Neunistiva
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Janet Dafoe is talking about Dr. Gordon on her twitter account:
@JanetDafoe
@JanetDafoe
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Janet Dafoe is talking about Dr. Gordon on her twitter account:
@JanetDafoe
I still think the most important finding of the Naviaux paper is this:
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.
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.
To me, this is a pretty clear case of an undisclosed conflict of interest on the part of Eric Gordon.
- Robert K. Naviauxa,b,c,d,1,
- Jane C. Naviauxa,e,
- Kefeng Lia,b,
- A. Taylor Brighta,b,
- William A. Alaynicka,b,
- Lin Wanga,b,
- Asha Baxterf,
- Neil Nathanf,2,
- Wayne Andersonf, and
- Eric Gordonf
- Robert K. Naviaux
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- bDepartment of Medicine, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- cDepartment of Pediatrics, University of California, San Diego School of Medicine, San Diego, CA92103-8467;
- dDepartment of Pathology, University of California, San Diego School of Medicine, San Diego, CA92103-8467;
- Jane C. Naviaux
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- eDepartment of Neurosciences, University of California, San Diego School of Medicine, San Diego, CA92103-8467;
- Kefeng Li
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- bDepartment of Medicine, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- A. Taylor Bright
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- bDepartment of Medicine, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- William A. Alaynick
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- bDepartment of Medicine, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- Lin Wang
- aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- bDepartment of Medicine, University of California, San Diego School of Medicine, San Diego, CA 92103-8467;
- Asha Baxter
- fGordon Medical Associates, Santa Rosa, CA 95403
- Neil Nathan
- fGordon Medical Associates, Santa Rosa, CA 95403
- Wayne Anderson
- fGordon Medical Associates, Santa Rosa, CA 95403
- Eric Gordon
- fGordon Medical Associates, Santa Rosa, CA 95403
Members of the CFS/ME community and their advocates can contribute to the success of the study in three main ways:
They can participate in the study by volunteering a blood sample. – PARTICIPATE
They can recruit a person without a diagnosis of CFS/ME to donate a blood sample that will serve as a comparison sample.
Members of the community can make a tax-deductible donation to fund the study. – DONATE
For a donation of $1500 or more, individuals will receive a personal metabolomic report that will show them how their personal metabolomic profile compares to a healthy population and the overall CFS population. Included in the >500 metabolites in this report will be analysis of sphingomyelin metabolites which were shown to be of interest to the CFS/ME community in our first study. This is the ONLY metabolomic report currently capable of providing data on this critical class of molecules.
We look forwarded to working with the CFS/ME patient community and their supporters to make this unique community-sponsored research study a success.
We have collected 12.06% of our $400,000.00 target for the Metabolomics in CFS/ME.
AgreedEric Gordon of Gordon Medical is a co-author of the Naviaux paper. There are other nine authors on this paper, four of which are associated with Gordon Medical Associates. It may be a conflict of interest that Gordon operates a supplement company but isn't he offering a test needed for this research. If it turns out that this is good research that gets replicated with good results, nobody is going to be forced into buying his supplements and it's a personal choice if people want to 'donate' money for the test. It would be more of an issue if it were only Gordon Medical Associates doing the research. The research is being carried out by others not associated with any supplement company.
I don't believe it was undisclosed. It says right on the research paper that he is associated with Gordon Medical Association in the "Author Affiliations" section and that is easily googled.
The truth is that yes Gordon on his website is stating:
Since we have a long history of governments not funding research, we shouldn't immediately dismiss things like this.
Yes, it's true that he is trying to raise funds by offering the metabolomic report in return for a donation of 1500 dollars.
There is lots of fund raising done this way -- eg. if you donate x amount we will give you this in return. It is a lot of money for many to spend. I don't think pointing these things out is being negative or smearing Gordon Associates.
I, for one, am going to wait for more results and avoid any speculation that casts anybody in a bad light that is involved/producing this research. The test, research, money has to come from somewhere. And since the government has a piss poor history of giving any research dollars, I don't think we should dismiss the research on the basis of one author owning a supplement company. If it turns out taking X supplements might be helpful in some respect, then as consumers we are free to choose where we buy our supplements.
Thank you @Justin30 . I am pretty overwhelmed by lots of the stuff on this thread. We know Eric Gordon to be a very dedicated, thoughtful doctor who works really hard, really cares about his patients, and is willing to try anything that works. He is not getting rich off of patients. It's hard to even know where to start in addressing all the stuff on here.Thats a huge statement. Thanks Janet. I hope he can help Whitney so bad. I hope that Whitney recovers.
I want to see miracles and hopefully Whitney and others will be those miracles.
Yes, it's true that he is trying to raise funds by offering the metabolomic report in return for a donation of 1500 dollars.
He's not getting a profit! It goes to pay for the testing. Not done in his office. This is NOTHING like xmrv!Wow! This is sounding more and more like XMRV 2.0!
We get the big break though paper and before anyone can confirm it, the affiliated lab offers an expensive lab test. What did Yogi Berra say? "It's deja vu, all over again!"
This was my thought exactly, I want to be open-minded, but it is not easy when you are bombarded with so much information from so many sources. We are each entitled to form our own opinions, but should we keep our unsupportive comments to ourselves? It is easy to be cynical when we feel we have been led down the wrong path so many times.Wow! This is sounding more and more like XMRV 2.0!
We get the big break though paper and before anyone can confirm it, the affiliated lab offers an expensive lab test. What did Yogi Berra say? "It's deja vu, all over again!"
