Episode 12
Gulf War Illness / Syndrome with Dr. Beatrice Golomb

In Episode 12 Heather and Lee talk with Dr. Beatrice Golomb of the Golomb Research Group about Gulf War Illness, attitudes of which have been “one of the disgraces of modern medicine.” They discuss the multi-symptom-related health problems suffered by Gulf War Veterans. These health problems are likely a result of mitochondria damage and oxidative stress caused by chemical exposures and toxicities, including Pyridostigmine Bromide (PB), fluoroquinolones and nerve gases such as Sarin.

TRANSCRIPT

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Heather: Thank you for tuning in for our 12th “Know Risks” podcast, which is second in a series spotlighting drugs veterans were ordered to take for precautionary measures while serving in the military. Our prior podcast focused on the malaria drug Lariam and the heroic efforts of Andrew Marriott to seek acknowledgment and support for veterans damaged by Lariam, and accountability to those institutions and industries responsible for promoting and forcing its use.

Today, Dr. Beatrice Golomb joins us from the Golomb Research Group to discuss Gulf War Illness and the need for more research to address the ongoing suffering inflicting upon our veterans by the failure to acknowledge and validate chemical exposure-induced injuries. Dr. Golomb discusses the drug Cipro, which, it should be noted, that her research in severe and persistent multisystem injury from fluoroquinolones such as Cipro was responsible for much of the progress in seeking to limit the use of these harmful drugs. Dr. Golomb also discusses other preventative treatments and chemical agents the military were exposed to that potentially contributed to Gulf War Illness, and the struggle to secure research funding to assist veterans in identifying much-needed treatment options.

The attitude towards Gulf War veterans has been referred to as one of “the disgraces of modern medicine.” This is yet another disturbing example of treatment-induced harm that has been ignored and denied, despite victim complaints and overwhelming suffering, in this case on behalf of our veterans.

Links are provided at our website, knowrisks.org [see above], for those veterans who might consider working with Dr. Golomb in her research and search for treatments for Gulf War Illness. And as always, please like and subscribe to our Know Risks YouTube channel so we are able to continue these conversations about treatment-induced harms.

Lee: Awareness is power.

Heather: And it can save your life.

Lee: Welcome to our podcast, “Know Risks.”

Heather: I’m Heather.

Lee: And I’m Lee. We’re two moms, a lawyer and a nurse, who were brought together by a misfortune. Both our children were harmed by adverse drug reactions.

Heather: The purpose of this podcast is to educate people on the risk of any health treatments you put in or on your body.

Lee: We feel if we’d been properly informed and been our own experts, our children would not have been harmed.

Heather: In today’s world, with medicines being incentivized for profits, you need to educate yourself. Know the risk of health treatments and it can protect yourself and your loved ones from being harmed.

Beatrice Alexandra Golomb, M.D., Ph.D., is the director of the Golomb Research Group. She served as a primary care doctor for a panel of veterans patients for over 15 years. Dr. Golomb is professor of medicine at the University of California, San Diego School of Medicine. She received her Bachelor's of Science in physics, summa cum laude, from the University of Southern California at age 19. Dr. Golomb also has an M.D. and a Ph.D. in Biology from UC San Diego. Dr. Golomb's research interests include: the balance of treatment risks and benefits; research methods and interference from evidence; and the relation of oxidative stress in mitochondrial function; bioenergetics more generally, to health, behavior, illness, environmental and medication effects, nutrition, and aging. She is best known for her work on Gulf War Illness, statins, placebos, and chocolate. A number of her studies have been featured in national and international print, radio, and television media, from The New York Times, Wall Street Journal, and The Economist, to Jon Stewart's "Daily Show." Dr. Golomb is currently recruiting Gulf War veteran participants, and she is interested in hearing from you if you have had an adverse reaction to a statin drug, a fluoroquinolone, pesticide, vaccine, or electromagnetics. A link to Dr. Golomb's research group can be found at knowrisks.org.

Lee:  So today just welcome Dr. Beatrice Golomb.  We’re so honored to have you with us today and to be able to talk with you.  And, you know, I first sort of got connected with you when I read your article on the fluoroquinolone-induced, persistent, multisystem adverse effects, which was really relevant to, you know, my case with Charlie, but today would love to hear more about the Gulf War illness because my understanding that that also is a multisystem illness, you know, that you’ve done some research on.  And yeah, so welcome and thank you, and, you know, maybe we could just start by telling our listeners, you know, a description of the Gulf War illness, like what that is, what symptoms, and, you know, we’ll just kind of let you roll with it, if that’s OK.  

Dr. Golomb:  OK.  So in the 1990 to 1991 Persian Gulf conflict, the U.S. deployed about 700,000 troops; smaller numbers came from other nations, including England and Australia and Canada and Denmark and others, but the largest of those groups was 44,000 in England.  There was actually 150,000 from Saudi Arabia, but there’s really just no research that comes out of there to tell us.  And what we know is about a third of those that were deployed developed chronic, multi-symptom health problems that had a number of features that we thought were interesting.  One is that people developed multiple symptoms that varied from person to person, and these continued to develop after people returned from the Gulf, at elevated rates, and these were focused on fatigue, muscle, and brain domains of what are called postmitotic tissues, which means they’re mostly done dividing that have high energy demand.  The brain especially has very high energy demand; it’s about 2 percent of the body weight.  It uses half of the glucose for the whole body and about 20 to 25 percent of the oxygen, so it’s really heavily energy-demanding, and muscles are too.  And these features led us to hypothesize that mitochondria were involved, but I’m getting a little bit ahead of myself.  

