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Action for M.E. is part of the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.

In June 2020, the partnership was awarded £3.2m by the Medical Research Council and National Institute for Health Research, to begin work on DecodeME, a ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

This research will be a genome-wide association study (GWAS), a very large genetic study that seeks to uncover some of the biological roots of ME/CFS. By probing small DNA differences among people, a GWAS can help to pinpoint the genetic causes of disease and guide drug development. This design has previously been helpful in identifying genes together with molecular and cellular pathways that contribute to disease risk. Read more about the science of GWAS.

To work well, the study needs to recruit around 20,000 people with an ME/CFS diagnosis whose DNA will be compared with that of a similar number of non-ME/CFS matched controls. These would be people from a similar population who do not have ME/CFS, such as people drawn from the UK ME/CFS Biobank.

A GWAS has the major advantage that its results indicate root causes of illness, because DNA doesn’t change with ME onset, so GWAS findings reflect causes rather than effects of illness. With most other approaches, it is not usually possible to know if findings indicate the effects of illness, or the cause. For example, people who are unable to exercise are likely to show molecular changes that are solely due to being sedentary, rather than highlighting the root causes of their disease.

Who is involved?

The ME/CFS Biomedical Partnership is a collaboration of researchers, people with ME/CFS, carers and advocates, which has grown out of the UK CFS/ME Research Collaborative (CMRC), established in 2013 by Prof Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton.

The grant for DecodeME has been awarded to Prof Chris Ponting (Principal Investigator) at the University of Edinburgh and he is ultimately responsible for successfully delivering the project. Working alongside Chris is Dr Luis Nacul (Co-Principal Investigator) at the London School of Hygiene & Tropical Medicine and a number of Co-Investigators from both universities and the Management Group. The project team is supported by a number of people with M.E. and carers who help with recruitment, communications and marketing.

The Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community. The Steering Group will work with the study’s Management Group to put public involvement at the heart of the research project, from start to finish, and ensure that the National Standards for Public Involvement are met. The Steering Group members are:

  • Sonya Chowdhury, founding charity member of the UK CFS/ME Research Collaborative (CMRC) and Action for M.E. Chief Executive. Sonya chairs the PPI Steering Group and is also a Co-Investigator (PPI) on the Management Group
  • Andy Devereux-Cooke, representative of the CureME Steering Group and co-founder of the Science for ME forum. Andy is also a Co-Investigator (PPI) on the Management Group
  • The Countess of Mar, on behalf of Forward M.E. and the ME/CFS patients and carers that Forward ME’s organisations represent
  • Jim Wilson, representative of the CMRC Patient Advisory Group
  • Charles Shepherd, founding charity member of the CMRC and Honorary Medical Advisor of the ME Association

Register to take part

People with ME/CFS across the UK will be asked to volunteer to take part in DecodeME, which they can do from home, confirming they meet the selection criteria via a patient questionnaire already being used by the CureME Biobank. Participants will be mailed a collection kit and asked to send back a saliva or “spit-and-post” sample. These will be compared with samples from healthy controls.

Sonya Chowdhury, our Chief Executive, and Chair of the study Management Group, says:

“Simply put, we cannot do this without the determination and support of people with ME/CFS. Recruiting the 20,000 people we need is challenging – but absolutely achievable, by working in partnership with the CureME Biobank, charities, patient advocates, local support groups and others."

The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part in the DecodeME study can register their interest now on the DecodeME website.