imaging Inflammation and Its Role in Neurodegeneration
Professor David Brooks, Imperial College London, UK
Immune-Brain Communication and Relationship to Inflammation Dr Neil Harrison Sussex Uni, UK
FMRI and ME/CFS Prof James Baraniuk Georgetown University, USA
Discussions
Chaired discussion with participants
Biomarkers
Immunological markers in ME/CFS Professor Sonya Marshall-Gradisnik
Professor Don Staines Griffiths University, Australia Australia
Vision and ME/CFS Dr Claire Hutchinson Leicester Uni., UK
CSF Proteomics in a Swedish ME/CFS patient cohort Prof Jonas Bergquist Uppsala Uni, Sweden Sweden
Glucocorticoid receptors and ME/CFS Dr Amolak Bansal, Epsom and St Helier NHS University Hospital, Surrey, UK
Molecular markers before/after exercise Prof Betsy Keller, Cornell Uni, USA
Discussions
Chaired discussion with participants
Clinical trials
Trial design, good practice Prof Jonathan Edwards, UCL, UK
Norwegian rituximab research/trials Prof Olav Mella/ Dr Oystein Fluge Haukeland Uni.,Norway
Discussions
Chaired discussion with participants
Additional Topics
Funding tbc
Discussions
Chaired discussion with participants
Adjourn

EMERG

Background

For a long time it has been the objective of UK charity Invest in ME Research to forge international collaborations between researchers.

IiMER is a member of the European ME Alliance (EMEA) and EMEA has joined the European Federation of Neurological Associations in order to promote ME in Europe.

With our EMEA colleagues we have also had discussions on forming a European Advisory Board which would allow EMEA to discuss, initiate and fund biomedical research into ME. This has led to further development of the idea.

During the Invest in ME Research BRMEC5 meeting in May 2015 discussions with European researchers were conducted about the future of ME research and how better to coordinate and link together research activity in several European countries.

Based upon these conversations there appears to be overwhelming support and enthusiasm from the group of researchers whom IiMER/EMEA have brought together to work cooperatively and more effectively.

Forming a group or consortium of European researchers represents a very progressive step in not only helping to establish new collaborations and cement on-going ones but also in developing new research ideas and priorities and bidding for funds that would allow us to work together on joint projects.

This is the genesis of EMERG - The European ME Research Group

Facilitated also by our supportive MPs IiMER convened the inaugural meeting in London to bring this together in the hope that rapid and lasting progress can be made in the research, treatment and cure for myalgic encephalomyelitis.

Later, in January 2016 Professor Simon Carding and Dr Uldi Berkis from Latvia met in Norwich Research Park to discuss future planning and agree on a strategy.

EMERG also met prior to the BRMEC6 Colloquium in London in May 2016.

The charity continues to pomote European collaboration between researchers. The emergence of the EMERG concept could prove to be a critical developments in research into ME in Europe over the last decade.

Read more

Our Conference Journals

Our Conference Journal
This year was the tenth year that the charity had organised an international conference week.

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BRMEC4 RESEARCH MEETING LONDON, 2014

The BRMEC4 Colloquium was intended to harness the potential of international collaboration with an objective of extending research cooperation and help drive new initiatives with biomedical research into ME.

The research meeting was in London and preceded the IIMEC9 annual international biomedical research conference on 30th May 2014.

Almost 50 researchers from nine countries attended the colloquium and a number of new initiatives were created which will benefit biomedical research into ME.

Welcome to London and BRMEC4 2014

Dear Participants,

Welcome to the Invest in ME Biomedical Research for ME Colloquium Meeting (BRMEC4) on 29th May 2014. Thank you again for participating in this exciting and innovative meeting which builds on the foundations made in previous years through meetings organised by the dedication and commitment of Invest in ME and its supporters.

Promising developments have been initiated in recent years which have created important possibilities for changing the way that Myalgic Encephalomyelitis (ME, known also as or ME/CFS or Chronic Fatigue Syndrome (CFS)) is researched and the way that patients are treated. High-quality research by an impressive group of researchers and physicians, with an emphasis on international collaboration - these are the aims of Invest in ME and it is our intention to continue to facilitate this and encourage new scientific research endeavours to understand the pathogenesis of ME.

This will be our fourth international ME research colloquium in London, taking place prior to our annual IiME international conference, and we look forward to enabling a unique contribution to understanding ME and suggest future research. For those who can use CPD points then this meeting has been awarded 6 CPD points by the Royal Colleges.

Co-Chairs of the meeting will be Dr Ian Gibson, former Dean of Biology at UEA, and Emeritus Professor of Connective Tissue Medicine Jonathan Edwards, University College London.