So epidemiological studies were conducted and evidence showed that this was — you know, there were indeed elevated rates of these health problems.  There were pretty similar rates for people who were and were not deployed.  Those who had symptoms in one or two of a set of domains that included things like fatigue and pain and neurological, gastrointestinal, respiratory and sleep, but what was really striking was this radically greater number that had symptoms in three to six of those domains early on.  So what was really typical of the Gulf-deployed personnel was that they had more symptoms spanning more domains that were more severe than in comparative groups that were not deployed to that conflict.  And it wasn’t just the same as what happens in every war.  Every conflict has its own special set of challenges, and historically sometimes these include malnutrition and infectious disease and exposures of various different types.  But the Gulf War was notable for an unprecedented range of new, unique, and excessive environmental exposures.  And some examples of new exposures were depleted uranium was used to gird tanks and missiles for the first time, and that has both heavy metal and radioactive toxicity; permethrin, which is a pesticide, was used to (impregnate ?) the uniforms of personnel; the anthrax vaccine was deployed for the first time in military personnel in that conflict; botulinum (toxilade ?) vaccine was used really for the only time in that conflict; a drug called pyridostigmine bromide that was given as a nerve agent pretreatment pill was used so far really for the only time in the military for nerve agent pretreatment in that conflict.  There was very heavy exposure to pesticides, including toxic kinds like organophosphates and carbamates.  And also a number of people were exposed to nerve gas when we demolished a chemical munitions depot that had chemical munitions, and there were parties that had intelligence that there were chemical munitions there but that wasn’t passed to the people who undertook the demolition and so people weren’t protected from being exposed.  So the DOD estimates that up to a hundred thousand were exposed to low levels of chemical warfare agents, which are also organophosphates in the one episode, the Khamisiyah munitions depot demolition.  And the GAO, which has changed names but I think it was the General Accountability Office or something and now it’s the Government — I think it was the General Accounting Office and now it’s the Government Accountability Office, I believe.  It’s the research arm of Congress.  They put out a report affirming concerns of many veterans that there may have been other episodes, perhaps multiple other episodes, in which chemical warfare agent exposure occurred.  There are many times when chemical alarms went off and there were highly sensitive alarms, which means that they may go off for actual nerve agent but also for other things, and there were more specific alarms that were to be used if the more sensitive alarms went off but generally were not used.  So people were exposed in a number of other episodes, potentially, to low-level nerve gas.  

So this was a setting where many, many other exposures occurred.  For your fluoroquinoline-interested audience, it was also the case that a subset of people were exposed to Cipro, which was given both for the usual infectious-disease reasons and also there were unit-to-unit differences based on the sort of chemical and biological warfare experts in the unit and the medical personnel about decision making in relationship to protections, and so evidence suggests that Cipro was also used for some for biological warfare protection in the event of anthrax exposure, since it was known that anthrax had been weaponized by Saddam Hussein.  So multiple — 

Lee:  Is there any documentation or record — you know, somebody comes back and they think that they’ve had these symptoms — of which exposures each person may have been exposed to?  Like, is there any record of that?  

Dr. Golomb:  That’s an excellent question, and the answers that — especially for a couple of the exposures, like the pyridostigmine bromide, the nerve agent pretreatment pill that was given under an investigational new-drug authorization by the FDA, which basically stipulated that yeah, you can give it but you need to track who got it so that we can evaluate whether that’s related to problems.  But in the fog of war, that really didn’t happen, and even where — and similarly for the vaccines, anthrax and the botulinum (toxilade ?) vaccine, some people had records but many, many did not.  The mechanism for recording what exposures among the ones that we were responsible for giving — and of course, the other ones, there was less mechanism for recording in the first place.  But, for example, the anthrax and botulinum (toxilade ?) vaccines, some units didn’t record at all on grounds that somehow if the records were captured that that would give Saddam Hussein intelligence that we didn’t want him to have.  Others recorded it in so-called code, A vax and B vax — (laughs) — that very subtle code, and others just wrote it out as anthrax and botulinum (toxilade ?).  But then, even for where those were recorded, at the end of the war, when the computers were sent back stateside, most of them were just erased and then there was no systematic mechanism for retaining the records that had been generated.  So this has been a terrible problem.  There are some, you know, people where those records are available, but we have no way to know whether — you know, that’s probably not a representative sample of those who had records.  It’s pretty clear that people who had more exposures were more forward-deployed, et cetera, you know, have higher rates of problems.  And based on —

Lee:  Yeah, and one would assume that some of these veterans would — they would know, like, even if there’s no record, they would know some of the times that —

Dr. Golomb:  That is correct.

Lee:  At least with the vaccines and the medications they would know.  I don’t know if they would know —

Dr. Golomb:  And on top of that we actually have gene environment-interaction data that supports people’s testimony.  So for example, with the PB nerve agent pretreatment pill there’s a particular enzyme called butyrylcholinesterase — and I know these are fancy, multisyllabic terms — that’s involved in detoxifying that in the body and there are gene variants that are less good at detoxifying that.  And a study done by my good friend Lea Steele, whom I just talked to like two days ago — (laughs) — and actually I had recommended this kind of study back in the 1990s when I first wrote a report on PB for RAND.  I suggested that people who had these less favorable variants of butyrylcholinesterase and were exposed to PB might have especially high rates of illness.  And what Lea Steele found was that for people who had the PB and had the normal gene variant, they had about a threefold risk of illness.  Those who had the adverse gene variant without the PB had no elevated risk of illness, which is perfect because it means they weren’t predestined to become ill no matter what.  But those who had both the — one of the adverse gene variants for that enzyme and the PB had fortyfold elevated risk of illness.  And because they didn’t know their genetic type at the time they reported their health status, this provides very, very powerful evidence of a causal relationship between PB and Gulf War illness.  And similarly, recently Robert Haley, another of the longtime researchers in Gulf War illness, looked at variants of an enzyme called paraoxonase, or PON1, that’s involved in detoxifying organophosphates.  Now, the problem with organophosphates is that veterans were exposed to a lot of different ones and different variants of that enzyme are better at detoxifying different organophosphates.  So we know from the agricultural literature that if you know which organophosphate people were exposed to, then people who have the variant — (inaudible) — worse at detoxifying that organophosphate have higher rates of illness if they were exposed to organophosphates.  But what Haley did is he said, well, let’s look at the people who said they heard chemical alarms and look at whether the version of that enzyme that’s bad at detoxifying sarin, the nerve gas, if that confers significant increase in those individuals with — (inaudible).  And so again, those kinds of gene environment interaction data go very far to affirming people’s testimony about what they heard because there can’t really be a gene environment interaction unless the report of the environmental exposure was accurate at least on a group level.  Maybe not every single person is correct, but at a group level they are.

