August 28, 2016

Packing Up Brain's Diseases of The Nervous System

My essays on gender bias in medicine are finished for the time being, as I pack up Donaghy’s Brain’s Diseases of the Nervous System and prepare canvases for painting. It may seem odd that an artist would read neurological textbooks, books on medical history and articles in law journals. But few people seemed to be questioning what appeared to me to be a basic misunderstanding of women’s health, and there seemed to be little to no redress for the resulting injuries and injustices. So I thought to squeak about it a bit.

Before putting these findings to rest, at least for now, I would like to make it clear that sexism, like racism, is an evil institution. As an evil institution it is not necessarily the struggle of man against woman per se. I can attest to this because in my research thus far, most proponents of equal treatment in health care for women were men, and I dutifully included their books and articles in my bibliography upon my last writing. A PDF file that was the most short sighted, and most potentially destructive to the health of women was in fact authored by a woman. Fortunately, woman on woman crime was not always the case as evinced by Professor Diane O’Leary’s scholarly articles and popular webinars on the role of misdianosis of somatoform disorders in diagnostic delay and denial of care:

The struggle for equal rights and fair treatment is a fight against a destructive ideology that may be shared across gender lines.

The text book that I found to be the most problematic for women with initially unexplained, and sometimes even explained neurological disease was, however, written by men. I had read Brain’s Diseases of the Nervous System back in 2013 and noted that the chapter on Psychologically Determined Illnesses was gender discriminatory and laced with a veritable plethora of antiquated pejoratives against women. The book was otherwise a rich tome of historical and scientific information. The chapter on reflexes was particularly fascinating and I had written about this subject at the time. As to the sexism expressed in the book, I did not attend to that back in 2013 because it came to my attention that I did not have the latest edition of Brain’s Diseases of the Nervous System. Times change and textbooks become updated with new information, and new evaluations. I will wait, I thought at the time, to obtain the later edition of Brain’s Diseases of the Nervous System, in order to check and see if the misogynous chapter is removed.

Three years later this giant textbook arrived through inter-library loan. It arrived in poor condition. The spine had been broken and was held together by rubber bands. I wondered to myself if this was perhaps an indication that the sexism remained intrenched in this heavy book. Had an irate nurse read Donaghy’s comments on "hysterical nurses," and reacted to it by stomping on the book? After checking out of the library and taking the injured textbook home, I immediately turned to the chapter in question. It had not been altered. It had just as many misogynist references as before. Oh well. He had his chance to rectify, tone down the rhetoric, make amends, and failed to do so. In this way Brain’s Diseases of the Nervous System became added fodder for my satirical drawings and wry writing. (I am at work now on a drawing depicting how a gender -biased medical professional might conceptually view a woman’s brain. )

How does sexism insinuate itself into mainstream medical literature and remain there unchallenged? And can it be changed? As usual, I looked to precedent to find an instance where a sexist remark in a medical text book was changed and how this was accomplished. A good case study here is Campbell’s Urology. In the 1978 -1985 editions, Interstitial Cystitis is included in a chapter entitled "Psychosomatic Conditions in Urology." Women were most likely to suffer from this disease which was described as follows:

"Interstitial Cystitis may present the end stage in a bladder that has been made irritable by emotional disturbance...a pathology for the discharge of unconscious hatreds."

Through extensive patient advocacy work and the Interstitial Cystitis Association, founded by Dr. Vicki Ratner, the description was eliminated from the 1986 edition of Campbell’s Urology.

It took many dedicated, rational men and women to get the emotional spontaneous generation theory of medicine for women removed from Campbell’s Urology. That was one comment removed with great effort. How much effort would it take to for the nineteen similar comments with regard to women removed from Donaghy’s Brains Diseases of the Nervous System.? It would depend upon good patient advocacy and some common sense neurologists.

August 25, 2016

"Its All in Her Head" Part Three: Misdiagnosis and Gender Bias in Medicine

Its All in Her Head: Medicine, Gender Bias, and the Misattribution of Somatoform Disorders- Part Three

My ongoing project, an illustrated treatise on factors leading to diagnostic delays in rare disease, is slowly moving forward. For most illustrations and essays, I devote one chapter per factor. But in the case of mistakenly attributing disease to character flaws, malingering or some other psychological origin, the outcry on the part of patients and their families was assuredly the loudest and most painful. Emotions on the subject run the highest for those who have had a loved one injured or killed by this mistake. For this reason I decided to look more deeply in to the matter and do some extra reading. A number of serious problems came to my attention. What a person such as myself, with no power or influence in the matter, can actually hope to accomplish by way of advocating solutions is problematic.

