An international survey of experiences and attitudes towards transcutaneous auricular vagus nerve stimulation for people with ME/CFS, 2023 Leslie et a

Discussion in 'ME/CFS research' started by Sly Saint, Dec 1, 2023.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Background and objectives: Myalgic encephalomyelitis (ME) is a complex, multi-system neurological condition. Dysfunction of the autonomic nervous system is a primary feature in diagnostic criteria, and management may include attempts to stimulate the parasympathetic nervous system. Transcutaneous auricular vagus nerve stimulation is an intervention that has been researched in neurological disorders, e.g. epilepsy, depression. While little evidence exists for its use in ME, this survey aims to explore the experiences and attitudes of people with ME to this intervention.

    A 31-question online survey was devised and released on ME websites, Twitter and Facebook pages. People with ME read the information sheet and followed an online link to the survey. The survey was open for four weeks and all answers were anonymous.

    116 responses were received. 56% of respondents reported favourable effects. Benefits of transcutaneous auricular vagus nerve stimulation were identified in relation to post exertional malaise, pain, gut problems, urinary problems, mental health, and the ability to leave the house. 67.2% of respondents would recommend the intervention to other people with ME. However, 4.3% would not recommend it and 6% reported it made them worse. 8.6% received support in setting up the device from healthcare workers.

    The survey highlights that many people with ME experience significant benefits from using transcutaneous auricular vagus nerve stimulation; however due to potential negative effects there is the need for formal intervention studies to clearly identify safe parameters.
  2. Creekside

    Creekside Senior Member (Voting Rights)

    On PR, someone just reported favourable effects from touching one electrode of a 24V battery. I explained why this is nonsense in terms of physics and biochemistry, but it's still a "report of favourable effects". I don't have much confidence in studies based on qualitative results.

    Are there any studies showing what percentage of respondents of such studies report favourable effects from placebos? Might it be somewhere around 50%? I suppose it depends on how good the spiel is for the treatment.
    RedFox, Sean, EndME and 4 others like this.
  3. Wyva

    Wyva Senior Member (Voting Rights)

    Budapest, Hungary
    Someone just explained to me in my group that you need to believe in a therapy (eg specifically this one, among many others) in order for it to work, otherwise it won't and the people who don't recover from ME/CFS are just not trying hard enough, they give up and also fail to understand the disease and so on. And because of this they are frustrated and are mean to those who recover or improve significantly and thus suppress recovery stories in online communities because they don't want others to succeed either or whatever. It was literally painful to read but my first thought was "a-ha, found the person who is probably responsible for all that placebo effect in unblinded trials/trials without a control group". /sarcasm
    RedFox, RaviHVJ, Sean and 7 others like this.
  4. Trish

    Trish Moderator Staff Member

    That's tough to deal with in a group, Wyva. I guess the person sincerely believes what they are saying, having been misled by therapists or people who want to believe they have cured themselves rather than being lucky.
    That shows once again how important it is that trials of this sort of stuff are double blinded and run for sufficient time. It must be possible to do a sham version as a control group.
    Sean, NelliePledge, Kitty and 5 others like this.
  5. Creekside

    Creekside Senior Member (Voting Rights)

    I once walked into a natural health store, and there was a group of people there holding electrodes connected to some device (made electric pulses I think). One person with a blissful look on his face told the rest of the group "I can feel my cancer melting away!" I regard that incident as the creepiest experience in my life. I just couldn't understand how someone could believe that simple electrical pulses would melt their cancer away. I'm pretty sure that that sort of group feedback was important in convincing everyone else that it was working for them too.

    Creepy, creepy, creepy!

Share This Page