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Welcome to the world of mass tort lawsuits against pharmaceutical manufacturers based on adverse event reporting. Some patients report having extremely common symptoms after taking the drug, then everyone taking the drug starts looking for it, and pretty soon a disproportionate number of patients on the drug have reported the symptoms. Buckraking plaintiff lawyers get involved and pay experts with prestigious credentials to give opinions that amount to nothing more than "consistent with". FDA request new studies from the manufacturers which are inconclusive or take years, and a "consistent with" caution gets added to the drug labeling which further fuels the litigation. Some judges let the case go to the jury, some juries buy the theory and award large damages and hundreds of millions or billions are paid in settlements without regard to whether there is persuasive evidence of causation in general or in the specific cases. Often the matter is only resolved years later when enough people have taken the drug that it's possible to run epidemiology studies that are large enough to have sufficient statistical power to be persuasive. That system has made many lawyers rich, but that's about all there is to commend it.

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Fun fact, most/all other developed democracies don't use juries *at all* for civil suits like this. (They are inconsistent about hearing them for criminal trials, but many other wealthy countries don't use juries for that either). The judge hears the case, makes the decision & sets the damages. Seems like a much better system!

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OTOH, the conviction rate in Japan is north of 90% even when defendants benefit from the sober judgment of trained professionals, so maybe everybody in Japan just agrees that people accused of crimes are overwhelmingly likely to be guilty…

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Or perhaps they only prosecute the cases that have very strong evidence.

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My completely anecdotal and subjective impression of this from friends who live in Japan is that this is not the case. Much of the Japanese legal defense strategy involves a series of maneuvers to avoid allowing an accused person to stand trial.

Also, it’s facially silly to imagine that Japanese law enforcement has somehow found a way to target legitimate criminals in a massively more efficient manner than every other country in the world. Other countries with extremely high conviction rates are generally autocracies.

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All true but these sorts of common symptoms are not the kind that bring $$$ in lawsuits. At best you have situations with common illnesses for which there is some reason to think a drug has raised the risk. Heart attacks are serious and if there’s reason to think that Vioxx doubles the risk then the manufacturer is responsible for half the heart attacks occurring in patients but you don’t know which half so it can be sued for all of them. And that’s a case where the evidence is good. If there’s plausible but inconclusive evidence that drug X raises the risk of cancer by 20%, you get sued by every one with the cancer even though the drug is at most responsible for a sixth of them.

By the way, “consistent with” claims are seldom accepted for FDA labeling and when they are they go in the laundry list section that explicitly says there is no evidence of causality

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Heart attacks, strokes, diabetes, various types of cancer, etc, have many and confounded causes, and are common enough that they all occur in the general population that doesn't use the drug, but if you could prove both general and specific causation they would entitle a plaintiff to big bucks. But that's not what happens. Instead, even if there is persuasive evidence that a mfgr should have known and warned that drug causes some number of increased cases, there's no way to prove specific causation -ie, is this particular plaintiff one of the small number of additional people who got this condition from the drug or one of many who would have gotten it anyway- so any individual plaintiff's case remains a crapshoot. If the judge is lenient enough to bend the law and let them get to a jury, the jury may or may not award damages. So the value of all the individual cases is heavily discounted for settlement purposes, though that can still be an eye-popping number in the aggregate because there are thousands of plaintiffs, recruited by TV and social media advertising. It's not really even jackpot justice, because by the time the lawyers take their cut and deduct expenses from the aggregate fund, the amount left for each individual plaintiff can be surprisingly paltry, certainly not anywhere close the what would be adequate compensation if they could actually prove causation of a serious injury like a heart attack or cancer. It's just random redistribution of money. About the only serious argument you can make in favor of that system is that it serves as a backstop to FDA which has the primary role of requiring mfgrs to be vigilant about drug safety. It has no value as a compensation system, but possibly some value as an enforcement system, albeit an enormously inefficient and wasteful one. All in all, though, a joke by and for lawyers (plaintiff and defense side) on everyone else.

The regulatory standard for adding a warning or precaution (not just the AE laundry list) is "reasonable evidence of a causal association", which is less than the 51%, more-likely-than-not "preponderance of the evidence" state tort law causation standard. So yes correct, the technical FDA warning standard is not "consistent with" but it's closer to that than to the standard required for a jury to award damages under state law.

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Thanks, Ms. Shure. I sympathize with your exasperation. Your views line up with those of Cheryl Rofer, whom I also respect.

