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Our stories: From research participants

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Our stories: From research participants
​What is it like to take part in a study? Read the stories of former CAMH study participants, who have generously shared their personal experiences in the hope it will contribute to positive change for others.

​​From surviving to thr​ivin​g: Gail's experience with a brain stimulation study

My experience with personalized medicine: Larry's story about a genetic testing study







Gail Bellissimo is a strong advocate for giving patients better access to health research and a greater voice in improving health care. She has been invited to speak at several major health-care conferences, is a member of the Lived Experience Reference Panel for the Mental Health and Addictions Leadership Advisory Council, a member of CAMH Constituency Council, and raises awareness of mental health and research on Twitter (@GailBellissimo).

I describe depression as an oppressive illness that invades one’s body and silences the spirit. It insidiously erodes one’s senses – making them dull, flat and one-dimensional. Depression had encased me in a dark, hopeless indifference to living – physically exhausted, emotionally numb and withdrawn from the world.

Today, after participating in a research study at CAMH that gave me the chance to try a new treatment for my depression, I feel as though I’ve gone from existing to living, and from surviving to thriving.

I suffered an episode of postpartum depression that I was too ashamed to seek help for. And in 2009, I was diagnosed with major depression. Virtually every anti-depressant I tried didn’t work. 

With a deep interest in research and a working knowledge of medicine, armed with the Internet and with the support of my doctor, I kept searching for options even when there didn't appear to be any. Something in me couldn't give up. In the fall of 2013, I read about repetitive transcranial magnetic stimulation (rTMS) and found out about an upcoming trial at CAMH’s Temerty Centre for Therapeutic Brain Intervention using rTMS to treat major depression. I was accepted into the study in February 2014.

rTMS uses magnetic pulses to stimulate specific areas of the brain that researchers believe are underactive in people with depression. My rTMS treatment was just over three minutes a day, five days a week, for six weeks. The treatment was virtually painless, and I had no side effects. I wondered how it could possibly work.

By the end of the third week of treatment, for the first time in a very long time, I felt like I deserved to be here. No treatment had ever allowed me to experience a sense of peace like I had now.

For me, depression was very self-stigmatizing. I spoke to no one about the challenges I experienced, and no one knew of my participation in the trial.  

So, why did I decide to speak publicly; what changed my mind? I had been empowered by science and health research. This treatment broke down the walls of the concrete prison I lived in when depressed, and provided me with a clarity and understanding that this illness wasn't a choice and I wasn't weak. I made the decision that, with all the challenges I’ve faced and may face in the future, stigma won't be one of them.

I believe that I have a responsibility to advocate for others. Even though I knew where to look for information about clinical trials and research, the majority of people do not. Everyone should have the right to find out about and participate in research that could potentially restore their health and improve their quality of life.

In order to better understand these complex illnesses, to develop better tests, more effective treatments and one day cures, we need Hope, and I believe that Hope IS Research.

Health Canada has approved repetitive transcranial brain stimulation (rTMS) to treat depression in people who have tried existing medications or psychotherapy without any success. The Ontario Health Technology Advisory Committee has recommended for rT​MS to be offered as a publicly funded treatment for treatment-resistant depression under certain conditions, and rTMS is covered in several other provinces.

 

My experience with personalized medicine: Larry's story

Larry Meikle is a retired Ontario civil servant. He received his Master of Fine Arts in Creating Nonfiction Writing in 2015 from the University of King’s College in Halifax, and is currently writing his first book.

Over the past three years, I’ve felt better than I have for decades. I could not have completed my master’s if I were feeling as I did in the past, before I participated in CAMH’s IMPACT study on mental health problems and DNA.

I was diagnosed with clinical depression in 1997, and I’ve been taking antidepressants ever since. I tried going off my meds a few times, but painfully realized I couldn’t battle depression without them.

A few years ago, the antidepressant I had been taking for so many years suddenly stopped working. My family doctor started me on a new medication, which went reasonably well. But anxiety was still a problem, and I felt I could be doing much better.

My doctor suggested yet another medication, but I dreaded facing the slow and painful process of winding down one med, then building up the dosage of a new one. And what if it didn’t work? There was no guarantee the new antidepressant would work any better than my current one; in fact, I could have gotten worse. Changing meds was a “crap shoot” – a roll of the dice.

In fall 2012, I learned about CAMH’s research project involving genetic testing and depression, and told my doctor that I was interested in participating. In January 2013, I was accepted into the study. Not only that – my doctor’s practice would be the first site in the official “rollout” of the study to the Ontario public, and I would be the first person genetically tested in this rollout.

Taking part in this study was a breeze. I provided a saliva sample for genetic testing at my next doctor’s appointment, and two days later, I had the results. 

The test results listed a number of common antidepressants in “green” – these medications my body would metabolize well, with little chance of experiencing negative side effects. Other antidepressants were listed in “yellow,” advising my doctor that they may not be as effective for me. Fortunately, my current medication was in the “green” area, a perfect fit.

Because I felt I could be doing better, my doctor suggested two options – choose another antidepressant from the “green” category, or increase the dose of my current medication. He said he would not have been confident in increasing my dose without these test results.

It was an easy choice. I asked to have my dosage increased, which he did slowly, tracking my progress until we reached the point I’m at today: taking double the dose as before and feeling much, much better for it.

Some feelings of depression linger, as I expect they always will, but the anxiety has been dramatically reduced.
CAMH’s DNA test played a significant role in enabling me to get my life back on track, and now other Canadians with depression have the same opportunity. I believe this genetic test is an exciting new tool in the treatment of depression.

I hope my story will inspire more public discussion of depression, thereby reducing the stigma associated with this illness.

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“Everyone should have the right to find out about and participate in research that could potentially restore their health and improve their quality of life”

Gail Bellissimo, mental health advocate

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CAMH’s DNA test played a significant role in enabling me to get my life back on track

Larry Meikle, retired civil servant and author

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