Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

[leela]

did you see my first post? Do you think I shouldn't have posted about their third study? You think it was wrong to state that $1,500 is more than most of us can afford? The fact that he has an online supplement pharmacy should be a hidden fact?

@Nielk you are twisting my words. I do not think it should be hidden at all, I just think it has nothing to do with the study or the quality of GM's practice.
Also, I added an edit to my first post regarding the price, which I of course agree with you is too high for most of us, maybe you didn't see it :

"ETA: regarding the price, this is called Community-Sponsored research for a reason: if NIH actually funded research in any meaningful way, this sort of thing would not be necessary. This is why we have had patients moving across the country and paying out the nose for Ampligen or Ritux. That GM wants to move forward anyway is a good thing, and that many of us cannot afford to participate is a symptom of this whole 35-year tragic saga of denial and disrespect from the majority medical community."

 

[duncan]

I have no issue with donating, and I strongly support that.

Is the selling of the metabolite test also outside of the study, i.e., will the tests sold all go toward the study? And again, is it okay for a test to be sold before its utility and efficacy and relevance has been replicated and validated independently?

I can think of two examples where some might say something similar to this has been done and it has not worked out so well.

 

[Nielk]

I hear what you are saying, Leela. Although we all want things to move really fast, I think that we should wait for the second, larger scale replication to confirm the findings of the first study before jumping to ask patients to shell out $1,500 for this test. This is my personal opinion and I would hope that I am free to post my personal opinion - even if it doesn't agree with yours.

 

[ErdemX]

I had no information about Gordon Medical before and wanted to check what kind of supplements they are offering to the patients.

I'm very disappointed to see that one of the major sections of supplements are homeopathics. Homeopathy is one of the purest forms of pseudoscience, scientifically it contains no active ingredient and mostly it is just water or a sugar pill.

How am I gonna trust the cutting edge scientific research of a company who sees no problem selling water to suffering CFS patients as scientific medicine and makes money from that?

 

[leela]

I had no information about Gordon Medical before and wanted to check what kind of supplements they are offering to the patients.

I'm very disappointed to see that one of the major sections of supplements are homeopathics. Homeopathy is one of the purest forms of pseudoscience, scientifically it contains no active ingredient and mostly it is just water or a sugar pill.

How am I gonna trust the cutting edge scientific research of a company who sees no problem selling water to suffering CFS patients as scientific medicine and makes money from that?

Homeopathics just last week took me out of medical shock in 5 - 10 minutes. I have seen it work in animals and infants. It is vibrational medicine.
Even science recognises we are a collection of vibrating molecules.
I understand many people think it's BS but it has been of great use to me many times. Scientific method has not yet learned how to measure certain things.

Like anything else, you have to have the right remedy for the circumstance. Similarly, if you take Abx in the hopes of mending a broken leg, it
won't work. That doesn't prove Abx are useless as well as the people who prescribe them.

But let us not let this thread devolve into yet another debate about Homeopathics. supps, etc.

Over and Out,
~leela

 

[ryan31337]

$1,500 for a personal Metabolomic report. Pretty steep. Who can afford that.

Vaguely recall Ron Davis at IiME talking about these studies costing $70,000 per patient? Don't quote me on that though

 

[ErdemX]

Homeopathics just last week took me out of medical shock in 5 - 10 minutes. I have seen it work in animals and infants. It is vibrational medicine.
Even science recognises we are a collection of vibrating molecules.

You are free to believe in anything, but that doesn't give homeopathy any kind of scientific value. First of all, there is no proof of any kind that the water you buy from this website contains vibrations. No proof that "vibrations" can heal us. Also if that is true, everything in the universe has that kind of vibrations. Those only exist in your beliefs; you can't test them, or show them, or measure them in laboratory. Which is exactly our main topic here.

The problem here is that people who sell "vibrated water" with no active ingredient as medicine also do this very important scientific research. I wouldn't easily trust any scientist who sells fake science to patients as science.

 

[BurnA]

$1,500 for a personal Metabolomic report. Pretty steep

I didn't say if it was steep for a metabolic report

OK.

 

[Biarritz13]

What makes you think 1500 is steep for a metabolic report ? Do you know where it is available elsewhere cheaper? Do you know the profit margins on it ?

Tks.

I asked to a serious lab in my country who said the cost is 1800 euros per person. They also said they analyze more metabolites than the Naviaux's study.

 

[Gingergrrl]

I was told if I want to run the Metabolon test from my bio-banked sample from 2015 it would be approx $990 (but this price needs to be confirmed). It is not a cheap test no matter how you slice it and I have to decide if I want to pay this much money to have it as a baseline (and then do the test again in future once available through Laurel Crosby's group). I agree that these researchers are trying to help us and that we should support them on a publicly read forum with our words or they could decide to stop b/c we are unappreciative. This is just my opinion of course.

 

[Mij]

I would like to know, because there is so much information on this topic right now and am confused, whether there is a treatment for the abnormalities? If not. then I'm not going to pay for an expensive test that shows I have abnormalities.

I did this with HEMEX, paid $700 CDN out of pocket with some abnormalities that showed I had an "underlying infection" but the head hematologist and virologist here said it was nonsense. So that was it.

 

[Jonathan Edwards]

I have no issue with donating, and I strongly support that.

Is the selling of the metabolite test also outside of the study, i.e., will the tests sold all go toward the study? And again, is it okay for a test to be sold before its utility and efficacy and relevance has been replicated and validated independently?

