Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

[Justin30]

I think one would be hard pressed to not think this diseases has a firm foothold on metabolism and mitochondrial function.

 

[Justin30]

Further under homeopathy many of the supplements listed under this section are just cobinations of what many members already take. Heres an example:

http://www.npscript.com/gordonmedical/ans-cns-oral-spray/VX0002PAR#undefined2

 

[Groggy Doggy]

Hi @Gingergrrl

I have a few concerns about Gordon Medical:

1) They promote the use of complementary and alternative medicine to treat Chronic Fatigue Syndrome

http://www.gordonmedical.com/complementary-and-alternative-medicine/

"What conditions can CAM help?

CAM can treat a wide range of medication conditions from sinus issues to more complex medical issues like Chronic Pain and Fibromyalgia, or infections like Lyme disease, or poorly understood illness such as Chronic Fatigue Syndrome. Many people turn to Alternative Medicine when conventional medicine has failed them, but it does not have to be a last resort. Many people choose alternative care for their primary form of treatment."

2) They have an online store that sells nutritional supplements, vitamins and minerals, herbs, and homeopathy.

http://www.npscript.com/gordonmedical

3) Their home page has a copy of Naviaux's paper along with

"We are exploring many modalities of treatment, and partnering with researchers at UCSD, Stanford University, and the Society of Cannabis Clinicians, along with several groups working to improve collecting and processing patient history and outcome data.

Our most active current research is theMetabolomics Research we are doing in collaboration with Robert Naviaux of UCSD, through the newly established Gordon Medical Research Center."

In other words, Gordon Medical is partnering with researchers at Stanford University (Ron Davis) and UCSD (Navaiux).

4) Navaiux's paper, Metabolic features of chronic fatigue syndrome 'The authors declare no conflict of interest"

_

So at this point, I feel disappointed.

GD

 

[valentinelynx]

So they offer the opportunity to their patients to purchase supplements. So does every practice. This is not unusual.

It may not be unusual, particularly for "alternative" medical practices, but it is certainly not universal. In fact, in mainstream medicine, it is pretty uncommon.

 

[Justin30]

I believe it is in Europe and even China but they use herbs, supplements and other natural treatment modalities along with we Western Medicine approaches to treat disease.

Further medical practitioners in these countries I believe i taught in other modalities other than western medicine.

Ill give an example a old friend of mine used to sell a extremely highly potent form of ginsing to hospitals in China as these used it along side western med modalities.

Also in Cancer Centers in the US and abroad use high dose IV vit C as part of their protocols.

Until we know what ME is a mixture of therapies are used by many practitioners.

Further I think that personalized medicine like in cancer will be the key to getting ME and Lyme patients back to health.

I just dont see the harm in using a holistic approach to heal.

And finish this up Mito diseases can and are only treated with supplements and formulas. I have a family member with a very serious Mito disease and if it wasnt for his nutrtional formula they would not have lived as long as they have and would not be healthy. If you read the research papers on the condition this family member should be dead but the specialized formula of amino acids, carbohydrates and fats has kept them alive and well for the most part.

Its that we need specialists to monitor and test and formulate the correct meds, nutrition, herbs or whatever else it will take to get us out of this state we are in.

 

[Justin30]

another point that I have made in countless threads is:

Mito diseases main symptoms are encephalitis or encephalomylietis

And Encephalitis and Encephalomylietis cause mitochondrial dysfunction

The best response polls on PR seem to be to 2 methods 1. Being LDN 2. Addresding MTHR

If they sell supplements so what.

If they are researching ME and the biological aspects of it than Thank you.

Not trying to get after you @Groggy Doggy. I appreciate your views.

I am glad that these major medical institutions are collaborating.

The Neuroinflamation Dr brain fog moment is studying a number of natural substances to treat ME.

Many drugs are just chemically altered forms of enzymes or compounds in plants, etc.

Would be great if we just had the money and specialists to help us.

I am more pissed that ME gets no money than even worrying about this...and that Countries are blantantly ignoring the disease...its aweful..

We need specialist centers and money I bet you if the said ME is an epedemic which it is...and that they put the millions on the table researchers and scientists would flock to help...

That would come along with ME is not all in our heads PACE was a flawed study and that this is a true biological disease.

The day or ME Associations join forces and make a real TV or Youtube commercial and other advertising of the massive inhumane suffering of ppl with ME then masses will get a chance to see the reality of a hidden plague that ME is affecting more ppl in many countries than HIV.

I just wish we could figure out how to get the money instead of worrying about these other things.

