So here we are, a year on from my initial inquiries into the trial and it’s time to tell you the results. It’s been a long time coming.
If you’ve read the previous blogs you’ll know I’ve been very apprehensive about the results and this reveal. In the last blog I stated I thought and hoped I had been in the placebo group because (so far at least) I hadn’t seen or felt any noticeable improvement. I said I felt bruised from all the treatment doors and didn’t want to feel another thud against my face.
I’ve waited awhile to tell you all because I’ve needed time to process it myself. Regardless of result an answer meant finally getting some closure on the previous months but also held sway over what happened next. If it was placebo then I would now be allowed to go through the procedure again, this time for real which would mean making arrangements to fit another month of travel into my life. If it was real then I would have to decide if I wanted to look for treatment elsewhere, whether that meant grudgingly going back to my previous NHS Community Eating Disorder Team, looking into third sector support or even going to my parents for help with a paid, private therapist.
Drum Roll Please….
So enough already, the results.
I opened the envelope, unfolded the paper and the results were there:
So there we go, it was not, as I’d hoped, the placebo. I had received 17 sessions of actual Repetitive Trans-Cranial Magnetic Stimulation Therapy.
How Do I Feel Now I Know?
I’m feeling Okay about things now to be honest. Initially, yes, I was disappointed. I hadn’t been looking forward to going through the whole thing again but I didn’t and still don’t feel any different.
I’ve been told that you can still sometimes see signs of improvement in the six months after the treatment has ended so I guess there is a chance that something might shift. So far results seem to show that in people that do notice improvement it isn’t a massive thing, you never (and I never expected to) wake up “cured” or a thousand times better. But for some people it seems it does help to slightly shift, adjust, “rewire” almost, parts of the brain and can help pave a clearer path to recovery.
I’ll never know for sure why this seemingly hasn’t worked for me. It could be that I didn’t have enough sessions or a high enough dose, perhaps it only works for specific people, a sub-cohort of people with Anorexia we haven’t identified.
It might well be that my head, my life and my illness are too complex right now. Finding out a family member has Cancer is enough to throw anyone completely and I know my head has been in a very bad place for a very long time now.
Maybe it never stood a chance against my environment.
On taking part in a clinical trial
I will never regret my decision to take part in the trial. That it hasn’t worked is a shame for me personally but when you are part of a trial you are just one piece of a much bigger puzzle. The TIARA study I have been participating in sets out to be the biggest ever RCT of rTMS for Anorexia Nervosa and it feels good to have been part of something so big and groundbreaking.
My data and the data from other participants will be gathered and painstakingly picked over by some of the brightest minds in the country. The results will then be scrutinized by their peers across the world and released to the scientific community and wider world for further examination, discussion and replication.
Given that my condition, Anorexia, has the highest mortality rate of ANY mental illness I am grateful that I have had the opportunity to be part of the race to find better treatment and save lives. We know that 20% of people with Anorexia die prematurely. And even if it doesn’t kill us less than half of us will make a “full recovery”. The odds for Anorexia are worse than some forms of Cancer.
Despite this mental health still receives very little funding in terms of research which is vital if we want to develop new treatments and save lives. To not do so is (to put it bluntly) a seriously false economy when you take into account lost lives, earnings etc. In fact the whole of mental health research spend in the UK per year is just £115 million an average, 22x less than Cancer.
Part of my hope with this series of blogs has been to shine some light on mental health research and show you what it looks like to be a participant in a clinical trial and I hope it has at least been mildly interesting.
From here I’m not sure what I will do.
I am looking into a local charity which provides an Eating Disorder Support Group and I have been re-referred back to the NHS Community Eating Disorder Service (grudgingly but that is a story for another day).
Until then I battle on.
Thank you for reading my story.
Mental Health Research: More Information
If you’re interested in finding out more about mental health research or get involved check out organisations like MQ: Transforming Mental Health, The McPin Foundation and the brilliant blog Mental Elf.