I can think of two examples where some might say something similar to this has been done and it has not worked out so well.

I hear what you are saying, Leela - but I do not think that my comment was "unwarranted aspersion". Although we all want things to move really fast, I think that we should wait for the second, larger scale replication to confirm the findings of the first study before jumping to ask patients to shell out $1,500 for this test. This is my personal opinion and I would hope that I am free to post my personal opinion - even if it doesn't agree with yours.

I think Nielk is right to raise questions here. And I think Duncan's questions are also in order. The key issue here is scientific credibility. The situation is complex and may not be entirely clear but from what I hear so far I think I would warn that any study funded in this sort of way would not gain any credibility with the research community. There are conflicts of interest. There are problems about cohort selection. There seems to be a confusion between population data that may be used to investigate cause and interpretation of personal data before that investigation has occurred. I would worry that people may be contributing to a study that will earn the familiar description 'uninterpretable'. I don't like the peer reviewed funding system but like democracy it may have the advantage of being the least worst option.

 

[alex3619]

What makes you think 1500 is steep for a metabolic report ? Do you know where it is available elsewhere cheaper? Do you know the profit margins on it ?

Tks.

They want money for their research, and are looking at the patient community. So the cost will be substantially less than $1500. This is for those making donations to research. The test is similar to a reward program.

Stating potential conflicts of interest is never improper. Care must be taken to not draw unsubstantiated conclusions from that though.

 

[alex3619]

Vaguely recall Ron Davis at IiME talking about these studies costing $70,000 per patient? Don't quote me on that though

The range of tests being done by Ron Davis is quite broad. I don't know if that figure is accurate, but the testing done would be far beyond basic metabolomics.

 

[alex3619]

I would like to know, because there is so much information on this topic right now and am confused, whether there is a treatment for the abnormalities?

At this point we don't have proven treatments, period, though Ampligen was just approved in Argentina. This is about donations, and being rewarded for donating.

Crowd sourcing for research is going to become very widespread. The old methods are failing far too often.

There are other benefits from testing metabolic products. They provide clues, not proven answers. If anyone is having issues with getting insurance, pensions etc., then such tests might help. They can satisfy personal curiosity. Its up to the individual, based on their own needs, to decide if any cost is worth it.

At this point such tests will not provide a definitive diagnosis. With the advancing science such results might be used to diagnose in the future. People who have already tested will not have to get in the huge queue at that point, they just need the results interpreted.

 

[Gingergrrl]

My feeling on this may not be the norm but I would love to have the test run (even if there are no treatments yet) so I will have the results once future treatments become available.

I would not be doing it through GM and it would be through OMF or Laurel Crosby's group. I think this type of test could be useful for a variety of diagnoses in the future. It brings me hope to know there are researchers who are trying to solve these rare and misunderstood illnesses.

The bulk of my own focus is on autoantibody treatments vs. Metabolomics but I don't want to miss any opportunity that could possibly be of help in the future (and if I am wrong, it's a risk I am willing to take).

 

[Groggy Doggy]

I would be interested in participating if Gordon Medical was NOT selling nutritional supplements, vitamins, herbs, and homeopathy. To me, this is a conflict of interest and screams 'study bias'. We are all free to vote with our dollars.

 

[Gingergrrl]

I would be interested in participating if Gordon Medical was NOT selling nutritional supplements, vitamins, herbs, and homeopathy. To me, this is a conflict of interest and screams 'study bias'. We are all free to vote with our dollars.

The sample I did that was bio-banked was at OMI and they do not sell any supplements or products of any kind and I assume that Laurel Crosby's group at Stanford does not either. My goal is to have the results to discuss with my doctor (knowing my sample would never be part of any study) and then if there are treatments of any kind in the future that could even partially apply to me, I would have these results as a baseline. It is 100% my idea with no one pressuring me and it may turn out to even be a dead-end (and it still might not even be do-able)! I am at the point of leaving no stone un-turned and I feel this research in Metabolomics is solid and it will end up helping lots of illnesses, not just ME/CFS. I think Maureen Hanson, Dr. Davis, and Dr. Naviaux are all finding similar results with different sets of patients and I don't think anyone is forced to buy these supplements (but maybe I am misunderstanding)?

 

[Justin30]

e 35-year tragic saga of denial and disrespect from the majority medical community.

Just wanted to note that ME was first identified in the 1930s been a really long time of denial and disrespect. Modern day inhumanity.

 

[Justin30]

I wonder if the supplements purchased go to furthering research? If you get tested will they develop a supplement plan?

Also $1500 is justifiable if going towards research.

Finally if you look at MEActions post on the Metabolic findings by Naviaux they all coincide with what ME experts have all discussed. Mythlation, Gut Metabolism, phospholipid metabolism, BCAA Metabolism, Amino Acid Metabolism, Cholesteral and Non Goinadal issues and more...

This all points to what experts have been saying brain, gut, immune, endocrine, etc.

I know nothing is proven and still would count as pseudoscience because the scientific community loves to research drugs predominantly. And further many brought back to some state of health from this madness have used a combination of therapies.

Let them do there work and hopefully nutritional fixes could be steps out of the cruelty of the disease as drug risks are huge in some of these complex diseases.

I to believe metabalomics is extremely promising cause many of the wacked out diseases of today were not around 100 yrs ago or at the time when the industrail revolution, mass scale agriculture, environmental toxins, etc.