Case study: Taking part in mental health research: Gulliver’s story
Taking part in mental health research: Gulliver's story
A data scientist who was able to return to work after taking medication for severe depression as part of a research trial has urged others to consider taking part in studies to shape the future of healthcare.
Aylesbury’s Gulliver Waite said his mood, energy levels and sleep was improved by taking Parkinson’s disease drug pramipexole daily as part of the PAX-D trial for people with treatment-resistant depression.
He spoke ahead of Mental Health Awareness week which runs from Monday 15 May to Sunday 21 May.
Gulliver, 28, was diagnosed with clinical depression aged 19. He tried to stop taking antidepressants but relapsed each time.
“Looking back on my childhood, I can’t ever remember a time when I didn’t feel negative. I was always sluggish and had a lot of anxiety. I never wanted to engage with anything and always thought that this is how everyone must feel.
“I hid my feelings from everyone my whole life up until a day when my mum discovered me having a panic attack. It was her that encouraged me to speak to my GP.
“I tried lots of different antidepressants and had therapy. At best I felt neutral, I could function but wasn’t really living, just getting through the days. It was difficult to recognise if I was better because I never felt truly happy.
“My mum is a therapist, so sees a lot of information about mental health studies. One day, she sent me a link to the PAX-D study on Facebook. I sent them a message and that’s how I came to be on the trial.
“At that point, I would have tried anything to feel better. I wasn’t particularly hopeful because nothing had worked for me in the past. I felt like being part of this trial would at least be something positive for other people, even if I was taking the placebo.”
The trial randomly allocates participants to either pramipexole - which boosts mood-altering brain chemical dopamine - or a placebo, or dummy drug. Researchers and participants do not know if they are taking the drug or placebo, to prevent bias.
He started the trial in January 2022 with assessment visits at the Oxford Health Clinical Research Facility, Warneford Hospital for 12 months. After completing the trial, Gulliver was told he had received pramipexole and is continuing to take it.
The trial is managed by the University of Oxford through Oxford Health NHS Foundation Trust with funding from the National Institute for Health and Care Research. Results have yet to be published.
He said: “The day after I started taking the drug I felt so much better. I had loads more energy and stopped sleeping during the day. I took the medication at night and it puts me to sleep very deeply which is a welcomed side effect. My sleep quality improved drastically as well as my overall mood.
“I used to sleep for about 13 or 14 hours, now I have much better sleep quality and wake up feeling refreshed.
“A common side effect of pramipexole is nausea, which I experienced. I was given an anti-nausea drug for the first month while I adjusted to the medication.
“I had weekly calls with a research nurse to see how I was feeling. It was a nice feeling to have people checking up on me, and I guess the questioning made me more self-aware.”
As part of the trial, he used True Colours, an app which provides questionnaires to record how feelings change over time
“The app asks you to rate your mood on a scale of 1-10, if you are feeling eccentric or impulsive. It was interesting to see the graph which swerved right down over time to show I was doing better.
“The True Colours app allowed me to be open and honest about how I was feeling. When I had traditional talking therapy, I sometimes felt like I should tell the therapist what they wanted to hear. I answered questions on the app alone and didn’t feel pressured into saying I felt better than I did.”
Gulliver had three weeks off work as a data scientist for a nutrition company due to his condition, during which time he joined the trial. He is now planning a wedding with fiancée Freya.
“We all know there are ups and downs in life. I know that I wouldn’t have been able to return to work if it wasn’t for being on the trial. It’s not a miracle drug, but it helps so much.
“I’d go through the horrible nausea again because the outcome has just been so positive.
“It’s important that people consider taking part in research. The only reason I could get the help I did on this trial is because of the people that volunteered for research before me. It’s validating to know that I have helped pay it forward a bit.”
Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.
The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.
Patients are also encouraged to ask their doctor or health professional about research opportunities and view trials seeking volunteers at bepartofresearch.uk.
For more information on the PAX-D trial visit: https://paxd.web.ox.ac.uk/
For more information about the Oxford Health Clinical Research Facility visit: https://