MRC/NIHR Workshop: The ME/CFS Biomedical Partnership – Genetics and Biomarkers | 07 November 2019


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

This announcement sets out the current situation regarding a major and very ambitious bioresource initiative that involves the ME Biobank and the CFS/ME Research Collaborative (CMRC): The ME/CFS Biomedical Partnership.

The ME Association plays a very active role in both the CMRC (where I represent the MEA on the CMRC Board) and the ME Biobank (where the MEA helped fund the initial feasibility study and since then all the basic running costs amounting to c.£380,000 plus the additional £100,000 investment announced recently). I also chair the Biobank Steering Group.

As explained in the Questions and Answers document, the primary aims of the project are to discover genetic clues as to why some people might develop M.E. and to find biomarkers (abnormalities in the blood) that are relevant to diagnosis, causation and management.

The existing work of the ME Biobank, in collecting and supplying blood samples for all aspects of biomedical research will be considerably expanded if the funding for this new project is granted.

It has already involved extensive consultation with the Medical Research Council (MRC), National Institute of Health Research (NIHR), and representatives of the ME patient community and if funded will continue to do so.

As with all large research projects that involve several research groups, funders and patients, the process of planning, assessment, application and peer review does take time – and this project has been no exception.

The forthcoming workshop, which will involve the key players – MRC, NIHR, independent researchers, members of the CMRC, the ME Biobank, and representatives from the ME patient community – is a very important step forward in the development of this work.

Simon McGrath, members of the CMRC, and Patient Advisory Group, have produced a key document that will help address any questions you might have about the proposed Genome-Wide Association Study (GWAS) and ME Biobank expansion.

The application will be formally submitted to the Medical Research Council and National Institute of Health Research early in the New Year.

Prof Stephen Holgate, CMRC Chair, says: “The CMRC was set up to trigger new scientific directions and build research capacity.

“Over the last seven years, we have run five successful conferences, with a sixth planned for March 2020, fostered new collaborations and have established a series of working groups to drive forward specific areas such as medical education.

“We have worked in collaboration with researchers, the patient advisory group, charities and mainstream funders throughout this time and are delighted to see that our collective effort has led to the ME/CFS Biomedical Partnership being established. This new team will now work together to submit an application for funding to drive forward this ambitious project.”

Lead investigators for the Partnership are human genetics specialist and CMRC Deputy Chair, Prof Chris Ponting; and clinician Dr Luis Nacul, who leads the CureME team at the UK M.E./CFS Biobank.

Dr Luis Nacul says: “The CureME team at the London School of Hygiene & Tropical Medicine is excited to announce that it is collaborating with the CMRC, to submit a research proposal on M.E./CFS to the Medical Research Council and the National Institute for Health Research.

The CureME team is a critical partner in this informed and competitive submission, and is focusing at this early stage on developing the research proposal and ensuring the accurate categorisation of people with ME/CFS, using diagnostic criteria harmonised with our own protocols and with the US Centers of Excellence for ME/CFS (NIH funded).

“We will also continue our own research within the London School of Hygiene & Tropical Medicine, supporting transparent, multidisciplinary research informed by and for the benefit of people with ME/CFS. We are confident that this collaboration will help to accelerate much-needed research in this field, enabling further biomedical studies into well-defined ME/CFS.”

Medical Research Council Announcement

ME/CFS Workshop – 2019

The UK CFS/ME Research Collaborative (CMRC) and the CureME research team – UK ME/CFS Biobank – at London School of Hygiene & Tropical Medicine (LSHTM) have collaboratively identified a research proposal that it is seeking to take forward to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR).

To enable the researchers to develop a fully informed and competitive proposal, the MRC/NIHR is supporting a workshop to bring together scientists, charities and patients, to provide recommendations to improve the research proposal. Following this workshop, a research application will be submitted to MRC and NIHR for consideration for funding, following peer review.

The ME Association Ramsay Research Fund

We are a national charity working hard to improve the lives of people devastated by an often-misunderstood neurological disease. 

We believe biomedical research offers the best hope to people affected by M.E. If you would like to support our investment then please donate to the Ramsay Research Fund. 

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