Years later, still unclear why US staff in Cuba, China experienced strange symptoms

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A National Academies panel commissioned by the State Department shed new light on a disturbing and still mysterious episode. Employees in the Cuban embassy reported headaches, pressure, nausea, strange piercing noises, and cognitive problems seeming to emanate from a directed source. Commerce Department employees in China also had similar experiences. Some still haven’t fully recovered from the 2016, 2017 and 2018 occurrences. For more on the panel’s charter and what it found, Federal Drive with Tom Temin gave a wide ranging interview to the committee chair, of which you’re about to hear an excerpt. Dr. David Relman is a professor at Stanford Medical School and chief of infectious diseases at the Palo Alto Veterans Affairs health system. He discussed some of what hampered the investigation.

Interview transcript:

Tom Temin: Dr. Relman, good to have you on.

David Relman: Pleasure to join you.

Tom Temin: Tell us what the State Department specifically asks this panel to do. It was a big panel and a lot of expertise.

David Relman: Right. There were some discussions back in the summer of 2019, about what exactly we would attempt to address, and we arrived at three sets of taskings. The first was essentially a request to review and help understand better the clinical features of these cases. The second was a request to review possible mechanisms that would explain those clinical features. And the third was to provide assistance and guidance about both the management of the current patients, but also the planning for possible future events of this sort.

Tom Temin: All right, and what was the methodology? Was it basically a document review, or I believe you also interviewed a lot of the people that were claiming these problems?

David Relman: It was yes to all of the above and more. The National Academies typically creates committees to address requests of this sort. And in this case, they did so. It was a standing committee of 19 members, myself included. We were all volunteers, and we came from a variety of different areas of expertise chosen specifically to address the task. Most of the committee had some clinical background, we had a number of truly eminent neurologists, neuroophthalmologists, audiologists, people who specialized in vestibular disorders. But we also had infectious disease experts. That’s my area. We had folks who are expert in rehabilitation medicine, experts in epidemiology, environmental science, and also experts in the health effects of electromagnetic radiation. So we had our committee set up in the fall of 2019. We then met in person twice. And then a third time virtually as our work began to wane in the spring of this past year. We also reviewed a number of documents. And so much of our work was done at these three meetings, during which we heard presentations from each of the clinical groups that evaluated these patients. These were the groups from Miami, from University of Pennsylvania, from NIH, and then also from Dalhousie University in Canada. We invited experts to come give us presentations on areas of technical subject matter knowledge that were relevant to our tasks. And we also met with eight of the patients themselves, most of them in person, some of them virtually. But it was done in private. And it was done for the purpose of trying to understand their individual stories much more clearly. I should say that we have a couple of limitations. One of them was that because of health privacy concerns, and the laws that oversee that, we could not receive individualized health information. What we received instead, was aggregated data, data from groups of patients that were seen by each of these clinical centers. But it was impossible for us to link even anonymized data about specific individuals from one of the clinical centers to another or across time as these individuals were seen, perhaps repeatedly, by some of these investigators. So that was a big limitation, because we were forced to deal with data in a form that didn’t allow us to pick it apart and really parse the sources, etc. And then finally, there were some other sources of limitations having to do with the fact that much of the information about these cases is classified. But in addition, the fact that government agencies have been involved in ongoing investigations as some of them were reluctant to share their ongoing and incomplete work with us as it proceeded.

Tom Temin: We’re speaking with Dr. David Relman. He’s chief of infectious diseases at the Palo Alto Veterans Affairs health system, and chair of the National Academies panel, and I want to return to some of those limitations. But first, let me ask you about some of the clinical piece of this of the three areas that you were looking at. You found that not everyone had all of the same sets of symptoms, but yet what they had in common was unexplainable, except by perhaps that idea of radiation of some source. Do I have it right?