I am a great hater of the Putin regime, and I am sure that he would be happy to directly attack our embassy personnel if he could.

But there's no good proposal for a mechanism of injury here. And when I ask my more credulous friends for hard evidence, all I hear is... *crickets*.

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Putin would be happy to directly attack out embassy personnel if he could derive benefit from it (and I can't see no realist benefit) and get away with it (the risk of being caught if it was real is enormous, Putin isn't stupid). If you had such a weapon, you wouldn't risk using it on random embassy personnel, you would use it on your political enemies.

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Fair point that if Putin had a wonder-weapon of this sort he would probably put it to more strategic purposes.

I simply wanted to indicate that my hesitancy in seeing Russia behind the "Havana Syndrome" is not due to any larger inclination to trust Putin's regime or defend their reputation. I think he is a deeply evil person. And he has a price track record of using poisons, radiation, and open windows in order to murder his opponents.

(But yeah, like imagine we had one of these remote brain-whackers. Surely we would save it for use in a real crisis or conflict, rather than frittering it away on pestering people, thereby giving our adversaries advance knowledge of our capacities *and* time to develop defenses.)

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I think he would take a multitrack approach, taking advantage as in this case when there’s plausible deniability but value in sowing doubt and making mischief but saving the more aggressive use for use in crises

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"...he would take a multitrack approach..."

I certainly cannot rule that out -- it's consistent with the evidence (as they say).

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Completely agree.

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"price track record" wtf?

I wrote "proven track record" and my phone messed it up. That's my story and I am sticking with it.

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Lol crickets

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When Matt said you were going to do a guest post, I was super excited. I have been reading your work on Havana Syndrome for a while. I was skeptical about it when I first heard about it.

My skepticism came from a... why would anyone want to do this. The risk of being caught can't in anyway justify some obscure benefit from this sort of attack. I was not at all surprised when the evidence for it failed to materialize.

I am curious as to the demographics of the Havana Syndrome patients? Age and gender?

Now for the controversial opinion. For a while, I have believed that a certain (perhaps the majority) of long covid cases, or people that have complained about long covid were suffering from "mass sociogenic illness"

Now, I know that people that have severe symptoms that end up in the Hospital have documented organ damage, but this is the sort of thing that can easily be detected.

However, there are a large number of "long covid" sufferers who complain about many of the same symptoms as Havana Syndrome. Headaches, fatigue, brain fog, neurological symptoms. Etc...

Additionally, there were many of these long covid patients who said that their symptoms mysteriously improved after getting vaccinated, of which there is no clear medical reason as to why.

Additionally, several months ago there was a study of long covid sufferers that showed that many of them had no detectable antibodies to covid and had no record of positive covid tests.

Acknowledging "mass sociogenic illness" is a thing is one of those things that people tend to be very careful about, especially in the media. It's sort of the equivalent of calling someone "crazy". Something that isn't polite.

If you talk with Doctors, they will quietly acknowledge that psychosomatic symptoms are quite common. The mind is a powerful organ.

Note: I am not saying that all mysterious symptoms are psychosomatic. There are clearly cases of medical issues that Doctors just haven't figured out. The body is complex. Between the brain, nervous system and immune system, there are plenty of ways for the body to suffer.

However, that does not mean that mass sociogenic illness doesn't exist, and that we should carefully consider it when making policy decisions.

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Not a doctor so take this with your requisite grain of salt, but I think your supposition about long COVID is exactly right. A contagious and dangerous disease with the capacity to temporarily impair a lot of bodily functions, wall-to-wall media coverage of the illness, a lack of medical understanding at the outset — it’s not difficult to see how we could whip ourselves into the kind of collective hysteria necessary to perpetuate a sociogenic illness.

I’m just about fully recovered from a psychogenic illness myself — something I referred to as “chronic fatigue syndrome” for several years. The irony in cases like mine is that giving the illness a name is one of the most important prerequisites to sustaining the symptoms — you believe it’s a real thing, so your mind does what it can to pad your perception of your new reality. In essence, the only thing underpinning your illness is the belief that you’re ill. Only when I started shedding the idea that I was an “ill person” who suffered from a nameable disease did I start to recover. The mind — it’s a helluva drug.

I’m also not a rare and unfortunate case — there are numerous “diseases” out there that function exactly the same way. Fibromyalgia, chronic Lyme disease, a lot of migraine disorders… it’s a long list.

