An international survey of experiences and attitudes towards Transcutaneous Vagus Nerve Stimulation for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

In February 2022 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 we wanted to share a brief overview of some of the results from the survey:

 

Demographics

 

85% of respondents were female

 

Mean Age range: 51-70 years

 

How long have had ME symptoms:

21%: 0 – 4 years

27%: 5 – 9 years

22%: 10 – 20 years

30%: > 20 years

 

Geographic location

60%: UK including N Ireland

16%: Europe

14%: Australia and Oceania

10%: N America

 

 

tVNS use

72%: current user

28%: stopped use

 

What device do you use?

50%: TENs

16%: Parasym

2.5%: Nemos

31%: Other

 

How long have you been using it?

29%: 0 – 1 month

16%: 1 – 3 months

22%: 3 - 6 months

21%: 6 – 12 months

9%: 1 year +

1%: Other

 

How would you rate the effect on your ME/CFS?

6 %: Unhelpful/made me worse

14%: Had no effect

21%: Mildly beneficial

19%: Moderately beneficial

16%: Very beneficial

16%: Too soon to say

7%: Don’t know

 

Would you recommend tVNS to other people with ME/CFS?

67%: Yes

4%: No

28%: Unsure

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.