David Relman: That’s close. That’s close. What we found was that there was a great deal of heterogeneity, as you suggest, between and among the patients. So, you’re right. Not every patient complained of and seemed to suffer from exactly the same set of symptoms and signs. Nor did they have the exact same set of laboratory and clinical test results. But we were able to group the clinical findings into two bins. The first was the most dramatic, distinct and unusual. And that was a set of clinical findings that began abruptly at the very beginning of these illnesses, often in the middle of the night, awakening individuals from sleep, and consisting of some truly unusual clinical findings. For example, the sudden onset of a painfully loud piercing, or screeching or chirping, or even clicking sound that they perceived in their head. Some of them said, “It was as if I suddenly awoke with the painful sense that there was a fire alarm going off next to my pillow.” In addition, a lot of them had this sudden onset of pressure or vibration in their head, painfully so. Almost as if some said, “You’re driving down the highway at high speed, you’ve got one window cracked open in the back, and you have that buffeting feeling,” but much more intensely. In addition to that, many of them reported, the sudden onset of ringing in the ears or hearing loss, profound dizziness and unsteady gait, because, of course, many were trying to get out of bed to escape these sensations, and were unable to stand, many of them had to crawl. And some of them even had visual disturbance. And what they then said was that if they were able to leave the place where they first experienced this, for example, their bed, and make it to another room, all of this would suddenly subside. And if a few of them, they told us, returned to their bedroom, soon thereafter, it would return immediately. So it clearly was position-dependent for some of these people, and was perceived as directional. So this was something that to our career, experienced, some of the nation’s finest, neurologists was something they had never heard of. It didn’t fit with anything in the neurological literature, or in the general medical literature, and to us was clearly the most distinct and unusual and sort of defining clinical feature. When we looked at the disparate test results they received, again, from very different places with non-standardized testing, in some cases, we were able to piece together a story of vestibular injury, which means evidence of injury to the inner ear, which is where the labyrinth is located, or the cranial nerve that carries this stimulus, the information from the inner ear into the brainstem, or other parts of the brainstem. So it was a particular area of injury that seemed to best explain these clinical findings. That was bin number one. Sorry to go on about that. But it was clearly the most important, you know, in terms of defining the clinical illness.

Tom Temin: Let me just ask you quickly, are some people still having effects from this? Or have they all fully recovered?

David Relman: No, some are clearly still affected. And that’s just about to explain that a number of these same patients then started developing chronic or persisting symptoms. These were symptoms that were, for example, dizziness, impaired balance, a sense of vertigo, fatigue, impaired concentration, memory problems, insomnia, and even depression. Those are symptoms that continued in about a third of the individuals that had these initial early findings. But as you can tell, these are findings now that are a little less specific, a little more commonly seen with a number of different kinds of etiologies and disorders. And for us, we’re less distinct. They are no less impairing, or debilitating for these individuals, though. But it simply confuses the story, in terms of whether there is, in fact, just one possible mechanism that explains all of these cases and all of these different symptoms and signs.

Tom Temin: We’re speaking with Dr. David Relman. He’s chief of infectious diseases at the Palo Alto Veterans Affairs health system, and chair of the National Academies panel. And in the second bucket of findings that the State Department hoped for, you did actually come up with what you thought was the most plausible mechanism, though, at least for the initial injuries.

David Relman: Right, but just to correct the situation. When we looked at these two buckets, we decided to focus on the first the most distinct and unusual because we thought it offered the best opportunity for arriving at a possible mechanism specific mechanism. And that’s where we came up with, after our review of four different plausible mechanisms, we came up with one that we thought was the most plausible and certainly consistent, we thought, with many of these findings in the first bucket: the acute, poorly explained, poorly otherwise explained and dramatic and distinct clinical findings. And that one most plausible mechanism was pulsed radiofrequency energy or pulsed microwave energy that we thought was a consistent mechanism to explain those early findings. We noted, again from the literature, that based upon a variety of different kinds of studies, pulsed radiofrequency energy could also explain many of the chronic symptoms, the ones in the second bucket as well. But of the other three mechanisms that we considered–chemicals, infections, and psychosocial mechanisms–we found that these three were less able to explain those early, distinct and very unusual clinical findings.

Tom Temin: Sure, and if someone receives an injury by whatever source to the inner ear or to a nerve inside the brain, that injury could then produce lasting symptoms once the injury is, or the initial break, or whatever it might be, has healed.

