Q: So, when you began on this, what's this story look like? How much of a problem is it? A: When I got to the department in early 1994 issues were just coming to sort of public visibility and consciousness. And there really wasn't much going on in the department. The important thing from my perspective was that we get started where you ought to start, which was with the patients. And to begin to try medically to begin to understand what was going on and so we began a clinical evaluation program working with the VA and putting together what turned out to be, I think, a rather sophisticated individual clinical work up of current and former military personnel who had symptoms.
				Q: Talk about it as a public health problem. What was the phenomenon? A: In 1994. Let's talk about it in 1994. In many ways it was a classical public health problem. Because there was a scientific dilemma, a medical dilemma. Here were people with symptoms who had all been in the same place at the same time, roughly, and with symptoms that didn't lend themselves to a ready explanation, and so you had the medical dilemma. And then of course, like all public health problems, there was a very large political dimension to it, which I'm sure that you have been talking about with other people that you've interviewed. The political dimension and the tension between the political dimension and the medical dimension was evident even then back in 1994 when we began. Our approach was to start with the medical, start with the patients and try, through that, to understand what was going on and then convey that to people. As always, the first part is easier than the second part. Q: Clearly, even in 1994, this wasn't a very straight forward public health problem because unlike, say, Legionnaires' Disease, or AIDS where you have some really acute endpoint. A: No you didn't. Even by 1994 there had been attempts to define what a case was, to define what a symptom or a syndrome represented, and that was very unclear. There was no endpoint either in time or in the clinical dimensions. But more public health problems begin that way than begin with a sharply defined endpoint. I mean, you used the example of Legionnaires' Disease, but we could also take the example of AIDS, and if you look at the early months and even years of the AIDS epidemic there was great confusion and uncertainty not only about what was going on, but what were you seeing that you could related to what was going on. I think that's not infrequent. Q: In 1994, was it clear that we were not talking about things that kill people, or was everything still on the table. Had you already excluded things like Lou Gehrig's disease and arthritis or was it still an open question? A: We, from the medical point of view, we just were going in with all bets off and we were going to begin asking people to come forward who had symptoms or who felt they were ill, and to see what that data showed us. There's a weakness in that of course, in that you are selecting in a sense, the population that you're going to try to understand, and you don't have what's called a representative sample. You get a sample of the people who believe they're ill, who are ill, who have symptoms, and you have to work with that. But it was the only place that I could see that we could begin, because there really was no evidence. Q: You do this initially, with this group, this selected sample, to try to work up a case definition. Is that your objective? A: Yes, to try and see, I think the way I like to put it, to see if we could find any signposts or markers. If, for example, I don't mean to trivialize this, but if for example we found that all the people who came forward with symptoms A, B, and C, had red hair, you would look at that as a signpost. Or if all the people, to be more realistic, who came forward with A, B, and C, had other things that tied them together, in time, or space, or the kinds of jobs they did in the military, or the particular symptoms that they had. Then that would lead you further and further down a path of trying to create a case definition. Q: So is this a registry? A: Well it really is a registry. We went and asked all the people who had symptoms, who felt they were ill, to come in, to put themselves on a registry and to come forward for a medical examination. We worked up the specifics of a sort of staged medical evaluation, in stages of sophistication and complexity, with the Veterans Administration and with a committee in the Institute of Medicine, National Academy of Sciences Committee overseeing our work, and began to use that as a kind of a template to try and understand what was there. Q: How many evaluations did you do? A: By the end of two years we had done 20,000 evaluations. That's a lot of people. I think probably this was a larger comprehensive medical evaluation than has ever been done in any of these kinds of instances where a new or mysterious or unknown combination of symptoms pops up. Remember, at that time people were still talking about Mystery Illness. Q: What did you find? Did you find a syndrome? A: Not really. I think there's been a lot of word play about whether there's a syndrome or not. What we found was the following: We found that in looking at 20,000 people in detail very very