Third Metabolomics Study Info (Gordon Medical Study)

[GlassHouse]

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.

 

[taniaaust1]

I may be even tempted to take out a loan to be able to have something like this tested as Im sure some interesting findings would come up for me.

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.

5: 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.

Im wanting to know if with this comparision on the report you get.. is only a comparision between the 20 people only (10 with ME and 10 without) or if when doing this they are using the results from a very large group (all the previous ones they have tested to compare with?).

 

[Gingergrrl]

I gave a blood sample at OMI in May 2015 which was bio-banked and had them run the test recently. I just got the report of my results (47 pages!) and will be doing a phone consult with their nutritionist next week. I can consult with my doctor too but the nutritionist is the starting point.

It was expensive but much cheaper than the Gordon Medical Group one. But mine is not part of any study and I am not even certain if it is the same test (although I suspect it is). I wanted to run it as a baseline test to use as a comparison for when this test is some day commercially available at a cheaper rate. Will share what I learn and scheduled consult for next week b/c I have not even had time to read the report yet!

 

[GlassHouse]

Hi @taniaaust1,

I've heard that Dr. Davis at Stanford is working on a cheaper metabolimics test. Gordon Medical stressed several times on the phone that they don't want people to donate for the test if their financial situation is already very strained. You can also have family and friends donate on the Donate page of the Gordon Medical website and specify your name in the "in honor of" section and whatever amount they donate will go toward funding your $1500 test (people pay via PayPal).

I can afford the more expensive test at this time but I wonder how long it would take to find 9 other women around 26 years old. My boyfriend will be donating his blood as a healthy control to help any 29-year-old men who are ill.

Im wanting to know if with this comparision on the report you get.. is only a comparision between the 20 people only (10 with ME and 10 without) or if when doing this they are using the results from a very large group (all the previous ones they have tested to compare with?).

My impression was that it is just compared to the other 9 sick people and the 10 healthy people in your age-sex category, but I am not 100% sure. I would need to talk to them again to be certain. I also did not think to ask what constitutes age-matched as I'd assume this would be an age range (although this info is probably in the first study).

@Gingergrrl that's so cool! I look forward to seeing what your report looks like!

 

[Thomas]

What about patients that are on specific treatments (Antibiotics, valcyte, Ampligen, or any other antipathogen or immune modulating drugs)? Are they excluded from participation?

 

[Gingergrrl]

@Gingergrrl that's so cool! I look forward to seeing what your report looks like!

Thanks @GlassHouse and I am so sorry that it is taking me so long to reply to your PM, too. I am not certain that the test I had is the same as the one from Gordon Medical Group but will definitely let you know what happens or what I learn after my phone consult next week. I need to read the report myself first but luckily still have a few days.

 

[Neunistiva]

I can afford the more expensive test at this time but I wonder how long it would take to find 9 other women around 26 years old. My boyfriend will be donating his blood as a healthy control to help any 29-year-old men who are ill.

I'm a 29-year-old woman, and I will probably do the test too. I don't know if we're close enough in age, though, but being a woman will certainly make it easier for us to be matched since ME/CFS is so much more common in women.

It's really thoughtful of your boyfriend to help like that.

 

[taniaaust1]

I gave a blood sample at OMI in May 2015 which was bio-banked and had them run the test recently. I just got the report of my results (47 pages!)

wow 47 pages!

 

[satori]

Hi @taniaaust1,

I've heard that Dr. Davis at Stanford is working on a cheaper metabolimics test. Gordon Medical stressed several times on the phone that they don't want people to donate for the test if their financial situation is already very strained. You can also have family and friends donate on the Donate page of the Gordon Medical website and specify your name in the "in honor of" section and whatever amount they donate will go toward funding your $1500 test (people pay via PayPal).

I can afford the more expensive test at this time but I wonder how long it would take to find 9 other women around 26 years old. My boyfriend will be donating his blood as a healthy control to help any 29-year-old men who are ill.



My impression was that it is just compared to the other 9 sick people and the 10 healthy people in your age-sex category, but I am not 100% sure. I would need to talk to them again to be certain. I also did not think to ask what constitutes age-matched as I'd assume this would be an age range (although this info is probably in the first study).

@Gingergrrl that's so cool! I look forward to seeing what your report looks like!

Do the healthy controls also have to pay the $1,500 fee?

