License to Ill

December 2, 2021 8:23 AM

Havana syndrome resembles many other “contested illnesses,” only its sufferers — and promoters — are professional disinformation producers "Sometimes these communities can coalesce around unsubstantiated theories (as with Morgellons, an unfounded belief by some that mysterious fibers are growing out of their skin), but other times such networks can unearth tangible malfeasance (as with the childhood leukemia clusters in the late 1970s in Woburn, Massachusetts that were eventually traced to groundwater contamination from a local factory)."
posted by schmudde (34 comments total)

modern epistemology in a nutshell - who has the power to determine what knowledge is?
posted by AlbertCalavicci at 8:43 AM on December 2, 2021 [12 favorites]

If this is your thing (why, yes!) and if McElroys are your thing (sure, sometimes!) then let me recommend the episode of Sawbones on Havana Syndrome, and while we're at it, the one on delusory parasitism (including Morgellons). And, heck, the Sawbones podcast generally, because there's a lot of bad medical advice out there -- historical and modern! -- and Dr. Sydnee McElroy is awesome even if Justin is kind of a goofball.
posted by The Bellman at 9:02 AM on December 2, 2021 [5 favorites]

Over a hundred years later, Richard Shaver began hearing voices emanating from the welding machine at his work; they revealed to him that a secret race of subterranean robots (the Demos) were projecting malevolent rays that were the source of humanity’s misfortunes.

The Demos are being falsely maligned as the persecutors here, obviously this article is a disinfo piece put out by Big Dero.
posted by FatherDagon at 9:33 AM on December 2, 2021 [5 favorites]

"modern epistemology in a nutshell - who has the power to determine what knowledge is?"

Brilliant, AlbertCalavicci
posted by schmudde at 9:50 AM on December 2, 2021

Thoughtful article.

The major difference between believing Havanna Syndrome is the weapon of a foreign nation and believing in Q-Anon is that the former is likely to ruin more people's lives and waste significant government resources. In all the proposed mechanisms, the physics is impossible. The biology is impossible. The practical sniff test fails spectacularly: foreign governments have spent years deploying incredibly sophisticated weapons that we can't even describe using contemporary physics. . . in order to slightly annoy minor international diplomats in foreign countries for no obvious reason? Come on! It's entirely possible foreign (and domestic) governments have tried this kind of thing. They either failed, or falsified their results. They didn't infiltrate Cuba in order to try them out on random US state department workers. I'll give fifty to one odds that in fifty years there will be no reliable evidence that this was the result of a functional weapon. Nothing about it makes any sense.
posted by eotvos at 9:57 AM on December 2, 2021 [11 favorites]

The good thing about Havana Syndrome is that every time you hear a journalist talking about it as a very real threat to national security, you know that journalist is willing to uncritically repeat CIA talking points.
posted by thedamnbees at 10:08 AM on December 2, 2021 [22 favorites]

As a person bedridden with severe myalgic encephalomyelitis, this is not a great way to write about these illnesses -

A lack of visible physical trauma, an absence of an immediately identifiable cause, and murmurs that it’s all just mass hallucination place Havana syndrome within the cluster of diseases that are sometimes termed “contested illnesses.” In such cases the sufferer is not just experiencing a malady of some kind, but having trouble convincing others that it’s real — a group that includes chronic fatigue syndrome, Gulf War related illnesses, and chronic lyme, among others.

Here's Julie Rehmeyer, a science writer with ME, explaining how to do it better.
posted by jocelmeow at 10:17 AM on December 2, 2021 [21 favorites]

Pro-tip for the spook-industrial complex: don’t get high on your own supply.
posted by davel at 10:17 AM on December 2, 2021 [5 favorites]

Your post title is awesome.
posted by JanetLand at 10:31 AM on December 2, 2021 [1 favorite]

When I was a kid, I had a relative with conversion disorder, and I asked a doctor what that meant. They said it meant the person was "making it up." I believed them, and I was grown up before I learned differently.

Mass psychogenic illnesses have happened throughout history around the world, but I think the American landscape is particularly bad for them. In our society, we have traditionally only respected -- believed in -- tangible physical causes for an illness or injury that is tangible and physical. Anything else is malingering or a failure to think positive, to push through it. It's not real. An American sufferer from a psychogenic illness is of course incredibly insulted at the idea that it's "all in their head" or that they're "making it up" -- two phrases that might as well mean the same thing. Real is real. They need the currency of reality.

