Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw appeared in video messages on our January 2022 webinar, explaining their roles talking to the online ME/CFS community about the study and encouraging people to register.
Sonya Chowdhury: So we’re now going to hear from, we’ve got two short films that are just a minute long. Pippa and Anna have pre-recorded these because that’s easier for them in terms of managing their energy, so I’ll leave them to introduce themselves.
Hi. I’m Anna. I am a patient and I have had ME/CFS for 11 years now. I am on the DecodeME team in the Marketing and Communications Group and, essentially, my role is
checking that any communication that’s going out to potential participants is clear and easy to comprehend even for those of us who have quite severe cognitive dysfunction. I’ve never been a part of anything like this before. It’s incredibly exciting. And the biggest thing for me is how inclusive DecodeME is. How much patients
are being listened to and how much patients are actively being sought out for their input. It is just incredible. As someone who’s been ill over a decade and who has felt ignored and invisible for so long, this is just so refreshing and so exciting.
Hello. My name is Pippa Stacey. I’m a writer and a blogger and I mostly work freelance in the charity sector and I’m part of the DecodeME Marketing and Communications team.
I myself have lived experience with ME. I’ve lived with the condition for about 12 years now and I know that as well as managing all of the physical elements of the condition and how utterly life-changing they can be, one of the most difficult things to deal with day-to-day is just hanging on to a level of hope and a belief that things might get better and I think that’s why DecodeME means so much to so many people. And, as somebody who can very much relate to that, it’s been so incredible to see just how dedicated the entire team is to making this project a success. So much input and so much attention to detail has been given to every little element of the project, so I hope this reassures you that everybody involved is absolutely committed to making this a success. I think, ultimately, a project of this scale is a testament to the community and all of the
people who are out there feeling somewhat invisible and like they aren’t being heard. So thank you so much in advance for any support you can offer as we move into the recruitment phase. Please keep spreading the word and you can rest assured that everybody on the team will be doing their best to deliver something that really could be a game changer and, for me, this is the most hope I’ve felt in years so it’s absolutely wonderful to be a part of this.
Read the rest of the webinar transcript:
Launch update from Chris Ponting
Claire Tripp’s talk on Patient & Public Involvement
Anna Redshaw and Pippa Stacey’s short video talks
Your questions on the study answered