Jason
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Jason began experiencing horrible pain in both his feet in when he was 24, and finally saw a neurologist who diagnosed him with advanced MS after an MRI and battery of vision, hand, and walking. After his diagnosis and learning more about MS, Jason traced his first symptom back to about six years earlier. The first clinical trial Jason participated in was a drug trial involving extended-release Baclofen. At the time, Jason was taking Baclofen three or four times a day and the opportunity to take it once a day motivated him to sign up for the trial. After six months, Jason informed the study team that he did not notice any change and chose to withdraw from the trial. Since then, Jason has participated in a couple of research studies, one of which involved completing a survey upon entering and leaving the trial as part of the control group. Jason also participated in another research study that aimed to research how increased activity could affect one’s outlook on MS. In this study, Jason took a survey at the beginning, talked to an activity coach throughout the study, and completed a survey at the end. While Jason hopes that the research team learned something from the trials, he did not think the studies were useful for him.
Jason’s main motivation for participating in the study was taking advantage of a chance that this could help him manage or treat his MS. He also believes “that research is important” because “there's so much we don't know about MS.” Jason is very interested in knowing the findings of the studies and has asked the study teams to provide him with a copy of the results. He wants to know “what did you learn? You spent all this time and . . . you put all this work into it. What did you learn?” To date, Jason has not received any information. Thinking back on his previous clinical trials, Jason participated with the expectation that he would get something out of the experience, but not knowing what that something was. Now, Jason has shifted perspectives and expects to get nothing out of his research trial experiences. He simply participates in the hope that somebody else will benefit. He still holds onto hope that “one day” someone will say, “well, we learned that this cures MS.”
Jason speaks about his hopes for future multiple sclerosis (MS) research.
Jason speaks about his hopes for future multiple sclerosis (MS) research.
I know that there's so much we don't know about MS. There's so much we don't know about the central nervous system that research is important, but I am probably not educated enough to know why it's important and what we're looking for. And I know any time I participate in a study or a trial or something, the only benefit that I would like to get out of it is, when you publish, please send me a copy, because I want to know what the findings are. I want to know, what did you learn? You spent all this time and you've paid your team of researchers and you put all this work into it. What did you learn? And I'm hoping one day someone says, “Well, we learned that this cures MS. We learned that this re-myelinates the spinal cord.” That's what I'm hoping for one day, hopefully. Back when I was diagnosed, I was told we'll have a cure in five to six years. And now they're still saying five to six years.
Jason talks about his experience being in the placebo group.
Jason talks about his experience being in the placebo group.
And then I've done a couple-- I've done a couple of research studies. One of them was-- I got put into a control group for one. So, I didn't actually do anything. I just took surveys. I took a survey at the beginning. And then I was in the control group that had no thing-- nothing added, just live life normal. And then I took the same survey at the end. That was cool. I didn't do anything, didn't get anything out of it.
Jason’s expectations were not met when his trial ended up having no benefits for him.
Jason’s expectations were not met when his trial ended up having no benefits for him.
I guess I went into it thinking I would get something, but not knowing what that something was. And then I got nothing out of it. And my expectation should have probably been—like, with what we're doing now I'm expecting to get nothing out of it. I'm doing it because I want you all to have this story to add to the collection, not because I think I will benefit. Hopefully somebody benefits. I don't care if it's me. And if I went into these other things with that same attitude, I might look back at them more fondly.
Jason says he is interested in study results and wants them to be provided.
Jason says he is interested in study results and wants them to be provided.
And I know any time I participate in a study or a trial or something, the only benefit that I would like to get out of it is, when you publish, please send me a copy, because I want to know what the findings are. I want to know, what did you learn? You spent all this time and you've paid your team of researchers and you put all this work into it. What did you learn? And I'm hoping one day someone says, “Well, we learned that this cures MS. We learned that this re-myelinates the spinal cord.” That's what I'm hoping for one day, hopefully. Back when I was diagnosed, I was told we'll have a cure in five to six years. And now they're still saying five to six years.
Always five to six years.
Yeah.
Have you ever been given the results of a study?
No. But I've also always been told these research studies are ongoing. We might not publish for a decade. So—but no, never gotten any results.
Have you ever gone online to any recently, to try to find the answers?
No. I want it to be easy for me. I want it to be given to me. And if I have to do any digging—like, if I'm going to be googling something to look for an answer, it's going to be a tax topic. It's going to be something that's very—that's more relevant to—well, I shouldn't say more relevant, because MS is very relevant to my life. But something that I think will help me. And I don't—I guess at this point learning something new about MS isn't going to significantly affect my life.