carefully from a medical point of view, we found that there was no single unifying hypothesis that could explain the symptoms of large numbers of people. There was no magic bullet. There was no mystery illness. There was no Gulf War illness. What there was was several groups of people in this 20,000 patient sample. The largest group were people who had illnesses that were readily understood by our current diagnostic framework. In some cases they were illnesses that people would have had whether they went to the Gulf or not. In some cases they were illnesses or injuries that were a result of being in the Gulf. If you have a chronic arthritis of the hip from an injury that you got jumping off the mechanized vehicle, that's related to your service in the Gulf very directly. So that was the largest group. Readily definable illnesses. Then there was a small group, a much smaller group, who had symptoms that really couldn't be understood or put into a current diagnostic framework. Q: What kind of symptoms? A: They were symptoms that were combinations of physical and psychological symptoms. The mportant things about this group really were two. One, that's the group that you really want to look at most carefully to see if there isn't something that you don't understand at present, but that might become clear as a cause of these symptoms in the future. Secondly, it's important to understand that that group of patients is not unique to this sample of people who served in the military in the Gulf. If you look at any population of patients, any cross section of patients, you will find a very significant number, 4, 5, 8, 10 percent, sometimes more, who don't have readily explainable diagnoses. If you look at what walks in and out of a doctor's office or a university clinic or an HMO every day, actually a very large number of patients have symptoms, headaches, fatigue, depression, muscle soreness, joint pains, etc, that don't fit a pattern of a clear disease diagnosis. There were approximately 700,000 Americans who served in the Gulf. Depending on which figures you use about registries and medical evaluations, perhaps 60,000 people, now, five or more years later, feel themselves ill with a number of symptoms. A very diverse -- the variation in symptoms among the people in our medical evaluation was very very large. That's not an unexpected kind of number. If you look at a small or medium sized American city on any given day and said to over half a million people, How many of you in the last four or five years have been ill for some period of time, or haven't felt well, or have had symptoms of any kind? You would have a number of probably much larger proportion. Probably much larger than that. So I think from the medical scientific point of view, that's not the issue. It's not surprising that four or five years after the event you'd have 40,000 or 50,000 out of 700,000 who are "ill." The important thing from the public health and the medical point of view is, What are they ill with? What symptoms do they have? Can you cluster those symptoms into groups that leads you to look for a single cause, or a number of causes that are behind those symptoms? What we found very clearly, and what's been validated by every scientific group that's looked at this is the answer is that you can't. You can't take the 20,000 patients in our clinical sample and say that a significant number of them, a large number of them have symptoms that cluster in a way that are recognizable as a medical illness or that are likely to relate to a single cause, this or that. Now, might there be in that group of 20,000 very small clusters of patients? Might there be small numbers of people, 20, 30 people who have a series of symptoms that we have not yet been smart enough to cluster into some recognizable entity? There might. But as time goes on and as the weight of the medical evidence gets stronger and stronger about the variation in the symptoms, the non-pointedness of the symptoms to a particular diagnosis, that likelihood gets less and less. Q: Talk about the age of the people in this war. This was -- a lot of reservists served in this war. Was this a different profile to previous wars? A: Well there were many reservists. There were many more women in the theater than in previous conflicts. But I think too much has been made of that issue. Earlier in the discussions, 1994, 1995, there were some suggested that the mystery illness was all in reservists and not in active duty military. That didn't turn out to be true when we looked at the data. There really was nothing special about reservists versus active duty, men versus women, officers versus enlisted, ethnicity or race, there really wasn't any marker there that would point to this. Q: So with the outcome side, you were not able to find anything unique. Is it still worthwhile looking at the other end of the equation, the risk factors and the exposure? Is that going to be helpful? A: Well it is, but of course you're working more or less blind. What we did with the clinical evaluation is not the way you would go about a scientific research project. We self selected in a sense our group of people. We used them, as I've said before to try and, one, take care of them. Our first priority was to take care of their