Last issue Pippa Stacey explored the positive impact that the new research into ME/CFS would have on the thousands of people living with ME/CFS
Living with ME/CFS is no walk in the park. Though I’m happy and comfortable in my disabled identity and proud of how I’ve adapted to life with chronic illness, there isn’t much I wouldn’t do to rid myself of this particular condition once and for all.
ME/CFS is a complex, multi-system illness that can really take a toll on a person’s quality of life. People with the condition not only have to manage the debilitating symptoms they live with every day, but also endure stigma, ableism, and gaslighting – even from many medical professionals. I’ve lived with ME/CFS for around 12 years now, and the lack of research interest in the condition has often felt like one of the most difficult things to bear. It had been a long old time since I last felt a real glimmer of hope, but then along came DecodeME.
DecodeME is the world’s biggest study into ME/CFS. Tens of thousands of individuals will be asked to complete a questionnaire about their lived experiences, and a subsection will go on to provide a saliva sample for lab analysis using a bespoke ‘spit kit’. The research aims to pinpoint genetic causes of the condition, so that we can better understand it and work towards developing targeted treatments. Essentially, it’s the study that people with ME/CFS have been crying out for – some of them for decades.
Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process. Myself and others, who have valuable lived experiences, have contributed in many areas: the study design, recruitment process, marketing and communications, and plenty more, to ensure the research is as accessible and energy-friendly as possible for people to take part in.
Some of these measures are predictable – the ability to take part from home, a dark mode for the website, having a simple questionnaire process available online or on paper. Others are more nuanced: easy-read (and brain fog-friendly!) instructions for those completing a spit-kit, a phone line where people with severe ME can have somebody talk them through the questions and record their answers for them, and regular webinars with adjustments so that interested participants can also engage with the science behind the study.
For me, the most enjoyable part has been feeding into the wording used in outgoing communications. I help to tailor content for different audiences, offer alternatives for challenging words and phrases, and ensure the language makes every reader and potential participant feel welcomed and included. Knowing that the core team genuinely values our insight and shapes their work around this feels incredibly empowering – something that’s been picked up on and appreciated by many of the individuals the study reaches too.
Professor Chris Ponting, chief investigator on the DecodeME study, believes the feeling is mutual: “Working alongside people with ME and carers has improved our research by motivating us every day to deliver the project to the most exacting standards. Also, lived experience of ME, woven into our communications, has without doubt increased participation greatly. And with greater participation comes a greater chance of genetic discoveries. It has been a real privilege to work with such a wonderful PPI team.”
Being part of DecodeME has been my first taste of PPI involvement in research. Now that I’ve experienced it, I can see how much value it holds – especially in projects concerning disabled people. Many studies in the past have been headed by non-disabled teams, who may have the qualifications and skills to facilitate game-changing work, but perhaps lack the lived experience that’s arguably most important of all. I now strongly feel that the ‘nothing about us without us’ mentality should extend much more prominently into the world of research, and I’d love to see this approach becoming more mainstream in the future.
DecodeME represents an important step towards more biomedical research and the answers the ME/CFS community so desperately wants. For me, however, it’s come to mean much more. This is the first time in a long time I’ve felt real hope – not only because of any potential findings, but because we’re being heard.
For so long, people with ME/CFS have felt left behind. Living with a little-understood condition alongside the challenges of an ableist world can make you feel as though you don’t quite fit anywhere, that your voice doesn’t really matter. I’m lucky enough to not be as severely affected as others, and to have an online platform where I can share the challenges of living the life I choose alongside managing my life-altering symptoms. There are many others who don’t often get a voice – people who have been living from their homes, their rooms, their beds, for years and decades. People of all ages and backgrounds who don’t have enough energy to speak aloud, who can’t even be hugged because it hurts to be touched. This study is also inclusive for them, people with severe and very severe ME, as much as it is for anybody else. And that alone is a remarkable accomplishment.
It’s still early days for DecodeME. Participant recruitment officially began in September 2022, and we need to recruit 20,000 people to take part. If you have ME/CFS, there’s still time to get involved. To find all the information you need, sign up for the study, and help change history, visit DecodeME.org.uk. You can also find DecodeME on social media, with plenty more ways you can support the research and help spread the word.
On behalf of myself, the DecodeME team, and the hundreds of thousands of people with ME/CFS in the UK alone, thank you for your support. Here’s to the future!
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