Claire Tripp – Patient and Public Involvement Team Member
Last month, I visited the UK Biocentre in Milton Keynes, along with Prof Chris Ponting and Dr Diana Garcia, the DecodeME project manager at the University of Edinburgh. The purpose of the visit was to personalise the work they are doing at the Centre for DecodeME and explain where they fit into the wider project. To look beyond the science, and the data, and instead to make it about the people who we are studying and why.
When our participants return their samples, they may notice that they are sending them directly to the UK Biocentre and not to the University of Edinburgh. The UK Biocentre is where their saliva DNA is extracted from the saliva sample. Half the saliva sample is kept in the Biocentre for further research projects, and the other half will be sent to Thermofisher where the genetic testing will be carried out.
Many people are handling and processing these samples at the UK Biocentre and it is important that everyone who does so understands just how precious each sample is. Not just in its wider context of being part of the largest DNA study into ME/CFS, but on a personal level for each person taking part. For many, they’re not just sending off a little pot of spit. It’s a little pot of gold that represents so much!
Firstly, we wanted everyone at the UK Biocentre to know how much energy people with ME/CFS need to be able to provide 2ml of saliva. Some may have even forgone another activity that week in order to do so.
We also wanted to share with them how important this study is for people with ME/CFS and the personal stake our participants are investing in sending their saliva off for analysis. It was heart-warming they already partly knew this, because participants have been including messages in with their samples to say thank you and how much it means to them to take part.
Those opening and processing the hundreds of bright green outer bags every day have been touched by this outpouring of gratitude from our participants. We explained to the team why people feel so positively and strongly about their participation in this study. We told them how little research has been done into ME/CFS and why this study is not only much-needed biomedical research, but also gives hope to a community that has been ignored and stigmatised for decades.
As a PPI member of DecodeME, I was able to share my personal story of being a carer for my 21-year-old daughter who has had moderate/severe ME since she was 14. I described how her education, social interaction and daily life continues to be damaged by this cruel illness. As well as how she and everyone else surviving with ME/CFS show courage and resilience every single day and receive a fraction of the recognition they deserve for doing so.
The team at the UK Biocentre found the additional insight into DecodeME and the wider context of ME/CFS invaluable and moving. We will be producing some collaborative blogs to share internally at the Centre to raise some much-needed awareness among the staff about both the study and the disease, and to help them all feel like valuable members of our team.
Everyone plays an important role in DecodeME, whether it’s sharing a post about the study, taking part by completing the questionnaire, opening and scanning the returned samples, or answering an email into the DecodeME inbox. I firmly believe that DecodeME’s success will be achieved by everyone working together with the whole ME/CFS community and ensuring that everyone feels part of a bigger team.
February 20th 2023