Mainstreaming Finding Funding Facilitating Fasttracking Research into ME

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Since we set about trying to organise a real program of biomedical research into ME by funding research ourselves we have seen the need to coordinate research with a sound strategy rather than throwing funds all over the place with seed funding and hoping something springs up, as often we end with weeds instead of flowers and more wasted years.

Since 2010 we have had the vision of establishing a UK Centre of Excellence for ME [click here].

The Centre would be a hub for establishing a sound strategy of biomedical research into ME - able to build resources, databases, tissue bank etc and establish ME as a credible career path for researchers.

It would bring in new talent and other specialisms and educate medical students and researchers and healthcare staff of the true nature of the disease.

It would enable the establishment of a specialism in ME.

It would enable well-defined cohorts of patients to be established based on correct criteria.

It would also allow treatments to be developed from the research - a way to expedite solutions for patients.

Links would be established with virtual resources elsewhere in UK.

Some of the research would be in a virtual centre with collaborations between smaller pockets of research being performed elsewhere, but with joined-up thinking behind all research being funded, with hypotheses being formed in collaboration and funding able to be accessed by coordinated attempts.

A true translational biomedical research institute. A focal point for research into ME in UK and Europe.

It would overcome ignorance.

Although the plan was to form a hub with virtual links in UK we also recognised that one (UK) institute alone would not be enough - we needed international collaboration.

IiMER is about international collaboration. Therefore, other centres must be developed with whom the central hub and connecting spokes of research would be able to interact and collaborate.

This is why we have put so much effort in establishing international collaboration in research into ME.

NIH Announcement

Now today we can comment publicly on the announcement of the plans and awards from the National Institues of Health (NIH) for similar Centres of Excellence.

This takes the same approach as IiMER.
In USA four centres have been awarded funding. The National Institutes of Health (NIH) will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

For more information, go to: the NIH announcement link is here

The named centres are -

• Cornell ME/CFS Collaborative Research Center
  Principal Investigator: Maureen Hanson, M.D., Cornell University, Ithaca, New York; 1U54NS105541-01
  Dr. Hanson and her colleagues will investigate the biological mechanisms underlying ME/CFS by obtaining blood samples and conducting brain scans on individuals with ME/CFS before and after they undergo an exercise test designed to bring on symptoms of post-exertional malaise. Dr. Hanson’s team will use a wide range of tools and technologies to test the role of genes, inflammation and the immune system in this disease.



• Center for Solutions for ME/CFS
  Principal Investigator: W. Ian Lipkin, M.D., Columbia University, New York City; 1U54AI138370-01
  Dr. Lipkin and his team will examine an existing collection of biological samples from people with ME/CFS and healthy controls for microbial agents, such as viruses and bacteria, that may play a role in the disease. Dr. Lipkin’s group will use cutting-edge technology to conduct comprehensive genetic analyses and to identify metabolites (small molecules that have a variety of functions in cellular processes) that are present in the samples, which may help in the development of diagnostic tests for ME/CFS.



• Topological Mapping of Immune, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms
  Principal Investigator: Derya Unutmaz, M.D., The Jackson Laboratory, Farmington, Connecticut; 1U54NS105539-01
  Dr. Unutmaz and his group will use novel tools to take a detailed look at how the immune system, the microbiome (our body’s complete collection of microbes including bacteria and viruses) and metabolism (the chemical reactions that produce energy for the body) interact in ME/CFS. A greater understanding of those interactions may help researchers identify causes of the disease and lead to the development of therapies.



• Data Management and Coordinating Center (DMCC) for the ME/CFS Collaborative Research Centers
  Principal Investigator: Rick L. Williams, Ph.D., Research Triangle Institute, Research Triangle, North Carolina; 1U24NS105535-01
  Dr. Williams and his team will lead the DMCC that will bring together research data from the CRCs into one database. Dr. Williams’ group will promote collaboration among the centers and the broader research community. They will provide state-of-the-art data processing systems and analytic instruments, as well as overseeing efforts to standardize data that is collected by the researchers.The NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

We are very hopeful of this development and have already made connections to people to facilitate the research.

We welcome NIH's Dr Vicky Whittemore's earlier public support for Invest in ME Research's work to establish the UK Centre.

We must also remember the NCNED in Australia which has a Centre up and running.

The Future

The NIH announcement validates Invest in ME Research's ambition and vision for a UK/European Centre of Excellence for ME - a vision we have had since 2010.

Our hope is that this approach will finally break the back of the disastrous biopsychosocial (BPS) policies which the UK establishment has forced on people with ME.

This is a great example where knowledge about ME can be spread to other areas and to other researchers and enables strong international links to be established which will benefit people with ME and their families.

Our model and plans also provides the necessary attention and urgency to this disease which people with ME and their families deserve.

Our plans are there - the development of the UK Centre and links to other research points and international Centres has been established.
Research is underway.

We invite all to support us.

Ways to help us are shown in the column at the right of this page.

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References

Invest in ME Research funded research trial at Centre of Excellence hub - the severe ME study - http://www.investinme.org/ce-news-1709-02.shtml

More about the research http://investinme.org/ce-gm-projoverview.shtml

Please join our CofEforME support campaign - ce-Support-cofeforme.shtml

An example of our initiative for international collaboration is our 8^th annual International Biomedical Research into ME Colloquium for 2018 which has been announced - http://www.investinme.eu/BRMEC%20Colloquiums.shtml#brmec8

We hope for another wonderful event full of international collaboration and progress.