OFA DM DNA TEST: Fact or Fiction? - Page 3

Breeders who do not test are not necessarily being irresponsible some would rather rely on personal knowledge gathered over decades of not using dogs known for coming from lines that produce DM. There are breeders who don't have a problem with DM. I decided to educate myself further on the subject of DM when viewing the websites of inferior breeders and noticing a trend among them of using DM testing in their marketing. One website had articles on the importance of DM testing and created the impression that she was among the premier breeders because her dogs had tested clear, her stud did not even have HD certification. Remembering Marjorie's posts i did Google searches for days on the subject and found no "cons" except for Marjorie's research. OFA's website is very lacking with any real information and the links they have to the University of Missouri give very little real information either, they definitely do not tell you the cons. I don't view the GSDCA website often as I don't view them as a positive influence to the breed but I will go and view the seminar. Those pushing others to buy puppies from breeders who test clear for DM never tell the person they are giving advise to there are any "cons" to the testing. I would love to dismiss Marjorie as wrong but even though she delivers her information with emotion I don't see people arguing against her logic. I do see people selling their dogs as being DM clear using emotion to scare potential buyers. To declare a dog "clear" of DM without informing potential buyers of the " cons" is irresponsible.

A crock IN YOUR OPINION, Marj. The jury is still out as far as I'm concerned, but I will still err on the side of caution and will insist on a DM test on any dog I buy in the future. To me it just makes good sense.  I've read some uncomplimentary things about  both Clemmons and Coates, their methods and how they reported their findings to the GSD world. I recently read an article that talks about why the GSDCA rejected further financial support of Clemmons and went with Coates. I won't post the link here, but if anyone wants to read it, you can find t with a google search - "DM DNA german shepherd".  I'm sure Marj can copy you on Clemmon's research so there is a fair representation of both doctors' work. There always are 2 sides to every story and the truth generally lies somewhere in the middle.

I guess overstating the value of the DNA DM test by some breeders is equal  to those breeders who tout their dogs as the greatest ever based on the accomplishments of the second and third degree relatives - this will be a great litter, the famous Killer v Sheepherder is the great grand sire. He was a world class dog so these are world class puppies. Most breeders I know simply list the DM DNA results as one more health test they have done with their breeding stock.

Not knowing if the DM test is reliable is frustrating for everyone. We may still be debating that next year at this time. Personally I think is  great that Marj questions Coates, it keeps the bar higher for her and her team and they might not become too complacent and assume that their research is 100% correct. I imagine Dr. Clemmons is aware of the controversy, so that  keeps him looking for a better test, etc. The race to the top so to speak. We all profit from that I think.

No, DR C cannot keep looking for a better dna test for DM- all the funding has gone to Dr Coates, which is why the DM DNA Test for OUR breed no longer exists :( All the money has been funneled to Dr Coates. DR C had to cut his staff, he lost his grad students who processed the tests and did research with him. The money for the dna test goes elsewhere- a cash cow, but not to our breed or the type of DM our breed gets. The bottom line is not the disagreement between DR Coates annd Dr Clemmons- the difference is in the facts and the 180 degree polar opposite of the results of diagnostic testing. The 2  could not be further apart and I cannot fathom how people cannot understand the huge abyss between the diagnostic test results.  Its like calling black white, and white black. Just because someone changes the name of the color doesnt make it so... Politics is the reason behind the gsdca went with Dr Coates. Poliitics has always been  a driving force in the gsdca,and probably always will be. If not, as mentioned in another post, the top well known breeders who abused their dogs would have been in jail.

I watched the presentation by Dr. Coates, or most of it until I had a problem with it loading at the end. I looked at the Powerpoint PDF for the end.

I will say Marjorie, you are right, that the actual event was a bit slow at the beginning, what with that well-meaning, but torturous introduction. Then the rather loud cell phones went ringing. Once all that was past and Dr. Coates began the presentation, it was easier to concentrate. And I did form some thoughts.
 

I can see that the donor supporters were mentioned and clearly the presentation sought to tie in their funders, ALS among them, to what they were seeing in the slides. It was made clear there were huge percentage differences between these two diseases. What Coates appeared to be interested in was that small percentage that was similar. There was discussion on defining what is DM, and careful acknowledgement that there are differences still being debated on classifying conditions and symptoms. There was acknowledgement that their testing did not predict accurately 100%, mentioning I believe, two dogs of different breeds who defied the test results by coming down with the disease. The conclusion Coates seemed to offer was that it is another aspect that needs more researching of the recessive gene mutations being found. (I got the feeling the differences seen in the symptoms between breeds would be a combination of certain genes mutations?)