We look forward to meeting up in London.

Warm regards

Kathleen McCall Chairman Invest in ME

Invest in ME BRMEC4
Welcome and introductions Co-Chairs: Dr. Ian Gibson Prof.Jonathan Edwards UCL
Pathogen Discovery and Pathogenesis - CFI Dr. Mady Hornig, Columbia Univ, USA
Infection-induced autoimmunity in ME Prof. Jonas Blomberg, Uppsala Univ, Sweden
Microbiome of ME/CFS patients Prof. Maureen Hanson, Cornell Univ.,USA
OMI research Update Dr Andreas Kogelnik, OMI, USA
Chaired Discussions Prof. Jonathan Edwards/Dr.Ian Gibson
Antibodies in Neurological Diseases Prof. Angela Vincent, Oxford Univ.
Rituximab multi-centre clinical trial Prof.Olav Mella/Dr. Oystein Fluge, Bergen, Norway
Rituximab UK clinical
- Preliminary B-cell study
Dr. Jo Cambridge, UCL, UK
EBV and ME Prof. Carmen Scheibenbogen, Charite, Berlin
Chaired Discussions Prof. Jonathan Edwards/Dr.Ian Gibson
Update on ANS studies Prof. Julia Newton, Newcastle, UK
Brain imaging and ME Prof. James Baraniuk Georgetown Univ., USA
NK-, B- and T-cell phenotypes and function in patients suffering from ME Prof. Sonya Marshall-Gradisnik, Griifiths Univ.,Australia
ME Biobank Dr. Eliana Lacerda/Dr Luis Nacul, LSHTM
Chaired Discussions Prof. Jonathan Edwards/Dr.Ian Gibson
Ways to Continue Collaboration and Discovery Funding Possibilities - IiME Proposal Plenary: Prof. Jonathan Edwards/Dr.Ian Gibson
Closing Summary and Future Directions Prof. Jonathan Edwards/Dr.Ian Gibson Briefing to Invest in ME Conference

Our Conference Journals

Our Conference Journals
For each conference we produce an edition of the Journal of IiMER.
Containing news, articles and conference presentation abstracts.

Read more


BRMEC3 Research Meeting London, 2013

In May 2013 the Biomedical Research into ME Collaborative meeting was held in London with 40 researchers from 9 countries attending, prior to the IIMEC8 8th International ME Conference 2013

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME and the Alison Hunter Memorial Foundation of Australia continued the collaboration that has been a feature for several years, and which established the Clinical Autoimmunity Working Group (at BRMEC2) which met in London in May 2012.
To attempt to increase collaboration and awareness and to encourage new researchers to the field the BRMEC research Colloquiums are arranged to bring together major researchers in order to crowd source ideas on ME research - a Biomedical Research into ME Collaborative meeting.

At our IIMEC8 conference we focused on ME now becoming a mainstream research area.

Invest in ME Research BRMEC3
Welcome and introductions (Chairs: Dr Ian Gibson/Professor Hugh Perry)
Pathogen Discovery and Pathogenesis = CFI (Professor Mady Hornig)
Retroviruses and ME (Professor Greg Towers)
Pathogen Discovery (Professor Jonas Blomberg)
Gut Microbiota and ME (Professor Simon Carding)
Chaired Discussions (Dr Ian Gibson/Professor Hugh Perry)
Experience of Rituximab in ME/CFS and present a case for extending clinical trials
as per Norwegian protocols or other parallel trials
(Dr Oystein Fluge/ Professor Olav Mella)
Rituximab in autoimmune diseases (Dr Jo Cambridge)
Update on immunological derangement that may dovetail with the Fluge et al findings. (Dr Don Staines)
Screening NK-, B- and T-cell phenotype and function in patients suffering from ME (Dr Julià Blanco)
Chaired Discussions (Dr Ian Gibson/Professor Hugh Perry)
ANS studies (Professor Julia Newton)
FDA Meeting outcome /Treatment with Vistide (Dr Dan Peterson)
OMI MERIT Strategy (Dr Andy Kogelnik)
Chaired Discussions (Dr Ian Gibson/Professor Hugh Perry)
Funding Possibilities
Ways to Continue Collaboration and Discovery
Chaired Discussions (Dr Ian Gibson/Professor Hugh Perry)
Closing Summary and future directions (Ian Gibson/Hugh Perry/IIME)

A conference report for the IIMEC8 public conference was written by Dr Ros Vallings and included these comments regarding the Colloquium -

I was privileged to attend the 8th IiME conference in London on 31st May 2013.
This conference was preceded by a one day symposium gathering together 34 clinicians and researchers from a number of countries. The presentations, brainstorming and discussion will, I am sure, lead to much collaborative research, sharing of ideas and furtherance of understanding of this complex and very serious illness.

