The transformation needed for people with the chronic, disabling disease/s Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) is huge.  Sonya Chowdhury, Chief Executive of Action for M.E. and Chair of DecodeMe’s Management Group, writes.

For many years, children, adults and their families have faced significant stigma, neglect and disadvantage. This has been further compounded by low levels of funding for biomedical research. Without this, what should drive improvements in diagnosis, targeted treatments and maybe, one day, a cure? For years, and even decades, some of the most severely affected people, around 1 in 4 with ME/CFS, have been left in darkened rooms without the care, support and even understanding that they deserve.

If we’re honest, this is beyond scandalous. It’s an absolute travesty and one that we all hold responsibility for changing, not just for the 250,000 people currently with ME/CFS but the many, many more we are now seeing being diagnosed after Long Covid. If we also consider the neglect experienced by others with overlapping or adjacent post-viral diseases, the call for change becomes even more urgent and should no longer be ignored. I feel very strongly that to make big changes, we need to work together: people with lived experience of ME, charities, scientists, and other organisations.

The range of different views and experiences we have will make us stronger and our work better. Collaboration must be at the heart of transformation. No one organisation, sector or individual can achieve what is needed. The DecodeME Study is one example of this. We secured funding after a momentous, seven-year effort from people with lived experience of ME/CFS, researchers, funders and charities working together through the UK CFS/ME Research Collaborative (CMRC) which itself built on work that went before.

Uniquely, the DecodeME Study has put people with lived experience of ME/CFS at its very heart. At every stage, from study design, application and subsequently delivering the study, people with ME/CFS, their families and carers have shaped what we do and how we do it. Alongside the Patient and Public Involvement (PPI) Steering Group, we have PPI in each of the teams designated to deliver different aspects of the study.

We have also undertaken significant engagement with the wider ME/CFS community with thousands of responses which have informed different elements of work including the recruitment plan and the criteria we are applying for inclusion in the study. We have worked to the UK Standards for Public Involvement in Research but we continue to push beyond these. Our Management Group has two PPI members working alongside Prof Chris Ponting who is leading the genetic analysis, the research lead to ensure the power balance is retained and we have adjusted the speed at which we work to ensure time and space for full and meaningful involvement of all our partners thereby taking account of how the disease impacts on ability to input.

Our Partnership extends further; it includes global digital marketing agency, Itineris, and Hot Tin Roof PR agency. Our colleagues in these teams have invested time to better understand ME/CFS, adapt their practices to ensure inclusion for all our partnership colleagues including making adjustments to avoid triggering symptoms, presenting information in different formats amongst other things. This not only demonstrates their commitment to achieving our shared goal of delivering the world’s largest DNA study in ME/CFS with 20,000 participants, but strong values of inclusion which have ensured we continue to work in true collaboration.

As often is the case, it took some time to get the contractual elements of the study in place. Despite this, partners worked hard to begin setting up the study, build momentum and have already had over 27,000 people express support and interest in taking part in the study which will give us a head start when recruitment opens at the end of September.

The DecodeME Study is truly a great achievement, but we cannot stop there. There is so much more to do. But one thing we do know is that we cannot do it alone. The ONLY way that true change for people with ME/CFS now, and for those who may get it in the future, can be achieved is by us all working together in a truly collaborative and inclusive way.

DecodeMe is a perfect example of this and we hope everyone in the UK with ME/CFS will consider joining us to make the study a success. Register your interest now.