June 2016 updates: The following summary is from the Invest in ME Research June 2016 IIMEC11 Conference Report by Dr. Rosamund Vallings.
Professor Simon Carding (Norwich Research Park, UK) talked about the work of the European ME Research Group (EMERG). He stressed the need at addressing biomarkers, including brain imaging. Looking for cause, making a diagnosis and standardisation of samples should be included. A “together approach” is needed. Euromene is a group of researchers hoping to establish a network across Europe. Euromene and EMERG will work together. There is a need to look for opportunities for funding. They will build on current activity and feasibility, such as:
1) Infectious origin
a) environment
b) microbiome alterations
2) Clinical trials
a) Rituximab
b) Bacteria based therapy.
Coming together is a beginning. Keeping together is progress. Working together is success. (Henry Ford)
The Journal of Clinical Medicine has just accepted an article by Navena Navaneetharaja on: The Role of Intestinal Microbiota and Virome in ME/CFS.
(end of summary and June 2016 updates)
April 2016 updates on this exciting development in biomedical research into the neurological disease myalgic encephalomyelitis (ME).
In July 2015, UK charity Invest in ME (IiME) announced the formation of a new European ME Researchers Group (EMERG). The enthusiasm of the researchers was inspiring, and EMERG met for the first time as a group in October 2015.
Invest in ME is a founder member and Chair of the European ME Alliance (EMEA) of like-minded patient organisations. EMEA joined the European Federation of Neurological Associations (EFNA) in June 2015.
From the outset of forming as a UK charity 10 years ago, Invest in ME (now also known as Invest in ME Research) forged a path for the future of biomedical research into this disease by bringing together patients/carers, doctors, scientists, and interested political and media representatives, with their first Invest in ME Conference in 2006. The 11th (IIMEC11) takes place on 3rd June 2016.
The 6th Invest in ME international Biomedical Researchers in ME Colloquium (BRMEC6) will be held over two days on 1st & 2nd June. This is a workshop the charity has developed year on year since 2011, at which invited biomedical researchers meet to discuss their work, share ideas, plan and form collaborations to establish diagnostic tests and treatments for this neurological disease.
So we can see how the formation of EMERG is the latest milestone in the right direction thanks to Invest in ME & their Research Advisory Board, fellow members of EMEA, and all the researchers involved in the genesis of EMERG.
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
Thanks also to the supportive MPs helping to convene the inaugural meeting of EMERG in the hope that rapid and lasting progress can be made in the research, treatment and cure for myalgic encephalomyelitis.
An online group card to wish EMERG well in this exciting new venture at their first meeting in October 2015, is still open to sign in 2016 if you’d like to add a message.
UPDATES from October 2015
UPDATES reported by Invest in ME Research:
October 2015: Great meeting! Very productive going forward. Great to see the collaboration going on on a pan-European level. The way forward.
It was agreed in the EMERG meeting that an EMERG page would be created on the new IiME web site. In the meantime, we will update this page with news of EMERG http://www.investinme.org/EMERG.htm
November 2015: Part of the EMERG project coming together.
Several of the applicants in the European ME Research Group have had a successful application for funding from the EU accepted as part of the COST procedure. This topic and this application were discussed at the inaugural meeting in London. We hope that this can be integrated into the EMERG work already formed into workstreams.January 2016: Professor Simon Carding and Dr Uldi Berkis met in Norwich Research Park to discuss future planning.
April 2016: The next meeting of EMERG will take place prior to the 6th Invest in ME Biomedical Research into ME Colloquium 2016 in June in London. Joining EMERG members will be many of the COST group as they plan together to collaborate on establishing a strategy of biomedical research into ME.
Further Reading –
CREATING A NEW VISION OF RESEARCH INTO ME IN EUROPE
‘An Inspiration for the World’ by Professor Leonard Jason
Meet Mady Hornig (Director of Translational Research in the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health in New York, USA) at Norwich Research Park October 2015.
I knew I wouldn’t find the United States in the list of countries. They’re so far behind, it’s ridiculous.
Thank you for commenting. EMERG is a new development in Europe, and collaboration with researchers from United States and other countries is facilitated through the international Invest in ME Conference (IIMEC) and Biomedical Researchers into ME Colloquium (BRMEC). Details of both are at investinme.eu e.g. the conference reports and DVDs. Mady Hornig and Daniel Peterson from US have been in Sweden this week for a conference on Severe ME, and Mady Hornig is at the meeting at Norwich Research Park today. Researchers in both Europe and USA have been hampered by the same lack of government funding to research this disease for decades, so fundraising, crowdfunding and charitable sponsorship has had to get the ball rolling while citizens lobby their political representatives for adequate funds for translational biomedical research. Mady Hornig is working with Ian Lipkin at Columbia University, Dan Peterson is at Simmaron Research, others such as Andy Kogelnic at the Open Medicine Institute / Open Medicine Foundation, where Ron Davis is leading a big data study for severe ME, John Chia at the Enterovirus Foundation, to name a few. So things are moving in the right direction now and at a faster pace thanks to international cooperation.
My daughter has had server m..e for 7 years now she is inpain all the time I don’t know what I can do any advice please
Very sorry about your daughter, Deborah. As patients, we genuinely empathise, and is why we are so desperate to support this research for tests & treatments. This is such a complex illness that changes over time, and each case is individual. Here are the current international expert medical guidelines, and hard copies of each are available from Invest in ME.
Overview of Canadian (international group) Consensus Criteria for ME/CFS –
http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
International Consensus Primer for Medical Practitioners –
http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
Is your daughter well enough to have a medical review, does she have a supportive doctor, and are either of you in touch with any support groups, such as for severe ME or for parents? You’re welcome to email us at fundraising4me@gmail.com or contact Invest in ME directly at info@investinme.org – they are also experienced as patients & parents themselves.