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 health readings. I was tested for nerve damage, brain tumors, diabetes, orthostatic intolerance, hypothyroid, anemia, and a myriad of other things. I was given a Fitbit which will be used to track for biomarkers and any changes in sleep and physical activity; and the nurse explained how to do the quizzes and survey online.
The quizzes are to test my cognitive function, which seems to have deteriorated over the last few years. haha. Memorize a pattern and pick the correct one as it flashes on the screen. Memorize a line of letters and select the correct letters on the screen, and other one I can’t remember. ahh the brain fog is thick today. I think this might be the hardest part of the trial for me overall. My brain doesn’t retain information or process information well. And numbers? Forget about it. The survey just asks questions about how you are feeling today looking for any changes or improvements later.
My next appointment will be an exercise stress test which I am really nervous about. They will give me about a month to recover from the exercise stress test inevitable crash and then I will receive my two infusions of Cortene.
ABOUT THE CORTENE TRIAL
A few of my friends have asked for more information about Cortene and the trial since they aren’t spoonies in the loop. I feel like Cort Johnson from Health Rising is the best place to learn about Cortene. He has done extensive research and written a great article about it you can read here.
I am participating in the study at the Bateman Horne Center in Salt Lake City, Utah. You can visit their website here.
An overview of the Bateman Horne Center CT38 study from the US National Library of Medicine outlining what it is and how exactly it will work click HERE
I highly recommend following the Bateman Horne Center on Facebook. They are constantly doing informational sessions on topics related to ME/CFS. You can follow them HERE.
FOR THE FOGGY BRAIN
If you are in the midst of a crash or have major brain fog like me you probably looked at those pages and blanked. Thankfully at my last visit to the Bateman Horne Center it was kindly explained to me very simply. It is believed that the neurons in the brains of people with ME/CFS are stuck in a stressed position. When your body is in a constant state of stress your systems will overreact to any kind of stressor. The drug is supposed to help put the neurons back into their correct form thus relieving the excess stress on the body. This in turn is supposed to remove excess stress on other body systems and relieve the devastating symptoms of the disease. The Bateman Horne Center is hopeful it will work and immediately be available on the market.
I hope that makes sense. Comment me any questions. Be well!