- Our long term aim is to develop a PROMs (Patient Recorded Outcome Measures) tool for and by people with ME which will : help clinicians understand how debilitating ME can be; allow patients and clinicians to compare the effectiveness of treatments according to objective measurements without having to rely on subjective ones; hopefully make a valuable contribution towards developing a diagnostic tool allowing a more clear cut entry criteria for clinical trials
- We are currently focusing on fingerprint quality (and are lucky enough to have an official fingerprint expert working with us), body temperature and heart rate/ blood pressure on standing. We are looking into the easiest ways for people with ME to record this data themselves as many will be too debilitated to collect and record it via a website on a regular basis.
- We are also hoping that results collected by this website may assist future research
- To create momentum for change and empower the ME community. We are currently using this website to record and analyse the data which we collect from members of local ME support groups and from controls. You will only be able to access the Public Menu parts of the website (unless you have been invited to join the Members)
The project is devised and run by ME patients belonging to the Chester ME Self Help group.