It may not be for some of us that we get well in our life time but we could sure influence the generations to come.

 

[frog_in_the_fog]

... CAM can treat a wide range of medication conditions from sinus issues to more complex medical issues like Chronic Pain and Fibromyalgia, or infections like Lyme disease, or poorly understood illness such as Chronic Fatigue Syndrome. Many people turn to Alternative Medicine when conventional medicine has failed them, but it does not have to be a last resort. Many people choose alternative care for their primary form of treatment." ...

... "We are exploring many modalities of treatment, and partnering with researchers at UCSD, Stanford University, and the Society of Cannabis Clinicians, along with several groups working to improve collecting and processing patient history and outcome data.

Our most active current research is the Metabolomics Research we are doing in collaboration with Robert Naviaux of UCSD, through the newly established Gordon Medical Research Center." ...

Well it looks like Gordon Medical is covering all the bases. Not sure I would trust any current treatments from a clinic that can't decide on which way to go on me/cfs.

The cannabis angle doesn't always work, as there are so many varieties, and potency variation. For pain management some choose to try high CBD cannabis oil, not to be confused with hemp oil. A lot of good things are being said about this oil because of its healing properties and relatively low THC content.

As for Stanford, I fear that some of their more aggressive treatments are very expensive and could do more harm than good. While some of the more severely ill have experienced significant improvement, typically this effect is only temporary, not a cure. Do we actually know how many patients at Stanford's cfs/me clinic have actually been cured?

The Naviaux work seems very promising, perhaps enabling researchers to eventually find the missing link. This research doesn't even hint at a cure at this point, only a method of positive diagnosis of that which greatly maligns us.

Is $1500 really a huge price to pay to get some answers and further research? Does having all this information really help us? Does it give us a better idea of what treatments might work? It is too early to tell on some of these questions.

 

[ErdemX]

Further under homeopathy many of the supplements listed under this section are just cobinations of what many members already take. Heres an example:

http://www.npscript.com/gordonmedical/ans-cns-oral-spray/VX0002PAR#undefined2

Taking, for example gaba as a supplement and gaba in a 6X Homeopathic dilution is so far from each other. In a typical gaba supplement, there might be 750mg gaba per pill. But 6X means you get 1mg of gaba for 1.000.000 mgs of water, which equals to 1 kilogram of water. Gaba 6X & 200K might look even more scientific and cool, but it is nothing close to a person taking a gaba supplement. It is much closer to a person drinking a glass of water. Usually you get only some atoms of the ingredient listed there, or more likely nothing of it. But the way it presents itself is so deceptive. That's way it's listed as pseudoscience.

 

[Hutan]

Navaiux's paper, Metabolic features of chronic fatigue syndrome 'The authors declare no conflict of interest"

Eric Gordon of Gordon Medical was a co-author of the Navaiux paper. And he has a clinic that advertises that it can treat people with CFS and that uses the metabolomic research and the other people and organisations associated with the research to give the clinic credibility. The clinic sells supplements to treat CFS.

And we have been told here on PR by the research collaborators that CFS may not need any radical treatment, instead diet changes and supplements may be enough.

To me, this is a pretty clear case of an undisclosed conflict of interest on the part of Eric Gordon. Certainly if we were seeing something similar from the BPS crowd, we would be slamming them.

Of course just having a conflict of interest is not a crime and does not make good science impossible. We need experienced clinicians to contribute to research.

And even an undeclared conflict of interest does not mean a research finding is invalid. But it doesn't help with credibility.

 

[Gingergrrl]

Hi @Gingergrrl I have a few concerns about Gordon Medical:

I don't dispute what you said re: Gordon Medical and have never been there nor ever had any contact with them nor personal experience. If I do the metabolomics testing, it will be through OMF or Dr. Davis's group at Stanford and solely for my own potential future treatment and not as part of any study. I would not be buying any supplements from them.

I just feel the metabolomics research has great potential for a variety of diseases and if it can be duplicated by different centers, it will be really interesting to see. And if I spend money on the test and am wrong, I am willing to accept that risk. Hope that makes more sense!

 

[Groggy Doggy]

I don't dispute what you said re: Gordon Medical and have never been there nor ever had any contact with them nor personal experience. If I do the metabolomics testing, it will be through OMF or Dr. Davis's group at Stanford and solely for my own potential future treatment and not as part of any study. I would not be buying any supplements from them.

I just feel the metabolomics research has great potential for a variety of diseases and if it can be duplicated by different centers, it will be really interesting to see. And if I spend money on the test and am wrong, I am willing to accept that risk. Hope that makes more sense!

