Published in 2011, the MG Patient Survey research project conducted by Doctors at the RBWH in conjunction with the University of Queensland and in partnership with the MGAQ remains very relevant. Internationally, it is a unique project in that patients are able to ‘tell their personal story’.
Several papers have already been published. Professor Pamela McCombe (Neurologist) took responsibility for ensuring that the data was fully recorded. The shared words and comments are important. Topics for consideration included possible triggers, how does having the condition make you feel, what has it cost you financially, are other auto-immune conditions linked, what treatments have been prescribed etc.
The MGAQ very much appreciated the opportunity to work collaboratively with the Specialists. Patient's willingness to share their experiences was invaluable.