I just wanted to let you know (for those who aren't already aware) about a 'biobank' program designed to greatly further research opportunities into ME / Chronic Fatigue Syndrome.
The program is collecting samples from ME/CFS volunteer patients in the US (YOU + M.E.), UK (CureME) and Australia (emerge), and once pooled, researchers will have access to a vast database of disease markers from these ME/CFS patients from which to take a huge leap forward in understanding and treating the condition.
You can learn more at https://SolveCFS.org and volunteer to add your own sample to the program, as well as seeing how things are progressing.
I wonder if any ME/CFS survivors here have already got involved? If so, please let us know your experiences from the 3 partner countries and if you feel it is worth getting involved ourselves. It certainly seems worth it - in fact my mother has already provided a sample which is how I found out about this exciting development.
Here's the text of an email she received this week describing the latest progress of Solve ME:
Thank you for being one of the first to pre-register for the You + M.E Registry and Biobank. It’s been awhile since we’ve checked in, so we wanted to give you a progress update.
As you know, the goal of You + M.E is to collect health information and biological samples from people living with ME/CFS and healthy volunteers, and to make the anonymized data and samples available for research. The growth of this Registry will create an information hub that will help us better characterize ME/CFS and define disease subtypes.
There are two key components to achieve this goal:
1. Collaboration and partnerships with other registries and research groups that will allow us to build the biggest dataset possible
2. Tools that will incorporate rich sources of data, including a way to record health information on an ongoing basis
You might be wondering why the Registry is taking longer than we anticipated to launch. The answer is that we’ve been working hard behind the scenes to establish partnerships: you may have seen our recent announcement
We’ve also developed a mobile app for easy capture of data over time. We recently ran the app through beta testing with a group that included people living with ME/CFS and their loved ones, and experts from clinical care, research, and technology. Feedback from this test group is currently being incorporated. Below are some screengrabs of the beta version app.
Thank you for your patience and continued partnership as we build a big data revolution for ME/CFS!
The email is signed by two well-known names in ME/CFS research who are heading the project - Sadie Whittaker & Allison Ramiller
If you are going through hell, keep going - Winston Churchill
Last Edit: 10 months 2 weeks ago by Maff. Reason: Link Updated
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