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Janet Dafoe is talking about Dr. Gordon on her twitter account:
@JanetDafoe
@JanetDafoe
Gordon Medical Community Sponsored Metabolomic Study (Individual Data)
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As has been pointed out in other threads, Dr Myhill has been doing just this for years, with varying levels of success.
Some have found recovery, some partial success, and others, like me, no difference at all just with diet and supplements.
I don't know anything about the Dr in question on this thread, but I do know that many of the good ME Drs who have helped many patients have been the subject of harassment and vilification and im not going to be rushing to judge anyone.
Some have found recovery, some partial success, and others, like me, no difference at all just with diet and supplements.
I don't know anything about the Dr in question on this thread, but I do know that many of the good ME Drs who have helped many patients have been the subject of harassment and vilification and im not going to be rushing to judge anyone.
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Eric 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.
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.
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Agreed
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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.
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.
@Rose49 thank you for your insight it is great to hear first hand knowledge about a Dr that has obviously gone out of his way to help Whitney.
Like I mentioned earlier not being from the US and having family their Drs come under major scrutiny.
Nothing is proven in CFS and many have suffered far to long along with their families.
I think its time to stop hating on the Drs that are treating our illness as one that is truely biological in nature and really address the real problems. These being:
I find some much on this forum is helpful but I see some much writing going into these threads that could be better articulated and used to:
I think its time to use our words to do something more than just chat, discuss and and blabber about those that treat ME and Lyme diseases for what they are.
This is a world full of imperfections, unfortunate circumstances and inhumanity.
Since we fall into these areas time to collaborate to make our lives, our families lives our childrens lives a place where ME is researched, funded and and solved so that the suffering stops.
I keep saying and I get sick of saying it is that ME Organizations need to create a commercial to bring the severity to and actual prevalence to the masses.
I know many that wont even say they have CFS or ME....thats sad when u know how sick we can get.
Like I mentioned earlier not being from the US and having family their Drs come under major scrutiny.
Nothing is proven in CFS and many have suffered far to long along with their families.
I think its time to stop hating on the Drs that are treating our illness as one that is truely biological in nature and really address the real problems. These being:
- Little NIH funding, support, and follow through
- CDC and lack of recognition
- PACE and CBT and GET
- Canadian recent "CFS is not a disease"
- Europe and MUS
I find some much on this forum is helpful but I see some much writing going into these threads that could be better articulated and used to:
- Reach out to parliament
- Write letters and testimonials on there disease
- Create websites
- Try to in some way problem solve the disjointed/silo effect happening with ME organizations
- Figure out ways to/or create media buzz
I think its time to use our words to do something more than just chat, discuss and and blabber about those that treat ME and Lyme diseases for what they are.
This is a world full of imperfections, unfortunate circumstances and inhumanity.
Since we fall into these areas time to collaborate to make our lives, our families lives our childrens lives a place where ME is researched, funded and and solved so that the suffering stops.
I keep saying and I get sick of saying it is that ME Organizations need to create a commercial to bring the severity to and actual prevalence to the masses.
I know many that wont even say they have CFS or ME....thats sad when u know how sick we can get.
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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!"
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!"
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He's not getting a profit! It goes to pay for the testing. Not done in his office. This is NOTHING like xmrv!
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.
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.
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.
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Im going to keep inside what I really think about this comment.
@joshualevy do you believe PEM is real?
YES OR NO
If yes than you can put yourself amongst the many sientific papers that show a decrease in functiona capacity or an increase in symptomolog leading to extended periods of rest.
All of ME researches show through many tests ie exercise test, bacterial translocation after exercise, increased cytokines in the blood after exercise etc.
This is part in parcel with encephalopathy cause mito malfunction and vice versa.
For the sake of the many sick all this showcases in the study is that certain metabalic Pathways are messed up....have you read the MEAction overview or the study itself....this is just more proof that we have a mitochindrial issue along with whatever else is going on in our bodies.
I am stricken by this comment that a team of Nobel Laureats, Standford Drs, Dr Chenney, Dr Bell, and many others would point to Naviaux as being the one that found mito problem.
