Some notes taken while watching the webinar:
Prof Chris Ponting: 5 steps for a successful co-production:
1. Questionnaire from home - online (or on paper if difficult to do online) - criteria, professional diagnosis, age over 16, all severity levels
Launch Sept. 2021, hope to reach at least 20,000 people who pass the criteria
2. Saliva collection from home - by post. Samples go to the Biocentre in Milton Keynes where DNA will be extracted.
3. DNA - The DNA will go to a company ThermoFisher in California who read the DNA at almost a million positions across the genome. Half of the DNA will be kept at Milton Keynes, so when future funding allows, whole genome sequencing can be done.
4. Data - sent to DecodeME researchers in Edinburgh
5 DNA data analysis - The team in Edinburgh will do the data analysis comparing the data from the 20,000 pwME and 500,000 controls already recorded in the UK biobank. They will look for variations in genes that are more common in ME than in controls.
Hoped for outcomes
1. Biomedical evidence, catalysing evidence-based experiments
2. Overlap (or not) with the genetics of other diseases
3. Societal changes in perception of ME/CFS
What they are doing now. Working on the questionniares in collaboration with partners at Solve ME, and all the other processes involved in the study, and going through the ethics procedures. Also putting in place procurement and contracts with partners, and tracking systems for all the materials.
Sadie Whittaker from Solve ME:
Explained the You + ME registry and how that infrastructure will be used in the DecodeME study.
The registry which opened last year has a symptom, life events/activities and treatment tracker, and they collect biological samples. The individual can graph changes over time for self monitoring. The data is also available for researchers. Currently US only, but planning to go worldwide in June. Also now open to people with Long Covid, and they have some controls. Total so far over 3,000 participants.
They are working with DecodeME to use some of their infrastructure, with data housed at University of Edinburgh with Chris Ponting's research group. Participants will also be invited to sign up with the Solve ME You + ME registry, and vice versa - people in the UK signed up for the Solve registry will be given an easy option to sign up for DecodeME.
They are exploring how to enable those who give permission for individuals' data to be transferred across between the two to save entering the same information twice, and to benefit other research projects.
Andy Devereux-Cooke described how people with lived experience of ME and their carers are involved in the project and are able to influence it. He looked at PPI - patient and public involvement - in research as a relatively new development historically. In DecodeME the PPI steering group meets once a month to review and express views on progress of the project, and patients or carers are also embedded into the delivery groups including cohort delivery, and making the communications with participants ME friendly, giving insights from lived experience. This necessitates taking care of the health of the PPI participants, meaning some delays in the process.
27 minutes: Chris Ponting describes the added value of working alongside pwME, seeing impact of the disease on people's lives, adding to motivation to make a difference, and better understanding of how to communicate about the project with pwME.
Sonya Chowdhury talked about the importance of continuing to encourage people to sign up to express interest in taking part (UK only), and to receive updates (worldwide).
Questions - they had 457 questions in advance!
Since there were so many questions, and this had to be a recorded session rather than a live webinar, they plan to do another webinar next week.
i appreciate the thought gone in to making the information as accessible as possible.
