European ME Research Group
EMERG - Developing the foundations for European research into ME
A Vision of Research into ME in Europe
The European ME Research Group (EMERG) is a network of European ME researchers who formed to collaborate and share knowledge in research into myalgic encephalomyeltis (ME).
The group is creating a strategy of high-quality, coordinated biomedical research that will allow accumulation of data based on
collaboration and
sharing of experiences and knowledge,
and will assist in expanding capacity of research leading to progress in developing a rapid pathway to discovering the cause(s) of,
and treatment(s) for, ME.
In addition the group is creating the infrastructure for joint European research into ME.
Who is Involved
The building of new research and the accumulation of shared data based on collaboration
and experiences allows rapid progress in the building of a base of European fundamental research into ME.
The lack of funded and sustained biomedical research means that no one country has applied
sufficient resources to perform research into ME.
By collaborating across Europe we can harness the best talents from the best institutions who are intent
on working together as well as increase the capacity of research being undertaken.
Researchers from the major European institutes who conduct biomedical research into ME are involved in EMERG and the group collaborates with the clinicians in the European ME Clinicians Council (EMECC) and with European ME patient groups and charities within the European ME Alliance (EMEA) to provide a powerful combination of high-quality research, clinical expertise and patient participation.
EMERG History
The idea behind EMERG was formed in 2015 from an initiative by UK charity Invest in ME Research.
EMERG was intended to create a vision of collaborative research in Europe in order to increase biomedical research into myalgic encephalomyelitis (ME).
It brought together the foremost European ME researchers, and others, in order to establish an understanding of the Aetiology, Pathogenesis and Epidemiology of ME.
2023
Full EMERG Meeting in UK
EMERG is meeting at the Wellcome Genome Campus near Cambridge, UK.
New members will be present.
2019
EMERG Meeting in London
EMERG was reformed and a two day meeting was held in London in November 2019.
EMERG formed a steering group and working groups were set up to look into different areas
(see governance).
The EMERG meeting overlapped with the European ME Clinicians Council (EMECC) meeting that followed.
EMERG will work with the clinicians in the European ME Clinicians Council (EMECC) and with European ME patient groups within the European ME Alliance (EMEA)
to provide a powerful combination of campaigning, raising of awareness, building new research and accumulation of data based on collaboration and sharing of experiences and knowledge,
which would allow rapid progress in developing and iplementing a strategy of high-quality research into ME.
By collaborating across Europe the best talents from the best institutions can be harnessed.
2020
EMERG Steering Group meets
The EMERG steering group met in Amsterdam to plan strategy, assess status of working groups and discuss status of latest funding applications and collaborative project work.
2018
Plans were made to reform EMERG and build a European infrastructure with clinicians and patients.
This strategy was created by UK charity Invest in ME Research with support from the European ME Alliance (EMEA).
2016
Second EMERG meeting held
Prior to the 6th Biomedical Research into ME Colloquium in London researchers met again to discuss status.
2015
Inaugural Meeting of EMERG.
Researchers were invited to the inaugural meeting in London to discuss forming collaborative research, joint funding bids and the creation of a European network of researchers.
EMERG Research
EMERG research areas are being identified within a strategy of planned research.
In EMERG the following research is already occurring or planned:-
In Denmark immunological and mitochondrial research is being performed
In Finland sleep and autonomic studies and genome wide studiesare being performed.
In Norway genetics research is being performed as well as metabolomics and a clinical trial. Prospective epidemiological studies are proposed.
In Spain there is research on cell and molecular biology and in Sweden research is in the areas of imaging and biomarker discovery.
In UK a research programme has been established to understand the links between ME and the population of microbes that colonise the gut.
A planned clinical trial will transplant the microbiota from healthy donors into participants with ME.
A Centre of Excellence for ME is firmly established and there is research into causes and mechanism of ME.
In Iceland infrastructure for ME research is being set up.
As part of the EMERG strategy
joint research project between different members have been created and applications for funding have been made.
Read more on EMERG projects.
Recent/Upcoming Events
Involving EMERG
A summary of recent and planned events in which EMERG will participate.
These included workshops and conferences.
The expertise of EMERG members means that the group can be a powerful influence when research expertise is required to determine correct
research strategy into ME is required in Europe.
Part of the remit of EMERG will be to provide a strategy of research for ME in order to uncover treatmens and c auses.
Frequent Asked Questions
A list below of common questions concerning myalgic encephalomyelitis (ME) and the European ME Research Group
ME stands for Myalgic Encephalomyelitis.
Myalgic Encephalomyelitis (ME) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune,
endocrine and cardiac systems.
ME has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases under Postviral Fatigue Syndrome (PVFS)
since 1969 (ICD 10 G93.3).
Since 1992, the term "Chronic Fatigue Syndrome" (CFS) has been included in the Alphabetical Index and indexed to G93.3
In WHO ICD 11 the classification code will be 8E49 Postviral fatigue syndrome and this includes Benign myalgic encephalomyelitis and chronic fatigue syndrome
To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.
Anyone can get ME. It is more common in women than in men. In children the ratio between boys and girls tends to be the same up until puberty after which time it is more common in girls than in boys. However, epidemiological data is lacking and further difficulties in assessing the research data is the use of at least five different criteria for research or diagnosis (CDC, Oxford, NICE, Canadian Consensus (GCC) and International Consensus Criteria (ICC)) all purporting to study patients with a diagnosis of ME, PVFS , ME/CFS or CFS. Further Information: click here
Estimates vary between 0.11% and 2.6% of the population depending on the criteria used. In the UK the most often cited prevalence figure is 0.4% or 200 000 to 250 000 people of which 25% are children.
See also meinEurope.shtml
Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children (Carruthers et al, 2003).
There have been several documented outbreaks of ME but evidence of person to person transmission is lacking. ME is more common in some families pointing to a genetic component but there is no evidence of ME being inherited as such.
Currently there is no cure for ME. Treatment is based on managing the condition and providing symptom relief. Advances in treating and understanding ME are made every year, and progress in research to find a cure or effective treatments is very encouraging.
There are no MHRA (Medicines and Healthcare Products Regulatory Agency) or FDA (U.S. Food and Drug Administration) approved drugs
to treat ME yet.
Treatment is based on managing symptoms and avoiding over-exertion.
Patients find pacing mental and physical activities most beneficial.
Drugs such as Ampligen and Rituxan have been trialled but they have not proven to be successful.
http://www.fda.gov/drugs/newsevents/ucm337759.htm
http://clinicaltrials.gov/ct2/show/NCT02229942?term=rituximab+me%2Fcfs&rank=3
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Comments on EMERG
This is very exciting! I believe this move will jump Europe well to the lead in tackling the unanswered questions about ME.
The establishment of EMERG is very good news.
We and our members are glad to hear of this research development and the desire ’to work more cooperatively and effectively’.
Congratulations on the good work - a step forward for all ME sufferers
Congratulations and very best wishes for European collaboration in ME
exciting developments with EMERG. This collaboration promises to bring together many of the best researchers in Europe and to consolidate research findings and funding opportunities. Certainly the critical mass this will bring to ME research in Europe will be formidable. Congratulations
The formation of EMERG is indeed great news