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 someone with a story similar to yours to follow. I plan on posting my study progress weekly, and maybe posting other stuff, if I have the energy. 


I was officially diagnosed in 2017 by Dr. Nathan Holladay in Salt Lake City, Utah but have been suffering with this heinous disease for a very very long time. I have been sick since I was 20 (2005) becoming progressively worse until today (2018). I am coming up on 13 years with this illness and will turn 33 in October 2018. I received bad treatments and incorrect diagnosis until I had a steep decline in 2016 and 2017 after a crazy stressful period of major surgery, buying a house, getting married, and having a viral infection. I have a cynical view of conventional medicine since it has done me more harm than good at this point (see my full story here), but am trying to keep an open mind because of the drug study. I mean, a cure sounds pretty amazing. The picture of me here is pretty much all I did that day. Get ready and take a photo. haha.


Even though at this point I am very debilitated and unable to work I am still considered a mild to moderate case because I can sit up for several hours a day, and even leave the house sometimes. My main symptom is post exertional malaise which comes after about 7 minutes of continuous physical activity. My body shuts off and I feel near dead for hours at least, sometimes days depending on how far I have pushed myself beyond my limits. I become severely uncomfortable sensitive to light, sound, and touch. The slightest noise or touch is like someone clashing cymbals next to my head. My brain can’t process or compute anything when I am in this state and I can’t hold much of any kind of conversation. My limbs get tingly and I feel heavy. I can tell when my crash is starting to subside because I get a migraine and super intense neck pain.Thank goodness for Excedrin Migraine!

I also get random episodes where I feel like I have a fever with all the symptoms of one including a cold clammy feeling, lower back aches, and a general feeling of heaviness. It’s like I am neck deep in mud when trying to do anything at all. These types of episodes seemed to have lessened with the use of antivirals, which I highly recommend if you had viral onset, or episodes like mine. I have trouble sleeping and have to take every precaution that my precious sleep is not jeopardized. Sleeping time is healing time and if I don’t get enough of it, it’s an automatic all day long crash.

I never thought I had POTS, but it seems like I probably do. I have orthostatic intolerance and autonomic dystopia. I am ALWAYS thirsty no matter how much or what I drink. I stay alive on electrolytes. Traveling is really hard for me. If I do have pots, it’s not nearly as bad as some of my friends. Know my thoughts are with you if your POTS is severe!! I also have traces of Fibro, but not full blown. I’m so sorry if you have it. I’m willing to bet there is another blogger out there doing the cortene trial who has fibromyalgia, it might be worth seeking them out rather than me.

I often push myself beyond my limits because I would rather live my life than spend all of my time at home walking on eggshells not having a life at all. Maybe this will be to my detriment, but I don’t care. Luckily, I have found a few helpful supplements and providers to help recover from crashes, I’ll probably share those in another post.


I want you to know my heart is with you. I can only imagine your struggle. I am praying this drug works, especially for you.  


I hate this illness because it dwarfs who I really am. My illness is not me. I am a happy, energetic, jokester who loves making others laugh. I like to keep people on their toes, never knowing what to expect from me next.  I am fiercely loyal and protective to my family and friends. I am half Puerto Rican and went on a church service mission to Indonesia as a young person. I love art and you will often find me at the computer fixing and colorizing old damaged black and white photos. I graduated Brigham Young University in Provo in 2012 with a degree in Public Health Education. While I was still able to handle employment I worked in Teen Pregnancy and Tobacco Prevention programs at the local health department. I loved my job and was very passionate about making social change. Actually, the reason this blog is called is because it was originally made to be a blog on sexual issues! I still might work on that, but ME to be more pertinent at the moment. I also was a certified personal trainer and weight loss specialist with the National Academy of Sports Medicine. I loved working out, hiking, the outdoors, anything active. I dearly miss being active. I have been married for two years to my handsome and thankfully very understanding man. I managed to snag him before I got really bad, poor guy. Didn’t know what he was getting into- haha.

Anyway, I hope we can be friends. I would love to hear your story and experiences.