I do not know what is happening with Havana syndrome. I heard a My Favorite Murder episode that covered the mystery the other day, and -- well, those ladies would be the first to tell you they're not experts on anything, so I feel like I know even less than before. I'm not inclined to believe in super secret weapons more than otherwise, but still.
posted by Countess Elena at 10:39 AM on December 2, 2021

I don't understand this criticism. The article doesn't suggest that the symptoms aren't real, only that the 'raygun theory' seems to be a convenient fiction.
posted by thedamnbees at 11:10 AM on December 2, 2021 [5 favorites]

I remember hearing about an explanation centered around stress. Its a high stress field (national security), the imagined worker is doing incredibly long hours plus weekends, which perches them on a precipice of a breakdown (physically and mentally) from stress.

Then a nebulous unavoidable threat crops up that damages the thing they need to work, the mind, and a contagion of added stress spreads.

So the effects are real enough, via this theory, but it isn't space rays, they're just working themselves to death/disability.
posted by Slackermagee at 11:21 AM on December 2, 2021 [4 favorites]

Interesting article, thanks for posting. I must admit this has not been at the front of my mind, ever, but while reading this piece I came to think of the cognitive dissonance Americans in Cuba must experience: they are living in an incredibly poor and powerless tiny country with deep historical ties to the US, and yet the official US policy is that Cuba is a great threat to the US, the world's only superpower.
I haven't been to Cuba for 20-something years, and I don't know the situation now, but I don't imagine it is much improved.
posted by mumimor at 11:22 AM on December 2, 2021 [4 favorites]

Great piece, thanks for posting this.
posted by ivanthenotsoterrible at 2:00 PM on December 2, 2021

I love this bit that's quoted from an N+1 article:

For as long as the CIA has existed, the US government has used outlandish accusations against the agency as evidence that this country’s enemies are delusional liars. At the same time, the agency has undeniably engaged in activities that are indistinguishable from the wildest conspiracy theories. Did the CIA drop bubonic plague on North Korea? Of course not. But if we did, then of course we did.

posted by Halloween Jack at 3:00 PM on December 2, 2021 [1 favorite]

I remember hearing about an explanation centered around stress.

For many, many years, doctors have loved to blame illnesses they don't understand on stress. It sounds plausible, if you don't know any better, but it's almost always bunk. There just isn't any reliable evidence that stress causes the kinds of symptoms in question (or in other diseases that are often blamed on stress), nor is there any reasonably biological explanation for how stress would result in these symptoms. I don't know what Havana Syndrome is, but it is very unlikely that it is due to stress.
posted by ssg at 3:01 PM on December 2, 2021 [7 favorites]

Stress and conversion disorder, et al, have long been the God-of-the-gaps for medicine, when it can't admit to not having answers.

The underlying 'reasoning' is always the same: If there is no demonstrable physiopathology, it must be psychogenic.

Because that argument has never ever been wrong before.
posted by Pouteria at 5:04 PM on December 2, 2021 [7 favorites]

The underlying 'reasoning' is always the same: If there is no demonstrable physiopathology, it must be psychogenic.

I think that's too simple.

I recently read The Sleeping Beauties which is directly on topic.

The author makes the point that psychogenic illnesses are very treatable, and that some doctors, when pushing this diagnosis, are not doing it because they don't believe the patient is ill, but quite the opposite: they believe the patient is ill, they know the diagnosis, and have a cure.

As the book points out, it's unforunate that many doctors and laypersons don't understand this, and for them, "psychogenic" = "fake".

The book makes a good point - many people (professionals included) are enlightened enough to believe that illness has 2 factors: biological and psychological.

But they neglect the very important 3rd one: social.
posted by soylent00FF00 at 7:01 PM on December 2, 2021 [9 favorites]

I've followed enough reporting on Havana Syndrome from the "what the fuck is going on with these people" and much less the "what happened to them" to feel like it isn't a mass psychosis or something. And the tone of this article feels just a bit... off to me. But it was interesting to read, even if I don't agree with its hypothesis.
posted by hippybear at 7:05 PM on December 2, 2021

The Sleeping Beauties was published recently enough to deal with Havana Syndrome, and after reading it, I'm 99% in the camp of "it's psychogenic".