The trick, of course, is convincing sufferers that there is no “there” there, and that the illness has its roots in the mind. For many (most?) people, the very idea is tantamount to arguing their god is a false god. There’s so much identity and belief bound up in these diagnoses that I don’t expect any kind of quick resolution to the sagas of long COVID or Havana syndrome.

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In some ways, the Long Covid sufferers who mysteriously were cured once they were vaccinated were the lucky ones. The easiest cure for a psychosomatic disease is a psychosomatic cure. It's why sugar pills are so effective.

I don't know much about chronic fatigue syndrome. My gut was it was probably like other things, a mix of people with somatic and psychological causes.

I would be interested to hear your story and how you overcame it.

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The short version of the story: psychotherapy. The preconditions for psychogenic conditions are, like many psychological problems, established during childhood. People differ in terms of when those preconditions come home to roost — I was 25, some sufferers are younger, some older — but the unifying theme for recovery seems to be therapy. Only when you adjust your beliefs about yourself and your place in the world will the symptoms resolve — at that point, they no longer serve a purpose.

I know it sounds like voodoo — that’s why I’m working on the long version of the explanation. Not quite ready to call it a “memoir,” but I imagine that’s what it’ll be when I’m done. If it’s interesting to you, I’d be happy to share more as the project develops.

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I would be very interested in reading that.

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Probably didn't expect a response to this comment two and a half years later, but the hell with it -- the blog is live!

https://innermachinations.substack.com/

Let me know if you have any specific questions if/when you decide to read -- I want to be as responsive to readers' interests as possible.

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Happy to hear it! I’ll try to share some excerpts when they’re ready, though I suspect there’s a better venue than these comment sections.

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I am interested. I can imagine that overcoming a psychosomatic condition is very challenging.

Are you healthy and active currently?

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Hey Rory! I still remember this conversation from way back when and wanted to update you -- the blog is live:

https://innermachinations.substack.com/

Also (completely unrelated): let me know if that New York trip is happening so we can get an SB group together!

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Yep. Part of recovery involves identifying the aspects of your life that you’ve convinced yourself are “off-limits” and, well, forging ahead with them anyway. Exercise is probably the most common roadblock, since most people with “ME/CFS” believe that exercise will worsen their symptoms. (Of course, exercise worsens their symptoms precisely BECAUSE they believe it will.)

I now work out 5-6 days a week with about 5% of the exertional payback I used to feel. I expect that 5% to be 0% in the coming months.

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Don't over-train! Hopefully you do some anaerobic lifting weights along with cardio.

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There's no reason Long COVID can't be both. As we've said, some number of LC sufferers never even had COVID, so clearly there's some sort of psychogenic factor. I can imagine that some number of COVID sufferers actually have severe aftereffects, and others pick up on those reports in a psychogenic way.

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Yes. In fact that some people authentically experience long term symptoms makes it even more likely that others will develop psychosomatic symptoms. I don't know how many times I've seen others get sick and start to almost feel lousy even though I never actually catch something. Worry is stressful.

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Indeed, then every slight headache or cough suddenly becomes the sign of an impending illness. I've gone to sleep a number of times thinking there's a good chance I wake up sick only to end up being fine.

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If they don't have antibodies, they should at least have a T cell response and we can test for that.

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But they also didn't have symptoms. So what mechanism do they not have symptoms, but still have long term effects?

The question is whether some Long COVID patients are having psychogenic symptoms.

Given we are humans, and the pandemic was a huge scary stressful situation, I think it's obvious that some people almost certainly did.

The next question is how many. That's a separate question, but once you admit that some did... there you are open to the possibility that it theoretically could be many.

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I don't know if I would say most. I am unsure of the number, except its probably more than a little.

But there is harm. If the symptoms are psychogenic then the only real cure is for them to come to terms with that. Since they actually experience pain and discomfort, a psychological cure relieves suffering.

If its a significant number, and the medical community attempts to use medical interventions to treat which inevitably won't work, then those people will continue to suffer.

Plus, identifying the real long term symptoms from other symptoms will allow scientists to focus on treating the somatic symptoms.

Also, there is reason to suspect that there are a significant number of psychogenic Long COVID cases.

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Your controversial opinion on long covid is pretty common among scientists. People who were seriously ill with Covid were likely to have a long recovery for the same reason people who were seriously ill with the flu were likely to have a long recovery. There are probably also some people who weren't seriously ill who will have long symptoms because it takes a while for the inflammatory response to the virus to go away and that's something that also happens with other viral infections.