Tell me below what bad diagnosis and treatment you have received as a result of this illness? We can commiserate together. 🙂

Talk to you soon,


  • Leeray Denton

    Hi Jackie, I’m not sure if you had a chance to watch the documentary Unrest, But my family and I were in the film, my daughter and I have this illness and are so interested in the cortene study, looking Forward to following your blog and hopefully watching you heal. Feel free to friend me on Facebook and email me anytime.

  • josh

    hi jackie,

    thank you for your posts and your positive attitude! i would like to ask you: what antivirals helped you? did you have any blood work that suggests viruses?

    i hope the cortene trial gets on track soon and i’ll be following your reports eagerly to see how it goes. good luck!


    • Jackie

      Hey Josh! I’m sorry it’s taking me a while to respond to your question. I haven’t been looking at my blog for a while, too tired. haha I was tested for titers? CMV, EBV, and others. Your doctor should know. I take the generic version of valtrex. Been on it for about a year now. It has helped my “flu like” episodes to subside. Huge relief. I hope You are okay. Email me anytime


  • Emilio Monís

    Hello, Jackie! My name is Emilio, I am Spanish, I suffer EM/CFS since 1996. I ask you permission to translate and share your entries in my facebook account -I have also a blog but facebook is more interactive-
    I know the difficulty on write and share the news, experiences and studies released.
    I’ve cited your blog here,

    but I don’t want do do more without yor agreement.
    Apologies for my inaccurate English, I am learning it
    by my own means.

    Thanks for your endeavor, I expect the best results for you since that will also entail a hope for me and more people.

  • Anne

    Hi Jackie, Thank you so very much for your inspiring, spirited blog! I’m similar to you in that I’m 34 years old and came down with CFS about 14 years ago during college. I’m mainly home-bound with a few outings a week. It sounds like you had a positive response to Valtrex. I have never tried an anti-viral. Who prescribed it for you? Thanks so much Jackie!

  • Peter Smith

    Hi Jackie,

    Thank you for writing your blog. I was really interested in it, and I see some similarities with myself in your story. I have had ME for 28 years (since 1990), and although I am better now than I was at the beginning, I am still nowhere near my old self. I too was very active before ME, I was a competitive diver amongst other things, and made it to international level.
    My main symptoms are of course fatigue, muscular aches and pains, exercise intolerance and headaches. I have low tolerance for stress, and often feel quite sensitive to bright lights and loud noises.
    Also I have developed severe depression and anxiety over the years, but I believe that these things are a reaction to my illness rather than part of the illness itself, if you see what I mean. I was so sporty and active before my illness that I have never come to terms with having to be so inactive.
    Anyway, from time to time I look on the internet to see if there are any new developments in treatment or research on ME / CFS. I never look with any great sense of optimism because there seems to have been so little research on ME over the years, but the stuff about Cortene and CT38 really caught my attention. It seems like a reputable company and the research seems thorough and well developed. Their theories behind the possible success of CT38 as a treatment do explain the wide diversity of symptoms affecting different ME patients. Their statement that this protein could be “potentially curative” is very exciting, but I have learned not to pin my hopes on anything too much!
    Anyway I am very interested to read your blog and hear about your experiences on the drug trial. I wish you the very best of luck with it, and hope it leads to something that will change your life (and hopefully mine and others too!).

    Best wishes,


    • Jackie

      Hey Peter! Thanks for commenting! We do sound quite similar. 28 years. WOW! You are a trooper. I thought 13 was a long time. ha. I’m sorry to hear about the anxiety and depression. I can sadly relate to that too. It’s hard to not get to be who you actually are inside. Let’s keep our hopes up! xo -Jackie

  • joy cornhill

    Hi Jackie I live in England and have had M.E. for 26yrs, and now my husband has passed away recently. I just wanted to ask you if I have to stop all my meds off of the doctor as we have the N.H.S. so we do not pay , but I have been to the site you went to and I have paid $88.00. I have ordered 1mg and 3mg my idea is to start on the one then go to 4mg if needed. I really would like to have my life back as I am now 66yrs old please please can you email me and let me know your thoughts, and thank you for sharing your life with us. kind regards Joy.

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