Heather:  For that — because it was so interesting to me reading about the PB because that — it’s kind of like a — is it like a pretreatment if there’s going to be exposure to some type of — like a nerve agent in warfare?  And you know, I was reading about it.  I know there was a whistleblower involved in that and, you know, I think, you know, we had talked; we also had a guest on our podcast, Andrew Marriott, who — different discussion, different drug, regarding actually treating, you know, malaria for troops; he was over in England and a host of issues that came with that for many of the men in service.  And it sounds like for that particular drug, the PB, there was also — I mean, is it common — I don’t know if you could speak to this; I know you’re in the research end.  But it appears that the troops in the Gulf War, they were ordered just to take this.  Is that correct?  I mean, was that much known about it?  Was this something new, or had this been used a lot, you know, prior to the Gulf War, the PB?

Dr. Golomb:  Yeah, so it had been used for a neuromuscular condition called myasthenia gravis, which is where there’s autoimmune attacking the acetylcholine receptors and so you want to raise the acetylcholine level to offset that and normalize the levels of acetylcholine activity at the muscle.  And so the claim had been that gee, since people with myasthenia gravis tolerate this, then surely these other people will tolerate it too.  And I actually wrote a report for RAND on  pyridostigmine bromide that actually was a so-called RAND bestseller — (laughs) — not that RAND bestseller means that much — (laughter) — but among the things I pointed out was that that is not an adequate justification.  That’s like saying that because since diabetics tolerate high levels of insulin that you can give insulin to normal people with impunity, and obviously you cannot.  In one case it is helping to normalize the activity of — you know, in the case of diabetes, you know, the glucose regulation, and in the case of PB, the acetylcholine regulation, and the other case it’s driving that biological chemical out of normal range.  So you’re bringing it toward  normal in the affected population and you’re pushing it away from normal in the other population.  So you cannot infer from toleration in one group that it will be tolerated in the other, on top of which, actually, if you look at the literature on PB use in patients with myasthenia gravis, it’s not that clear that people tolerate it that well.  And if you look at the older literature in the olden days, sinectomy (sp), removal of the sinus gland, was often performed and was reportedly often curative.  And after PB began being used, the older reports said it seemed to no longer be curative and that the PB itself seemed to cause its own myopathy that then, you know, persisted irrespective of the sinectomy (sp).  

Heather:  And in that context, I mean, it seems like in the initial, if you’re facing this particular disease and you look at a risk-benefit analysis of using this particular drug, it might make sense in terms of the side effects.  It doesn’t appear, in regard to the military, that the troops were even aware of potential risks with this drug, and I don’t know how accurate it is, but a lot of what I’ve read appeared to be that after exposure to the nerve agent, the drug could — because of timing issues and the life of the drug, the drug could even make it worse.

Dr. Golomb:  Right.  That was what my report is — the one that exposed.  My report pointed out that for every nerve agent, with the possible exception of one called soman, for which there had been no evidence — there had been no evidence that soman had been present on the battlefield.  For every other nerve agent, the actual expectation would be that PB would worsen both health consequences and mission completion, because like the nerve gas, it is also acting as an acetylcholinesterase inhibitor.  So  acetylcholine is that critical nerve signaling chemical that you hear about with Alzheimer’s disease; it’s involved in memory; it’s also the nerve-signaling chemical involved in muscle activity, and there’s an enzyme called acetylcholinesterase that breaks it down because you don’t want excess signaling by any chemical in the body either.  And then this chemical class — two chemical classes, actually — organophosphates like nerve gas and some pesticides, and carbamates like some other pesticides and PB, they’re all acetylcholinesterase inhibitors.  They prevent that enzyme from breaking down the acetylcholine and helping keep the levels at normal and in check, and that leads to excessive levels of acetylcholine.  So now you have both a nerve agent doing that and the PB doing that.  The assumption has been that because the PB does it, quote, “reversibly,” and some of the nerve agents do it, quote, “irreversibly,” that by reversibly binding to those sites in the body, it would prevent the irreversible binding of these other chemicals and thereby sort of protect them in the long term.  But of course, in the interim, you’ve gotten more of that acetylcholinesterase that’s prevented from doing its activity.  And because we give our military personnel also post-exposure treatments in the form of something called atropine, which blocks some of the effects of acetylcholine and also something called 2-PAM, or pralidoxime, that helps pull the nerve agent off the acetylcholinesterase, the evidence from animal studies suggest that PB in that setting is only worsening the impact, rather than improving it.  And the one nerve agent — and so there’s a phenomenon that they call aging where if the nerve agent isn’t pulled off within a certain period of time, it can undergo a chemical change that can lead that binding to be permanent.  But for most of the nerve agents, you’ve got a couple hours’ time window, so since all the military personnel have their post-exposure treatment pack with them, they’ve got plenty of time to deploy that.  The only one where that’s not true is soman, which has about a two-minute halftime for aging instead of hours, and so that’s the one where you can make an argument that there might be benefit.  It doesn’t necessarily mean that there is; it still might be the case that harm exceeds benefit, but that’s really the only one where that argument can be made. 

Heather:  But that particular nerve agent wasn’t even used in the Gulf War.  Isn’t that correct?

Dr. Golomb:  That’s correct.  

Heather:  So there was really no need to give these troops — 

Dr. Golomb:  Right.  Now, you know, I guess, you know, that wasn’t sort of the way — the thinking was, after my RAND report, the U.S. and, I understand, also Israel changed their military policy so that after that the order to use PB was supposedly only to be given if there was suspicions, particularly of soman on the battlefield, but before that the thinking had been that it would be beneficial irrespective of the nerve gas.

Lee:  They’ve made the change now, and have they done anything, like, in regards to the genetics?  Like, for example, wouldn’t it make sense to know who would be more likely to be harmed, like if they’ve got that variant?  

Dr. Golomb:  Well, I mean —

Lee:  Do they ever look at that?

Dr. Golomb:  So I guess — you know, I cannot speak for the military but, you know, I guess there’s a risk benefit and a cost benefit and since so far the order to use PB has not yet been given again, you know, I guess — 

Lee:  You don’t know.

Dr. Golomb:  If they had expended the money to do the genetic testing, you know — and the reality, unfortunately, is, you know, in the military the focus is not on the individual; it’s on mission completion.  And you know, it’s clearly desirable, even from the standpoint of mission completion, not to take out any of your service persons, you know, needlessly by exposing those who are particularly vulnerable to something or allowing them to be exposed.  But it isn’t like civilian life in terms of, you know, the focus on individual outcomes.  And it is, I think, an interesting set of questions and policy questions, you know, whether and how we can shift things to both help the military and help the individual soldier through certain kinds of individualized approaches.  And we’re very interested in helping push that frontier by seeking to identify factors not just even for a particular gene involved in detoxifying, you know, one particular agent but genetic profiles that may predispose people to all of these different chronic, multisymptom health problems, almost irrespective of what the exposure is so that there can be some judicious thinking about how personnel can be strategically placed to advantage military outcomes while protecting individuals.  If you lose the individual, that’s not helpful to the military either.

