Recruitment has commenced for the ANCHOR Study. This landmark ME/CFS research is funded by the Medical Research Future Fund to investigate the quality of life, social, educational and economic impacts of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on people living with the condition and their carers.
This project is a collaboration of researchers from the University of Tasmania, Deakin University, the University of Melbourne and Emerge Australia. In particular, we have worked closely with Emerge Australia’s Patient Advisory Group to make sure that the survey is patient/carer friendly as far as we are able. The survey has been developed in consultation with people living with ME/CFS and carers, to ensure important impacts of the condition will be investigated. Participation in the research is voluntary and confidential.
Who: We want to hear from people living with ME/CFS and carers. We want to understand the impacts of ME/CFS from both perspectives.
What: We are asking people to complete an online survey. If you prefer, the researchers will post the forms to you. The survey includes questions on ME/CFS and general health, quality of life, impacts on your education, employment, income and social relationships. We have also included a cost diary- you will also be asked about how much you spend because of ME/CFS, including on any medical and health practitioner appointments, medications, supplements, investigations (e.g. blood tests), specialised equipment, hospitalisations, travel and other costs related to your ME/CFS. We will also ask people for permission to link their survey and cost diary to their Medicare/PBS data- this will allow us to accurately estimate costs to government related to medical services and pharmaceutical use. Please note that all parts of the survey are voluntary and confidential.
The survey will take approximately 45 minutes to complete, and the cost diary will vary depending on how many resources you use. Both the survey and cost diary can be saved and completed in multiple sittings.
To access the survey and more information about it, go to:
http://melbourneuni.au1.qualtrics.com/jfe/form/SV_1ETee5dt8yiXCwl
If you would like to ask questions or receive a paper copy, please contact Dr Barbara de Graaff at [email protected] or 03 6226 4262.
