GlassHouse
Senior Member
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I filled out a form on the Gordon Medical site saying that I was interested in more information on the individual metabolomic test (the one that is like a kickback for a donation of $1500).
Yesterday, I heard back from them and they answered my questions, which I will share here in case anyone would like more information, since the website says relatively little about the test/ study. I'm not saying anyone should or should not participate, I just wanted to provide more info on it in case it may be useful to others.
Q1: If blood is being sent in from all over, then how do you know the person claiming to have CFS/ME really has it and not just "chronic fatigue"
A1: The vetting process will be the same as that used for the fist study with Naviaux. Participants will be sent an extensive questionnaire to fill out that includes symptoms/ history/ who diagnosed you. They will review the information you provide to see if you fit the same criteria as the frst study, which stated: "All CFS patients met the 2015 IOM (4), Canadian (8), and Fukuda (9) diagnostic criteria for CFS."
Q2: How is the blood analyzed? Is it the same as the first study or a different method/ equipment etc.?
A2: The blood will be sent to Dr. Naviaux who will use his equipment to run the analysis. So the same equipment, location, method, and person as the first study will be running the blood analysis.
Q3: How would someone send the blood? Can it be collected at Quest Labs?
A3: You will be sent a collection kit with an Rx from Dr. Naviaux. You can go to your local lab to get the blood drawn. The draw fee and postage to send in the sample are included in the $1500.
Q4: What is the first step if someone wanted to do this test?
A4: Call or fill out the form on Gordon Medical's website. They will call you and talk to you. If you would like to be included, they will add your name into the system. You will need to wait until they have 9 more age- and sex-matched people with CFS and 10 age- and sex-matched controls. They run batches of 20 samples to compare the 10 CFS people to the 10 healthy people of the same sex and age.
You can either donate ahead of time. Or you can wait until they have the 19 other people in your age/sex category (they will call you when this happens) and then you can wait to pay when you know they are ready for your sample.
Q5: What is included on the report?
A5: Your values for over 500 metabolites and how you compare to the other people with CFS in your age-sex category and to the healthy controls in your age-sex category. There will be a more detailed breakdown and analysis of sphingomyelin results.
I also asked them to consider adding a sample report to their website so people can see what the report actually looks like.
Yesterday, I heard back from them and they answered my questions, which I will share here in case anyone would like more information, since the website says relatively little about the test/ study. I'm not saying anyone should or should not participate, I just wanted to provide more info on it in case it may be useful to others.
Q1: If blood is being sent in from all over, then how do you know the person claiming to have CFS/ME really has it and not just "chronic fatigue"
A1: The vetting process will be the same as that used for the fist study with Naviaux. Participants will be sent an extensive questionnaire to fill out that includes symptoms/ history/ who diagnosed you. They will review the information you provide to see if you fit the same criteria as the frst study, which stated: "All CFS patients met the 2015 IOM (4), Canadian (8), and Fukuda (9) diagnostic criteria for CFS."
Q2: How is the blood analyzed? Is it the same as the first study or a different method/ equipment etc.?
A2: The blood will be sent to Dr. Naviaux who will use his equipment to run the analysis. So the same equipment, location, method, and person as the first study will be running the blood analysis.
Q3: How would someone send the blood? Can it be collected at Quest Labs?
A3: You will be sent a collection kit with an Rx from Dr. Naviaux. You can go to your local lab to get the blood drawn. The draw fee and postage to send in the sample are included in the $1500.
Q4: What is the first step if someone wanted to do this test?
A4: Call or fill out the form on Gordon Medical's website. They will call you and talk to you. If you would like to be included, they will add your name into the system. You will need to wait until they have 9 more age- and sex-matched people with CFS and 10 age- and sex-matched controls. They run batches of 20 samples to compare the 10 CFS people to the 10 healthy people of the same sex and age.
You can either donate ahead of time. Or you can wait until they have the 19 other people in your age/sex category (they will call you when this happens) and then you can wait to pay when you know they are ready for your sample.
Q5: What is included on the report?
A5: Your values for over 500 metabolites and how you compare to the other people with CFS in your age-sex category and to the healthy controls in your age-sex category. There will be a more detailed breakdown and analysis of sphingomyelin results.
I also asked them to consider adding a sample report to their website so people can see what the report actually looks like.