Montoya's talk at Mill Valley, 9/14/2011

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Dr. Montoya

Discussion at Mill Valley presentation of Voices from the Shadows, 9/14/2011

First, I thought that the film was powerful, and it should be, I think, part of the medical curriculum in medical schools in the United States, in that we often forget why we went into medicine. We didn’t go into medicine for fame or money. We went into medicine for the eternal trying to decrease suffering in people. And that’s what actually got me to join the challenge of trying to understand what CFS was, seeing patients who were showing up in the offices at Stanford with stories like Tina—suffering, their lives completely come to a stall. They had no reason to either make up an illness. They had more to lose. We had patients that were even venture capitalists, company founders, avid students, gifted students—so there would be no reason for them—they would be losing more sick than being out there.

So, I was head of this, and my specialty always has been Infectious Diseases so I think there is a major possibility that infection could be the trigger. In fact, we are working with the possibility also that it could be also the perfect waiter of infection along the ____ cascade but also can keep triggering these fluctuating illnesses. And I think that the film shows how medical arrogance combined with narrow vision knowledge can be so toxic, and can bring more suffering to a group of patients who are already suffering.

So what we have set up at Stanford--and Stanford has this history of pioneering research and being open-minded—is created a group, and the medical school has allowed that-- to attempt to solve the central pathogenesis that we call the main reason—what is the main reason the disease occurs, and we think that this is solvable within a lifetime. We want to make it within a ten-year period, and ideally within a five-year period, with the idea that we can understand what is wrong in the patient’s main illness, to immediately take a ____ on how to help the patients.

So there is no question that the disease is real and the historical points that were brought out about how it was transferred from being a neurological disease to being a psychiatric illness has hurt the field, has hurt the patients, and I see that over and over again. There are two crucial moments when I see a patient at Stanford to treat CFS. The first is when we tell the patient “You have a real disease,” and there is a moment where the patient breaks down. We have been fortunate to have a small group of patients that fitted certain criteria where when we intervened then, with certain antiviruses and certain medications, they have had dramatic recoveries. It has not worked for everybody. It does not work for everybody, but there have been situations where that has happened, temporally associated with these interventions.

So this has served as an impetus to go deeper into the work and we will not rest until we get the solution or a possible solution for everybody. My dream is to one day be able to either put the brick that will one day serve for others to solve it, or that we can significantly unveil that mystery that is not allowing us to see what the disease is, and that a formal medical apology comes from our medical associations to the patients because they were the ones who paid the price for our ignorance. The physicians are supposed to help the patients, not to fight them.

And the situation might get worse. With this idea of medicine becoming a “fast food” type of model, it’s going to get much worse. Physicians have been given less time to talk to patients, etc., etc.

So I think that what will make the big difference is to keep focus on certain groups. And there is, I think, a historical opportunity about to occur. There are other schools that are interested. At Stanford we were able to engage groups at Harvard, Cornell, Columbia—major centers that when they looked at, the same that David has been promulgating, the story is the same that we, in medicine, face. You know, we have the support of the Dean, but there are physicians at Stanford who I would love to see us failing, for sure, and do an “I told you so,” kind of a statement. But I think there is a historical momentum happening, occurring. We have now conversations that are ongoing with the CDC every week, with the NIH, and if it can be done, like it was done with the AIDS, that private funding, activism.

If this disease receives the attention, the amount of money that is given to other diseases, we will have the solution within a 5-year period.

The same way that patients get ostracized, the physicians who work on that area get ostracized. And so, the trick that I use at Stanford…Before I got into CFS, I had a very comfortable career and everything, my publications were known, etc., and then in order to still be seen at Stanford with the same validity that I have seen, I have kept my other life, in the other illnesses, so I work double. That is the only way you are going to be seen… You know, my mentor, who is a world-famous person, clearly told me that I would be committing academic suicide if I went into CFS. For example,if I see patients with toxoplasmosis—I have some leadership in that area—I have residents, I have many students, fellows. If I see a CFS patient, totally alone. Nobody else. This is not the time to talk about our whole pathogenesis model, but we have to go to a whole proposal, a whole hypothesis, that fits with what the disease is. I think that the disease is—has been whispering all the clues. The clues to solve CFS are right there. It’s just a matter of stepping back, putting the pieces together, and then do it in a humble, candid, but rigorous way. But the clues are there.

So we have now three manuscripts that have been sent for publication, including one for the double-blind, placebo-controlled trial. And if I send an article on toxoplasmosis, ninety-five percent of the time the journal says we take it from you and see if we are going to publish it. With the same name, the same person sends a CFS paper, a hundred percent of the first journal says “No, we are not going to take it.” A hundred percent. And I have to send it to an outside journal, go through the whole process. Tina’s family gave us funds to put together 25 of the people who are working on this, and this has been fantastic. That was two years ago. And now we have an ongoing conference call with the CDC and NIH . There was another family in New York City that put funds that has allowed us too. So we are talking about it. We are shaping ideas. So it is happening, through funding that we did not have before.