Phrenological Overlay 11" x 14" Pencil on Paper

A stand up comedian, who also happens to be an Ehlers-Danlos patient, once quipped, and I am paraphrasing here, that "doctors who have been brainwashed by a secret cult to believe that disease is spontaneously generated by emotions should be avoided." In studying the origins of somatoform disorder theories along with the arguments for and against them, my computer files and library shelves have become full of articles and books on the subject. Despite all these documents from learned professors that debate the pros and cons of these theories, nothing has ever measured up to that pithy barb by the comedian. Comedians have a special talent for reducing complex social constructs down to dense kernels of satirical observations. It is a powerful tool - enabling people to laugh while questioning entrenched authority.

My drawing, "Phrenological Overlay," visually encapsulates the words of the satirist; brainwashing, cult, spontaneous generation. The theories outlined within the head are displayed in juxtaposition with erroneous theories that had ardent proponents in years past; phrenology, spontaneous generation, Galen’s four humours, and the beliefs of the nineteenth century hydropaths.

Most nineteenth century phrenology heads are males in profile, the significant bumps in the skull outlined and labeled. For the overlay of somatoform theories on this model, I changed the gender of the subject. The reason for this is that women are believed to be ten times more likely, or to some, almost entirely, the gender to exhibit psychogenic, or somatoform illness. Many of these beliefs with regard to gender have been promulgated in part by studies that, upon closer inspection, are built upon conjecture and bias. One illustration of this is a Dutch study that gave questionnaires to both male and female patients which included a check list of so called "somatic" illnesses like headaches, body aches, etc. Although the questionnaire was given to both male and female patients, it included questions about menstruation. Since any affirmative answer (i.e. "Yes" to "Do you have painful periods?), was considered "evidence" of somatic symptom disorder, the test was inherently skewed towards women. Indeed, one could just as easily bend the results towards the male sex by giving a questionnaire to both sexes that leaves out female complaints but includes symptoms relating to prostate disease, or scarring from shaving a beard, etc. One has to wonder why "painful periods" or any painful symptom, for that matter, should automatically be attributed to psychogenic illness anyway, as the possible physical causes for such pain are myriad. But our researchers do not seem to be particularly bothered by that.

Other sources of bias against females can come from accepted authorities. For example, in the twelfth edition of Brain’s Diseases of the Nervous System, edited by Michael Donaghy, Donaghy authors a fifteen page chapter entitled "Psychologically Determined Disorders." In this chapter, these "psychologically determined disorders," are said to affect women almost exclusively. His phrases such as "predominantly women" and "usually female," are relentless hammered home, not once, not twice, but nineteen times over the course of a fifteen page chapter. It was particularly disheartening for me to read Donaghy’s evaluations coming down hard on nurses. I do wonder if he includes male nurses. Probably not. What is curious about this chapter is that there was no scientific substantiation for these conclusions, only what appears to be the subjective opinion of an authority figure - Donaghy himself. Thus a gender bias can become deeply ingrained early on in the careers of medical students, and perpetuated by those who interpret data through this distorted lens over the course of a career. No closer scrutiny. No questions asked.

Donaghy does go on to state, interestingly, that misdiagnosis of somatoform disorder is a possibility, but one that has been greatly reduced in recent years due to the advent of more sophisticated diagnostic tools. This is a classic example of how correlational evidence is misconstrued as causation. What we actually have is a claim that a misdiagnosis of somatoform disorder is unlikely in tandem with the observation that in recent years there have been more technological developments in the hardware of diagnostic medicine. One does not necessarily cause the other. Yet no other hypotheses for the purported decline in misdiagnosis has been considered. We may do well to evaluate alternative hypotheses for the claim that misdiagnosis of somatoform disorders is rare, considering that the American Association of Autoimmune diseases reports a misdiagnosis rate of illness being caused by psychological factors as being over fifty percent. And, as reported earlier, the Ehlers Danlos study recently reported a misdiagnosis rate of ninety-seven percent. These findings are in stark contrast to the often quoted Donaghy misdiagnosis rate of five percent. Clearly there is something amiss. And because misdiagnosis leads to lack of care, injury and premature death, it would be wise to consider alternative explanations as to why many in the medical profession believe that the misdiagnosis rate is too low to be concerned about, when other studies indicate that it is in fact alarmingly high.