But I don't buy the claims that a third of people who contract the virus have long symptoms. We're in the middle of a pandemic that has led to massive disruption in people's lives and daily routines. Some of those symptoms could be a result of disrupted sleep. Or even not getting your usual exercise. I'm a little concerned that some of our health officials recognize that long Covid is not widespread, but aren't going to say so because they think it will encourage people to keep up precautions against the virus. That's never turned out well.

This paper is really interesting; they found that believing one had contracted the virus was highly predictive of long symptoms, but only the loss of smell was more common in people with confirmed infection.

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2785832

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yes. The psychogenic factor is well known among researchers. But when one has mentioned it public society, they get attacked, therefore, easier to keep quiet. There is a gender issue to it which makes it extra sensitive.

But good point on the fear of long COVID helping to increase mask usage.

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I agree with you long COVID might turn out to be a mass sociogenic illness. That said lung damage is at least a reasonable process by which it could happen. (Reducing lung capacity causes pretty much all the above symptoms.)

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Right, but there's a contingent of people claiming to have long COVID without ever even having had an infection: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2785832

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"our results suggest that further research regarding persistent physical symptoms after COVID-19 infection should also consider mechanisms that may not be specific to the SARS-CoV-2 virus. From a clinical perspective, patients in this situation should be offered a medical evaluation to prevent their symptoms being erroneously attributed to COVID-19 infection and to identify cognitive and behavioral mechanisms that may be targeted to relieve the symptoms.23"

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I don't think "Long COVID" is technically sociogenic, as you indicate it is possible to sustain lung damage from COVID. That being said, it is also possible to sustain the same symptoms from a rough case of the flu. We don't have "Long Flu". In this way people who are crafting an identity around being a COVID longhauler seems to me to be totally social.

My mother-in-law had "Long COVID" technically. Recovered completely 4 - 6 months later. Definitely it sucked, but I think the media telling people that this might be a life-long condition is totally unsupported.

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I found out recently that a close friend of mine had what can only be described as "long flu" for one of the years I knew him (basically a normal flu followed by a year of night coughing fits which then went away as mysteriously as it arrived), and he just never mentioned it at the time. My guess is that in fact every acute illness comes with a basically proportional risk of chronic symptoms but people don't talk about it when the triggering illness is flu because they don't perceive the flu as a big deal.

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I specifically said that COVID creates organ damage which results in Long COVID. It is also well documented that the Flu can also do organ damage which results in long term effects. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5596521/

I suspect your friend probably had lung damage, which eventually healed itself (lungs are one of the few organs that can actually heal itself over time).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7338595/

Are you trying to say that psychosomatic conditions don't exist or that mass sociogenic illness is not a real thing? Despite numerous scholarly articles talking about it?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC543940/

https://www.aafp.org/afp/2000/1215/p2655.html

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/protean-nature-of-mass-sociogenic-illness/2BDC2262E104B8A33F3DD49773DA0D8B

Please clarify exactly what your thoughts are? The current premise is that Long COVID currently includes people who have somatic symptoms caused by damage caused by the virus and those who have psychological symptoms caused by anxiety and fear. No one has said in what proportion.

Do you agree with this?

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Oh I wasn't responding to your original post at all, sorry. Winternet said they'd never heard of "long flu" so I remarked that I had; that was the only point of my comment. I'm not taking any position whatsoever on what proportion of chronic symptoms are caused by somatic vs. psychological effects, both because I'm not qualified to and because I don't find it to be an interesting distinction. Like, the brain is just another piece of meat in the big blob of meat...

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Oh. Ok. that makes sense. Apologies.

Yes. Flu most certainly can cause organ damage and long term symptoms.

I agree with you about the brain being a big piece of meat. The people who experience psychosomatic symptoms most certainly suffer.

My only comment is that denial of psychosomatic symptoms actually makes it harder for people to actually recover from these issues. If someone's brain is causing symptoms that they believe are caused by a non-psychological cause, and the media encourages that belief, and minimizes the possibility of sociogenic causes, then the person will have a harder time actually recovering.

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I suspect that long Covid is made up of several sets of sufferers.

1. those with organ/lung damage

2. those who exaggerate symptoms

3. those whose symptoms are caused by sociogenic reasons

4. those who fake for attention or benefits

Something that hasn't been addressed is that Long Covid now makes you eligible for disability payments. Given that many of the symptoms are common and fakeable, their is probably a certain number of people who will fraudulently claim they have long COVID to get benefits.