Hi @Gingergrrl

As with other aspects of our illness, we need to make up our own minds regarding what action to take. It's good to discuss what we learn here on PR so we can be well informed consumers. Some of us are in different financial positions, and may be limited in choosing various options.

I don't think any of us are "wrong" to choose metabolomics testing. I think we need to research our options carefully (doctors/studies/tests/treatments/travel) given constraints on finances and impacts on our health.

In the perfect world we would have access to everything we desire.

 

[Groggy Doggy]

another point that I have made in countless threads is:

Mito diseases main symptoms are encephalitis or encephalomylietis

And Encephalitis and Encephalomylietis cause mitochondrial dysfunction

The best response polls on PR seem to be to 2 methods 1. Being LDN 2. Addresding MTHR

If they sell supplements so what.

If they are researching ME and the biological aspects of it than Thank you.

Not trying to get after you @Groggy Doggy. I appreciate your views.

I appreciate your views too!

 

[frog_in_the_fog]

And we have been told here on PR by the research collaborators that CFS may not need any radical treatment, instead diet changes and supplements may be enough.

You know I read this and I didn't think twice about it till now. Thanks for pointing this out! No conflict of interest, my foot!

 

[Sidereal]

Eric Gordon of Gordon Medical was a co-author of the Navaiux paper. And he has a clinic that advertises that it can treat people with CFS and that uses the metabolomic research and the other people and organisations associated with the research to give the clinic credibility. The clinic sells supplements to treat CFS.

I was stunned to see that (small) part of the discussion section of the PNAS paper hawking vitamins as a potential treatment for CFS. In a muddy field where nothing is clear, there is one thing we can be certain of from decades and decades of self-experimentation with supplements: it's the one approach we know doesn't lead to recovery.

 

[frog_in_the_fog]

Until we know what ME is a mixture of therapies are used by many practitioners.

Yes, it seems many practitioners are grasping at straws. Science / serendipity / trail and error, these are what we have to work with.

 

[bel canto]

Gordon Medical may have an apparent conflict-of-interest, but metabolomics is a field of research that is happening all over, and most researchers do not sell supplements. If this hypo metabolic state is involved with or creates deficiencies, treatment of those may be important to allowing the body to recover from that state. Anecdotal evidence seems to indicate that our individual trials are not successful, but maybe it takes a complex, individualized cocktail based on our own metabolic testing results to help us.

Hopefully, the testing will allow us to never have to use the trial and error method again! Vitamins and sups may not be sufficient, but we can't know right now that they're not going to be necessary.

 

[Tuha]

I was stunned to see that (small) part of the discussion section of the PNAS paper hawking vitamins as a potential treatment for CFS. In a muddy field where nothing is clear, there is one thing we can be certain of from decades and decades of self-experimentation with supplements: it's the one approach we know doesn't lead to recovery.

I dont want to say that the supplements will cure us but we still dont know where is the problem exactly, what to target. There seems to be around 20 metabolic problems. Many of us tried supplements and most of the time it was just "try and error". Maybe if there would be a good cocktail and we know what to target exactly - maybe it can work. What is sure that we need much more research. We need to validate this study by an independent group and if validated we need to continue the research in this area.
That´s why I would like Lipkin and his big microbiome study to get funding. He has potential to replicate these results.
http://microbediscovery.org/

 

[alex3619]

Let me make a guess as to what a cure might look like: two or three repurposed drugs and a bunch of nutritional support. Nutritional factors alone are likely to be supportive, and then only limited support. We have tried, and are still trying, just about every nutritional supplement there is, and in various combinations. Success is typically limited.

 

[Forbin]

I still think the most important finding of the Naviaux paper is this:

Area under the receiver operator characteristic curve analysis showed diagnostic accuracies of 94% [95% confidence interval (CI), 84–100%] in males using eight metabolites and 96% (95% CI, 86–100%) in females using 13 metabolites.

It's a finding that seems like it should be pretty straight forward to replicate using cohorts of well-diagnosed patients and controls. If it's verified by others (and found to be exclusive to ME/CFS), it will change everything.

Everything.

 

[Groggy Doggy]

The main treatment that improved my health is an expensive repurposed drug. I am not buying into the CAM theory; it sounds too much like Walitt at NIH and also our dear old "friend" Stephen Straus.

So how does that old saying go? "Fool me once, shame on you; fool me twice, shame on me"

I am done with being shamed. The herbs and massage treatment ain't gonna cut it to cure ME. I am interested in real medicine.