Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as chemical intolerance and toxicant induced loss of tolerance or TILT. 

The illness affects millions around the world. And the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more can spark a cascade of debilitating symptoms. Dismissed by healthcare providers, employers, and even loved ones, many feel misunderstood, isolated, and invisible. 

This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

In this episode, I'm speaking with Beatrice Golomb. Dr. Golomb is a professor of medicine at the University of California, San Diego School of Medicine. She served as a primary care doctor for a panel of veteran patients for over 15 years. Dr. Golomb specializes in Gulf War Illness and other conditions. In our conversation, we talk about why thousands of veterans developed Gulf War Illness and MCS, how they were dismissed by healthcare workers, and how their conditions have impacted their lives.

Aaron Goodman: Thank you again for joining me. What motivates you to do this research and to keep going with it? 

[00:02:27] Beatrice G.: I think I've always had an instinct of wanting to, you know, when people have a problem and they're not believed and they feel like the scientific and medical community are not being their allies. Those are the settings where, for whatever reason, I feel like I'm motivated to want to help out.
And often it seems like it's because of sloppy and inaccurate thinking and reasoning. Like in Gulf War Illness, there were a couple of reports that came out from the Presidential Advisory Committee and the Institute of Medicine. They basically said, there's not really proof that it's chemicals, but stress can do a lot of bad things, so it must be stress.

So like the disparity in the standard of evidence where they basically didn't even look for the evidence because they excluded the animal studies that could actually have controlled data and then introduce stress without any standards for stress, but I wanted to be sure that the literature was looked at in an honest way and I felt that it hadn't been and I felt for those veterans who were reporting health problems and being disbelieved. 

[00:03:30] Aaron Goodman: Do you want to briefly explain what Gulf War Illness is for folks who may not be familiar with it?

[00:03:37] Beatrice G.: Sure. I characterize military related injuries into three common categories. The psychological wounds are called Post Traumatic Stress Disorder. Mechanical injury to the brain is called traumatic brain injury. And chemical injury is called Gulf War Illness. And of course, chemical injury doesn't just have to be for veterans that were in the Gulf War.

But of the approximately 700,000 U.S. troops that were deployed to the Gulf theater of operations in 1990 to 1991, about a third of them developed chronic multi-symptom health problems with an emphasis on things like fatigue, cognitive problems, musculoskeletal problems, gastrointestinal, respiratory, dermatological.
And there's a good amount of literature now that ties them to the environmental exposures that were experienced. These included oil well fire smoke, sarin, and cyclostatin, nerve gas, permethrin; impregnated uniforms were used. It was the first use of depleted uranium, which has both heavy metal and radioactive toxicity and that was used to strengthen tanks so they would be protected against munitions and to strengthen munitions so that they could better penetrate tanks.
It also involved anthrax vaccines used for the first time at that time and so on. And so these people were very heavily exposed and study after study showed a shared pattern of this chronic multi symptom illness that we now call Gulf War Illness. And the evidence has shown that this health complex has not faded in the 30 plus years since then. And indeed, many are now developing more problems as aging related health conditions overlay upon this. 

[00:05:22] Aaron Goodman: What kind of impact did that have among their lives and careers? 

[00:05:27] Beatrice G.: It's often been devastating. Many of them are sufficiently affected that they were unable to work. Some have found treatments that have helped them to get over that, but the illness is accompanied by increased risk of many other health problems, everything from hypertension and heart disease to infection risk to neurodegenerative disease risk. And early on, there was an increased risk of ALS that was shown in three separate studies. That's Lou Gehrig's disease, a muscle wasting condition. And certainly I saw cases of young onset Parkinsons. I think it's likely that Parkinsons was related to that exposure theater for some people as well, the veterans have had to cope with both the legacy of having really their productive economic years robbed from them by this chronic illness and then concurrently suffering from adverse attitudes in much of the healthcare community.

Some of them have told us that their most significant psychic scars are from the way they were treated after they came back and presented to physicians suffering and being told that they were making it up or it was all in their head. Or they weren't really ill. 

[00:06:33] Aaron Goodman: I think a lot of listeners will relate and have experienced the same sort of medical dismissal and misdiagnosis. When it comes to U.S. soldiers who developed Gulf War Illness, what do you know about the ratio of women versus men? And I ask because in the wider population, more women develop chemical intolerance. 

