Health rising forum post, by Cort Johnson, 8 Dec 2016: Vagus Nerve Stimulation in Fibromyalgia and ME/CFS: A Trial of One
An Emerging Treatment
My interest in vagus nerve stimulation was prompted by a number of factors. Fibromyalgia (FM) and/or chronic fatigue syndrome (ME/CFS) studies indicate that reduced heart rate variability – a sign of vagus nerve withdrawal – was not just present in these diseases, but was associated with poor sleep and reduced cognition in them. Other studies indicate that sympathetic nervous system activation – a sign of vagal withdrawal – is common in all the diseases associated with ME/CFS and FM; e.g. irritable bowel syndrome, interstitial cystitis, migraine, and Gulf War Illness. The fact that low heart rate variability is associated with a higher risk of death even in healthy individuals was a bit of an eye-opener as well.
There was my firm conviction that the “arousal” that has been with me from day one must has its roots in sympathetic nervous system activity. It was a small fibromyalgia study, though, that really piqued my interest. That study – which involved surgically implanting a vagus nerve stimulator in the neck – caused the usually pretty buttoned-down Dr. Ben Natelson to state “The results blew me away. I have never seen an effect as powerful as this.”
In a year Jean Hasse went from being bedbound and on high doses of opioid painkillers (clearly not working!) to getting her Master’s degree and regularly exercising. Many of the FM patients in the small study no longer met the criteria for FM at the end of it. The study was far too small to be definitive but these were extraordinary results. Another remarkable story concerned a woman crippled by a severe case of rheumatoid arthritis who was able to resume her normal activities.
Natelson is currently involved in a Gulf War Illness study using a non-invasive ear-attached vagus nerve stimulator (VNS) that he believes may be every bit as powerful as the surgically implanted one.
Hi cort
Thanks for all the great info. I am a newly diagnosed ME patient and I am stuck in a constant irritated wired state. Its awful, I have 3 children and I have no tolerance for their noise or anything. I would love to try a vagus nerve simulator, do u know if they can be purchased easily, thank you
Hi Eimear, I googled this and found it involves implanting a device (similar to a pacemaker) under the skin just below the left collarbone or close to the armpit. A second small incision is made in the neck to attach two tiny wires to the vagus nerve. This would need to be done by health professionals so I suspect that you would need to persuade a neurologist or similar that it would be a safe and effective treatment for ME. So far in Wales, and the rest of the UK, it is considered useful for conditions like epilepsy. Best wishes, Jan