Representing public voices in a research study

The patient voice is at the centre of everything that happens in this ME/CFS research study, so the community has influence in what is decided.

By Andy Devereux-Cooke, co-founder of the Science for ME forum and a co-investigator (Patient and Public Involvement) on the Management Group.

Read a perspective from study co-investigator Professor Chris Ponting.

There has been no other study of this size done on myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). DecodeME is a research study investigating the genetic causes of the condition. It will hopefully provide a firm baseline for further research to build on.

Involving public voices and lived experience

I became ill with ME/CFS at age nine. I had various ups and downs through the years, with my symptoms fluctuating in severity. However, from around the age of 30 my level of functioning was decreasing step by step, mainly I believe due to my attempts to keep in full-time employment. So I then tried part-time employment but that didn’t work out so eventually I stopped working.

I then started getting involved in online advocacy for ME/CFS. I helped found an online discussion forum, Science for ME, which has an emphasis on science and research. That led to people being aware that I was involved in the patient community and eventually to me being invited to be involved in the DecodeME study.

Video credit: DecodeME
Video transcript and on-screen captions are available by watching on YouTube.

Activities we run

In the management team for the study, there is Chris Ponting as the Principal Investigator, Sonya Chowdhury, Chief Executive of Action for ME, and myself. Any decision made by the management team requires at least a two-thirds majority agreement.

That kind of structure sends a strong signal to the patient community. I provide the patient voice at the centre of everything that happens, so the community has influence on what is decided. The same principle is carried through into the individual delivery teams. We always have at least one person with lived experience actively taking part.

We are committed to including as many of the community as we can in the study. Having patients involved in developing the study questionnaire ensured it was understandable and gave us a realistic idea of how much information is too much.

To enable people with lived experience to complete the questionnaire we have an online version of the questionnaire. For those people with ME/CFS who are most severely affected, we have a paper questionnaire version that they can request. We also provide telephone support for those who need it.

Video credit: DecodeME
Video transcript and on-screen captions are available by watching on YouTube.

The impact of public involvement

Having the patient voice embedded in all aspects of the research has delivered the following results.

Higher study participation

I strongly believe patient involvement results in a better study, helping more people taking part. Hopefully having the patient voice embedded in the study reassures the patient community that there is understanding of their experience.

More accurate and higher-quality research

Making sure the study questionnaire is clear to patients also brings the benefit of more accurate responses, enabling higher-quality research.

Insight into lived experience of ME/CFS

The study is already starting to provide some insight into the experiences of the patient community with this illness. In August 2023 we released a preliminary analysis of 17,000 participants who completed our questionnaire last year. Each researcher will also go away from the study with an increased understanding of how ME/CFS impacts the patients, and how that impacts study delivery.

Visibility of ME/CFS

There have been a lot of positive responses from patients. They have expressed their appreciation for seeing their condition acknowledged for the first time, both in the media and in the recorded research.

Video credit: DecodeME
Video transcript and on-screen captions are available by watching on YouTube.

Lessons learned

Be inclusive

Acknowledge that people with ME/CFS don’t have the energy levels that healthy people will have. We’ve set limits for length of meetings and spaced out meetings as much as possible to allow recovery time.

People with ME/CFS can face cognitive overload, that no doubt crops up in other illnesses as well. The more information you can provide beforehand the better, so that they’re able to take it on board.

Online meetings also tend to be the best option as energy is often best preserved by not having to travel.

Engage with patients before you start

If somebody is thinking of starting a project on ME/CFS, engage with patients and the public before you start. Try and get a gauge on what would be a good level of representation within the project that’s valuable for the project and the community.

I will always encourage more patient representation but there needs to be as much involvement as is pragmatic. There are only so many people with ME/CFS who can take part and who have the resources available to them to take part.

We need a structure to enable patients to get involved in research

There needs to be more awareness raised of resources and avenues of how to get involved in research. Ideally we need a system or resources to allow more patients to take part in research in whatever way that they can.

Last updated: 10 January 2024

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