illnesses and their symptoms. But at the same time we tried in our diagnostic and therapeutic work to see if we got these signposts that would take us further. Now at the same time, while you're working at that end, if there are likely, possible, risk factors, I think it's perfectly appropriate to work from the other end at the same time and see if you can make some kind of combination fit of groups of people with symptoms and possible risk factors. That's a pragmatic way to approach this, but I think it's also an appropriate one. But I think what you can't do, and what is unfortunately a great tendency, particularly in people who don't pay too much attention to the data and the science, you can't just because you believe something might be connected, you can't make an assumption and a declaration that it is connected. Q: There was a whole number of possible risk factors in this environment that people were interested in discussing. A: Depleted uranium. Cocktails of vaccines. Infectious agents. Tropical diseases. The protective medication against chemical attack. Chemical weapons, biological weapons. There's a whole laundry list. All of which are legitimate issues to question. Don't get me wrong in this. It would be really inappropriate to say, No. Nobody should raise that. Of course they should be raised, but when you raise a causal issue, I think you have a responsibility to have some actual basis, to have some data, to have some evidence, to have some logical connection, not just kind of make it up because it is somehow appealing, either politically or in a media sense, or whatever. And what was all too often the case was it was sort of the headline value of a possible cause rather than any sort of reasonable, logical factual basis for its existence. Q: So there was a lot of interest in pyridostigmine bromide wasn't there? A: Sure. Portrayed as an experimental drug, using soldiers as guinea pigs, da. da. da. Let me say first, I wasn't around when that decision was made to distribute it and have the troops use it under conditions of the threat of chemical attack. But I totally support and approve that decision and I would like to think that I would have the wisdom and the courage to make the same decision in those circumstances in the future if I was in that position. I mean, we knew, this is all speaking of hindsight, and I'm speaking really from hearsay and information, because I wasn't in the Department at that time. But we knew they had chemical weapons. We knew there was a good chance that he would use chemical weapons. It's now common knowledge that we went so far as to have Secretary Baker have a talk, get a message to him to that extent, about what the consequences of his use of chemical and biological warfare. So we knew this was a very real threat to our people. We knew that we had a medication which could be of significant importance in preventing a catastrophe in terms of casualties if troops unprotected were subjected to chemical agents. We had this medication, which has been used for 30 years, in very significant numbers of people, but for another purpose. Peritostigmine is an effective medication against a disease, not a terribly rare disease, but a somewhat rare disease called myasthenia gravis, and it has been used, by the way, at 10 times the dose that you use it to prevent again chemical warfare agents, in tens of thousands of people with very little, no really overriding side effects. It's a valuable and important medication. The way our drug approval system works, and there's good reason for this, the fact that's it's approved for treatment of myasthenia gravis does not make it approved for protection against nerve agents. Well, how are you going to do the research necessary to prove, in the clinical trial sense, that peritostigmine is safe and effective against -- you can't do that research. You can't do that human research. So the drug has not been licensed for that purpose. But there was every reason to protect our people with peritostigmine. There was every good medical judgment reason to not be deterred in using that drug, and the Department went to the FDA and got approval to use it. So, it was the correct decision in my view. I think after the fact it's proven to be the correct decision, and also there is no firm or even really suggestive reason to think, after the fact, that peritostigmine might be responsible for Gulf War illnesses. So the whole thing is really smoke. The whole thing is really smoke and it's been used sometimes in a very cynical way and more often than that, particularly by members of Congress, in a kind of irresponsible way. Oh, there's a lot of people with symptoms. Oh, here's this peritostigmine which, you know, etc., is not approved for this use. Bang. Let's put them together, and there's the headline. That's bad medicine. I think in the long run it's bad politics. But that's not my side of the street. Q: There was also claims that the vaccines might be responsible. Talk about that. A: Well, again, people were picking up -- particularly in the media and in the Congress, people were picking anything that they thought might sound to them as if it would be interesting to see if they were causally connected with illness, and because it was possible, therefore it was