 

[Gingergrrl]

wow 47 pages!

I realized after looking at the print-out, that it has many blank pages and a whole bibliography/reference section in the back so it is not actually even close to 47 pages after all! My goal is to read through it by the end of today to formulate my questions for my consult next week. I cannot post the report itself b/c it could jeopardize the research but will definitely post anything that I learn re: my own case after the consult.

ETA: to clarify, my test results are not part of anyone's research whatsoever but since the test itself is part of the research, I need to keep it private.

 

[GlassHouse]

@Thomas

What about patients that are on specific treatments (Antibiotics, valcyte, Ampligen, or any other antipathogen or immune modulating drugs)? Are they excluded from participation?

I'm not sure about this. Next time I speak to Gordon Medical on the phone I can ask more questions.

 

[Thomas]

@Thomas


I'm not sure about this. Next time I speak to Gordon Medical on the phone I can ask more questions.

Thanks

 

[GlassHouse]

@Neunistiva

I'm a 29-year-old woman, and I will probably do the test too. I don't know if we're close enough in age, though, but being a woman will certainly make it easier for us to be matched since ME/CFS is so much more common in women.

It's really thoughtful of your boyfriend to help like that.

That's awesome! I re-read the first paper but didn't see any info about what the age groupings were. Hopefully we'd be in the same group, then we'd just need 8 more people haha

Thank you my boyfriend understands how real and devastating the disease is.

 

[GlassHouse]

@satori

Do the healthy controls also have to pay the $1,500 fee?

Not unless they want a report comparing their results to the other healthy people and to the sick group. Anyone can donate blood for free (sick or healthy, but obviously specifying which one you are during the process). People can also donate just money in any amount if they want.

So you can donate blood for free, donate any amount of money and no blood, or donate blood and at $1500 and get an individualized report about your results.

Friends and family can donate toward someone's $1500 test by specifying "in honor of" when they make a donation (in any amount, you don't need the 1500 at once).

 

[Susan Murphy]

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.

Thank you for this! I am a 55 year old woman and will participate in this research.

 

[GodGenghis]

@Thomas

What about patients that are on specific treatments (Antibiotics, valcyte, Ampligen, or any other antipathogen or immune modulating drugs)? Are they excluded from participation?

The Naviaux metabolomics study now underway excludes those using an immune modilating drug like ampligen. LDN was okay as long as the person's been on it for some time. But I can't answer for this particular study.

 

[Gingergrrl]

@Gingergrrl that's so cool! I look forward to seeing what your report looks like!

@GlassHouse, I finally got to reply to your PM (hoping you got it!) and wanted to let you know that I did the first half of my phone consult re: my Metabolon test today and it was very helpful. It was an hour but very detailed so we only went over the first 17 pages so I will have part two of the call later in the week to go over the rest of the test, ask some questions, and discuss potential recommendations. My test has no connection to Gordon Medical so I don't want to derail this thread but happy to share more with you via PM.

 

[GlassHouse]

@Thomas

What about patients that are on specific treatments (Antibiotics, valcyte, Ampligen, or any other antipathogen or immune modulating drugs)? Are they excluded from participation?

I spoke to Gordon Medical yesterday and they confirmed that you can still participate if you are on treatments, just specify which treatments and doses you are on when you fill out the questionnaire.

I am not sure how this affects the comparisons or groupings of people, but, given that Gordon, Naviaux, and Davis are all in contact with one another, I trust them to be able to come up with clean statistical analysis, even I cannot yet understand it (just my personal feelings, and certainly not the only valid viewpoint here).

 

[Thomas]

@Thomas



I spoke to Gordon Medical yesterday and they confirmed that you can still participate if you are on treatments, just specify which treatments and doses you are on when you fill out the questionnaire.

I am not sure how this affects the comparisons or groupings of people, but, given that Gordon, Naviaux, and Davis are all in contact with one another, I trust them to be able to come up with clean statistical analysis, even I cannot yet understand it (just my personal feelings, and certainly not the only valid viewpoint here).

That's great information - thank you for checking and reporting back

 

[perrier]

My concern is that it may be months before this project is underway because there will be no testing done unless the batch is full: 10 patients, 10 controls, same gender, same age range, and all willing to pay 1500$ ( except the controls).

There are probably many folks who have offered their blood but not the cash.

Please update if anyone has more info.