Did you also read that the best labs in the country were used to screen blood, etc. Harvard, Standford, etc.
I agree this mito issue may not be whats happening in all of us but I bet you a lot a people have this at the core of their ME.
I personally thinks its an encephalopathy and true encephalomylietis at its core at that the NIH and CDC dont want to say oops we left 2.5 million of you sick from common viruses and bacteria that we dont have proper screening tools to evaluate you with...when you get sick...or are in the early stages....like Lipkins Virus Chip or a Bacterial Chip...anyways if all these places had tobuse IVIG right from the start med bills would add up pretty quick hey...
This at its core has mito issues since the day it was first discovered years ago.
The study is just proof. Enough said.
@joshualevy do you believe PEM is real?
YES OR NO
If yes than you can put yourself amongst the many sientific papers that show a decrease in functiona capacity or an increase in symptomolog leading to extended periods of rest.
All of ME researches show through many tests ie exercise test, bacterial translocation after exercise, increased cytokines in the blood after exercise etc.
This is part in parcel with encephalopathy cause mito malfunction and vice versa.
For the sake of the many sick all this showcases in the study is that certain metabalic Pathways are messed up....have you read the MEAction overview or the study itself....this is just more proof that we have a mitochindrial issue along with whatever else is going on in our bodies.
I am stricken by this comment that a team of Nobel Laureats, Standford Drs, Dr Chenney, Dr Bell, and many others would point to Naviaux as being the one that found mito problem.
Did you also read that the best labs in the country were used to screen blood, etc. Harvard, Standford, etc.
I agree this mito issue may not be whats happening in all of us but I bet you a lot a people have this at the core of their ME.
I personally thinks its an encephalopathy and true encephalomylietis at its core at that the NIH and CDC dont want to say oops we left 2.5 million of you sick from common viruses and bacteria that we dont have proper screening tools to evaluate you with...when you get sick...or are in the early stages....like Lipkins Virus Chip or a Bacterial Chip...anyways if all these places had tobuse IVIG right from the start med bills would add up pretty quick hey...
This at its core has mito issues since the day it was first discovered years ago.
The study is just proof. Enough said.
@joshualevy are you a patient, researcher or involved in the scientific community as a Dr or something else?
You never did answer this when I asked you?
You never did answer this when I asked you?
Your input is much appreciated and it's nice to hear that you have the utmost confidence with Dr. Gordon. It is exemptions like to hear that he even made house calls to treat Whitney. It is so rare to see such dedication from doctors.
This forum is a place where patients can feel free to talk about their concerns and feel safe to do so. It is important for us to discuss concerns and yes at times it might mean that we criticize the government and even doctors.
It is not okay to spread lies and when that happens either by mistake or on purpose others will come on and point it out and the facts come out - as they should.
When I was stating that $1,500 is steep for patients - that's exactly what I meant. I didn't say that dr. Gordon is taking a profit.
ME patients - especially those that have been ill a very long time, are very constrained financially. We have lost our incomes and the cost of medical care for us is a huge strain. It is not unusual for patients to spend tens of thousands of dollars if not more on their basic medical care - just to survive.
So - although I understand that ME researchers are stuck because they do not get federal funding for thei studies, patients in the majority are tapped out. We have given to our researchers time and time again. There comes a point when it is too much pressure on patients who are so sick that they barely live a life.
So, when they are told to extend more and more, I think it's understandable that they would question exactly where it is going and why.
I think it is the patients' rights to question whether this might be premature. Is there enough evidence yet, that this test will make a real difference in our lives. For many of us this $1,500 might mean that we eat less or do without medications for a while.
For those for whom money is no object, great - they don't need to be so inquiring but I don't think that's the case for most of us.
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.
There are other doctors whose practice is similar and patients have had many complaints. The driving force being making as much money as possible from desperate patients.
We have been burned by "well meaning" doctors selling tests prematurely which turned out to be fake. I'm not saying this is the case here. I'm just explaining why we are careful.
To state that we should not discuss doctors because they mean well and do research for us, I don't think is fair. I think that we should be able to state facts, discuss them and everyone is free to come to their own conclusion.
