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Millions of young people risk missing out on new treatments for health conditions and having to use medicines that are unsafe, ineffective or inappropriate because so few take part in medical research. One of those bucking the trend explains why he signed up to a study and how it transformed his life.
Gulliver Waite was diagnosed with clinical depression at 19. For years, he struggled with extremely low mood, anxiety, frequent panic attacks and occasional paranoia.
“I put everything I could into working because it was basically all I could do,” he says. “I didn’t really go out and see people. I just stayed at home and slept a lot. My partner would wake me up and try to stop me from doing it, but I could easily sleep 18 hours in a day. I just retreated into myself basically.”
For the data analyst from Dunstable, Bedfordshire, even tasks such as brushing his teeth or taking a shower became difficult. “I would have no energy or I’d think: ‘What’s the point?’ While I wasn’t suicidal there was a feeling throughout that it would have been a lot easier if I just disappeared.”
Waite tried a range of treatments, including antidepressants and talking therapies. But nothing soothed his symptoms.
“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.”
Then his mother came across a clinical trial called PAX-D on Facebook. As a therapist, she would receive a lot of information about mental health studies and thought the trial could help her son.
“At that point, I would have tried anything to feel better,” Waite says. “It was a particularly bad time. A little bit after I applied for the trial, I had to stop working because I just wasn’t coping. So it was very lucky she came across it and sent it when she did.”
The study funded by the National Institute for Health and Care Research (NIHR) was testing whether a drug commonly used for Parkinson’s disease could help with treatment-resistant depression. Unlike antidepressants, which target serotonin, pramipexole mimics dopamine, which influences the energy with which people pursue goals.
“The day after I started taking the drug I felt so much better,” Waite says. “I had loads more energy and stopped sleeping during the day. My sleep quality improved drastically as well as my overall mood.”
He continued to take pramipexole after the trial concluded. A year ago, he stopped taking the drug, or any other antidepressants. It is the longest he has been off medication since he was 19.
Now 31, Waite has more energy, his personal life has improved and he has even started a new job with a mental health research company, inspired by his positive experience on the PAX-D trial.
“Everything isn’t the battle that it was. I’m not constantly having to feel like it would be better if it wasn’t here. I still feel anxiety and some days are lower than others, but it’s not the all-consuming thing it once was,” he says.
“I wish I could have taken part in the trial sooner. If I would have known about it and it would have been running, I’d do it immediately. Even if I went back and got the placebo and didn’t get the actual medication itself, I’d still do it.”
Waite is encouraging other young people to take part in research, as part of a national campaign by the NIHR. A UK-wide volunteer registry helps make it easier to join studies, by matching people with opportunities that align with their health concerns and interests.
Anyone can take part in research, whether they have a health condition or not. Some trials seek people without the condition being studied, so researchers can compare them with those who have it.
“It’s important that people consider taking part in research,” Waite says. “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.”