[00:06:56] Beatrice G.: Yes, female Gulf War veterans do have higher rates of illness than male Gulf War veterans. We have smaller body size and a higher surface area to volume ratio is one sort of obvious thing.

We have less avid detoxification of some substances. We don't detoxify chemicals as well. And another factor in that is that we actually have less blood volume than men have. And blood volume is important for helping to transport chemicals away or perfusing tissues and allowing them to have the cell energy that chemicals may adversely affect, et cetera.

We've recently begun studying the people affected by the train derailment and toxin release in the train in East Palestine, Ohio, and there again, it's disproportionately women that are affected. And some of them are telling us that they're dismissed because it's more women than men reporting health problems there as well.

[00:07:49] Aaron Goodman: How many Gulf War veterans, as you understand, developed chemical intolerance or Multiple Chemical Sensitivity after coming back from conflict?

[00:08:02] Beatrice G.: Well, I don't know the exact number, but there are multiple studies that have shown that the rates of Multiple Chemical Sensitivity are materially higher in Gulf War veterans than they are in control groups. And those with Gulf War Illness who represent the vulnerable subset of that group presumably have rates that are higher still. I'm trying to think back on a study we did. I'm going to guess somewhere in the range of one sixth of the Gulf War veterans in one sample that we had were chemically sensitive. It might have actually been a little bit higher than that, but on that order. And we did find in one study that we published last year, that since veterans have told us for many years that now many drugs and things that they used to be fine with, they don't tolerate.

[00:08:50] Aaron Goodman: Just refresh my memory, please. Rough number of people impacted by Gulf War Illness and of that total, about how many deal with long term and lasting chemical intolerance?

[00:09:04] Beatrice G.: You know, on the order of 250,000 of the 700,000 U.S. personnel that were deployed are dealing with Gulf War Illness, but that number is a little difficult to pin down because as time has passed and people have gotten older, there are a lot more that have these symptoms and how much of that would have happened anyway because of aging and how much is Gulf War Illness is just a little bit tricky to say. I would just say a good chunk of those that were deployed and that have the health problems do report chemical sensitivity as part of their, as part of their challenges. 

[00:09:43] Aaron Goodman: I'm really interested in asking you about the dismissal and misdiagnosis, because again, I think a lot of people listening with chemical intolerance, Multiple Chemical Sensitivity, as we know experience that. So how common was that for folks who came back from the Gulf War? And what were health care providers saying to them? 

[00:10:03] Beatrice G.: Yeah, so it was extraordinarily common. There's one Gulf War veteran, David Winnett, who wrote a poem entitled, “All in Your Head” that's very poignant about their experience of coming back and initially being treated as heroes.

And then, having this horrible experience, you develop these toxic wounds as a result of your honorable service to your country that affected them for the rest of their lives. They were treated awfully. I had a physician at my institution who told me that it was called compensation neurosis. Other people use the terms malingering, psychogenic.

There were articles like one by a guy named Michael Fumento called “The Myth of Gulf War Illness” that actually tried to turn around compassion and say, our veterans basically deserve better than for us to believe that there's this fictional thing called Gulf War Illness. That was what Gulf War veterans were dealing with.
[00:10:56] Aaron Goodman: That misdiagnosis and dismissal, what kind of impact did that have on returning veterans? Did it impact their abilities to serve? To get healthcare, leave from work and financial compensation and housing, all of those things that many people... 

[00:11:13] Beatrice G.: Let's separate out the question of financial compensation and get to that separately and remind me if I lose my thread and don't get back to that on my own.

That's actually one of the things that we're looking at in our study is not just what were the attitudes that you experienced, but how do these relate to impact? Because we had heard from some veterans that they didn't trust their physician if their physician had that attitude. These physicians, including at VA health care centers where they're supposed to be knowledgeable about veterans and veteran care, but they don't usually know anything about Gulf War Illness.

