An international survey of experiences and attitudes towards Transcutaneous Vagus Nerve Stimulation for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
This was published in the journal Fatigue: Biomedicine, Health & Behavior in December 2023 and is available here.
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Background
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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.
This has been presented as a poster at the IACFS/ME conference in 2022. The poster can be downloaded here, and is included at the bottom of this page alongside text description of key findings.
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Thank you again to everyone who got involved with the survey, and to Dawn and Andrea for making it happen.
Demographics
85% of respondents were female
Mean Age range: 51-70 years
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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
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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