The answer to the question may lie in how data on misdiagnosis of somatoform or other psychologically determined illnesses was collected. Some studies indicating a low rate of misdiagnosis were not studies at all but a consensus of physician self reporting. That would probably be as useful an evaluation tool as ascertaining the crime rate in a given country over the course of five years by tabulating the number of criminals that turned themselves in to the authorities over that course of time. Other studies conducted were a review of records on patients whose symptoms were initially attributed to psychological factors to see if at some point a physical cause was found which resulted in the initial diagnosis being overruled. There are two problems with that type of study: it is open ended in that it cannot account for the eventual discovery of physiological causation. It also does not account for the practice of adding on instead of replacing a diagnosis. In the latter case, all patients whose physical illness is considered a "co-morbid" condition to a psychological one are not counted. In truth, the only insight these types of investigations may have to offer is just how hard it is for a psychological diagnosis to be expunged from a patient’s record, as adding on a physical illness instead of replacing the initial psychological explanation virtually guarantees that the officially reported rate of misdiagnosis will be practically nil. On the other hand, the studies that demonstrate a high rate of error in misdiagnosing physical illness as psychological begin from studying patients with established conditions and tracing their histories back to the original misdiagnosis.

A persistent failure to account for initially misinterpreting physical symptoms in a patient as being psychological may not only have implications in individual care, but also in the way gender differences in disease manifestations in general are evaluated in research. Indeed, it may have played a subtle role in how a recent finding by Duke University was interpreted. Briefly, their findings demonstrated that women worsened twice as fast as men in cognitive decline in Alzheimer’s disease. These findings could be explained genetically or environmentally. When these findings were first published in 2015, no one offered a possible causal social factor; that a male patient complaining of cognitive and/or neurological problems would have his complaints taken seriously and attended to promptly, while a female patient with the same complaints would have these complaints attributed to psychological causes, resulting in delayed treatment and a more advanced disease state once these problems might finally be recognized as physiological. Of course these female patients would decline faster!

The nineteenth century system of phrenology, developed by Franz Joseph Gall, sought to map out a person’s psychic proclivities by reading the bumps on his head, then consulting a chart which explained which bump meant what depending upon where it was located on the head. Similarly, the theories of somatic symptom disorder rely on a diagnosis through arbitrarily assigned lists of "signs" such as chest pain, limb pain, headaches, dizziness, blurred vision, etc. - about fifteen in all. The more symptoms that a patient demonstrates from the list, the higher her score on a somatic symptom scale. The various words on the head in my drawing, "Phrenological Overlay," contains the popular acronym for Multiple Unexplained Symptom Patient, or MUSP. Other expressions; hypochondriasis, conversion disorder, somatic symptom disorder, functional, hysteria, bodily distress syndrome, are all in the same basic family. "Heart Sink" and "Frequent Attender," are the more pejorative terms that are purportedly still in use.

There are various schools of thought as to why so many terms abound to describe essentially the same thing. The patronizing view is that terms for illnesses believed to be psychogenic in origin end up becoming, over time, pejorative in vernacular usage. So newer, "cleaner" terms have to keep being invented so that these patients do not become the stigmatized victims of a coarse and crude world that "misunderstands" them. Others contend that the multiple terminology is a duplicitous attempt on the part of the medical profession to fool a patient in to accepting a psychiatric diagnosis because on the surface it doesn’t sound like one, although the meaning is clear to the doctor and every other colleague that reads the patient’s chart. This cover is invariably blown, however, when the "treatment" for pain and symptoms is a referral to a psychologist. Along similar lines of reasoning, still other historians of medicine contend that all these terms are continued attempts at keeping the quaint Victorian concept of "hysteria" alive, well, and conveniently cloaked in order for it to perpetually sneak in the back door of medicine. And then there is the ever popular "follow the money" theory. More psychogenic labels for more patients adds up to increased revenues from psychotropic drugs to swell the coffers of the pharmaceutical industry and end up eventually in the pockets of the CEO’s of said companies. And some contend that it is simply a well-oiled excuse to get out of doing extra work for patients with complex problems who would require more than five minutes of time.