Lee:  Yeah, I mean, that makes sense, for sure, to do that.  

And how have these veterans fared?  I know that you’ve had some contact with some through your research.  Like, initially were they — was it recognized initially?  Were they labeled as something else?  I’ve heard stories that maybe it was called more like PTSD and it wasn’t recognized as like a toxicity.  And then how have they fared with their —

Dr. Golomb:  Well, I have to say that the attitude toward Gulf War veterans’ health problems is one of the disgraces —

Heather:  Yes.

Dr. Golomb:  — of modern medicine.  And there’s one veteran, Dave Wynette (sp), who wrote, you know, a really moving poem called, you know, “All in your Head,” where he describes how they came home from the Gulf War and initially they were treated as heroes because, you know, they’d had this four-day ground war with a decisive victory, and then when they began developing these health problems, you know, I heard one actually psychiatrist at my university say, oh, it’s compensation neurosis, and they were told it (wasn’t a lingering ?); they were told it was psychogenic.  You know, “it’s all in your head” was a frequent mantra, and I hate to say it, but the Department of Veterans Affairs fueled those attitudes by the things that they put out and they had required training that seemed to seek to diminish the credibility of the veterans’ reports of their health problems.  And those attitudes have persisted by, you know, physicians at many veterans’ hospitals to this day because there was never really any required training that overrode that original training.  And it didn’t matter when evidence increasingly came out showing yes, this is a toxic-exposure-induced health problem, and there are many objective markers that are abnormal in affected veterans.  They have, you know, impaired mitochondrial function; they have increased inflammation; they have depressed prostaglandins; they have, you know, altered malondialdehyde; they have increased autoantibodies; they have many, many, many, many objectively altered — you know, objective alterations in biological markers that show that this is a real illness that is not psychologically driven.  And there was a tremendous, I guess you could say, fight, both by the researchers and the veterans, to try to get the VA to redirect their efforts away from trying to claim it was all stress to even conducting research to look at other possibilities.  And ultimately, with the hard work of some incredible advocates, like Anthony Hardie who was on the Research Advisory Committee for Gulf War Veterans’ Illnesses with me for a long time and a number of other courageous veteran advocates, the Congress directed funding to go through the DOD, something called the Congressionally Directed Medical Research Program, and for the first time physicians that were not VA physicians and researchers that were not VA-affiliated could apply to engage in research.  And the fantastic thing about this CDMRP, this Congressionally Directed Medical Research Program, is they involve consumer advocates as relevancy reviewers on grant proposals, which I think should always happen —

Heather:  That’s wonderful.

Dr. Golomb:  — for medical research.  I think it should always be the case that the affected population is well-represented in not necessarily in judging the science but in deciding which science is relevant to them and which they care about.  And that I think really did a fantastic job in helping push the direction of research that was much more favorable toward helping to understand the problems of Gulf War veterans.  

And I will sadly say that every year the veterans have to go back and plead with Congress again to reallocate money for research to Gulf War illness, and for the first time ever last year they no longer got that awarded, and instead, Gulf War illness research was folded into broader Toxic Exposures Research Program that provides, you know, just a tiny fraction of the potential money to go for Gulf War illness.  And actually one of the veteran advocates told me that he looked at next year’s portfolio and they no longer, even within the Toxic Exposures Research Program, no longer even call out Gulf War illness separately for — you know, as one of the areas in which they’re interested.  So, you know, these poor people who are already compromised and, you know, trying to fight to get recognition for their health problems and get more research while they’re still around to potentially benefit from it, now, you know, there’s been a significant backslide in hopes for their —

Heather:  I mean, it’s just incredible to me, though, because just the research that you did with the PBs, I mean, how many lives did that save?  And I think one of the things that Lee and I are experiencing, as we started this podcast and getting responses just in general, across the board, about adverse effects, especially — you know, we have had guests on who had horrific reactions, and this affected both of our families, with the fluoroquinolones.  It just seems so hard to move any research on this forward, and it’s just kind of mind-boggling as to why that is and why it’s not a priority, especially when you’re dealing with the military, because all these — you know, any adverse effect from a drug is horrific, but these are people who stepped up to serve their countries, and here they’re suffering horribly.  And similar to, you know, what my son went through after having an adverse effect, so many times they just end up in the mental health system and put on numerous other psychotropic drugs because it’s labeled, you know, a psychiatric issue.  

Dr. Golomb:  And that has certainly happened with the veterans where the push by the VA was to label it as psychiatric and they came out with treatment recommendations that basically — (laughs) — that give them antidepressants —

Heather:  Right.

Dr. Golomb:  — based on zero evidence that that helps them.  And in fact, we conducted a treatments-tried survey of Gulf War veterans where we asked, you know, what are all the treatments that you’ve tried, and for many veterans they’ve tried over a hundred of them, you know, struggling to find something that will be helpful.  You know, we asked, of all the treatments, what was the most favorable; of all the treatments, what was the very worst of the ones that you tried?  And then we looked at the ratio of the number of people who reported that treatment was their very best versus the number of people who reported it was their very worst, to try to gauge, you know, how many people really benefit relative to the ones that have significant harm, and many of the antidepressants were in the very worst on that graph of the best-to-worst ratio.  Many of them were among the agents where, you know, more veterans reported that it was the worst thing that they had ever tried than reported that it was the best thing that they had ever tried.  So, you know, it was not based on any kind of randomized control trial evidence; it was not based on any reports from veterans, because our evidence shows that, you know, veterans’ experiences indicate that those are among the very most adverse of all treatments, but it was aligned with this push to make it psychiatric.  And I think that what we see is where drugs and chemicals are involved — and this is not specific to the military — you know, where there is a highly lucrative industry that has a lot of political clout and tentacles, there’s really not a will to understand adverse effects, and there is strategic placement of money by those lucrative industries in a fashion that seeks to discredit those who raise concerns about harms and to even discredit the sufferers, to blame the victims for their suffering by trying to characterize it as all in their head.  And we hear this from many fluoroquinolone-affected patients as well, that they’re told, oh, it’s all in your head, it’s all psychogenic.  