Prior to the conference IiME and AHMF had organised and hosted the Biomedical Research into ME Collaborative (BRMEC) meeting. This would actually be third such annual meeting organised in London around the conference events (we held a round-table "Corridor Conference" in 2011 and the two-day Clinical Autoimmunity Working Group (CAWG) meeting in 2012. We brought together 40 biomedical researchers from nine different countries to discuss, educate, cooperate and form collaborations in the future - for the benefit of all people with ME and their families.

The meting was a huge success with many complimentary comments being made by the researchers. The researchers continued to network at the IiME pre-conference dinner in the evening. There were many threads and new initiatives created by this meeting and it justifies IiME's views that biomedical research into ME needs to be the focus of effort and funding if we are to create cures/treatments for this disease.
The charity continued to follow up many of the opportunities created by this meeting.

Welcome to London and BRMEC2 2013

Dear Friends,

It is an honour to welcome you to London and the Biomedical Research into ME Collaborative meeting. This meeting has been made possible through the continued commitment to biomedical research being made by UK charity Invest in ME and their supporters.

The objectives of the meeting are:

1. To present the status of the latest initiatives occurring in biomedical research into ME

2. To discuss and explore the possibilities for collaboration and for funding for biomedical research into ME

3. To generate new ideas regarding research into ME and assess research strategies for ME research

4. Review evidence for immunological derangement in ME

5. Review experiences and expertise from other research areas in order to assist ME research

6. To discuss opportunities for extending clinical trials in multiple centres and possibly internationally

7. To plan future events

We hope that the meeting will initiate new collaborations and generate new ideas for biomedical research into ME and help researchers support each other in the future.

The extraordinary skill and experience which can be harnessed by meetings such as last year’s Clinical Autoimmunity Working Group meeting in London and this year’s BRMEC meeting, as well as the possibilities to progress further understanding of the disease by “crowdsourcing” experience and ideas, promises to enable a unique contribution to understanding ME and suggest future research directions and perhaps treatments.

Chairing the meeting will be Dr Ian Gibson, former Dean of Biology at UEA and Professor Hugh Perry of Southampton University Chair of the Medical Research Council Neurosciences and Mental Health Board.

Invest in ME is keen and willing to support further collaborative efforts in biomedical research into ME and welcome the opportunity to continue these joint efforts,

Warm regards

Kathleen McCall Chairman Invest in ME


BRMEC2 Research Meeting London, 2012

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.

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 - CAWG Day 1
Welcome address Dame Bridget Ogilvie AC DBE FRS
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
Review of experience of Rituximab in ME/CFS Oystein Fluge MD PhD University of Bergen Institute of Medicine, Section for Oncology Haukeland
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
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
Exploring autoimmune pathomechanisms in ME/CFS Sonya Marshall Gradisnik PhD Associate Professor Bond University Faculty of Health Sciences and Medicine Gold Coast Australia
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
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
Plenary session Chair: Ian Gibson PhD

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

Wednesday 30th Thursday 31 May 2012, LONDON, UNITED KINGDOM


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

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

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

BRMEC1 Research Meeting London, 2011

In May 2011, during the IIMEC6 conference weekend events, the charity included a new IiME idea - the 'Corridor Conference' - with clinicians and researchers discussing ways to collaborate, discuss issues and generally to progress knowledge and opportunities for research.

Thus was born the Invest in ME Biomedical Research into ME Colloquium - an event where researchers, and clinicians, from around the world, could cooperate, share experiences and ideas and form future collaborations which would help overcome the lack of funding being given to biomedical research into ME by those bodies responsible for granting funding.
In this way Invest in ME sought to facilitate the type of high-quality research which we feel is the foundation for finding treatments and cures for ME

BRMEC1 - Corridor Conference - The Researchers Meeting

‘The Corridor Meeting’ was attended by 20 researchers/clinicians from 7 different countries and there were some observers present too.

Professor Geoffrey Burnstock gave a short presentation on purinergic signalling and the CNS to encourage new avenues to explore.

Professor Tom Wileman from University of East Anglia chaired the meeting skilfully and after several hours of discussion there was an action point for collaboration and co-operation to apply for funding for collaborative research.

We are happy to say that discussions between researchers have continued and are continuing.

We hope this will lead to more cooperation and joint ventures.