This forum is a place where patients can feel free to talk about their concerns and feel safe to do so. It is important for us to discuss concerns and yes at times it might mean that we criticize the government and even doctors.
It is not okay to spread lies and when that happens either by mistake or on purpose others will come on and point it out and the facts come out - as they should.
When I was stating that $1,500 is steep for patients - that's exactly what I meant. I didn't say that dr. Gordon is taking a profit.
ME patients - especially those that have been ill a very long time, are very constrained financially. We have lost our incomes and the cost of medical care for us is a huge strain. It is not unusual for patients to spend tens of thousands of dollars if not more on their basic medical care - just to survive.
So - although I understand that ME researchers are stuck because they do not get federal funding for thei studies, patients in the majority are tapped out. We have given to our researchers time and time again. There comes a point when it is too much pressure on patients who are so sick that they barely live a life.
So, when they are told to extend more and more, I think it's understandable that they would question exactly where it is going and why.
I think it is the patients' rights to question whether this might be premature. Is there enough evidence yet, that this test will make a real difference in our lives. For many of us this $1,500 might mean that we eat less or do without medications for a while.
For those for whom money is no object, great - they don't need to be so inquiring but I don't think that's the case for most of us.
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.
There are other doctors whose practice is similar and patients have had many complaints. The driving force being making as much money as possible from desperate patients.
We have been burned by "well meaning" doctors selling tests prematurely which turned out to be fake. I'm not saying this is the case here. I'm just explaining why we are careful.
To state that we should not discuss doctors because they mean well and do research for us, I don't think is fair. I think that we should be able to state facts, discuss them and everyone is free to come to their own conclusion.
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There is a difference between scepticism and cynicism. There is a difference between questioning something and trying desperately to tear it down.
I know we have all been hurt and betrayed by medical professionals, which are precisely those people we put the most trust in. But attacking a researcher based on speculation is not justified by what someone else has done to you in the past.
And making up your minds without any evidence, or even worse making up their minds despite evidence does not make you an edgy sceptic. It makes you blind to reality.
I find these complaint about the price childish. And I say this as a person on disability barely making ends meet.
Aren't we all old enough that we know things cost what they cost, not what we can afford? Haven't we all dealt enough with medicine these long years that we know $1,500 is a normal price for using expensive medical equipment and expertise?
And seriously, what pressure? No one has been pressured here to spend money. Of course you won't spend money on medical research if it means you can't eat!
There are no guarantees in medical research. No one can tell you what the results will be. One promising paper has been published and people seem angry that it hasn't solved all our issues from the beginning of time.
We finally have a good clue and it's great seeing dedicated researchers follow it, wherever that may lead.
I know we have all been hurt and betrayed by medical professionals, which are precisely those people we put the most trust in. But attacking a researcher based on speculation is not justified by what someone else has done to you in the past.
And making up your minds without any evidence, or even worse making up their minds despite evidence does not make you an edgy sceptic. It makes you blind to reality.
I find these complaint about the price childish. And I say this as a person on disability barely making ends meet.
Aren't we all old enough that we know things cost what they cost, not what we can afford? Haven't we all dealt enough with medicine these long years that we know $1,500 is a normal price for using expensive medical equipment and expertise?
And seriously, what pressure? No one has been pressured here to spend money. Of course you won't spend money on medical research if it means you can't eat!
There are no guarantees in medical research. No one can tell you what the results will be. One promising paper has been published and people seem angry that it hasn't solved all our issues from the beginning of time.
We finally have a good clue and it's great seeing dedicated researchers follow it, wherever that may lead.
I think there are many ME/CFS specialist doctors who don't accept insurance who are indeed medical doctors with valid degrees and licenses.
