• Cortene Study

    It’s Here! Cortene Trial: Infusions

    Hey everybody! I hope you are well. Some good news for us! The Bateman Horne Center is moving forward with CT38 infusions, and my first infusion is TOMORROW! EEK! I am equal parts excited and terrified. It is going to be a three hour subcutaneous infusion. My second infusion will be on Wednesday of this week. As you remember they changed the study so all patients will be getting the low dose. I am expecting to have some mild side effects, but nothing serious. Fingers crossed! The good news: The study is moving forward and we are closer to knowing whether or not CT38 is a cure for ME. The…

  • Cortene Study

    Cortene Trial: Postponed

    Hey there, friends! I have some bad news today. Unfortunately, the Cortene trial has been postponed. Yep. I was told they are changing something with the study and need to get approval from the FDA and the IRB once again before they can move forward. My guess is there was some kind of effect on the first patients who received the medicine and they are re-calibrating. I have been told to continue my protocol, doing the daily symptoms survey and the tests for cognitive function. My exercise stress test was canceled, which I feel a little bit relieved about. They are not sure when they will be able to pick…

  • Cortene Study

    Cortene Trial Visit 1 & About the Cortene Trial

    VISIT 1 Hey friends! I hope you are doing well today. Big news! I officially had my first appointment for the Cortene Trial yesterday, 9-6-18! It went great and I expect to have my second appointment in a couple of weeks. I am thrilled to finally get going on the trial as I have been waiting for a couple of months now. Let’s do this thang! The visit was pretty standard stuff. I first talked to a PA first who did a bunch of testing with me basically to rule out anything other potential cause for my fatigue besides ME/CFS.  She also did a bunch of testing to get my baseline…

  • Encouraging Words

    Some Words of Encouragement

    Hey friends. A couple of months ago I was having a REALLY hard time dealing with ME/CFS. I was in the middle of a crash and I went to my the Myaligic Encephalomyelits page for some support. Here is my post.  “I’m having a really hard time dealing today. Been dealing with CFS since I was 19. Now 32. It’s gotten significantly worse in the last two years. I have gained weight and the person I was seems so far away now. I don’t know why my husband stays with me. How do you deal? I kinda want to die. … This pic is me sick but still able to…

  • Cortene Study

    My Story/ Cortene Trial

    Hello friends! My name is Jackie and I have ME. I was recently selected to participate in the Cortene or CT38 trial at the Bateman Horne Center in Salt Lake City, Utah. This drug is expected to be curative. I wanted to blog my experience for those who are interested in a behind the scenes look at the trial. In this post I want to give an overview of my story and my symptoms so you can compare how Cortene might help you (or not help you) if your case is similar to mine. I realize everyone is different and if our stories don’t line up I hope you find…