Read more

from Ros Vallings' IIMEC8 International ME COnference report

"...top researchers who were presenting at the conference, and a few others who were attending, were gathered together to discuss their current research and to look at opportunities for ongoing collaboration. This was a 'closed' meeting, but I was lucky to be able to go along as an observer. Much of the research discussed was embargoed for any mention here, as is still awaiting publication. However we were fortunate to have a fascinating 30 minute talk from Professor Burnstock on his theories and research on purine signalling. This talk was repeated the following day at the conference (see below). I was glad to be able to hear it twice as it was complex biochemically. This could have much relevance in ME/CFS. All the researchers were keen to have ongoing contact with a view to collaboration."

Additional Events During Conference Week

The conference this year was expanded to include several ancilliary events, all of which were meant to achieve the maximum possible effect to raise awareness and achieve progress for ME.

The conference weekend began with a visit to parliament on Thursday morning followed up by a new IiME idea - the “Corridor Conference - BRMEC1” - with clinicians and researchers discussing amongst themselves ways to collaborate, discuss issues and generally to progress knowledge and opportunities for research. The first day ended with the IiME Pre-Conference Evening Presentation with Dr Ian Gibson and Hillary Johnson presenting on Science, Politics and ME from both sides of the Atlantic. Friday the 20th May was the conference day with for the full day of presentations. In the evening we were pleased to host an informal meeting with researchers and representatives of the European ME Alliance (EMEA) to allow more informal discussions to take place.
On Saturday 21st we hosted and chaired the EMEA AGM – now eleven European countries working together.

Invest in ME published its Journal of IiME [click here] at the conference and abstracts of the conference presenters' presentations are included therein.

Visit to Parliament

The visit to parliament to meet APPG members and other MPs was organised by Invest in ME to allow interested MPs to listen directly to biomedical researchers and clinicians tell about their latest research and experiences in treating ME patients.

We had discussed this with the acting chair of the APPG, Annette Brooke, for many weeks before the event and it is credit to Annette’s office that this could be organised.

The group organised by Invest in ME included Annette Whittemore and Dr Judy Mikovits from WPI, USA; Dr Andreas Kogelnik OMI, USA; Dr David Bell, USA and the conference chairman Professor Malcolm Hooper.

We also invited Dr Ros Vallings from New Zealand and two of our European ME Alliance member representatives - from Germany and Denmark – as we thought it important to demonstrate that this is an international problem. We also had members of the Invest in ME Steering Group for the Norwich Research and Examination Facility (Invest in ME have been in contact with Norfolk MPs in order to canvass support for our proposal for an examination and research facility).

Present were the Countess of Mar, Ian Swales MP, Chloe Smith MP for Norfolk, Marcus Jones MP and a number of MPs’ assistants who attended on behalf of their MP as well as members of the public.

Annette Brooke MP chaired the meeting and after introductions Dr Mikovits, Mrs Whittemore, Dr Kogelnik and Dr Bell gave a short description of their current work and experience with ME. Professor Hooper mentioned the PACE trial situation.

MPs were surprised to hear that ME is most probably caused by an infectious agent. It makes one wonder what information the APPG has been provided in the past or whether the information about ME has not been presented to the MPs clearly enough.

The MPs were also very concerned to hear that no one from the DoH or the MRC was considering attending or sending representatives to the IiME conference. The MPs all agreed that they ought to attend such a major event in the European ME calendar and Mr Swales expressed great surprise that Professor Stephen Holgate had yet again ignored the conference (IiME have invited him for the past few years).

The subject of MRC funding came up. Invest in ME do not believe this to be as significant as do some, especially as this is not the first time that the MRC have initiated an expert panel to look at ME. We pointed out that whilst the MRC expert panel had taken well over two years to hold a couple of tardily minuted meetings the WPI had set up a state of the art lab and energised ME research around the world.

Although this may not be a popular view in the APPG it needs to be said.

The Norfolk examination and research facility proposal was discussed also. This proposal would create a base for biomedical research into ME, using cohorts of patients who would be properly examined and diagnosed, using facilities within the NHS. We elicited support for this initiative from the Norfolk MPs.

Overall we demonstrated to the MPs there that there is a way forward with biomedical research. We do not doubt Annette Brooke will help, as will Ian Swales.

The purpose was to put faces in front of the APPG people - to show them there is more happening than the talking shop approach that previous APPG meetings became. The biomedical research and the possibilities from that are now firmly presented. Whilst we do not expect any great changes from parliament or the APPG we feel it was important to try this initiative. Other ideas and other initiatives come from this.



Last Update September 2019