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Out of sight, out of mind

Blog entry posted by anciendaze, Jan 8, 2012.

This common epigram can be traced to 1562 in English. Idiomatic ambiguity between distinct meanings, forgotten and insane, renders translation into other languages tricky. Even before computers became involved there was a claim of a student translation into Chinese as "unseen idiot". The relation between selective attention and personal or organizational insanity runs much deeper.

In the field of artificial intelligence there was a problem called the horizon effect with early programs which played games like chess. If the program was limited to a fixed depth of investigation it would routinely complicate matters so that it could not tell that it was doomed, pushing the problem "over the horizon". It would do this even in situations where it had good options for avoiding checkmate rather than just delaying the inevitable.

In statistics there are many errors in experimental design which can be grouped under the term "selection effects". Some examples are laughable. Others are very serious. (Bullet holes in aircraft which returned from combat mysteriously avoided the engines and cockpit, not because bullets avoided these areas, but because aircraft hit there did not return.) Blindness to neglected cases is notorious for producing selection effects. This can be amplified through indoctrination and social conventions.

Organizations can have local knowledge together with global ignorance. People within the organization know salient facts which are not reaching anyone who can correctly interpret and act on them. This may or may not have tragic consequences.

For a non-medical example, a "superquick" fuse on an artillery shell turns out to be so sensitive that it explodes when it hits large rain drops. In Vietnam this is a real problem, so it is withdrawn from service there. Stockpiled fuses are sent to a place where there is seldom heavy rain. On one day in a year when there is a thunderstorm a round explodes during a training exercise.

(This wasn't entirely bad. Trainees got a valuable lesson about trusting authorities who were not risking their own skins. It also illuminated the role of official investigations. Although I raised the question of the fuse type before the explosion, and it was my gun which fired the premature burst, nobody questioned me. Some mysteries are not to be solved officially.)

As the epigram states, the only requirement is lack of visibility. During medical examinations, this is possible at very close range. During searches for biochemical anomalies similar to those reported repeatedly in ME/CFS these three papers turned up:
Potent Induction of IFN-__ and Chemokines by Autoantibodies in the Cerebrospinal Fluid of Patients with Neuropsychiatric Lupus,
Neuropsychiatric systemic lupus erythematosus: Correlation of brain MR imaging, CT, and SPECT,
Association between microscopic brain damage as indicated by magnetization transfer imaging and anticardiolipin antibodies in neuropsychiatric lupus

This takes us to other studies which tell us it is well known that 2/3 of all lupus (SLE) patients show neuropsychiatric symptoms, and some die from neurological damage. Though data are confusing, nobody questions the organic nature of the disease. This takes me back to questions about clinical diagnosis. How is a patient with lupus (SLE) different from one with a primary psychiatric disorder, since virtually all symptoms are non-specific? A big clue is a large discoloration on the face, where it is difficult to hide. Another autoimmune disease with a striking clinical sign and neurological manifestations is scleroderma. Now we get to the punch line: if the initial assessment is mental rather than organic illness, none of the detailed laboratory tests are to be run.

Because of striking results from tests for anticardiolipin antibodies in patients with ME/CFS in one study I wondered why common clinical tests had not already found this. This took me back into the prehistory of those tests. The one I saw was a sensitive research assay developed for a different purpose, detecting a response to ciguatera toxin. When I checked on standardization of clinical anticardiolipin assays, I learned that responses in the low range on that scale had been reclassified as "indeterminate". Detailed laboratory data were being validated by how well they supported clinical opinions which were largely based on lupus or scleroderma, taking us back to striking visible signs.

This is far from being an isolated example.