I had one fluoroquinolone-affected person who wrote to me after reading an essay I had written on psychogenic illness saying, oh, you know, thank you; I’m so glad that, you know, there are doctors — I don’t know if there are doctors; but there’s a doctor — (laughter) — that understands that this concept of psychogenic illness — it’s baseless.  There’s no — you know, it uses a completely different standard of evidence that people who say it’s all in your head say there’s — you know, there’s no proof that an organic cause led to your problem.  And of course, they don’t ever look for proof.  So for organic causes, absent of proof is construed as proof of absence, but for a psychogenic cause, suggestion equals proof.  They don’t demand any evidence that other people with whatever the similar, quote, “psychogenic,” unquote, factor — whatever that even means, which changes from person to person and time to time according to what’s convenient for them — there’s no demand that other people have similar health problems; there’s no demand that there be a known mechanism for this alleged psychogenic thing, whatever that even means; there’s no demand that there be a test for it, much less a demand that that person have shown that test to be positive.  The standard of evidence for them is for a physiological cause absence of proof is proof of absence, having not looked for proof, whereas for a psychogenic cause, suggestion equals proof.  

And actually, that’s how I ended up getting involved in the Gulf War illness work in the first place.  When I was what’s called a Robert Wood Johnson clinical scholar at UCLA, the head of the grant health grant program approached me and mentioned that the Department of Defense was going to be commissioning them to do a series of studies on the relation of exposures to outcomes and Gulf War illness and did I want to be involved?  And I jumped at the opportunity because I had seen two reports that had come out by the Presidential Advisory Committee on Gulf War veterans’ illnesses and also what was then called the Institute of Medicine and is now called the National Academy of Medicine, and both had more or less said they had not looked carefully at evidence, they excluded animal evidence, and for toxic exposures, you can’t do a randomized trial to see if it’s toxic in humans. That would obviously be grossly unethical.  So the only way you’d get high-quality evidence of causality for adverse health effects is through animal studies.  And then, you know, what they do is they say, well, we’re going to exclude animal studies because they’re animal studies, and gee, there’s no high-quality evidence to show there’s harm.  Yeah, that’s because you’re not even allowed to do the kinds of studies that you would deem to be high-quality.  So by excluding animal studies, those kinds of decisions, you know, they predetermine what the outcome of these reports are going to be, so the sort of conclusions were something along the lines of gee, we don’t find proof that it’s organic, but gee, stress can cause almost everything; therefore, it must be stress — again, without any requirement that people who have had stress in other settings develop similar problems — they don’t; without any requirement that it’s the ones that had more stress who are more ill, and in fact, the data in Gulf War illness show that in every study that adjusts for other exposures, stress is not an independent predictor of Gulf War illness.  It falls out.  It is true that the people who were forward-deployed have more illness; they have more of many of the different exposures so they may have also had more stress.  But, you know, as an example, one study that looked to see which, quote, “stressors,” unquote, were significant, gee, it turned out to be all the ones that were related to acetylcholinesterase inhibitors — (laughs) — the, quote, “stress” of hearing chemical (alarms ?) — (laughs) — and having pesticides and taking — (inaudible).  So essentially they recast as stressors chemical exposure; those were the only ones that were significant predictors of illness.  So stress isn’t a significant independent predictor, whereas chemical exposures are.   Heather:  I was just going to say, though, with the stress, you know, and the mental health, they come up with some underlying trauma in this incidence — you know, it’s the stress.  I think people can identify that as a layperson, nonmilitary, going into the military would create a stressful situation, where something like PTSD would be prevalent, so that’s, like, a bit easier, you know, for — 

Dr. Golomb:  Right, so PTSD —

Heather:  — to kind of grasp.

Dr. Golomb:  Yeah, so PTSD clearly also occurs — you know, in Gulf War veterans, those especially who were exposed to certain kinds of combat stressors, so they’re not exempt from risk of also having PTSD, but PTSD is a different and distinct condition, and the way that I sort of characterize some of the main military health conditions are — PTSD is where there is stress injury.  TBI, or traumatic brain injury, is where there is mechanical injury, and Gulf War illness is where there’s chemical injury.  So that’s sort of my way of thinking of those major military-exposure classes.  

Heather:  Do you think the — well, I mean, it’s kind of the white elephant in the room and it’s just, you know, an opinion, but looking at it and after hearing other stories, especially Andrew Marriott’s story that he shared with us, it almost seems like it’s kind of — of course, this is just an opinion from learning about all this — but a way to avoid any type of accountability and responsibility for the illnesses on behalf of, you know, those responsible for our military members, because if it is something that’s more psychological or psychiatric in nature, that’s kind of expected from, you know, being in a warzone, whereas if it’s caused by an agent that they in fact — that our government, you know, dispersed and ordered military members to take, that, you know — I mean, it just seems like in a lot of ways this comes down to accountability in terms of claims and costs that could come out of then having to address those issues.  And I just wonder if that’s why research is not — a lot of research is not being done because it could open the floodgates in that respect.