real. And when one by one these things were shown not to be, by any reasonable assumption, connected, then you would hear people say this kind of idiocy, Well, it is wasn't A, and it wasn't B, how do you know it wasn't the combination of A and B? And if wasn't the combination of A and B, how do you know if you added C into it that the combination of A, B, and C, couldn't been it. That's not a way to proceed to either be helpful to the people who were suffering, or to enlighten the public. But that's what was done. Of course, you know, one of the major issues in the whole thing is that we, we speaking collectively, for reasons that are unfortunate but understandable, shied away from looking at the greatest risk factor of all. The greatest risk factor of all were the stresses of combat and of the environment that we placed people into. As the medical data and the clinical data began to unroll from 1994 onward, it became apparent, and should not have been a surprise, and should not be unexpected, that many many people who had physical symptoms also had psychological symptoms. And all of us know from our own lives how interconnected these two areas are and how one influences the other and how difficult it is to tease the psychological components from the physical components. And that of course was really what much of this was about. It is regrettable that we were, collectively again as a society, and still are, unable to look at this squarely in the eye and understand it for what it is. Q: From your point of view, after you have done, you've begun this investigation, you've set up these registries and so forth, what kind of problem did you face communicating these findings? How well did those conclusions go down with the general public? A: People have a great resistance to hearing what they don't want to hear. There are, and were, in this issue, individuals and groups that were determined to find a mystery illness, determined that there would be a mystery illness, particularly one that would show the malfeasance of the government. And it was not an acceptable message, not a palatable message to some members of the media, to some members of the veterans groups, and regrettably, to some members of the Congress, to accept what the information, what the scientific data showed, which is that there was a wide variety of symptoms, there was no single or unique mystery illness, and most importantly, that stress, that psychological stresses were very intimately and importantly related to the physical symptoms. This was a disagreeable message and people did not want to hear it. So that's number one. Number two, this is a very complex area. It's not easy to reduce it to sound bites, particularly when you have the conclusions and the findings that we've been talking about. And so, even in the best of worlds it's a difficult complex message to convey, even if it weren't unpalatable. Number three, there is a great reluctance in our society to accepting that among the risks and hazards and damage that can be done to people when they serve their country in a combat or armed conflict situation, is the psychological damage. Again, it's something that we all know intuitively. All of us in my age group remember the aftermath of WWII and the Korean War, and the Vietnam conflict and the psychological casualties of those wars. But we don't like to talk about it. We don't like to admit it to ourselves in the open. In a way I think that's the greatest tragedy of this whole Gulf War illness issues, is that if we really had a chance, perhaps still have a chance as the longer run of this plays out is to understand and speak honestly and prepare ourselves for this mind/body combination of symptoms that always follows an armed conflict. And if we could do that honestly we could be better prepared, we could prepare our people better before they go, and the society would be more understanding and more honest in dealing with the problem afterwards. Q: Speaking as a public health person, is it crucial when you give a public health message to give the truth? A: Absolutely. My deepest conviction in medicine and public health is that your job is to present the facts honestly and fully to the best of your ability to understand them, and to communicate them, and also to present with them the uncertainty that always surrounds them. There is a kind of mistaken perception in society, it goes along with our deep wish for certainty, that the answers are squared off and sandpapered at the edges. Life is not that way, and medicine is not that way. So there is always uncertainty and your responsibility as a public health official, or as an individual physician, is to present to your community or to your patients, the best information that you have, fully, and honestly, and completely. And at the same time convey what uncertainties there are around that information. Again, that's not always a very palatable message, either in the community sense in public health or in the individual sense in clinical medicine. But if you don't do that, what are you doing? How can you act as a physician, as a healer, or as a person responsible for the health of a community unless you convey the information fully and honestly.

 
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