Neuropsychiatric problems are also common in multiple sclerosis (MS). How do we know this is not a mental illness? Modern MRI scans will show conspicuous lesions, though these may not appear for years. How do you know to order a scan? This take us back to the clinical signs known as Charcot's triad: nystagmus, intentional tremor, telegraphic speech. These are all signs visible to the clinician, and generally outside control of the patient. Much more can be deduced by careful observation, but the operational distinction comes from damage to motor nerves. If the patient had comparable damage restricted to afferent nerves would a clinician decide this was a neurological disease? Probably not.

The major exception to that conclusion in MS is optic neuritis. This is extremely painful, and results from demyelination of the optic nerve which can be seen on MRI scans. It has a more accessible sign. A damaged optic nerve changes color, and this can be observed by looking in the eye at the place where the nerve joins the retina. Once again, we see that accurate diagnosis is made possible by convenient clinical signs.

Naturally, if you never run tests, there is no way to falsify the hypothesis of functional mental illness without clinical signs of organic disease. In patients such beliefs are called delusions. Doctors, we are told, are not subject to delusions, just as they are never subject to opiate addiction.
anciendaze

About the Author

As the name suggests, I am old and dazed. The avatar illustrates my rule of thumb: "Hang on! This ride isn't over."
  1. Purple
    With regards to the old lady who decided not to walk because of her falls: her decision could be considered very healthy and very rational. If she knows she falls and lives on her own, then the self-preservation instinct would dictate to avoid getting herself into situations which could become life threatening.
  2. Enid
    ancientdaze - not at all scientific - out of sight very much out of mind - I dig in the garden no thoughts of anything else except plants. Seems we must consistantly remind (well we have quite a presence) researchers of the need to solve this illness (probably many more in the process too) - concentration on a problem at hand usually produces the best answer.
  3. anciendaze
    Fear of falling is a valid concern for many elderly people. Just how valid in any particular case is hard to say when doctors routinely overlook evidence of orthostatic intolerance and cerebral hypoperfusion. It took me years to realize that all the tests (BP, EEG, EKG) run to find the cause of my episodes of "unexplained loss of consciousness" were run while I was sitting or lying down.

    In the case of one elderly woman who had a definite problem with falls there were ultrasound scans of her carotid arteries, also done lying down, because that was how it was convenient to do them. Another elderly woman had an elevated heart rate, possibly due to POTS. The solution was medication to lower heart rate, which reduced her blood pressure until she could barely stand. Both these tests and treatment decisions were based on mechanistic models of the problem without feedback. One was that the plumbing going to her brain might be clogged. The other was that her heart was racing for no apparent reason.

    What is missing is any awareness this might be an adaptive response to another problem. Doctors are acting like automobile mechanics. The heart is not simply a fuel pump that runs at a constant rate.

    Patients do become conscious of cerebral hypoperfusion. They learn to recognize the warning signs preceding a loss of consciousness. If you aren't measuring the relevant variable under those conditions you can become convinced the patient is simply imagining the problem.

    On the subject of genetics there is enormous confusion. Many problems said to be "in our genes" are considered the inevitable consequence of a kind of "player piano" model. Such defects are rare. Far more likely are defects in adaptation. In this case you could regard the genome as a complicated computer program with many levels of fallback and error routines. Simply removing the environmental cause which invokes a defective routine, or supplementing a missing chemical, may be all the patient needs. In many cases there are already genetic "programs" active in other circumstances which could carry out the needed function if they were invoked. (This is the case with adult-onset muscular dystrophy. Repair of muscle damage during childhood takes place normally, but when the body switches to adult genes at sexual maturity it activates defective ones. Resulting damage slowly accumulates, and the problem is generally diagnosed in the mid 20s.)

    Reports of genes causing particular problems are seldom followed by the hoped-for solutions. There are three big reasons: 1) we have a very incomplete understanding of epigenetic control; 2) genetic changes found in diseases may not be the result of Mendelian inheritance, which covers most genetic information active in health; 3) we are not even close to the level of understanding and control which would allow us to safely rewrite genomes of animals like humans.

