An audio recording of this blog post can be found below:
We know how important DecodeME is to people with ME/CFS and we are grateful to the patient community for such a positive reaction to our launch. We have also seen and taken on board the frustration expressed by some who haven’t been asked to donate a DNA sample, and wanted to address the various points raised.
If you have completed the DecodeME questionnaire but have not been asked to provide a DNA sample it is not because we are questioning if you have ME/CFS. You are still a DecodeME participant and your questionnaire answers are valuable to understanding more about the illness and helping the development of future treatments.
It means that for this study your answers didn’t meet all requirements for the DNA stage. These requirements are set out by the study criteria that were agreed by the team, including people with ME/CFS, and in response to peer review. This is standard practice and ensured that the study received funding. Using strict criteria is important for scientific research studies as it ensures the results can stand up to scientific scrutiny and therefore progress further research and the development of treatments.
The DNA part of the study will help us understand the biological causes of ME/CFS which will benefit the whole community whether individuals meet the criteria we are using or not.
We also understand any frustration caused by not knowing why you weren’t asked for a DNA sample or why you weren’t able to view the criteria before completing the questionnaire. We don’t take this frustration lightly, however, it is vital that we not disclose the criteria at this stage. If we had, this would inevitably introduce unwanted bias into the study. It is essential that we protect the integrity of the DecodeME study design for when we publish results. Only then will we make the criteria publicly available. We hope you understand that our reasons for this are in the best interest of the whole ME/CFS community.
As with every aspect of this study, there was strong Patient and Public Involvement (PPI) in the decisions about the criteria used. For more information on the Patient and Public Involvement in the study please read our FAQ: How have you involved the community in the design of the project?
We are so grateful for everyone who has signed and up and taken the DecodeME questionnaire and appreciate the energy and emotions that may have gone into it. We hope the above has provided more clarity on the processes in place for the DNA stage of the study and emphasised the importance of ALL DecodeME participants, not just those asked for a DNA sample.
Thank you for supporting the study, your experience matters.
The DecodeME team.