Dr. Golomb:  So my position on that is a little bit different, and let me start by saying I have a conflict of interest because my Gulf War illness work has been funded by the Department of Defense and they’ve been — the CDMRP, which, again, has Gulf War veteran advocates on the relevancy committee, which — that’s just been fantastic, and they’ve been really great to work with.  What’s been interesting to me is that it’s been more the VA that’s been obstructionist in this than the DOD.  The DOD is not monolithic, I should say.  It doesn’t mean that everybody in the DOD is necessarily great on this issue, but the reality is that, in my opinion and the opinion of many other Gulf War veteran researchers, the VA has kind of remained intransigently stuck in the view that it’s all stress and all in people’s head, whereas the DOD is the one that has primarily exposed the fact that — you know, in the research that they’ve funded — that chemicals are involved.  I’ve heard the claim at the VA that it must all be about benefits, and I find that claim not to be credible.  The evidence in favor of that claim is that the head of benefits at the VA — an email from her to an Institute of Medicine committee was leaked in which she said, oh, no, no, don’t, you know, change your claim that it should be called Gulf War illness because if you call it that then people will think it’s service-connected and they’ll demand more benefits, which makes it sound like it’s all about benefits, but if it were really all about benefits, then they would be pushing against all the different claims, and they very selectively push against claims for Gulf War illness.  I believe the denial rate — and you can look this up — was on the order of 86 percent for Gulf War illness, which was tons of percentage points higher than for any other service-connected condition.  There was legislation passed that said yes, it should be service-connected, except recently there’s a new also toxic condition, burn pits, which also share that very high denial rate.  So it seems to be selectively chemical — acknowledgement of chemical exposure-induced injury that there is pressure against.  And it seems to me, as somebody that saw veterans as a physician at the VA, that they would not — you know, they would deny Gulf War illness, but they practically were encouraging veterans to seek benefits with PTSD.  So it wasn’t about the money; it was about — (laughs) — not claiming that you have chemical illness but claiming you have stress-related illness.  And both sides of the political aisle in Congress are usually willing to allocate more money for veterans’ things if there’s, you know, an appearance of need.  So the pure money angle just has never made sense to me, and, you know, my hypothesis is that there’s, you know, what I call — (inaudible) — laws is that if something doesn’t make sense, if it doesn’t seem to be, you know, supported by evidence and it doesn’t seem to be in the interest of the constituency of a particular entity when they make a decision, there’s usually some kind of transfer of money — (laughs) —

Heather:  Exactly.  (Laughs.)

Dr. Golomb:  — at a high level — (laughs) — perhaps between somebody who is a decision maker, you know, at the VA and, you know, chemical company or something like that.  That’s the explanation that would make the most sense. 

Heather:  Or industry, yeah.

Lee:  What I’m wondering is, like, just coming from the background of the fluoroquinolone injury and dealing with a lot of that population, is — and I would assume it’s the same with these war veterans — is acknowledging the cause, regardless of the benefit and the money, is very validating, but it’s also really important to help them get treatment, because the treatment of, you know, stress-induced symptoms versus something that is this toxicity, I would imagine is — well, it is quite different, and treating with the wrong things could be even more dangerous and cause more side effects.  So I think less — you know, even if it’s not about the benefits, it’s just about being acknowledged, and hopefully, then, seeking treatments that would maybe benefit them.  If there’s such a thing, maybe you can talk about that.

And I’d also — another question is, do you find that these people that have already had this kind of like a toxicity exposure are then more predisposed to future toxicities and reactions?

Dr. Golomb:  So those are a set of questions — and I may have you, like, go back and ask them — (laughs) — one at a time —

Lee:  Yeah, of course.  Sorry.  (Laughs.)

Dr. Golomb:  Let me start with your comment about how just acknowledging that the exposure is relevant is important.  And having spoken with many, many veterans, I couldn’t agree with you more.  We’ve had veterans tell us, you know, people that were in the Green Berets, that were Special Forces exposed to who knows what kinds of horrific things, that their greatest psychological wounds are not from anything they experienced in war but how they were treated by physicians when they came stateside — 

Heather:  Yes.

Dr. Golomb:  — that the very fact that here they served their country honorably, they put their lives on the line, and now when they come back with symptoms, they’re being treated like scum, like they’re making it up, like they’re disassembling, like they’re malingering, like it’s, you know, all in their head.  That’s deeply distressing to them.  And failure to acknowledge by many physicians based on, you know, presumably ignorance by those physicians, many physicians will, you know, tell them, you know, it cannot be related to your Gulf War service and, you know, they discount the impact of the symptoms, they discount the severity, and they discount the possibility that there could be a Gulf-exposure relationship, even though there’s an abundance of evidence that shows that it is.  And we’ve had — we actually are in the middle of doing a survey right now of Gulf War veterans on the physician attitudes they’ve experienced and that was motivated by comments that we had by veterans before which indicated that those adverse attitudes by physicians have very serious implications, including loss of trust by the patient in the physician and the health care system, which may lead them not to come back, even for needed care for other problems.  So the impact of those adverse attitudes extends even beyond the condition per se.  

So first I want to say that you make a very, very important point, that just acknowledgement, you know, of the cause is important — of the potential cause — is important both for validating the veterans’ experience and it’s dishonoring them to dismiss their own experience with their own body, and it’s dishonoring to these, you know, veterans, again, who nobly and valorously served their country and, you know, put their lives on the line.  It is — to them it suggests that somehow they’re responsible for their — essentially the implication  is that they’re whiny complainers and that their problems aren’t real.  Their problems are very, very real.  And Gulf War veterans, I should mention, have higher rates of a number of other health problems as well.  I mentioned they have higher rates of autoantibodies; they have higher rates of a number of different autoantibodies — brain autoantibodies and peripheral autoantibodies.  They have higher rates of — in the first 10 years after the Gulf they had higher rates of Lou Gehrig’s disease; three separate studies showed that, this wasting — this, you know, progressive wasting muscle condition.  They have higher rates of hypertension.  They have higher rates of heart disease.  They have higher rates of infection.  So their bodies are very affected by the set of chemical exposures in a way that drives symptoms, like fatigue and cognitive impairment and, you know, muscle pain and muscle weakness, that affects their everyday function, and that also affects their likelihood of having these adverse hard outcomes.  

