Question

Does the MEA have any information or feedback on the use of a new medical device called Nurosym – which is being advertised as a treatment for ME, especially for relieving fatigue and cognitive dysfunction.

Like many people with ME I am willing to try almost anything that might work and there are some positive comments on the internet from people who have been using this device. But it is expensive to purchase and I can’t find any information about any clinical trials that have been carried out to assess its effectiveness in ME.

Answer

This is a medical device that is clipped onto to the outer ear and connected by a wire to a hand-held device that controls the transmission of small electrical impulses to the ear.

In very simple terms the pulsatile stimulation that is produced in the ear is claimed to then affect a peripheral branch of what is called the vagus nerve. This is a large nerve that runs throughout the body and helps to control activity in various key organ systems, especially the heart, lungs, bowels, bladder – where it can speed up or slow down activity – as well as the brain and central nervous system.

So vagal nerve stimulation and ‘rewiring’ this part of the nervous system could, in theory, help to treat a wide range of medical and mental health conditions ranging from pain to depression.

In relation to ME/CFS there is certainly some research evidence to indicate that the vagus nerve may be involved – especially in relation to symptoms such as orthostatic intolerance and PoTS, as well as irritable bowel and bladder symptoms.

In relation to clinical trials to assess the safety and efficacy of this device, there is some evidence to indicate that it can be helpful in the treatment of cluster headaches and opiod/morphine withdrawal. As a result it has been approved for use in these two conditions by the FDA in America.

However, there haven't been any clinical trials involving people with ME/CFS. So all the evidence at present is anecdotal. And, as with any treatment like this that is accompanied by supportive patient evidence, there is bound to be a placebo effect taking place.

Having said all that, £600 is a lot of money to spend on a very speculative form of treatment. So this is not an approach that the MEA would want to endorse or recommend in our current state of knowledge. However, we would support high-quality research to assess its use.

• Please let us know if you have used, or are using, a Nurosym device and, if you have used the device and not found it helpful, were you able to get a refund?