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I specifically differentiated between people with organ (including lung damage) and those without it. Lung damage and capacity can be measured.

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To push back on those saying all chronic illness is psychosomatic (chronic Lyme, long COVID, etc) - there's a long history in the medical profession of claiming that anything they don't understand must be due to mental defects of their patients. One example (that won a Nobel prize) is the peptic ulcer, thought for 50+ years to be due to lifestyle choices, or even bad mothers. Then it turned out it was actually caused by a bacterium.

https://www.news-medical.net/health/Peptic-Ulcer-History.aspx

Doctors would rather tell a patient "you're crazy" than "we don't know what's wrong and we don't know how to help you". It's entirely biologically plausible that a viral or bacterial infection causes long term symptoms - we know, for example, that flu infection increases stroke and heart disease risk (possibly also true of COVID).

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I don't think anyone has said that all chronic illness is psychosomatic.

Are you saying that all no sufferers of chronic illness are psychosomatic?

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It’s possible that many of these conditions have real, discernible causes, but it’s also true that the mind can magnify their intensity well beyond their “objective” presentation. I had some muscle fatigue for a little while, but I was so anxious about everything at the time that I essentially willed myself into a case “chronic fatigue syndrome.” A healthier mind would likely have allowed the symptoms to pass without issue.

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What upsets me about the ‘Havana syndrome’ is it assumes the conclusion. These symptoms are consistent with lots of extant known unknowns. Why is it it’s own thing? Well first bc of the crickets. Now bc our foreign service personnel are assumed to be too good to be suffering from the same mysterious syndromes that normal people get. Instead they have ‘Havana syndrome’ and the most likely explanation is a ray gun…

I would say it’s the Havana syndrome defenders who are implicitly saying other ailments of unknown cause civilians get are made up. Why else do they need a special syndrome for themselves that has no particularly novel symptoms?

Of course it’s very possible there’s some info to support it that they just don’t want to share. But it’s sort of ‘classified intel fetish or mysterious syndrome; pick one’ IMO.

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The flip side to this is that if you take the patient's suffering seriously, and you actually believe the best evidence available is that the symptoms are psychosomatic, and the only way their suffering will be alleviated is for them to accept that, what do you do?

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Seems like an overly strong thesis. I agree that Havana Syndrome very much could be a mass psychogenic illness, but I would also put 'directed microwave weapon' at like a nonzero possibility. As the excellent comment by Neva Durand below me notes, there's a long history of doctors calling chronic illnesses psychosomatic- the peptic ulcer is a pretty wild example!

Shure here marshals a bunch of disconnected facts for the overly strong thesis that it

"is very likely" a psychogenic illness, ignorant of the irony that she's basically doing the same thing as the microwave weapon crowd. There's like the same level of evidence either way! Maximum irony points. Or, it could be a non-weapon but totally real cause such as a new type of illness or bug. (Perhaps it affects other, regular people in other countries who receive less media & medical attention than State Department officials).

We should continue to cautiously study Havana Syndrome, and not make overly strong, evidence-weak assertions either way- whether a new weapon or mass hysteria. This piece doesn't help. I suspect this kind of thinking is popular among the Greenwald/Taibbi 'everything bad about Russia is a hoax' crowd

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You have to try to be a good Bayesian here — once you lose the cricket noise, there’s no meaningful evidence of any kind pointing in any direction.

So what’s your prior — I don’t think, in the absence of any evidence, we ought to put equal weight on “stress-induced symptoms” and “novel energy weapons”.

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Having strong priors about this is bad Bayesianism. Some explanations may be more likely than others but all of them should be very low confidence.

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Psychosomatic illnesses are a thing. Ray-guns are not. Those are my priors. I am happy to entertain evidence saying otherwise, or offering an alternative explanation, but I haven't seen anything. Lost Future suggests the possibility that it's a disease (certainly reasonable a priori), but that doesn't seem to fit the pattern either.