Thank you again for setting the record straight on this contentious detail. Also thank you for pointing out in a previous post that the cost of doing good science is not cheap.He's not getting a profit! It goes to pay for the testing. Not done in his office. This is NOTHING like xmrv!
Wow! This is sounding more and more like XMRV 2.0!
We get the big break though paper and before anyone can confirm it, the affiliated lab offers an expensive lab test. What did Yogi Berra say? "It's deja vu, all over again!"
Thank you @Justin30 . I am pretty overwhelmed by lots of the stuff on this thread. We know Eric Gordon to be a very dedicated, thoughtful doctor who works really hard, really cares about his patients, and is willing to try anything that works. He is not getting rich off of patients. It's hard to even know where to start in addressing all the stuff on here.
Mass Spectrometers used for metabolomics testing cost a million dollars each.
He's sending the samples to Dr. Naviaux for the test. The $1500 he's asking for: $1000 goes to Naviaux (it's expensive to do this test!) and $500 goes to the computer process of getting out the individual's data, and all the blood processing, etc. He made it a donation so it could be tax deductible. Perhaps you'd rather have him just charge the fee. An MRI costs much more than this, but is covered by insurance. There is no insurance for CFS patients for this stuff, because of the extreme neglect of the whole medical profession, CDC, NIH, etc. It is really hard to get funding for this disease, so researchers are getting creative and using crowd funding-type methods. One way (also used by Nancy Klimas for DNA tests) is to have the patients get the tests done and let the researchers have the data. Ron and Laurel Crosby are doing this too, with Metabolon's testing. It's true, we are not there yet in terms of knowing exactly what to do with the results as a patient, but I would think patients would do this for several reasons. Patients can help the research enormously, while getting info about their own profile. Patients can finally see a lab report that shows massive things wrong. It's very validating. It's helpful to show their own physicians who need convincing. Attempting to normalize some of the levels of metabolites may be helpful. With more research we will know more about how to do this. Building a good foundation in the body with more things in the normal range will likely be the underpinning of the next step, turning on the switch out of hypo metabolism, or whatever it is.
Whitney has seen Dr. Gordon for YEARS. He is the one who first diagnosed him. We have bought many supplements from him that Whitney has tried. In the absence of good research, CFS patients are left with trying things. Some people are lucky enough to find something that helps a little, or a lot.. It's rare or never that they get "cured". Having a doctor who is willing to try things is a blessing. Especially a knowledgable, experienced doc like Dr. Gordon. He is not getting rich off of supplement sales. He is providing things and making them easier to get. Some of this stuff is hard to find.
Dr. Gordon has been available by phone for us, and has driven all the way down here to see Whitney several times. I think it is really sad to see people talking like this about him. We need docs like him. He is trying to help us. He's another person who is totally dedicated to helping people with CFS. He is feeling REALLY bad about what is being said about him on here and on twitter. I understand that people are wary and skeptical, given the history of this disease. Now we have some really good people trying to help. Maybe we should be grateful and not do things that drive them away. I think there is a way to ask questions that does not accuse people or assume they are bad and unethical.
I hope this is helpful. It feels good to be part of a supportive community.
Ron Davis has read this and he approves of this message.
I think there are many ME/CFS specialist doctors who don't accept insurance who are indeed medical doctors with valid degrees and licenses.To me personally, the fact that Dr. Gordon's practice does not accept any medical insurance is disturbing as well. Some alternative practitioners do not accept insurance because they are not medical doctors but, Dr. Gordon is - so I'm not sure why he doesn't take insurance.
We are a cash based practice only and all services provided are expected to be paid for in full, at the time of service. This includes Medicare patients.
When you check out and make your payment to us, you will receive a receipt with required codes which you may submit to your insurance company for your own reimbursement. Please understand that we offer many innovative treatments and your insurance company may not pay for all of the treatments you receive in our office.
Q: Does he accept and bill medical insurance companies in his office?
A: No. We ask for payment at the time of each visit (Visa, MasterCard & Discover is an option). We provide you with a statement of services (including ICD-9 and CPT codes) that you may then submit to your insurance carrier. Check with your insurance carrier first for your policy coverage details regarding visits to a "non-participating" provider. By "non-participating", this means Dr. Golan has not signed any contracts with insurance companies.
Q: Why doesn't Dr. Golan accept insurance?
A: After ten frustrating years of accepting insurance, Dr. Golan made the decision to switch to "fee for service". What was frustrating was that his style of spending one to one and one-half hours with each new patient and thirty or more minutes in follow-up visits did not fit the insurance industry's "usual and customary", and as a result, Dr. Golan's insurance reimbursements represented only a fraction of the time and effort he spent. Now, he is able to spend the time required to get to thoroughly know his patients and their health concerns and is able to decide with them what tests and treatments to pursue without third party interference. He works on your behalf.
Q: Is Dr. Golan a Medicare participant?
A: No, he has signed an "Opt Out" agreement whereby he, nor Medicare patients can bill Medicare for his services. The policy for Medicare patients is the same for everyone else, fee for service. The reasons for opting out of Medicare are the same for not participating with insurance companies, except that Medicare restrictions are far more severe.
Q: Is Dr. Golan a primary care physician?
A: No, he functions more as a specialist that patients usually see for a series of visits until their concerns are resolved.
Isn't it far better that, rather than being blindsided by those accusations, we may choose to not wave the research in front of our sceptical doctors and family just yet.