Surveys
Participate in surveys that are relevant to ME/CFS, related conditions, health care or disability.
Surveys
Physios for M.E. taVNS international survey
Physios for M.E. are seeking your feedback about your experiences and attitude towards transcutaneous auricular vagus nerve stimulation (taVNS).
Do you have ME/CFS or Long COVID (with Post Exertional Malaise - see participant information sheet for more details) and are you currently using, or have you ever used, transcutaneous auricular vagus nerve stimulation (taVNS)? This is the method of electrically stimulating the vagus nerve via the ear, using a TENS machine or a specialist device.
The researchers would like to hear about your experiences - positive or negative - about using this approach.
The survey has 35 questions and may take up to 20 minutes to complete.
More information about the survey and how to check whether you may be eligible can be found on the participant information sheet. The link to complete the survey is at the end of the participant information sheet.
Principal Investigator: Dr Nicola Clague-Baker at Nicola.Baker@liverpool.ac.uk
Tell about your experiences in healthcare systems in SA
People living with disability face significant barriers to accessing healthcare systems ranging from the daily grind of inaccessibility, through to serious harm, injury and avoidable death.
Purple Orange is keen to better understand the experiences of people living with disability with regards to health services in South Australia.
If you are a person living with disability or supporter, please complete this survey asking about your experience of negotiating healthcare services in South Australia.
The survey consists of 11 questions and takes about 20 minutes to complete.
Chronic illness survey adventure
"The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) is a survey-based study to probe more deeply into ME/CFS, long COVID, POTS, hEDS, and MCAS. Our survey began by examining the symptoms listed in sets of diagnostic criteria for each illness. Then, we incorporated validated surveys for complex symptoms such as pain or fatigue. But that was just the beginning.
Next, we recruited clinical partners to help recruit participants and validate their own patients’ diagnoses, and partners with lived experience of each of these diseases. Together, we gathered patient-reported symptoms not present in any set of criteria.
Now, we need your help to gather the richest dataset on complex chronic disease ever created. Let’s discover more about what we have in common and more about what makes us unique. Join us on this year-long adventure!"
Survey One: up to 30 mins
Surveys Two - Six: 15-20 mins
To register for the survey, sign up here.
Or for a visually quieter page to sign up (less colour, less information, and no moving parts), sign up here.
The surveys will be released monthly, but remain open for a year from May 2021.
All six surveys need to be completed.
Researchers from University of SA and Flinders University are looking to understand consumer healthcare needs
Your support in this study will help us to understand your healthcare needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.
Survey: 20 mins
Last edited: 26 March, 2024