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 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.

Anyway,

I hope that makes sense. Comment me any questions. Be well!

7 Comments

  • Leeray Denton

    I am so excited for this treatment, I’m praying so hard this is our cure, thank you so much for posting Jackie. Praying for you lots of love ❤️

  • Chris

    Thanks for adding me. I wish you well. i know there will be a lot people benifit from this if it works out. It takes courage to partake in something like this. You must have a great supporr system at home.

  • jr stockert

    i am a male in north dakota southern part along the line of south dakota i have severe cfs and fibro after 2 surgeries i am some better than when it first started i had to lay down for 2 years severe headaches still have them but the worst is the exhaustion can do something than exhaust out been dignosed with cfs from mayo clinic and a blood test from ucla california for the fibro which is 99 percent accurate i hope and pray this is a break through we need help every day is a stressful day just to live i am missing out on life and stressing my almost 30 years of marriage please keep me updated on this trial i believe this is the one for me but not sure when i will be able to be a part of the trial my elevation is the problem thanks everyone for hope JR

  • leonard s stockert

    i have severe cfs and fibro mainly cfs i hope and pray this works please keep us informed we need help i am 59 fighting this for 6 years some better with headaches so stressful to live exhausted all the time thanks JR

  • Aaron

    Congrats on getting accepted into the Cortene Trial.

    I am patient #6 in the study. I am 42 and have been sick for 3 years. I am able to work (with great difficulty). I live in Nevada with my wife and five sons.

    I did my CPET test on the 7th. I recovered from the test after about three days. I am supposed to receive my first infusion on the 2nd of October.

    I am really grateful for this opportunity. I first heard about the trial from Dr. Bateman back in February, and I stopped taking many of my medications back in March in order to be accepted. Being off so many helpful medications has been the hardest part for me.

    The daily cognitive test was interesting at first, but since it doesn’t ever change it now seems more like a chore (which I am happy to do). I always take the test in a secluded room away from any noise or distraction. To me, it seems like I perform about as well as I would have before I became sick. I think if you asked me to stand for 10 minutes and then take the test standing while in the same room as my five children, then my results would better capture brain fog.

    Good luck with your CPET test and recovery.

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