A newly established group – called the ME/CFS Biomedical Partnership – has announced that it will apply for research funding from the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). Lead investigators for the Partnership are human genetics specialist Professor Chris Ponting from the University of Edinburgh and clinician Dr Luis Nacul who leads the CureME team at the UK ME/CFS Biobank. In summary:

  • The partnership will apply for funding for a large genetics study as well as an expansion of the ME/CFS Biobank.
  • The genetics study will require saliva samples from 20,000 patients.
  • The study will look for the potential genetic cause(s) of ME/CFS.
  • Submitting a sample will be made as easy as possible in order to enable as may patients as possible to take part.
  • Patients, and their representatives, will form an important part of the partnership.

As part of the process of developing the application, the MRC has agreed to fund a workshop later this month, to help the partnership explore how to make the application as robust as possible. In addition, a Patient and Public Involvement (PPI) Steering Group has also been established to support the development of the application. The members of the steering group are:

  • Margaret, Countess of Mar, on behalf of Forward ME
  • Sonya Chowdhury, Chief Executive of Action for ME
  • Andy Devereux-Cooke from the CureME Biobank Patient Group
  • Charles Shepherd, on behalf of the ME Association, a founding member of the CMRC
  • A representative from the CMRC Patient Advisory Group

PPI means that patients and members of the public with relevant experience contribute to how research is designed, conducted and disseminated (it does not refer to those giving samples for a study, who are research participants).

ME Research UK is supportive of this application and has previously sent a letter of support to Prof. Ponting. We will be involved in this through our membership of Forward ME, and have already written to the Countess of Mar offering our support in her role as the Forward ME representative on the PPI Steering Group. Should the application be successful, we intend to support the collection of samples alongside our colleagues from other charities.

We will keep you updated with developments as they occur. A decision on the application is expected in the first half of 2020.