My phrenology head includes three other phrases that bear explanation. The phrase around the eye, "Hypervigilance" refers to a patient being aware of her symptoms and having these symptoms take up an inordinate amount of time. How much awareness and how much time is involved in order for this to be considered yet another "sign" of somatic symptom disorder is up to the clinician to determine. I would have to say that the more severe pain is, the more aware one is likely to be of it. Chronic illness is time consuming. A diabetic has to be vigilant about blood sugar. A heart patient has to monitor blood pressure and diet. Some would call these behaviors pathological. I would call them responsible and normal. In his book, Saving Normal, the insider maverick psychiatrist, Dr. Allen Francis warns about the potential for the invention of somatic symptom disorder in DSM-V to pathologize normal reactions to physiological disease. This is why I have playing dice turned up to the number five in the four corners of my drawing.

The last two phrases, "Resistant to Reassurance" and "Refusal to Drink the Koolaid," are positioned at the front and back of the head. I include these because, in typical circular justification, an expression of skepticism on the part of a patient when told that her symptoms are psychogenic (or whatever term might be popular that day), is considered further "evidence" of somatoform illness. I could have used the term "skepticism" on the phrenology head, but local use of the idiomatic expression "Drink the Koolaid" is more colorful and darkly satirical.

The stylized water flowing from the top of my drawing, "Phrenological Overlay," alludes to the "brainwashing" first expressed by my comedian patient, yet can concomitantly refer to the nineteenth century practice of hydropathy. Hydropathy was invented by a German peasant farmer. It entailed, at least initially, running around an open field and taking cold showers at various stations. Hypdropathy expanded into a popular form of therapy both in Great Britain and the United States with established brick and mortar schools. To underscore how even scientists with a sound education and forward thinking philosophies can come under the spell of fads, Charles Darwin was an enthusiastic proponent and practitioner of hydropathy. Of course, considering the time in which Darwin lived, one cure was probably as good as another, and cold showers were most definitely one of the less invasive of these - beats bloodletting.

The remaining sections in the background of "Phrenological Overlay" refer to the four humors, first proposed by Galen in ancient Greece. These were; yellow bile, black bile, blood and phlegm. A disease state was thought to result from an imbalance of these four bodily fluids - hence the popular therapy of bloodletting. These fluids were also thought to be tied to human passions and behaviors, as evinced by the survival, but not often used, words such as "phlegmatic" to denote a slow and stolid temperament. Are there any ill-tempered people still described as "bilious" these days? Considering the fact that the old humors date back to ancient history, concepts of a body/emotional continuum is nothing new. Whether one speaks of old beliefs like spontaneous generation and the humors, or more newly minted magical thinking like somatic symptom disorder theory, the end effects are much the same: an untreated and oftentimes mistreated patient.

Are there solutions to what some say is a virtual epidemic of misdiagnosis of physical disease as psychological? There have been some proposed solutions. One proposed solution is to stop pharmaceutical companies from continuing to advertise their wares directly to consumers, with the assumption here that the problem is being fueled in part by consumer demand. I’m not certain that this is the major cause of the problem, though. And this would do little to stem the tide of overdiagnosis unless drug companies marketing to consumers is discontinued along with drug companies providing economic incentives for doctors, in the form of gifts and payments, to prescribe psychotropic and other drugs. (This continues to be monitored by the department of justice’s website ProPublica, Dollars for Docs). Another more radical proposal I have heard and once read about, is to do away completely with the profession of psychiatry and other professionals from behavioral sciences, blaming them for having mucked things up so badly in the first place for continuing to reinvent hysteria as a viable explanation for physical symptoms. That would be an absolute disaster though, for then where would people with serious illnesses like schizophrenia or bi-polar disorder go to seek help? And it is precisely often professionals in the field of behavioral sciences who may overturn a psychiatric diagnosis initially made by untrained or misinformed healthcare providers. There are, however, as the saying goes, "too many cooks in the broth." Not only can psychiatrists as well as psychologists make psychological diagnoses, but those trained in social work do. So do neurologists, as they are also board certified in psychiatry. As to the last class of diagnosticians, we can already see by perusing the aforementioned "Psychologically Determined Disorders" chapter of the neurology textbook, Brain’s Diseases of the Nervous System, what a debacle this is for women. The potential for misdiagnosis extends well beyond the traditional groups responsible for such evaluations, however. The American Medical Association is working hard to eliminate pain as a vital sign due to a misguided attempt at stemming over prescribing opiate based pain relief as well as to reduce negative patient reports on survey forms (i.e. "I did not get adequate treatment for pain relief"). At the same time, psychiatric evaluations are becoming more routine in patient intake evaluation forms. Many intake, or screening forms, no matter what the medical specialty, has a psychiatric evaluation section for the clinician to fill out. The dentist who examined my gum recession had to fill out a psychiatric evaluation section on the dental examination form. He was confused by it and actually asked me what he should write there. The technician whose sole training and responsibility was putting dilating drops in to my eyes had to also fill out a psychiatric evaluation section in my eye exam report. Why? One might as well have the person responsible for changing the oil in your car also tick off a few boxes on a form assessing your anxiety level as the expended oil is replaced with clean oil.

