Hello ME/CFS friends!
I have received so many kind and encouraging comments and emails about the Cortene trial. Thank you all so much for your support! I have been dying to write here and tell you all how I am doing, but alas I am still not allowed. I’m not sure when or if I will be allowed to fully divulge the details of my results. It’s disappointing and frustrating, I know. The reason why I am not allowed to talk about it is there is potential for such a huge array of responses to the medication. They don’t have anyone who gets the medicine to have a preconceived notion of what their results will be because someone said it would be a certain way. While it makes me sad I can’t share, I understand the logic behind it. We are all different and my results might be different than some of the others who are participating currently. They don’t want to skew the data.
I did want to take a minute however and tell you about the infusions themselves and answer some frequently asked questions.
My initial infusions were the 12th and 14th of November. They decided to add a third sometime in December and I was the first to receive a third infusion of Cortene on December 18th. The infusion itself reminded me of cancer treatment. They me sit in an arm chair in a reclined position. I was given an IV for blood draws and I was hooked into a machine that continually monitored my heart rate, breathing rate, and oxygen levels. Every fifteen minutes they monitored my blood pressure to make sure it didn’t get too low. Cortene was very slowly pumped into me through a needle that was stuck into the adipose tissue in my abdomen. Each infusion was about 4 hours of getting the drug and a couple of hours of monitoring.
The pic above is a lovely pic of my face during the trial. You can see the heart monitors and blood pressure monitor in this picture.
Here is a picture of the pump. The amount of medicine that went in my body was very little.
Overall for me the infusions were a neutral experience. I will also be interested to hear how other people did with the medicine as we are not allowed to talk to each other either. To monitor my results I complete a daily health survey, and some quizzes to test my cognitive function. Not going to lie I am so ready for the quizzes to be done! My final visit for the study is going to be on Wednesday.
To answer a few frequently asked questions on my blog.
Q: When will this phase of the study be finished?
A: Likely in the spring/summer. That’s when all the patients will have had the opportunity to receive the medicine and be monitored for at least a month afterwards.
Q: When will we have the results of the trial?
A: If Cortene decides to publish the findings I have been told it will likely be in the summer or fall. If they don’t think it was a successful trial they won’t publish anything at all.
Q: When will the second phase take place?
A: If they decide the trial was successful and want to expand it to more locations and more patients it will likely happen after the fall or perhaps even next year. Unfortunately these things take so much time. Luckily if it does expand, more people will be able to participate next time! (fingers crossed!)
Alright, I think that is all for the day. Did I answer your questions? I hope so. Feel free to email me at firstname.lastname@example.org. Please know that I am praying for you all!