Perhaps​ not the recognition you would hope for Dr. Clemmons, whom you credit with so much more, true, I can see that lapse as political. It could be a loyalty/funding thing to not mention his name, as the Universities do not seem to be looking for collaboration with each other. 

Also, Dr. Coates did mention they have since developed a second, updated SOD2(?) test, and have learned to detect more differences that can, or will be useful for furthering an accurate understanding of the disease. Could this be acknowledgement to Dr. Clemmons' research just by admitting his findings that proved a difference, are in fact being honored? And now I wonder, did the Univ. of Florida stop the direct donation link for his research? I did get the impression that was working well for his research at one time? 

There is more in the presentation that was geared specifically towards how a breeder might want to understand and use this type of information in a pro-active way. According to what I understood, a carrier dog with no symptoms presenting can show signs of nerve axiom changes when seen under a microscope. That was presented as a slide fact. How that matters is up to the individual breeders to decide. 

(This review is just my two cents.)
 

 

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Sidenote: I still didn't see the early onset symptoms I experienced with my dog being acknowledged in any definition. And I don't know why. Everything else in that presentation, I lived through, just in an accelerated way. I am sure it had to have progressed to the third stage, at tongue paralysis. I remember he would not take broth. We put him down the next day. So, I keep thinking there has to be more to this. There just has to be. It will be a happy day for all when this disease is conquered.
 

One can donate to Dr Clemmons DM research by doing the following:
 https://www.uff.ufl.edu/onlinegiving/FundDetail.asp?FundCode=003429  and noting “For Dr. Roger Clemmons’ DM Research” in the “comments” section of the page. The lowest amount than can be donated is $10.

No, the Universities do not work together as their  is such a disparity between diagnostic test results and beliefs about the disease, bee. There was also the problem with an officer of  the AKCCHF who admittedly lifted work from Dr C's site, without his permission, and gave a grant to someone who studied under him, at the University he was affiliated with, with Dr C's work as a research model. . Dr C used to put up the research he was working on, on his websites, so people could know the very latest information. but after that incident, he no longer  left his *cards* out in the open for people to see .)

the larynx will become paralyzed in the last stages of the GSDM, unlike ALS, where it can start in the larynx, esophagus or anywhere in the body. By the time the disease moves past the front legs, the paralysis keeps moving forward and it will become hard for the dog to swallow or remain sternal. This is the stage where seizures begin, aspiration pneumonia becomes a very real possibility and renal failure is all too common :(

Its too bad that politics will always rule the day, but human nature is human nature, and greed, the quest for fame, and the cutthroat competition only  serves to undercut what it should be about- helping- the dogs! Why do they always get lost in the shuffle...I feel sad for the dogs and the people, like myself, who would move mountains just to get another day, with their dogs. Living through DM two times is nothing short of traumatizing- at least for me... I will never recover, either physically, or emotionally. I have so many stress cracks and fractures in my body from lifting Missie T and getting her in and out of her cart. I would happily take more, if only she were here with me... Now there is no Missie T, just the fractures, the stress cracks, and the memories. I, personally, could never live through DM again. Casey James will be my last GSD :(  I cannot ever go there, again, thus a terrible sadness that will always pervade my life..POlitics is a very destructive force.

 

I was encouraged that the presentation did not gloss over discrepancies. There is reason to think that the molecular genetic findings behind Dr. Coates findings are at odds with the theories of Dr. Clemmons; that his theory supposes it is an autoimmune disease and therefore not related to human ALS. During Dr. Coates presentation, it was also explained that one can not expect symptoms to mirror each other across species. But, more to Dr. Clemmon's burden, I understand, there still seems to be a difficulty in finding a like type of presentation for a case of support for his theories, even a current progress report. How are donors through Univ. of FL, for instance, updated periodically on his DM research progress? (I personally want some type of accountability as a donor, and that could be what creates an obstacle, especially with the larger grantors. Yes, I know I have harped on this before, but it is a big obstacle.) This seems to be a recurring theme that never gets satisfied? However, I would agree that a scientist putting out his in-progress research on a website does not seem prudent. 

