Genius cures or paths to more confusion and anxiety?
As someone who has had ME/CFS for twenty years and counting, my heart skips an excited beat when my social media feeds alert me to a new intervention that claims it will help ease my symptoms or even lead to a full recovery like the one below! Are they worth investing in?
Facebook advert/post from Neurotoned.com
You know what social media feeds are like… As soon as I clicked this one, all sorts of other ‘promises’ started to appear… grounding mats (www.groundingwell.com) purported to help me boost my energy and stamina, renew my mental focus and clarity amongst other benefits. There has also been a flurry of vagus nerve stimulators too.
Nurosym comes out as the most recommended in a survey carried out by The American Health Science institute.
“Nurosym is the first CE-Marked non-invasive vagal neuromodulation system in our evaluation, which means that its safety and efficacy have been scientifically validated.”
Vagus nerve stimulation is a ground-breaking approach to enhancing quality of life. Stimulating the vagus nerve, which plays a crucial role in the functioning of the parasympathetic nervous system, can quickly lead to a significant reduction in stress, improved mood, enhanced cognitive function, improved gastrointestinal function, and more–all without drugs or psychotherapy. The Nurosym claims (from 30+ clinical trials) to improve fatigue symptoms by 48% and POTS symptoms by 40%. Reading this article, I immediately want to purchase it, and then I realise it’s almost £600! So, I would want it to work for that investment. The article does survey some of these stimulators, taking into account clinical trials of effectiveness and research, safety and wearability, including battery duration and use of gel to secure the gadget.
Despite any cynicism, I am genuinely intrigued about some of these products. I adamantly do not believe any will ‘cure’ me and am open to the possibility that they may help me to manage my symptoms. I have become very interested in the relationship between trauma and its attendant dysregulation of the nervous system (having PTSD as I do), fatigue, and also the relationship between neuro-divergence and fatigue (see my other article here).
When I was asked to complete an activity management diary as part of the intervention programme at my local NHS fatigue clinic to which I was fortunate to be referred ten years ago, it did strike me how a number of activities that I classified as ‘high demand’ were also those where I felt in my ‘adrenalised’ fight or flight state. My colleague, Specialist Occupational Health Clinician Fiona* suggests that It can be helpful to look at the various body systems (brain, muscles, circulation, breathing, senses, digestion etc) and how we have survival instincts with how the body protects itself with fight, flight or freezing. What we need is ‘rest and digest’ - we need to do this on purpose and make time for it. Often people with fatigue (myself included) are in a pattern of what is colloquially called ‘boom and bust’ or being ‘wired but tired’. Learning how to down-regulate has been absolutely crucial for me to help support my recovery, and return to working full time- and whilst ensuring I actually manage to have decent, quality rest.
However, will vagus nerve stimulators or grounding mats help me?
The Vagus Nerve stimulators research does advocate that more clinical trials are conducted around specific symptoms and to 'make sure that Vagus nerve stimulation has been studied and evaluated for its effectiveness for your specific health needs.’ There can be side effects saying that ‘different methods of Vagus nerve stimulation are associated with different side effects too’.
“It’s also important to be aware that some devices, like Pulsetto or GammaCore, provide high-intensity stimulation which may increase the chance of side effects and may harm people with chronic symptoms whose nervous systems are already dysregulated.”
What do some of the team at Vitality360 as specialists in chronic symptom management think?
I asked our multi-disciplinary team for some thoughts based on their clinical opinions and these were some of the responses:-
‘Such ‘gadgets’ as these are definitely of mixed benefit in my opinion’ is what one of our Specialist OTs commented. She said she has found that for some clients, it is very helpful initially as it can help them to understand how to improve managing their activities when they are alerted to some biofeedback that these ‘gadgets’ record. However, what she finds is that ‘in the longer term they don’t consistently assist with progression and for some clients it can keep them in an energy ‘envelope’ which makes them fearful to move on beyond this.’
Our Managing Director and Specialist Occupational Therapist has a similar view, saying, ‘I have had some clients who love these and claim that they have been a turning point, and others who, as part of a bespoke, rehabilitation programme and therapeutic relationship, I have suggested they stop using them as they are either provoking anxiety or stopping progress.’
A recent article in The Guardian interestingly came to a similar conclusion when reviewing the use of sleep monitoring devices. The UK industry for sleep trackers was estimated at £270m last year and is forecast to more than double by 2030 they report.
“Fischer agrees. “Perfect sleep doesn’t really exist. There’s no foolproof recipe, and micromanaging data only creates stress. What matters is: how do you feel? Do you have enough energy to get through the day and feel as if you’re functioning well with a good quality of life? The best way to keep tabs on it is to look at patterns over a week or two rather than obsessing over one or two individual nights. You want to check that you’re feeling well rested at least four nights a week without having spells of being awake for longer than 30 minutes.””
Visible is another product which claims that 80,000 people use it to help manage their pacing, as it tracks heart rate during activity. This provides information on the balance between activity and rest, which can be helpful in conditions such as ME/CFS.
Our Founder/Director and Specialist Physiotherapist has this to add to the considerations:
There are a number of devices on the market that make impressive claims, and many of the people we work with have tried them or been tempted by them. Firstly, I’ve not met a device that does something that you can’t do at home without a device (for free). For example, some gadgets might help trigger a more restful state, but this can also be done with specific breathing techniques. There’s also no point in using a device that helps you ‘calm down’ if you’re not also dealing with the source of stress, or using other therapeutic strategies. However, some people do find them useful - especially those who find it harder to ‘connect’ to their body, who might use the data to help understand more about their health. Some also find the novelty of the device, and perhaps their investment in it, motivating for behaviour change. I do find that we need to keep an eye on how much devices are used, and help people to interpret them correctly (and with a ‘pinch of salt’). We also want to support people to move away from devices as they learn to understand and trust their body. They can also be an unnecessary expenditure, and a considerable source of stress for some people, so it’s always worth individually assessing whether or not a device will be useful in a specific situation.
It’s fair to say that anything like this can have benefits and weaknesses and is best considered in the context of a person’s particular symptom profile and tendencies. I know that some years ago my Psychotherapist said she wouldn’t recommend I use a Fitbit (when they became popular for counting steps), as due to my personality type I was likely due to become obsessive about it in an unhelpful way!
Written by Katherine Sewell