And then you also asked, are they more vulnerable to other exposures later?  And the answer is that, if you listen to veterans’ testimony, many of them will say that after that initial major chemical exposure they had a stepped progression where they may have another significant chemical exposure and that will make them worse again.  This is not necessarily something that you consistently hear across all veterans, but it is definitely something that we’ve heard from many veterans.  And we are really interested in this phenomenon.  How is it that some exposures amplify your likelihood of having problems with other exposures?  And we actually published one paper on that for adverse effects to one class of exposure based on other exposures, and we have two other papers that we’ve drafted.  It’s very hard to figure out, you know, how to find a home.  The medical publishing system, I will say, is broken, and if you’re publishing something of a different kind than people usually publish, it’s often quite hard to find a place that’s interested in even, like, sending it out for peer review.  But we do have, you know, papers or manuscripts that we’ve drafted that show that certain exposure types, like pesticides and (synfuels ?) and radiation exposure are tied to greater likelihood of adverse effects to subsequent exposures across broad swaths of classes.  And this really makes sense, if you think about it, because — you know, exposures that damage mitochondria, it turns out that for many or most drugs or chemicals — no matter what their supposed specific mechanism of action is, much of their toxicity is not from that mechanism but is actually mediated by mitochondrial impairment and oxidative stress.  So if you’ve primed the mitochondria by already injuring them, then people are going to have more problems with those later exposure types, and that’s what our evidence is beginning to suggest, both within the Gulf War and then more limited evidence, you know, from after the Gulf War.  And this also fits with data, by the way, on multiple chemical sensitivity, which we looked at.  Gulf War veterans who — specifically those who were exposed to pesticides have twelvefold elevated odds of having multiple chemical sensitivity.  There’s a Japanese study that showed that patients with multiple chemical sensitivity, you know, there’s significantly greater likelihood that they have an adverse variant of the main mitochondrial antioxidant, superoxide dismutase 2.  And we just — we haven’t published this, but we just looked at this in our Gulf War veteran genetic sample and found the same thing there, that this adverse variant — the so-called SOD2 A16V — (laughs) — where there’s a substitution of alanine for valine at position 16 on that chain of amino acids that make up that enzyme, that that adverse variant, that’s less good at serving as an antioxidant in the mitochondria.  The veterans that had that adverse variant were also more likely to have developed multiple chemical sensitivity.  So multiple chemical sensitivity is another condition that is often scoffed at.  You know, “gee, I don’t have problems when I’m exposed to, you know, perfumes or” — (laughs) — “car exhaust or gasoline or, you know, low-level pesticides, so if you’re complaining, your complaints can’t be real.”  And that’s just sort of the underlying theme by people who dismiss these health problems — because I don’t experience it, you can’t; your problems can’t be real.  But there’s — you know, there is evidence that these are mediated by, again — you know, the focus of our lab is mitochondria and oxidative stress and their intertwined relationship and how, you know, toxic exposures often, you know, mediate their problems through those intertwined mechanisms.  And just as you say, yeah, exposure to certain toxins seems to make people more vulnerable to a range of other toxins.  So there are so-called overlap conditions — chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity — each of them are more common in people who have any of those other problems, and this makes sense because there’s evidence of shared mechanisms involving, you know, energetic impairment, mitochondrial impairment, et cetera.  And specifically in the case of irritable bowel syndrome, there’s a study that was conducted using hospital databases showing that drug adverse effects were significantly more common in people who had irritable bowel syndrome than in people who didn’t.  So again, it goes with this idea that there are these underlying adverse, you know, mechanisms like mitochondrial impairment that make people more vulnerable to having problems with other agents.  

Lee:  Which is so crucial in the diagnosis again, in recognizing, because then that would alert people that they are going to be more susceptible.  I mean, I would assume that there’s a little bit of a genetic component that people are more susceptible as well?

Dr. Golomb:  Right.  Like I said about the SOD2 genetic factor — so there’s both the genes that are involved in detoxifying the specific exposure, and then there are the genes that are involved in protecting against the shared mechanisms that transcend the exposure.  And I think — this is also getting toward your other question about what implications does this have for treatment,  and so it is the case that for many of these conditions, these individuals — and veterans tell us this as well — they have higher rates of adverse effects to a lot of different medications than — or, you know, they report adverse experiences with many different medications in a way that healthy people who have not had these exposures do not equally do, or at least not as high a fraction of them do.  And so you’re 100 percent right that this has implications for how you may want to treat these people.  We did a small, randomized, double-blind placebo-controlled treatment of CoQ10, which is a supplement that supports mitochondrial function and antioxidation and that did significantly benefit symptoms and function in veterans with Gulf War illness, and we’re ramping up right now to do a larger replication study, so if there are Gulf War veterans out there — (laughs) — who might be interested —

Heather:  We’ll post that —

Dr. Golomb:  (Laughs.)  This one is being done, by the way, in hopes of getting regulatory approval; if it proves similarly favorable, this one is, you know, dotting the i’s and crossing the t’s to have it hopefully be FDA-approved as a treatment for Gulf War illness so that veterans, many of whom now take CoQ10 because they find that it helps them, so that they can get that, you know, paid for by the VA so that they can get the treatment they need because of their military experience actually covered by their medical care.

Lee:  If somebody wants to be involved in some of the amazing research or studies that you’re doing, is it best to go on — find you on the website, or how do they link up?

Dr. Golomb:  Yeah, they can email me at bgolomb@ucc.edu.  Email is not always answered the same day.  (Laughs.)  I believe we have a Golomb Research Group email I think at gmail.com, I believe.  (Laughs.)  I should remember this.

Lee:  We can put these all on our website with your — people can find it on our website at knowrisks.org, and we’ll have it, you know, on the screen here for people as well.  But that’s great, so if they can try and at least find out —

Dr. Golomb:  Yeah.  There are two other studies right now; the other one that we’re ramping up to do is a larger genetics study which we’re really excited about, looking both at the mitochondrial genetics and the nuclear genetics, and this time we’re hoping to look at many different pathways in that, you know, genetic sort of network that we think — we think what’s going on, you know, starts with a hub of mitochondrial impairment and oxidative stress, and then that, in turn, causes what’s called a — (inaudible) — which triggers the inflammation and coagulation activation, and it also triggers the autoimmunity, and we think that a lot of the different stages in those processes, that people who have adverse variants, that, you know, multiple different genes will contribute to the likelihood of illness, and for all those people who say, “well, how come this person didn’t become ill and that person did?  Their health problems can’t really be real,” we think this will help to account for both differences in vulnerability and also differences in the symptom profile from veteran to veteran.  And then we still have this ongoing, you know, physician, you know, experience study, provider experience, that really seeks to capture the good as well as the bad experiences, although I have to say that from looking — (laughs) — at some of the surveys I’ve had come in so far, some of the veterans say, I haven’t had any good experience.  (Laughs.)

Lee:  That’s a shame, isn’t it?

Dr. Golomb:  It is.  

Lee:  Those will be on your website as well on how people can get involved?

Dr. Golomb:  Yes.  

Lee:  Yeah.  I think a lot people that have been harmed or a loved one, you know, they — that’s really important.  The research is so important and people to be involved in.  You know, hopefully that’s going to — that’s what makes a difference, really.  

