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 have to say that I don’t know if there are going to be future Cortene studies. If Cortene is happy with how the study went and decide to publish it, it will likely be out in probably summer or spring. If they do more trials they will likely be in multiple locations and with more people. But I have no idea how the study is going as I only know my own results. It’s totally possible there won’t be any results or future studies at all.
HOWEVER, If they do here is what you will probably need to be chosen, and what I had to do.
First you have to meet all of current ME/CFS Diagnostic Criteria.
The diagnostic criteria the Bateman Horne Center uses is the Fuduka, CCC, and IOM. Here is a link to information about IOM from the Centers for Disease Control and Prevention. Click Here
Here is a picture of the IOM diagnostic criteria.
For information on the Fuduka Criteria, you can look here at the MEPedia page, or click on this link which will bring up a PDF you can read about it. Fuduka is about inflammation.
For the CCC, or the Canadian Consensus Critera click here.
I actually wish I would have had this stuff when I first started seeing my GP about ME/CFS. I would have printed all of these documents out and taken them to him. Forced him to read them and give me a proper diagnosis. There is so much disbelief these days. UGH.
The Key Qualifier- PEM
The most important factor that qualifies whether or not you have ME/CFS is PEM or post exertional malaise. When I was at my worst my PEM came after about two minutes of any activity (like walking) and I was basically dead for 24 hours after that. If you don’t have post exertional malaise, you probably don’t actually have ME/CFS and you might want to look into other conditions like Lupus. I believe many who have lupus are mistaken for ME/CFS. Butterfly rash on the face is a key indicator of Lupus.
The Altitude Factor
One thing that ruled a lot of people out more than any other (I believe) was altitude. I think they were trying to keep as many factors as constant as possible. For the Cortene Study you had to live in an area with an altitude that’s close to the altitude of Salt Lake City (4,226 feet above sea level). If there is another study and they decide to include an altitude requirement it you will likely be required to live within a certain amount of feet of the altitude the city the study is in.
The Blood Testing
The next thing they will require is blood testing. The purpose is to rule out anything else that might potentially be causing your fatigue and get a better picture of what is going on with your health.
Typical blood tests for ME/CFS could include some of the following things (as written by the Peripheral Neuropathy Center & insertions from me):
- Vitamin D levels
- Thyroid levels including free T3 and Antibodies
- Vitamin B12 and folate levels
- Cholesterol, HDL and LDL
- Ferritin Iron Levels (If your levels are below 30 you want to take an iron supplement. Another post about this later.)
- Liver and kidney functions
- Blood sugar levels
- EBV antibodies
- Antibodies to nerve components (e.g., anti-MAG antibody)
- Lyme disease
- Hepatitis C and B
The Neurological Testing
So the neurological testing was not super extensive. I followed a pencil with my eyes, stood on one foot, pushed on their hand, walked in a straight line, and tested how well I feel vibration in my fingers. No spinal tap or anything.
Follow the Bateman Horne Center
Lastly, of course you want to be following the Bateman Horne Center as they will most likely be spreading the word about the results and will be on the edge of future studies. Here is a link to the patient research page.
If you want to participate in a study another option besides the Bateman Horne Center Studies there is always the Nancy Klimas Genetic study! You have to get a genetic test done from 23 and me or Ancestry.com and you can send your data to them to include in the study.
Here is a link to the clinical research from the Nova Southeastern University if you want to participate with Doctor Klimas.
I hope this post was somewhat helpful. ha. Let me know if you want me to post anything else about the study besides my results, I won’t tell you! 🙂
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