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I agree, there's no meaningful evidence of any kind pointing in any direction- so writing an opinion piece with statements like "The “Syndrome” is a mass sociogenic illness" is overly strong. Reducing the two possible options to 'mass hysteria' or 'a new weapon' is a false choice, as I mentioned there could be some other (non-weapon) explanation such as a previously unknown disease or syndrome. It could be affecting other, ordinary Cubans who don't receive the same level of media attention as US diplomats & spies

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Shure does a good job of laying out the weakness of the raygun theory but much less to demonstrate that this is a functional illness. The discounting of the former increases the likelihood of the latter regardless of priors

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If a GP diagnosed a random citizen who came in complaining of headaches and fatigue with ‘Havana syndrome’ their peers would mock them. Maybe they would go for chronic fatigue or one of a host of other vaporous syndromes that represent this constellation of symptoms. The ‘Havana syndrome’ assumes that there is something special about foreign service personnel that have these complaints. And the only evidence supporting that was the crickets. Now all that’s left is the prejudice that our foreign service people are too tough minded to be suffering from one of these extant syndromes. But maybe everyone with unexplained migraines has suffered a directed energy assault? Who knows? By your reasoning it is exactly as likely as anything else…

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What is the 'evidence' that it's a mass hysteria? That's something that can really only be diagnosed years after the fact. Why would that be our default if we don't otherwise know?

Like- it's OK to be agnostic on issues man. It's OK to say 'there's really not enough evidence to say, let's gather data & be cautious for a bit'. We don't always have to have A Take on everything as it's happening. I'm simply pointing out the author has as much evidence for her thesis as the microwave weapon folks do

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Fair enough. Psychogenic illness is a garbage can. We wouldn’t ever ‘know’ that’s what it was in a very satisfactory way. But I would say the parsimonious explanation for an increase in reports of certain symptoms in Havana and then throughout the foreign service is that the internal reports to be on the lookout for those symptoms as part of an attack itself caused the increase in reports. Not ray guns. But as I said elsewhere just show me something remotely resembling a ray gun and I would change my mind.

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Thanks for spelling out what has always seemed to me the most plausible explanation for this problem. It's generally impossible to prove a negative, but the claims that diabolical weapons underlie the syndrome has always seemed far-fetched.

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Yup yup yup.

When I worked in Afghanistan it was common for schoolgirls to collapse from what were believed to be poison gas attacks by the Taliban. These happened often enough that the government ended up arresting some people and torturing them into confessing. But nobody ever found any physical evidence for poison gas.

If the Afghans had read this New Yorker article from 1978, they'd have realized what was actually happening:

https://www.newyorker.com/magazine/1978/08/21/sandy

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Extreme reactions to imagined Fentanyl exposure among cops is an extremely good example of this happening amongst exactly the group we're culturally inclined to believe wouldn't be susceptible to hysteria (a word not generally used for this any more precisely because it's tied up with those cultural assumptions.)

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The depressing thing about that is that because law enforcement has such a manly reputation, it's considered insulting and inappropriate to suggest that these reactions to suspected Fentanyl are psychogenic and so the media end up fanning hysteria over Fentanyl exposure.

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You are describing mass psychogenic illness.

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Same thing with the foreign service personnel. Previously headaches were nothing to focus on. Now they’ve been told someone is trying to kill them and sudden their headaches are a problem. The symptoms are real and they are accurately reporting them. But the perception of threat makes the report acceptable in a way it would not previously have been.

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Well, young women in the UK are convinced that men in clubs are injecting them with date-rape drugs: a method of administration which I don't think has ever been documented, although the drugs themselves exist. I don't know how many of those women are successful professionals, though.

I know I'll be canceled for saying this but it would be good to get a gender breakdown of the Havana Syndrome patients and compare it to the gender breakdown of the Foreign Service in general. For comparison, here's another disease that might not be real:

https://www.theguardian.com/society/2021/jun/13/why-are-women-more-prone-to-long-covid

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The field of medicine has tended to view psychogenic illness as a thing that affects women, especially teenage girls. As a result, there's less chance that unexplained symptoms in men, particularly men in tough professions would be considered psychogenic.

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Agreed: psychosomatic explanations should always be on the table, even when macho men get sick. But when there's doubt about whether an organic cause exists, patients skewing young and/or female should be considered a red flag.

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The difficulty with this is that women are much more inclined to seek medical care, so if there's a condition typified by vague, non-specific symptoms then the population seeking care is going to skew that way, psychogenic or not.

I think Havana Syndrome and Fentanyl exposure are interesting outliers that kind of prove the point - the putative explanations for them are an external threat, and there are male dominated hierarchical organizations providing a permission structure for reporting.

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I think that an issue here is that nobody wants to admit the possibility that their illness was psychogenic because it would mean they were "crazy" or that their very real suffering was somehow fake or invalid. It's not! Just because the primary cause of your symptoms was your own brain doesn't make it under your control, nor does it invalidate your experience.

