In February we produced "An international survey of experiences and attitudes towards Transcutaneous Vagus Nerve Stimulation for people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome."
The survey was initiated by Dawn Wiley, founder of the Facebook Group “A Vagus Adventure AVA” and Andrea Parker, an Occupational Therapist in South Australia. Both Dawn and Andrea use Transcutaneous Vagus Nerve Stimulation (tVNS) as part of the management of their ME and linked up with Dr Nicola Clague-Baker to develop the survey through her position at the University of Liverpool.
The aim of this study was to explore the experiences of people with ME who have tried tVNS. More information about the theory behind tVNS can be found in this article or you can watch this presentation by Andrea Parker.
We received 116 responses and want to thank everyone for taking the time to share their experiences. We plan to interview some participants to find out more in-depth detail as the results show a real mix of positive and negative experiences. We now want to explore whether there are identifiable groups of people with ME who would benefit from tVNS, and which settings and parameters are the most effective.
Physios for ME really enjoyed working with ME patient experts and we would be happy to help other people with ME develop their own research ideas. If you’d like to discuss this, please feel free to get in touch.
The study team will be writing up the results and will produce an article and then present them at ME and physiotherapy conferences, but in the meantime a brief overview of some of the results from the survey can be found here.
Thank you again to everyone who got involved with the survey, and to Dawn and Andrea for making it happen. We will update the website with links to the full write-up when it is published.