During the last part of 2016 I took part in a clinical trial of rTMS for Anorexia Nervosa. Repetitive Trans Magnetic Stimulation is a process used to stimulate certain regions of the brain and has so far shown promising results in both Depression and Anxiety and now has NICE approval. The trial I took part in was run by Kings College London and called the TIARA Study (Transcranial magnetic stimulation and Imaging in AnoRexia NervosA).
If you would like to find out more about Anorexia, this particular piece of research, and see the actual procedure being undertaken this is a video produced by the team I worked with:
— I will also state now to avoid any confusion, as this is a double blind experiment I have no idea whether I was actually receiving the treatment or the placebo and will find out in March when I will post a follow up blog. In the meantime I will be using the word “treatment” regardless–
I want to talk about this for several reasons.
Firstly this is a new and emerging treatment and the RCT (Randomised Control Trial, the Gold Standard in scientific research) I was part of is I believe (at the time of posting) the biggest and most comprehensive ever undertaken of its kind so from a purely academic viewpoint I (and hopefully some of you) find it an interesting experience.
Secondly I want to talk about why I went through with this course of action which some might find extreme (I was acutely aware that I was consenting to something being done that could actively change my brain structure which is a lot to wrap your head around, no pun intended). Also why I ended up on this journey and what the trial and the treatment actually entailed so others who may be considering or undergoing rTMS are well informed as I personally couldn’t find many first person experiences (although do look at the Reddit r/rTMS community) before I started.
When I started writing this blog I had hoped to fit it nicely into one single piece but as I soon realised there was quite a lot of content which fell into obvious sub categories and so this will be the first of a few blogs.
This first blog will focus on making to decision to enroll in a clinical trial for rTMS because it was a very lengthy decision and process and then I will go on to more about what the treatment actually entailed.
I will link through to other articles where I can and give more information at the bottom if necessary but do feel free to ask comments below.
Making the decision to try rTMS
Unfortunately I’ve been ill for a very long time now, in fact it’s almost 14 years (half my life) since I first received a diagnosis of Anorexia Nervosa. As much as I try and be an open book when it comes to the majority of my mental health issues Anorexia (and a few other pockets) has always been something I have felt deeply uncomfortable discussing. Part of this comes from embarrassment as I feel like a painful stereotype; white, middle class, female, high achieving, perfectionist. I tick a lot of boxes.
And as someone who considers themselves a feminist it is difficult to reconcile what I say and feel about other women to the brutal and inhumane torture and taunting I subject myself and my body to, it makes me feel like a fraud although I know objectively this is not an uncommon feeling. I also feel it’s something still often seen as a vain condition that smacks of privilege (the amount of times I’ve had the idea of children in Africa starving thrown in my face as though I didn’t already know or feel guilty enough already). And as much as people say things like “well you don’t look Depressed”, for example, I don’t think any other mental health condition leads so frequently to people looking you up and down and making a snap judgment on whether you are actually ill enough to qualify for the diagnosis in their eyes.
Top tip: not everyone with Anorexia is skin and bones or wheelchair bound and frankly our society is so effed when it comes to female beauty standards I am regularly complimented on my appearance despite being dangerously underweight and seriously ill. Let us not forget: Anorexia Nervosa has the highest mortality rate of any mental illness.
However especially over the last 18 months I have started talking more about this particular condition, in part because I didn’t have a choice; my supposedly secretive coping mechanism, my invisible illness was now in fact highly visible and undeniable.
Then there is a little part of me that does it because quite frankly I don’t have the energy to care so much about what people think. As my therapist once said to me, “don’t be alone with shame”, if I keep letting it fester it just feeds the disorder.
I am highly treatment resistant which probably stems from a number of things, most namely the fact I have a number of co-morbidities such as Depression, OCD and Anxiety which can all feed off and into my Anorexia.Add to that a lot of turmoil in recent years and you have a big problem. I have spent the majority of the last 14 years of my life, since diagnosis, in and out of treatment. Somehow (and this always seems to shock people who know the breadth and depth of my illness) I have always managed to worm my way out of hospital admissions but I have seen just about every outpatient professional under the sun and tried over 20 medications, multiple types of therapy, mindfulness, peer support, yoga, tai chi, acupuncture..the list feels endless. Although I have learned something new, something about myself or gained a new skill or tool from every intervention I have tried I am still ill. In fact this past 12 months has seen me reach and breach my previous rock bottom and left me absolutely desperate.
So desperation is obviously, on it’s own, a bad starting point when attempting to make a major decision about one’s health but I want to stress that this is not a decision I undertook lightly by any stretch of the imagination.
I have been keenly following news of TMS in the mental health community for several years now as it has been shown to have promising results in Depression and Anxiety. I looked into it but realised that, as at the time it was not approved by NICE (it now is for some conditions but not Eating Disorders although hopefully this will change if the evidence base is positive), it would be prohibitively expensive. I also tried to get onto several earlier clinical trials but didn’t meet the stringent criteria.
Finally, through Beat’s fantastic research participation page I found the TIARA study and then started on the process of being assessed for eligibility.
When I first started seriously considering trying rTMS I was under the care of a Community Eating Disorder team and I spent a long time discussing with both my therapist and psychiatrist, what doing the treatment would mean and they helped me work through some of the decision making process. In the end I decided that it was ultimately worth trying as I was making some progress in treatment but it was slow and not being reflected in my weight or physical health.
Unfortunately by the time I got into the trial and the start date approached I had been discharged from services as mentioned in my previous blog post and so I found myself in the somewhat daunting position of starting the trial without my usual professional back up to guide me through what would be quite an intense three weeks of 18 sessions at The Institute of Psychiatry, Psychology and Neuroscience.
In part two: The unexpectedly long and arduous process of enrolling in a clinical trial including such rants as “why is it so difficult to get hold of your own medical records” and “how quickly the novelty of commuting again wore off”.