Yes. Right. And, and veterans would say, like, they didn't trust their other recommendations, they wouldn't return for health care. The consequences of disbelieving people and not following up on their complaints can be severe or life threatening. And now, in terms of your question about compensation, some veterans, some amazing veterans, and I mentioned, like, Anthony Hardy from Veterans of Common Sense, who I think is a truly remarkable human being, campaigned tirelessly for years, working on the hill for two purposes, two distinct purposes at different times. One was to try to get allowance for disability for veterans who developed these chronic multi-symptom health problems in the Gulf, and legislation was actually passed to allow that. But interestingly, the denial rate by the VA for those claims was very low, was well over 80 percent. So even after legislation was passed, specifically for the purpose of offering care for these veterans, the vast majority of those who applied to receive disability weightings for their goal for illness were denied that in a fashion that was entirely disproportionate from other health conditions.

Veterans were practically pushed into saying, well, if you say it's stress. And in your head and ask for PTSD, we'll be happy to give you that. So they were very happy to accept claims that it was stress. And incidentally, the evidence says it's not stress. This is not a stress related condition. It's a chemical related condition. But people were happy to pay if they basically, we're trying to call it stress, and this is my interpretation of what I heard from veterans over many years. That's what I heard from veterans lived experience that they were told to call it PTSD and you will get service connection even though that's a very different condition.

[00:13:35] Aaron Goodman: When people, when Gulf War veterans returned and saw healthcare providers, you write about some of the diagnostic testing that people received. Many people had impacts that were measurable on the brain. Diminished gray matter and lesions. Could you talk a little bit about what was scientifically provable related to the impacts of chemicals on the human body?
[00:13:59] Beatrice G.: As you mentioned, there are gray matter and white matter effects in veterans, and I will absolutely predict this would be true for chemically sensitive people, have reduced number and activity of a type of cell called natural killer cells, which are an immune fighting cell. 

[00:14:14] Aaron Goodman: Do you want to talk a little bit about what kind of conventional treatments Gulf War veterans received, and their effectiveness in contrast to complementary and integrative health protocols?

[00:14:26] Beatrice G.: Yeah, so we have not published, but actually did a survey study of treatments tried by Gulf War veterans. The VA put out recommendations to give them antidepressants with, by the way, not a shred of evidence that antidepressants helped them.

Among the very worst, the ones that had a higher number of people reporting it was their very worst than the very best were, drugs from these antidepressant classes. So the recommendations were both Offensive to veterans who were saying this is not a psychiatric condition. This is not in my head, don't treat me like I have a mental problem. Treatments, the one that came out the best on that was coenzyme Q10 which we had actually done a treatment trial for that showed significant benefit to symptoms and to objectively measured physical function, but there are other things that are probably looking favorable as well.

My view of the things that are favorable is that they often are things that operate on this oxidative stress mitochondrial impairment access, which includes resveratrol and curcumin, both of which have known mitochondrial benefits. In those papers, they think of them as anti-inflammatory, but I think that the inflammation benefit comes probably from the cell death benefit.

And again, in our data in Gulf War veterans, inflammation didn't relate to Gulf War Illness severity, but mitochondrial impairment did. So it makes sense that the mitochondrial fix is probably what is minimizing the symptoms in those cases. 

[00:15:54] Aaron Goodman: You mentioned takeaways for the wider population. Is this important information for the wider public? In other words, does it help to create awareness about the hazards of toxic chemicals that the general population is exposed to on a regular basis? 

[00:16:09] Beatrice G.: Yeah, I think it does. What this is reminding us is that essentially almost every chemical can be moving people toward this pathway of more mitochondrial injury and mitochondrial injury with the downstream consequences of that and that this is what is involved in aging and that Gulf War veterans concentrated a lot of these chemicals at the same time and and show what looks like accelerated aging, but the evidence suggests that chemical accrual at lower levels at the same time or sequentially over time may lead to similar things.

We've done some recent work that we have not published that suggests that membranes of Gulf War veterans, of affected Gulf War veterans are very different. And there may be other ways that there's less ability to withstand new chemicals because of things like barrier function of cell membranes and so forth.

People who are not chemically sensitive now may become chemically sensitive in the future or somebody they love may become. And even where that is not the case, the lessons surrounding chemical sensitivity, mitochondrial injury, from chemicals etc, are lessons that have relevance to the health of us all. 

[00:17:29] Aaron Goodman: Thank you so much for sharing all this information with us. I really appreciate it. 

[00:17:35] Beatrice G.: Thank you very much for your kind attention. 

[00:17:38] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm host and creator Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is supported by the Marilyn Brockman Hoffman Foundation and listeners like you.

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Thanks for listening. The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity.
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