Question

I am the only person in my family to have ME that I know of. But I’ve heard that people with ME quite often have another family member with the disease. Is this true? If so, can someone with ME transmit it to their children? And has any research been carried out into the genetics of ME?

Answer

There is a considerable amount of anecdotal evidence, and some research evidence, of instances where more than one family member has developed ME/CFS. This obviously raises the possibility that there is a genetic predisposition to developing ME/CFS in some people – as happens in many other diseases such as some types of arthritis, cancer, heart disease. However, this does not mean that people with ME/CFS are going to pass on a ‘faulty gene’ to their children and that their children will then face a high risk of developing ME/CFS.

As you may be aware, the Medical Research Council and the National Insitute for Health Research have agreed to provide £3.2 million to fund a major research study (DecodeME) into the genetics of ME/CFS. The ME Association has been actively involved in all stages of development of this proposal and we are also represented on the patient participation group.

DecodeME will be collecting saliva samples from over 20,000 people with ME/CFS. The genetic material (DNA) in these samples will then be analysed by Professor Chris Ponting and his team at the University of Edinburgh. The main aim of this genetic study is to look at how genes are behaving in ME/CFS in relation to the way in which they help to control a wide range of biological activities that take place in the human body. But it may also provide some information on inheritability and susceptibility.

More information

• Please sign-up to volunteer to the DecodeME genetics study.
• Research: Evidence for a heritable predisposition to Chronic Fatigue Syndrome | 2011.
• The ME Association has produced two free leaflets explaining ME/CFS in more detail:
  • ME/CFS is a complex multisystem disease with a wide range of disabling symptoms. This factsheet provides information to help understand its symptoms and impact.
  • A factsheet that explains what the research is telling us about ME/CFS. It considers triggers, symptoms, and the pathology that might cause and perpetuate this neurological condition.