Yesterday saw my final visit for the drugs trial I’ve been doing for the last 2 years.
I’ve been part of the MADE trial, taking the drug Minocycline, or possibly not, depending on whether I’ve actually been taking the placebo all this time.
The drug is currently available as an antibiotic for the treatment of acne and they thought it may reduce inflammation of the brain. My joke has always been that if it doesn’t work, at least I’ll be free from acne – and I don’t remember having any skin problems over the last 2 years!
Participants were either given 200mg, 400mg, or a placebo.
Damian travelled from Leeds to see me and my daughter Sarah, who has been completing the trial with me. She has completed questionnaires every few months.
Today, Damian had to do the final basic memory tests and Sarah had to be there to complete her final questionnaire.
Over the 2 year period the teams from York and Leeds have all been wonderful and I’ve enjoyed taking part and meeting them all. However, my first criticism of the trial was that there was no update newsletter about how it was going so you never felt part of the bigger picture along with all the other people taking part. It was very much in isolation.
My main criticism is that they’re not looking at what happens when you finish. This to me seems like a missed opportunity.
I’ve asked to be unblinded early, which means they’ll tell me what I was actually taking before the end of the trial. The trial doesn’t complete until 2018, but that’s too late for me to assess the impact of coming off the trial, which is why I’ve asked to be told earlier and they’ve agreed. No one knows if I’ll have a sudden decline, if they’ll be side affects, if some people may have a decline from stopping a placebo which they thought was helping. If my sleep problems will get better.All unanswered, yet in my opinion, very strong data to have.
I have been in email contact with the researcher and we agreed to disagree on the reasons why they’re not doing a follow up.
An interesting clinical trial to be part of and I look forward to reading the outcomes next year, which I hope I’ll be automatically sent because the chances are I’ll have forgotten or be so engrossed in another that I’ll forget about the MADE trial.
AND of course there’s the final important question, if I was taking the actual drug…….will I now succumb to acne…….😊