I came down with a viral infection (never confirmed to be covid) in mid-March 2020 right when pandemic fears were at their peak. I'd say that I didn't really feel 100% physically again until August 2020 or so, and even now my exercise capacity seems limited (confounded by the fact that I've been much less active). It certainly didn't FEEL psychogenic, but I have to admit that I was extremely stressed and anxious the whole time--about my illness, about the uncertainty of how bad the pandemic would be, about my job, and about never seeing my friends anymore. Obviously if there's something physically wrong that's concerning in the long term it would be good to know (and doctors have been unable to find any issues), but I'm not super bothered by the prospect of it having been psychogenic--bodies and brains can be stupid sometime, it wouldn't be my fault.

So Havana, Lyme disease, long covid--it seems like sometimes the assertions that these are psychogenic are phrased in such a way that provokes defensiveness in the sufferers. I think in order to make progress in finding the real causes, psychogenic or not, it would be very helpful to destigmatize the psychogenic hypothesis so that people don't feel crazy or stupid if they did suffer from something that was "all in their head."

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"So Havana, Lyme disease, long covid--it seems like sometimes the assertions that these are psychogenic are phrased in such a way that provokes defensiveness in the sufferers. I think in order to make progress in finding the real causes, psychogenic or not, it would be very helpful to destigmatize the psychogenic hypothesis so that people don't feel crazy or stupid if they did suffer from something that was "all in their head."

Well, it's because a doctor is done with you if an illness is psychogenic, and the recommended remedy will be cognitive therapy with a psychologist or psychiatrist involved.

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More of this, please. I appreciate this type of well-reasoned and well-researched post.

Not sure why everyone is conflating this with Lyme or Long COVID (both of which are diseases with an actual cause and exhibit symptoms similar to ME/CFS). The better analogy is to the lab leak hypothesis! Lots of media noise around shady evidence with nothing concrete to refute the overwhelming likelihood of natural origin.

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Former sufferer of ME/CFS here: it’s a psychogenic condition.

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The problem with an indistinct term like “long COVID” is that it conflates a series of materially different problems. When I use that term, I’m specifically referring to conditions of no obvious origin beyond the sufferer’s prior COVID diagnosis. I don’t include actual lung damage in that category, which I would consider a clear and obvious cause of functional impairment. By contrast, there’s no clear and obvious cause of “brain fog” or memory issues.

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Perhaps, but much of the coverage I’ve read about long COVID focuses on people who had mild cases of COVID itself. Hard to draw a neat line between that sort of illness and severe, irreparable lung damage.

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I don’t think comparing Havana syndrome to Lyme disease is correct. One has evidence that is specific. A tick bite with a bulls eye . A Specific bacterial infection. And a source, deer. The symptoms of Lyme seem to lend them selves to many common maladies but a blood test can confirm it. I would agree that some folks are misdiagnosed and many self diagnose incorrectly… but it’s not the same as Havana syndrome

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Chronic Lyme disease is absolutely real.The nature of the bacteria, a relative of syphilis, is consistent with indolent infection causing damage, particularly neurological. That doesn’t mean many or most people that claim Chronic Lyme actually have it; the blood tests prove very little.

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There's a difference between "Chronic Lyme Disease" and generally untreated, tertiary, or disseminated Lyme disease. Like tertiary, or disseminated, syphilis, tertiary Lyme disease has all kinds of arthritic, cardiac and neurologic complications. However, there are normally more focal and severe than what is called the "Chronic Lyme Disease" which is generally more nonspecific symptoms. In true disseminated Lyme you can normally find evidence of the Lyme bacterium by sampling involved areas and running tests on the samples in these cases.

Here are examples of the symptoms of disseminated, late stage Lyme Disease.

"Arthritis is usually a manifestation of late disease, and occurs in up to 60 percent of untreated patients. Patients typically present approximately six months after infection with joint pain and swelling, and synovial fluid findings that suggest an inflammatory process. Chronic arthritis primarily involves the knees and hips.

Neurologic involvement, affecting up to 15 percent of untreated patients, can include lymphocytic meningitis, cranial neuropathies (primarily unilateral, but rarely bilateral, facial nerve palsy), motor or sensory radiculoneuropathy, mononeuritis multiplex, cerebellar ataxia, and myelitis. Patients may present with altered mental status, headaches, and neck pain and stiffness. The classic triad of meningitis, cranial neuropathy, and radiculoneuropathy has been described, although these conditions do not always occur together. Lyme disease must be included in the differential diagnosis of a seventh cranial nerve (Bell) palsy in endemic areas. Rarely, late disease may present as a subtle, subacute encephalopathy or axonal polyneuropathy that usually manifests as altered mentation, cognitive impairment, insomnia, or personality changes."

