Welcome to No-Men-Bar for M.E. We want to use ‘Movember’ awareness-raising of men’s health issues to raise ME Awareness by featuring some male supporters of UK charity Invest in ME Research (IiMER) who either have ME or are friends or carers of people with ME (Myalgic Encephalomyelitis).
Please contact us if you’d like to write a guest post for our blog, or just email us your text and any photos or find us on Facebook or Twitter.
If you’re growing a mo for IiMER for Movember this year, thank you!
It’s also an opportunity to raise funds for the vital work of Invest in ME Research, and this year a friend has kindly offered to match donations up to a maximum of £500! justgiving.com/fundraising/nomenbar4me#
Like many autoimmune diseases, ME is more common among women than men, so people may not be aware that men and boys of any age also get ME.
In October 2015 oversight for research into ME/CFS was shifted by the American National Institutes for Health (NIH) from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke (NINDS).
NIH was represented at the 2016 Invest in ME Conference by Dr. Vicky Whittemore, a Program Director at NINDS, joined in 2017 by Beth Unger of the American Centers for Disease Control (CDC) and by the world’s finest biomedical researchers and expert doctors in this disease.
We hope you like the ‘little protest song’ below by Eirik Randsborg, whose wife was diagnosed with ME in 2004. Ever since they have been a couple, Eirik has been an advocate, including a role of Vice Chairperson of the Norwegian ME association, a member organisation of the European ME Alliance (EMEA). The image for Eirik’s song was kindly provided by Sally Burch, Secretary of Hope 4 ME & Fibro Northern Ireland, which joined EMEA as an associate member in 2017. IiME Research is a founding member organisation and current Chair of EMEA.
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
b) microbiome alterations
2) Clinical trials
b) Bacteria based therapy.
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.
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.