    Sociology associated with diseases is a different matter. The "player piano" model serves social requirements for declaring this "not my problem". The three operative causes of such diseases are: 1) bad habits; 2) bad genes; 3) bad luck. I would suggest this triad has a time-tested name: bad karma. All that is needed for the medical profession to apply this is a set of diagnostic codes indicating this category, with appropriate subclasses for different suspected faults in previous lives. Perhaps this will be a coming attraction in DSM-6.
  4. natasa778
    My guess is that once ME/CFS becomes too hard to brush off as psychosomatic, there will be a big push to reclassify it as Genetic (caps intended). I can see it happening already. Some of those pseudoskeptic well-meaning scientists have already tried paddling various genetic theories on blogosphere those were intended to counteract theories of exogenous retroviral involvement, but could be easily tweaked to counteract theories of any other environmental causative (treatable and preventable) factors.

    I am not trying to say that genes play no role in diseases. That is a moot point. Everything our bodies does have a genetic basis, every time someone blinks to fend off dust particles that blink can be argued to be caused by genes. What I mean by classifying a disease as Genetic (cap G) it becomes No-ones Problem. This is why autism is described as Genetic simply because at the time of onset of symptoms a child is too young to be able to fake symptoms. The only other way, apart from psychosomatic, to make this disorder No-ones Problem is to call it Genetic. Even though, to borrow Alex's fine wording : They are [claims of Genetic causation of idiopathic autism] an unsubstantiated collection of hypotheses at best, which are justified by pointing to unsubstantiated papers which point to other unsubstantiated papers. Nowhere does it ground out in physical [statistical] evidence that is not problematic.

    This is why studies like this one send shivers down my spine. The potential for misuse of results is enormous not so much by authors, but anyone wishing to brush off ME/CFS as Someone Elses Problem. Be prepared.
  5. taniaaust1
    Im with what alex said above.... an elderly lady who falls all the time (esp if she lives alone), that indeed is a valid fear. Top that off with a bit of anxiety and one could end up with an extreme reaction (refusing to get out of bed).

    I wouldnt call that psychosomatic disease when there is a real risk she could fall (as she knows she often does) and easily break a bone.

    We need to take care not to judge others health situations (falling I'd say was a health situation) as we know ourselves how often we are misjudged and not believed to the extent of our issues.

    ......

    anciendaze. I thought that was a very good blog. thanks for sharing.
  6. alex3619
    Hi Carrigon, in the case of the old lady who had falls, she did have fear and anxiety I suspect, and for good reason. Neither are really a disease or disorder unless they are extreme. They are, in particular, not a psychosomatic disease.

    There is no doubt there is a connection between mind and body. That is so far removed from proving the mind causes physical disease. Now I think depression can make people physically ill, and so can anxiety. But what about nebulous "conversion disorders"? Having a universal cop-out diagnosis on the books, for which there is no physical evidence, is the biggest mistake in medicine to date in my opinion. It serves the doctors, and the institutions that service the medical profession, not the patients. Psychosomatic medicine either has to come up with some evidence it exists, or go for good in my opinion.

    Bye, Alex
  7. Carrigon
    As long as they can make money on profitable error, they will never really look to help us. We are the perfect patients, people who will never, ever be well. So that means tons of money for them in a million diagnostic tests, specialist visits, research (although at the moment, they don't get too much in research yet), medications to treat each symptom instead of figuring out the whole cause. They make money on deliberately diagnosing as a psych case. Then they get to have the patient go to a shrink and take psych meds. Anyway you look at it, they find a way to make money off this disease.

    If early AIDS patients weren't dying, they would have called it a psych disease for many, many years.