Dr. Golomb:  Yes.  Yeah, I hope so.  I mean, you know, it does make us sort of feel good that when we, you know, have screened people for a different study, we found that about 30 percent of the veterans that were calling in were taking CoQ10, which is great and will be a challenge for our new study — (laughs) — because we have to have people who can be off CoQ10 to participate in the study.  You know, hopefully they’ll be randomized with two-thirds likelihood of getting Q10 in the first place, and then everybody will be on Q10 for the second phase so they’ll all have a chance of getting active treatment.  But that’s great.  I mean, it makes us feel happy that the previous study we did led to treatment that many veterans find benefit from.

Lee:  Yeah, that’s incredible.  

You know what?  We have just been so honored to be able to talk with you today, and I’m just, you know, looking at the time and we probably have several more podcasts we’d like to do and topics we’d like to discuss with you because — 

Heather:  We’re not quite done, I know!  (Laughs.)  

It’s important too, though, I think, you know, if we can highlight Dr. Golomb’s website and her research group because that is just really making a difference to so many people — veterans.  I know when — I think you were one of the first people I spoke with when my son passed away regarding the fluoroquinolones.  And to go back to that piece on acknowledgment:  That was just so important to validate what he believed had harmed him, and to hear it from someone of your caliber, you know, it was — it’s just important, it’s so important, and also your perspective on this research and really involving those harmed.  I mean, it almost sounds like, especially with the Gulf War victims, it’s a partnership, you know, of seeing what’s working with them and —

Dr. Golomb:  Yes.  And I agree with you.  I think, really, you know, all research of this kind should very much involve the affected parties.  And there really isn’t a will to study harms of lucrative products.  There’s probably not a — (laughs) — practically anything, but I don’t know how to change that.  I mean, you know, obviously there are many, you know, products that have wonderful effects on many individuals, and the companies themselves that make those products are happy to study the benefits, and you would think that federal money, taxpayer money, would then disproportionately go to the side that industry will not fund, which is the harm side, but instead, you know, because of the power of money, there’s such pressure on those federal granting agencies against funding the work that is needed to allow people to be protected.  And you know, it’s not that any of us are anti-industry or anti-whatever; we just, you know — it’d be wonderful if these drugs are great for some group of people, for them to continue to be used.  And honestly, it’s possible that if there had been a will early on to look at the risk-benefit — you know, including the risk side of the equation, that we could have had a better idea of who is harmed, including by fluoroquinolones, and, you know, that could even ultimately help the industry that makes those by identifying individuals who might be able to receive them safely.  But there is not a will to do that.  And then —

Lee:  I mean, I think it comes down to — like, our whole premise with our podcast is just to, you know, to be aware and to always weigh the risk and benefit.  And like you said, you know, it’s not like everything doesn’t have a benefit; it’s just you have to look at the risks and the benefit, and in a lot of cases, that could be individualized.

Dr. Golomb:  Very much so. 

Lee:  You know, it’s not just across the map certain people genetically might be more predisposed, in which case it’s a higher risk.  We just have to look at all that.  And you know, you’ve just been one of the amazing researchers that you’re still — you know, hopefully — I really hope you do get more funding to do — you know, looking more at this, because it’s really, really important.

Heather:  Not only more funding, just more of an awareness.  And I think that’s what we’re trying to do in our small way, but, you know, you mentioned you have manuscripts just sitting there.  I mean, that is such important information, and it’s almost like the industry and, you know, pharmaceuticals — it’s almost like it has its own agency to kind of shut out — you know, when we — those groups that want to bring up anything that might — I don’t, you know, want to use the word negative, but, you know, every medicine’s not right for everyone.  And you would think knowing that would be the utmost priority so you don’t have all these casualties, you know, like my son and Lee’s daughter, you know? 

Dr. Golomb:  Right.

Heather:  And I wanted to ask you the question; you answer it:  What do you do?  I mean, how do you — you know, I don’t know what you do, but I think in our own small way we’re trying to do something by just having these discussions, and we appreciate you so much for, you know, spending time with us today and all you do in your research; it’s just incredible.

Dr. Golomb:  I think what you’re doing is, you know, desperately important, you know, raising awareness again, you know, just as sort of we were saying it’s important to have affected individuals involved in decisions about research, it’s important to hear from affected individuals.  And, you know, as you know, you know, pharmaceutical companies are big sources — I don’t know how this works in different countries, but they’re big sources of advertising for television news in the United States, and there’s very entrenched involvement, you know, with pharmaceutical and many of the mainstream media, at least in this country and, as I understand, in many other countries as well.  And I think it was in one of Sharyl Attkisson’s books, and she was a CBS reporter for many years before breaking off and doing her own thing.  She said that she’s even spoken with reporters in mainstream media outlets that say their bosses told them no adverse stories about drugs.  So they’re, you know, often directly told, you know, don’t bite the hand that feeds us.  (Laughs.)  And the hand that is primarily feeding them, you know, is the source of things like advertising revenue or, in some cases, for another of the things that we’re interested in studying:  adverse effects of ownership of many of the media outlets as well.

Heather:  Well, I hope and I pray that there’s a way to raise that awareness without having it impact the result of that attitude and that type of ignoring these type of stories, because the result is, you know, what happened in my family, you know, just devastating, and the result is sickness and death, and unnecessarily.  It’s treatment-induced because they’re not getting the proper treatment.  And you know, I just hope there’s way that we can engage people; hopefully people will listen and listen and hear you and just get more awareness about this topic because there’s just got to be a way to raise awareness without having it impact you, you know?   I think right now — and I think Lee would agree with me — right now we kind of sing to the choir.  We’re getting so many people, overwhelmed with responses, but it’s all people who’ve been harmed, and I think — you know, how do we engage those who have not yet to at least acknowledge them, you know?  I guess that’s —

Dr. Golomb:  Well, you know, I guess it’s an important start to bring together the people that have been affected because they’re necessarily the ones that are going to care more if they or their family have been affected, and they’re probably going to have to be the parties that are the agents of change.

Heather:  Yes.

Lee:  Yeah, I agree.  I think if people come together and tell their stories and, you know, I think even just the podcasts that we’ve done so far, it gives people part of that acknowledgment where maybe they haven’t had it before, and then, you know, they come together and be more of a voice and, you know, step by step we can hopefully make a change.

Yeah, so thank you again so much, Dr. Golomb. You know, this has just been a pleasure and an honor and we look forward to talking with you more on different topics; we have so many that we want to talk to you about.  

Dr. Golomb:  Great.

Heather:  We could probably keep you here all night but — (laughs) —