David Relman: Absolutely. And this is actually a very important point. We think, and it stands to reason, and this is common in medicine as well, that following acute injuries, the body begins, in some cases of very dramatic effort, to try to compensate, to try to restore proper sensation to correct, you know, what are perceived as miscues, and to start to even remodel in the case of the brain. And that’s what we think may have happened. We think there was an acute injury, again, from this most plausible mechanism, the pulsed radiofrequency energy, but that then perhaps triggered a set of compensatory effects in the brain that led to some of the chronic symptoms, as well as opens up the possibility for, for example, psychosocial factors to weigh in. Because it is quite common to see problems like depression, or memory issues or insomnia ensue when a chronic injury begins to lead to persisting effects, and in the case of vestibular injuries. This is another important particular feature of these cases. When you have a serious acute vestibular injury, there’s very often a much more specific effort by the brain to compensate, because one of the most profoundly disturbing sensations that any of us can experience is the sense that our body is not properly oriented with respect to gravity, it creates a profoundly distracting and almost impossible sensation. And what the brain does is to rewire and try to correct for it. And when it does this, it creates a secondary problem, which is often called persistent postural perceptual dizziness, or 3PD. This disorder is a chronic disorder that’s caused by acute injury that causes vertigo, unsteadiness, dizziness, etc., but in itself can lead to cognitive problems, impaired memory, difficulty concentrating, etc., simply because of the body’s effort to try to correct for these acute injuries.

Tom Temin: All right, then let’s get to what it is you have recommended that the State Department do with respect to these individuals, and what they might do in the future.

David Relman: We have three important broad sets of recommendations. And just to summarize them first, we recommended that State Department and really all of the U.S. government expand its collection of baseline and longitudinal data from all personnel prior to and then during overseas assignments. What do we mean by baseline data? We mean measurements that we think will prove to be very important when or if something untoward happens in the future upon deployment, especially of a sort that we were just describing and discussing. For example, we note here that a number of these patients suffered from particular forms of vestibular and eye movement disorders and injury. We recommend that people who are viewed as at risk for having this kind of injury upon deployment, that they have careful neurologic exams before they depart, in order to understand whether there might be any prior neurologic problem that would perhaps contribute to or change the test results, or even perhaps, complicate a diagnosis later on. In addition, things like blood samples could be drawn and then stored in the eventuality that they’re needed for new symptoms and signs that warrant, again, blood testing later on. So you now have a baseline to compare it to. So that’s recommendation one. Recommendation two is for, again, the State Department, but really the entire U.S. government. To establish plans and protocols for a much more comprehensive, but also speedy and effective public health and research investigation in the future, should there be new clusters of cases. Now, to be able to recognize clusters of cases, they’re going to need a system that is constantly collecting information about untoward health events, or puzzling, poorly explained symptoms beyond those that they’re normally collecting and analyzing from people with known medical problems. So this would be a system that’s prepared to recognize a pattern of new illness or injury that wasn’t anticipated before. That’s a system that we don’t really have right now. And it’s one that we, I think, very desperately need in order to be able to recognize something that’s new, but also respond much more quickly.

Tom Temin: And the third recommendation?

David Relman: The third recommendation is that this rapid response to something that might occur in the future has to be organized in a way that’s, again, across all of government, involves a number of pre-positioned standardized protocols. So we’re not just testing ad hoc, or testing on the basis of only what a person’s health insurance would pay for, because that was, in fact, the situation that these people faced. But we want a system that can be standardized ahead of time, and cover the necessary testing that would then be undertaken. A lot of these people might have improved more rapidly had they received the kinds of specialized neurologic rehabilitation that we think might be effective in some of these cases, and yet was not available to them at the time. So these are the three basic recommendations. I think there may be much more that we as a nation want to think about. But as a start, we think these can be put into place now.

Tom Temin: Well, I guess the nation could think about why some apparent agents are pointing radar guns at our employees in embassies overseas. We’re speaking with Dr. David Relman. He’s chief of infectious diseases at the Palo Alto Veterans Affairs health system, and chair of the National Academies panel. But let me ask you this, reading between the lines of your report, I got the sense that the committee felt, maybe the State Department and the government was undermining its own investigation it was asking you to do by limiting the medical data that you could get, and maybe not clearing people to see some of the national security information. I mean, if this had happened to me, for example, and someone said, We want your medical records, I would say, “Take them, by golly, read everything. You can even read about my blood pressure, or my cholesterol, I don’t care, if this will help something personal, and also help national security.” Who cares about a medical record if it’s voluntarily given up?