The thing is, the Havana Syndrome situation is the least weird of the scenarios the book describes. It's written by a neurologist, and she has a pretty good takedown of the other neurologists who wrote (apparently) crap papers saying they have evidence of 'brain damage'.

Also noted - in many situations, it's not unusual for the first person suffering the illness to have a "real" (e.g. purely biological) illness - e.g. someone got poisoned, or had a stroke, or got zapped by an experimental communist mind ray or similar. That's then the trigger, but everything that happens afterwards is classic psychogenic contagion.

N.B. saying some illnesses are psychogenic is not saying that all are, and it's unforunate that those ideas get conflated.
posted by soylent00FF00 at 7:16 PM on December 2, 2021 [2 favorites]

Sabine Hossenfelder on The 3 Best Explanations for the Havana Syndrome
posted by torii hugger at 7:17 PM on December 2, 2021 [1 favorite]

The author makes the point that psychogenic illnesses are very treatable, and that some doctors, when pushing this diagnosis, are not doing it because they don't believe the patient is ill, but quite the opposite: they believe the patient is ill, they know the diagnosis, and have a cure.

The other side of that coin is that if a doctor decides they think someone has a psychogenic illness (or functional neurological disorder, which is basically a synonym at this point) and believes they can cure it with psychological treatment, then they will of course just say the patient is resistant to treatment if it doesn't work. It's magic! If the patient gets better, the doctor was right (even if their treatment wasn't the reason for the improvement). If the patient doesn't get better, well, they have false illness beliefs, they aren't willing to commit to the treatment, if only they would believe they would surely get better, and so on. Either way, the doctor is always right and any patients who get diagnosed with a psychosomatic illness who actually have a physiological illness don't get any real treatment.

Most other illnesses, if the diagnosis is wrong, it quickly becomes apparent. But in these cases, there's not really any way to fix an incorrect diagnosis. And as others have pointed out here, medicine has a long history of diagnosing illnesses as psychological that turned out to be very clearly physiological. This systematic problem of course also prevents scientific inquiry into these illnesses, so no progress is made until someone breaks the mold.

I'm not saying that some people don't have real psychosomatic illnesses. But the way these are diagnosed and treated is not evidence based but rather based on unfalsifiable medical beliefs and causes significant harm to those caught up in an overly broad diagnosis.
posted by ssg at 7:24 PM on December 2, 2021 [14 favorites]

Disagree strongly that this article is thoughtful. It's mostly broad brush assertions with little evidence offered, just repeating other assertions, and it also seems off to me. It really amounts to a kind of victim blaming and maybe nothing to see here folks. What if the disinformation is telling us that discussing any other possibilities is disinformation? It smacks of throwing into a blender some loose historical facts and some speculations together with what is an admitted mystery and saying, there it can't really be anything anyway. It's one sided psuedo. Why is it any more credible that these people are all merely experiencing psychogenic illness than that there could be some other cause? I'm not saying this piece is necessarily meant to be smoke and mirrors - but this is exactly what it would like if it was.
posted by blue shadows at 9:16 PM on December 2, 2021 [5 favorites]

Verma, Ragini et al. “Neuroimaging Findings in US Government Personnel With Possible Exposure to Directional Phenomena in Havana, Cuba.” JAMA vol. 322,4 (2019): 336-347. doi:10.1001/jama.2019.9269, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6652163/

Among US government personnel in Havana, Cuba, with potential exposure to directional phenomena, compared with healthy controls, advanced brain magnetic resonance imaging revealed significant differences in whole brain white matter volume, regional gray and white matter volumes, cerebellar tissue microstructural integrity, and functional connectivity in the auditory and visuospatial subnetworks but not in the executive control subnetwork. The clinical importance of these differences is uncertain and may require further study.

posted by Ahmad Khani at 9:40 PM on December 2, 2021 [3 favorites]

these havana syndrome articles, podcasts, etc.. all have this incredibly lazy thread in common. the journalist invariably talks about the 1000 year history of mystery illnesses, the 20th century trope of commie ray guns, the "who knows?!" zeitgeist of 21st century social media, and maybe tosses in a reference to long covid, and voila, you have a 8000 word or 30 minute thinkpiece. yeesh.