The Gordon Medical website doesn't go into much detail regarding why they don't accept insurance:
http://www.gordonmedical.com/patient-information/office-policies
FWIW, the Yelp reviews for Gordon Medical Associates are a mixed bag - some very good and some very bad:
https://www.yelp.com/biz/gordon-medical-associates-santa-rosa
I paid out of pocket to see Ralph Golan, a chronic disease specialist in Seattle with a stellar reputation. Many doctors treating chronic illnesses just don't want the hassle of dealing with insurance companies and so they switch to a fee-for-service model. Here he explains why he doesn't want to deal with insurance:
http://www.ralphgolanmd.com/faq.htm
The Gordon Medical website doesn't go into much detail regarding why they don't accept insurance:
http://www.gordonmedical.com/patient-information/office-policies
FWIW, the Yelp reviews for Gordon Medical Associates are a mixed bag - some very good and some very bad:
https://www.yelp.com/biz/gordon-medical-associates-santa-rosa
I paid out of pocket to see Ralph Golan, a chronic disease specialist in Seattle with a stellar reputation. Many doctors treating chronic illnesses just don't want the hassle of dealing with insurance companies and so they switch to a fee-for-service model. Here he explains why he doesn't want to deal with insurance:
http://www.ralphgolanmd.com/faq.htm
Just for example a nutraeval test through a Naturopath in Canada can Cost almost the same price as this metabolomics testing.
Prices for some treating ME physicians in the US are upwards of 5 to 10K just for testing.
It would be interesting a ME Association put out the funds took a batch of qualified PR members blood and sent it to Naviaux lab and see if the results match the profile?
Prices for some treating ME physicians in the US are upwards of 5 to 10K just for testing.
It would be interesting a ME Association put out the funds took a batch of qualified PR members blood and sent it to Naviaux lab and see if the results match the profile?
ok, with trepidation...
I'm pretty sure that we all hope that the Navaiaux paper is a huge break-through and that, when the history of the discovery of the cause of CFS is written, Eric Gordon and the others working on metabolomic research at this early stage are recognised as heroes.
So, if we are identifying the issues in this thread, you can be sure that some who are part of the industry built around a psychogenic model of CFS and other illnesses will too.
I can also imagine rocking up to even an open-minded GP excitedly clutching the Naviaux paper saying 'this is the breakthrough!', only to have him come back saying 'well four of the authors are from a clinic that sells homeopathic remediesand the clinic is selling an expensive test promoted by the research' and then not bothering to read anything else I might bring.
And I can imagine friends or family who really don't know what to make of this illness googling and coming up with these issues.
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. And/or perhaps feel able to respond, because we have had people contribute information, with something like
Transparency allows truth to shine through. Obviously we shouldn't be nasty about things but I think airing concerns is an important function of the forum.
I'm pretty sure that we all hope that the Navaiaux paper is a huge break-through and that, when the history of the discovery of the cause of CFS is written, Eric Gordon and the others working on metabolomic research at this early stage are recognised as heroes.
So, if we are identifying the issues in this thread, you can be sure that some who are part of the industry built around a psychogenic model of CFS and other illnesses will too.
I can also imagine rocking up to even an open-minded GP excitedly clutching the Naviaux paper saying 'this is the breakthrough!', only to have him come back saying 'well four of the authors are from a clinic that sells homeopathic remediesand the clinic is selling an expensive test promoted by the research' and then not bothering to read anything else I might bring.
And I can imagine friends or family who really don't know what to make of this illness googling and coming up with these issues.
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. And/or perhaps feel able to respond, because we have had people contribute information, with something like
'well, many of Eric Gordon's patients say he and his clinic staff really care for patients and the accusation relating to the prescribing is just a result of him wanting to help alleviate his patient's pain. And the supplements sold aren't overpriced and it's a service to patients as the supplements can be hard to get hold of. And the actual cost of the testing is expensive and offering the test is a legitimate way to get funding for more research given the lack of government funding'.
And, anyway, the analysis was done by experienced researchers, not the clinic, and a number of other research groups are in the process of doing similar studies'.
And, anyway, the analysis was done by experienced researchers, not the clinic, and a number of other research groups are in the process of doing similar studies'.
Transparency allows truth to shine through. Obviously we shouldn't be nasty about things but I think airing concerns is an important function of the forum.
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If we don't manage to fund replication we will never get to wave any research in front of anybody.
We can't let fear of opposition from people touting psychogenic model stop us in our tracks.
We can't let fear of opposition from people touting psychogenic model stop us in our tracks.
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