David Relman: Right. No, absolutely. This is something that you would, any of us, would like to think that we can simply have in place now or simply put in place for the future. But there’s some complications. And I don’t want to lay blame on the State Department, per se, for this. There are federal laws that regulate who can allow personal health information or even personal identifying information to be shared. Right now the only federal agency that has the authority to collect information and link it to the same individual, even anonymized, is the CDC. The CDC is the only agency that could do the kinds of things that we would have liked to have been able to do ourselves. When we turned to the CDC and said, “Listen, we believe that you are in the process of completing such an analysis. Could you help us?” they said, “Well, our report is right now under review in the various departments of government that have vested interests in these cases.” So we can’t share it right now. That was something that was frustrating to us, but I’m afraid would have required an act of Congress to shake loose, perhaps that should have been done. But we as a nation have a variety of administrative limitations in place, in part, for good reason, in part because they’re just legacies of a time when there were concerns or needs that don’t reflect the present ones. So yes, we could do a lot better. But it’s not necessarily easy. On the score of classified information, and the who done it part, I just want to make clear, when we negotiated, we at the National Academies, negotiated with the State Department about what it is that we thought that the committee could profitably undertake in a year’s time, we decided that the who done it part simply wasn’t practical. This is something that is clearly in the realm of the province and the authorities of the national security communities. We believe that there is a great deal of effort underway to understand these events. From their vantage point, they have immense tools available to them, should and when they decide to use them, I think wouldn’t be fair to us to presume that we could undertake that kind of investigation ourselves, at least as constituted. We do believe that there’s a really important role for external, credible scientific and technical review of any science, whether it be open or classified, that’s undertaken by our government. And I think most people agree with that. But our committee as it was created, and with the other taskings that it was given simply wasn’t the committee to do that at that time. Should it be done now? I think so. And I think at the same time, we need to now make sure that there is a truly coordinated, dedicated and energetic effort by all of government to unravel what may have taken place, and what perhaps may still be taking place. And until that’s sorted out, your obvious questions about how do we prevent, truly prevent illnesses of this sort, should our most plausible mechanism be, in fact, true? is something that is going to have to remain unclear, because you need to get to the source, obviously.

Tom Temin: And just from a personal standpoint, I mean, looking at the people asking your opinion, as a person, the people that were targeted, apparently, or let’s say, received this radiation or received this injury, it wasn’t the Secretary of State, it wasn’t the ambassador, it wasn’t the people that could do good by an enemy standpoint by taking out so you almost get the sense that they were just experimenting with something for which they might have bigger plans down the line.

David Relman: Yeah, I mean, of course, the motivations of those who might have undertaken something like this, we have to reserve to the realm of speculation, and I don’t want to go down that road. But I will say that the people that we met, who were affected, and those that we’ve heard about through our work, are people who are doing really important work for our government overseas. These are not simply bystanders. These are our critical actors on behalf of all of our collective interests as a nation. And I would not presume that they don’t, in fact, serve in critical roles that made them targets, for example. So I think this really has to be looked at carefully. And I will tell you, from a personal point of view, and I think the committee would agree, the people we met, and the people we heard about, are undertaking sort of God’s work. I mean, they are working under extreme duress, in some cases. They are not asking for public acknowledgement, or some kind of grand thanks. They’re simply doing their work, really hard work, because they’re absolutely dedicated to the cause. And I mean, the stories we heard about them attempting to return to work without fanfare, just because they felt committed, but were unable to do so, really made clear that we were not talking about people who are malingering or had some secondary gain from missing work. That was absolutely not the case here, it seems to me. These are people who were truly injured, who wanted to be back working and could not, at least in the fraction who have had persistent problems and disability, and again, that’s about, in our estimationand the estimation of the CDC, about one-third.

Tom Temin: Dr. David Relman is chief of infectious diseases at the Palo Alto Veterans Affairs health system, and chair of the National Academies panel that looked into the head injuries of State and Commerce Department employees. Thanks so much for joining me.

David Relman: It’s pleasure to join you. Thank you for covering this important topic.

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