Not everyone who takes part in DecodeME will be asked to provide a DNA sample. This is because we are using narrowly focused criteria, focused on IOM/NAM & CCC.  This does not mean that they do not have ME/CFS - only that they aren't eligible for the DNA stage of this study. This could be for a number of reasons (e.g. how their symptoms present for example).


Unfortunately, due to the large size of the study and the importance of avoiding any bias, we are unable to inform participants of the reason they did not meet this criteria. However, the answers you provide at the questionnaire stage are still valuable to ME/CFS research and participants may still be contacted about future research opportunities if they consented to this.


If you are not asked to provide a DNA sample, you are still a DecodeME participant and the information you have provided in the questionnaire is incredibly useful to ME/CFS research. For more clarification on this, read our blog post on DecodeME Participant and Criteria for the DNA Stage.   


For more information on the study criteria and methods used, you can read our published study protocol on the BMC Neurology website HERE.

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A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research