• Cortene Study,  Helpful ME/CFS tips,  ME/CFS Inspiration

    How to Qualify for Future Studies

    Hellllloooo there! How are you today? I hope you are doing alright! Anyone out there try D ribose or the amino acids? I am trying another amino acid blend with caffeine today seeing how I feel about it. I think it’s helped quite a lot. I am just trying not to overdo it as is easy to do when you have fake energy! I’ll keep you updated on that. I wanted to take a quick break from my “Things that help me” series and address a question I get frequently. How to apply to apply for future Cortene studies. How to Qualify for Future Studies Before we dive in, I…

  • Helpful ME/CFS tips

    Things that help me: Amino Acids and Caffeine (Makes me feel *almost* normal!)

        Hello friends! I am excited to share this one with you. When I take this combination I can actually see glimpses of who I used to be. It’s amaze balls! Disclaimer: these supplements are by no means a cure for ME/CFS, and I am a what is considered a mild case. If you are in more serious condition I don’t know how they would effect you. If you are a more serious case and decide to try it, please let me know what your results are! And of course, talk to your doctor before you try anything new no matter what your condition is blah blah blah. PS.…

  • Helpful ME/CFS tips,  ME/CFS Inspiration

    Things that help me: D-Ribose

        Hey there friends! I hope you are all hanging in there. I have been thinking about it and decided to do a series of posts on supplements and other things that have helped me with my ME/CFS symptoms and general energy crisis. I think I will try and post one once a week. I don’t guarantee they will help you too, but I would say they are worth a shot. Today I want to talk about my favorite supplement, and the first thing that actually helped me with my ME/CFS, D-ribose! D-ribose I stumbled upon the idea of D-ribose in the book Fatigued to Fantastic by Dr. Joseph Teitelbaum.…

  • Cortene Study

    Cortene Trial Update!

        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…

  • 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,  ME/CFS Inspiration

    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 Myalgic 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…