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Lyme disease is real, but 'chronic Lyme's' is the very dubious illness people are referring to.

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1000x this. Chronic Lyme has distinguishing features one can look and test for. Yes the test are shit and so the diagnosis is kind of shit. But there’s something!

Havana syndrome only makes sense as a novel Dx if you assume being attached to us foreign service makes you very unlikely to suffer from chronic fatigue, fibromyalgia, migraines, etc. and as long as those Dx are stigmatized that’s true enough… but now folks have been offered an honorable out for their illness and maybe they are just taking that option when they never would have before.

Which is not to say those ailments are fake either! Just that our hardworking service people have prejudice against them that they don’t have against having been ‘attacked’.

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I wasn’t aware of that - but even so I would say there is evidence for Lyme as a real diagnosis as compared to Havana syndrome which seems to have no evidence. I’m skeptical of Lyme diagnosis in general but not of its existence

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“ without the noise, there is nothing beyond the brute fact that medical science unfortunately lacks adequate explanations for many symptoms experienced by many people.”

This is key for me when I read about medical things. Doctors know a lot and they are always learning more. But there are still plenty of gaps for even common things, and given the placebo effect is a thing and people can apparently also trick themselves into being sick(er) - or merely conflating a few common symptoms into one big, scary, underlying diagnosis - I tend to read all such stories with heavy skepticism.

I haven’t read Douthat’s book on Lyme disease, for example, nor have I dug into Long COVID, but I generally enter those topics with my priors against it being a thing.

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I understand doctors get plenty wrong and Douthat’s book may in fact convince me, so thanks for the note. Broader point is just that my priors are in the other direction for these things meaning I’m probably more skeptical than usual and will read those arguments more closely for gaps, etc.

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"If you prove microwave weapons don't cause Havana Syndrome, great -- it's not microwave weapons. Could still be poison, infection, fungus, radiation, etc. The purpose of the hypothesis that the victims come up with is not to say "this is the one true cause of our illness", it's that you need a hypothesis to do any meaningful investigation of the cause or cure. The hypothesis doesn't need to be true, just useful."

But then when would you ever stop looking for medical causes of illness? Why don't you continue doing a whole battery of tests looking for medical causes of, say, depression once you've ruled out obvious issues?

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I highly recommend this podcast about Havana Syndrome. It's with an expert on functional illness and at one point she mentions that during the pandemic she would sometimes experience symptoms of Covid, which she knew were psychological in nature. This is something that happens to people when we're under stress.

https://podcasts.apple.com/us/podcast/45-havana-syndrome-a-disease-of-body-or-mind/id1545378409?i=1000540133170

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Russia using this secret weapon in Beijing is the most implausible thing to me. Why would they risk China getting the tech?

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This article conflates two questions: (1) is there an identifiable syndrome, ie are foreign federal officials experiencing certain symptoms at higher rates than the general population and (2) if so what is its cause. Shure points out that the individual symptoms are common, but she but doesn’t really argue, much less prove, that there is no syndrome to be explained. As a result, she’s ultimately left arguing that among the unknown causes of this syndrome, one speculative possibility (mass sociogenic illness) is probably true while all other speculative possibilities are probably false. I’m not convinced. To be clear, I have no idea what’s causing this and have always been skeptical that it’s the Russians. But I’d need a lot more evidence to move from general skepticism of conspiracy theories to a specific belief that the cause is more likely mass sociogenic illness than something else . Once it’s conceded that there’s a syndrome with an unknown cause, the answer is that the cause is unknown.

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So you present this information to the conspiracy theorists and what do you get? Crickets.

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I’m willing to go for some ray guns. I want to believe. Just give me some kind of proof of concept. They are acting like this technology came fully formed (maybe Russia trades with the aliens?), or they point to a couple of failed technologies Russia used decades ago as the precursors. This is supposedly a portable weapon that targets well from long range and leaves no trace. That’s a pretty advanced product! Maybe we could produce something that’s immobile, uses way too much power, causes electrical interference or targets poorly but gives a similar result? Just give me something.

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The evidence is consistent with battles between incognito superheroes and villains, that sometimes cause collateral damage.

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