the medical data is inconclusive. it would not be surprising if some, though perhaps not all, of these cases were caused by directed energy weapons. yes the cia is bad. so is russian intelligence, e.g. polonium projectiles and fucking nerve agent earl grey tea. that shit happened. also it's possible that once some cases were publicized, other cases that are psychogenic were lumped into the same category. and then it all became a culture war issue because, well, what isn't?
posted by wibari at 10:35 PM on December 2, 2021 [9 favorites]

Yes, exactly. Add blanket dismissals and unsubstantiated claims to the mix I listed above and it seems lazy and sloppy - and also at the same time crafted to bypass close critical thinking.
posted by blue shadows at 11:58 PM on December 2, 2021 [1 favorite]

The problem with the direct energy weapon hypothesis is that there isn't any evidence that such weapons exist. In the absence of any evidence, that hypothesis is essentially a conspiracy theory masquerading as a medical diagnosis. Pointing this out is not victim blaming. As the article concludes, "a narrative of state-sponsored paranoia has been allowed to win out over a medical narrative that might actually help people recover from their symptoms."
posted by thedamnbees at 6:54 AM on December 3, 2021 [2 favorites]

Reasons the paper is suspect:

* "after potential exposure to directional phenomena in Havana, Cuba" The null hypothesis here should be that it's psychogenic, not that there's some newfangled superweapon. The article presumes the weapon exists.
* "Among the 40 patients included, 12 had a remote history of concussion" - apparently none of the control group did (or their concussion status was unknown)
* "In total, 564 correlation analyses of volume (141 regions and 4 clinical measures), 2816 correlation analyses of microstructural indices (176 regions, 4 indexes, and 4 clinical measures), and 12 correlation analyses of functional connectivity (3 subnetworks and 4 clinical measures) were performed." - This is in a study with N=40 patients. They claim to control for Type I error, but I'm pretty skeptical.

etc.
posted by soylent00FF00 at 7:28 AM on December 3, 2021 [4 favorites]

The author makes the point that psychogenic illnesses are very treatable,...
posted by soylent00FF00

I am unconvinced they are even reliably diagnosable, let alone treatable.

The sobering reality is that methodological standards in this field are in the sewer, and far too much is being claimed on far too little robust evidence and logic.

In particular, there is widespread and remarkably persistent failure to adequately control for the various confounders that bedevil this kind of research. Relying on unblinded subjective self-report measures for trial outcomes is totally unacceptable, IMHO. It is not allowed in any other field of medicine or science, so why does this field get to grant itself an exception? Until that gets fixed there will be little actual progress, though an awful lot of hyped up claims to the contrary.

None of which says that psychogenesis does not happen, nor that it is unimportant. But at this point it is not a reliable & safe diagnosis, with effective & safe treatments, and may never be.

But they neglect the very important 3rd one: social.

Agree with that, including iatrogenic harm from incorrect psychiatric diagnoses.
posted by Pouteria at 8:04 PM on December 4, 2021 [2 favorites]

The null hypothesis here should be that it's psychogenic

That doesn't sound like a null hypothesis to me. It's presupposing something.
posted by hippybear at 8:36 PM on December 4, 2021 [1 favorite]

The null hypothesis that is is psychogenic is presupposing an absence of any particular physical cause. To which the alternative would be presupposing one or another physical cause that has never before been observed in action.
posted by moorooka at 1:54 AM on December 5, 2021

Surely the null hypothesis would be "something is wrong for these patients, but we don't know what it is" and not starting with any presupposition either way?
posted by hippybear at 11:05 AM on December 5, 2021

I mean, maybe we've reached a problem with the scientific theory when applied to brain issues because the brain is still such a black box to us. If you can develop a hypothesis and test for it and have it come back affirming, but also test for a different, maybe opposite hypothesis and have that come back affirming, then you've reached a limit to how well your testing works.

If the basis of any examination of this issue is "assume this is true" or "assume this other thing is true" and testing for that and not getting anything definitive to give real direction, then either the question being asked is wrong, or the method of testing is incorrect.
posted by hippybear at 11:32 AM on December 5, 2021 [1 favorite]

“Assume this is true” is what a null hypothesis does: if we assume a certain thing were true, how likely would we be to observe the given data? If the likelihood is sufficiently low, the hypothesis is rejected. That’s how the method works. A null hypothesis is never “it’s something but we don’t know what”.
posted by moorooka at 12:31 AM on December 6, 2021 [1 favorite]