I probably will never have the answer for what took my dog, it is just too late for that. I know your losses make it hard for you to move past, what became of those life altering months caring for MissyT was for you. I wondered even, if Dr. Clemmons was continuing on in other directions, perhaps? I found a link to this, while checking out the Univ. of Florida site for information.

http://www.ncbi.nlm.nih.gov/pubmed/22783835?dopt=Abstract

 

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In conclusion, I see this as fact: There is a test. There is enough faith in her science that, Dr. Coates has also earned grants in drug therapy research too, that ties in with ALS. http://mizzouadvantage.missouri.edu/news/drug-therapy-may-bridge-dm-and-als/ 

The updated test is reliable as a guide that indicates proof of molecular changes in the spinal cords. It is not 100% perfect for predicting which dogs become symptomatic, and more research is needed. If breeders do test for this gene they are also helping to continue their funding needed to keep exploring for the answers to fill in the missing the blanks.

This is my .02 cents only. Any misused scientific terms, I apologize, I tried to keep them straight. 
 

DR C used to have a slide show, online, Bee, in relation to DM. It walked one through the entire process.  I dont know what happened to it when he changed his site and the host of his site.  I will try to see if I can find it and post the link. Family is in from out of town, and of course, they all came in with bad colds and bronchitis which, naturally, wiht my great resistance, I caught within a few days. The big sick is here. I am going ot try to get that link for you or have him put it up again.

I understand you wanting to know where the money goes, but you also need to understand that the people that lifted his work did so with no consequences or reprimands, event though they worked directly for the AKCCHF as officers. I was on the phone in a conference call with the officers of the AKCCHF and officers of the GSDCA, as I was serving on the Health Committee of the GSDCA, at the time. When the Officer of the AKCCHF blurted out that anyone would have taken DR C's work and run with it, you could have heard a pin drop on Mars, we were all so thunderstruck!   They steal his work and diss him- so why would he share? What is to stop them from donating $10 and getting access to what he is working on.. he was doing some amazing work  when Missie T was at end stage DM, with end stage DM dogs. He tried something with Missie T and 6 official DM dx GSDS. The treatment program had no negative side effects. Missie T had been down for a month, and after being down, before this experimental treatment, she actually was able to get up and go get a drink of water, by herself. I am not telling you she walked well, or got up easily, but she did get up and walk from one room to another, as did other dogs in the study. Funding ran out, study ended :(

 

The thing is, however his funding was ended from any one source, I think you need to get past that. If there is proven validity as you claim, then he should be pursuing those sources most likely to support his work. I noticed his most recent credits are in the holistic areas, for instance: acupuncture. An idea would be, to maybe begin looking in that direction for supportive funders. You should expect though, that even they will surely want a financial accounting and progress reports. That is common and expected. If you are going to keep using your energies to promote his theories, then I hope you use your energies wisely. 

For your average person on the street funder who wants to stop this disease because of an experience like yours or mine, I think an adaptive presentation for his case of support is an obvious way to reach them. And something that can be shared. 

Now, I also wondered, because I just can not remember.... but I think you did not for some reason.?... did you get a necropsy done on MissyT? If you did, wouldn't it be interesting as a fact to compare a slide from her spine to what was shown in Dr. Coates presentation of the nerve axiom, to compare the OFA DM test result vs. Dr. C's test... which you must have done? If so, I imagine the slide could be digitized and shared? What would it show? I am quite curious!

Otherwise, you end up having the same problem I do, that even though I am convinced of one thing, I have no proof for my allegations. 

No, I did not have a necropsy done on Missie T- I just could not do it..Emotionally, that would have done me in.  I had her privately cremated and she was back home with me in 2 days...She did have a positive Flash Test, however, 2 times.

You certainly had a very difficult year. I sympathize with that, I do. (Did you save your koi from the storm? I can't remember that either!) Unfortunately, it was a missed opportunity as far as data, I think. 

Oh well. What really matters is understanding a more "positive" route is better suited for your goals to support Dr. C.  IMHO

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You know, sometimes we can want something so bad, our brains can trick us into believing something what we want to be true. I remember being tested for deafness at 12 y.o.  It turns out I have a detatched nerve and just can not hear a darn thing in one ear. However, during the testing, I swore I heard the "beeep" and raised my finger at the sound. The DR kind of gave a smirk and then told me, the test was over, they weren't playing any more sounds.