MEA Website Survey: Why are we asking about genetics research into ME/CFS? | 06 January 2020

January 6, 2020

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

The ME Association has been actively involved with the ME/CFS Biomedical Partnership in preparation of a major research grant application that will investigate the genetics of ME/CFS.

Please vote in the MEA website survey!
You will find it located on the homepage of this website. It appears about halfway down the page, just below the ME Biobank promotion.
Prof. Chris Ponting, MRC Institute of Genetics & Molecular Medicine.

The ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public. 

The partnership will shortly make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS).

The project will be led by Professor Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine – where all the basic running costs are provided by the ME Association Ramsay Research Fund. 

  • The study will analyse DNA (= genetic material) from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what might be causing the disease. 
  • The study should help us to increase our understanding of the disease and why it sometimes occurs in more than one member of a family.
  • This research could also help in the discovery of diagnostic biomarkers and drug treatments that would be worth investigating.

At this stage, you can help in two ways, whether you’re a patient or a supporter. 

  1. Everyone can sign up to say that they’d like to hear if the study gets under way so that they can help spread the word, and patients can indicate that they might like to take part in the study.
  2. The ME/CFS Biomedical Partnership would like your thoughts on how best to recruit patients. This will be a huge challenge and we need your ideas.

You can find out more about the study on the FAQs page of the MCBP website. 

This is an historic opportunity for ME/CFS patients, and the ME Association is looking forward to working with both patients and the research group to help make it a reality.

In the last few days alone there has been a fantastic response to promotions with over 3,000 patients signing up to the initiative!

We will keep you informed of developments as we hear them but if you can vote in our survey it will help us to gauge support for the proposed study.

More information on the research and the ME/CFS Biomedical Partnership, as well as regular progress reports, can be found on the MCBP website.

You can also follow the progress on the MCBP Twitter and Facebook pages.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

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