    I think some things are definitely aggravated by stress, but I think real psychosomatic illness is actually a lot rarer than they would like us all to believe. A high percentage of the time, there's probably an underlying physical cause. But I'm sure there are some real cases of psychosomatic problems. I saw one in recent years of an elderly woman who had fallen several times and had gotten to the point where she literally decided she couldn't walk anymore and stopped getting out of bed. It wasn't a pain thing. She was scared to walk because of the falls. She could move her legs just fine. She simply decided that if she was going to be at risk for falling, she wasn't going to get out of the bed again. No one could convince her to get up and walk. This would be more of a mental problem than a physical problem, although she truly was at risk of falling, she was still able to walk if she chose to do so. There are definitely all kinds of real mental illness out there, but in cases where someone comes into the doctor's office who was a very productive, active individual and presents with real physical symptoms like swollen glands, low grade fever, and blood tests that show a high white cell count and a bunch of other abnormalities, the patient should never be called a psych case. Especially if that patient is saying they want to get well and get on with their lives. That's the real difference with CFIDS/ME patients, we want to get well, we want to do things. We don't want to just sit or lay about being sick.
  8. anciendaze
    I have not argued that psychosomatic illness does not exist, only that the mind-body connection runs both ways, and resort to hypotheses which are not falsifiable should not be standard practice. If a doctor examines a patient without looking under shirt or blouse, a wild combination of reported symptoms such as Raynaud's phenomenon and gastroesophageal reflux disease (GERD) will commonly be strong grounds for considering the problem psychosomatic. Add in a particular type of skin problem and the diagnosis becomes scleroderma. Specialization has made the problem worse, as we may now have three or four specialists who each insist this patient is somebody else's problem. The system is exaggerating effects of individual diagnostic errors, not correcting them.

    The fracture Carrigon reports at least had a fall to blame. Other cases result in what have been called "march fractures" because they turn up in soldiers who can think of nothing but a long march to blame. These are real, but often difficult to find.

    For a parallel, consider diagnostic errors in automobile repair. The mechanic who replaces several expensive components which were not the cause makes more money than the mechanic who immediately finds the single rubber hose responsible. In a situation where complexity tends to overwhelm nearly everyone it doesn't require nefarious intent to drift into profitable error.
  9. Carrigon
    This is a prime example of our messed up world. When I was about thirteen years old, I fell in a dry creek and broke a bone in my foot, one of those small sesimoid bones. First xray supposedly showed nothing. Next few docs still couldn't find it, and inspite of the fact that the foot was extremely swollen, I was told the pain must be in my head, it must be psychiatric. I couldn't walk on the foot. Finally, I got a doctor through my monster uncle doctor, one of his specialist friends. However, he would only see me if I agreed to a bone scan test. This involved me getting a huge shot of some radioactive waste material, which I believe is partly why I have thyroid problems today, and a major cause of the sterility, too. Anyway, I was so desperate to get a real diagnosis that I agreed to the bone scan test. He found the fractured bone right away, and he said there were fragments in the foot, too, from it. So obviously, it was a REAL physical injury and not a psychiatric problem. I had gone months with severe pain, unable to walk on the foot. I had special shoes made for it and nothing was helping because I was trying to walk on a broken foot. And all the while being told the pain was in my head and it couldn't be that bad. This is what they do in the medical world. If they can't find whatever the problem is immediately, or they are too incompetent to run proper tests, they immediately label the patient as mental. This happened to me almost thirty years ago, and not one thing has changed in how patients are treated. The only thing that has changed is we have better imaging technology, and that type of injury would most likely be found alot sooner. But no matter what the problem, they are still doing this. If they can't find it, you are labeled a nut case.
  10. alex3619
    I do agree with local knowledge and global ignorance is a big issue. I also agree that if you don't look for something, my gosh, you wont find it. To my knowledge there has never been any physical evidence that clearly demonstrates psychosomatic disorders. They are an unsubstantiated collection of hypotheses at best, which are justified by pointing to unsubstantiated papers which point to other unsubstantiated papers. Nowhere does it ground out in physical evidence that is not problematic. Maybe we should be talking about some psychiatrists having delusionary thoughts about imaginary diseases? Maybe they need therapy.