Compounding the psychological fishing expedition promulgated in many areas of health care, along with the discouragement from asking patients to evaluate their level of physical pain, or even report it at all, and the potential for error is profound. Any patient can be psychologically evaluated at any time by anyone in the medical system regardless of whether or not it is even remotely pertinent, and then have this evaluation become a permanent part of a patient’s medical record to taint all future evaluations. And if a patient happens to appear tense or irritable from pain that is not even considered in initial review, then a psychological diagnosis will prevail. To her credit, the previously mentioned eye drop technician noticed during her intake evaluation that I appeared very stiff and asked me if I was in pain. I told her that indeed I was in great pain from the muscle spasms in my upper back and neck due to my illness. I suppose that information is what made her decide to give me a clean slate on psychiatric evaluations. But there was nothing in her report about pain. There were no boxes on the evaluation form for that. The obvious solution here is to keep pain as a vital sign, and eliminate over screening for psychological illness by those with no training in this area.

One other possible solution to the misdiagnosis of psychogenic causes for pain and other symptoms would be to solicit the help and support of agencies who must foot the bill for these mistakes. Health care insurance agencies come to mind. It would be easy to make the case that psychogenic misdiagnosis costs them billions of dollars. This would include for instance, denial of timely biopsies which would have excised a cancer before it could take hold and spread. In these instances, the insurance company might have only had to pay for a local anesthetic and a pathology reading. Instead they had to pay for anesthesia, an operating room, and a hefty surgery bill. The same could be said for the patient accused of drug seeking behavior, missing entirely a slow growing brain tumor, or the patient accused of attention seeking behavior, delaying early intervention for a treatable condition and resulting in million dollar drug treatments. Or consider the patient who spent nearly two decades on disability, accruing medical bills due to being denied care on account of a somatoform diagnosis. In the last case, a timely, accurate diagnosis and a blood thinner would have prevented the accrued injuries and expense. These cases, and they are unfortunately legion, are as tragic as they are costly. Yet insurance companies and health care agencies labor under the notion that labeling hard to diagnose patients with psychogenic, or somatoform illness and subsequent denial of referrals for further testing is a useful system of triage that saves money. Perhaps someone, somewhere, somehow, can demonstrate clearly that this is generally not the case. It will take well documented case histories but in the end this may be well worth the effort.

Rethinking medical service and remuneration is in order. Most professionals such as lawyers, consultants, designers, and contractors, are paid when a service is rendered. The drain is stopped up, we pay the plumber when he fixes it. There is a hole in the roof, we pay the carpenter to fix it. Yet people with undiagnosed injuries will have to pay for a medical consult or an expensive ER visit regardless of whether the service of actually fixing the problem was rendered or not. I read of a patient who had been sent to the ER by her doctor not once, not twice, but three times, obtaining the necessary emergency surgery only on the third attempt. Everyone was paid, however, for the previous two ER visits. As Lawrence Afrin, M.D. pointed out in his book published earlier this year, Never Bet Against Occam, there is actually no economic incentive in getting down to root causes of medical symptoms when they require extra care or effort. Dr. Afrin does go on to explain how this iron rice bowl form of unearned rewards is what feeds in to handing out the "all in your head" or somatoform diagnosis so freely. It is an easy way to get out of actually thinking and doing work, and one that a "stressed" and overbooked clinician will be too tempted to eagerly embrace as a fail safe solution.

A clinician will be paid the same amount if he solves the problem, tries but does not solve the problem, makes no attempt to solve the problem, and even if he causes more problems through misdiagnosis. It has always been a bee sting in my brain that I had to pay the same to doctors who took time, problem solved, and worked hard on my behalf as to those who did nothing or were even abusive. It bothers me that conscientious providers pick up the slack for their lazier counterparts. In an improved system, there should be rewards for work well done. For now, my own sliding scale includes gifts, letters of recognition and thanks, donations towards research support, and perhaps a signed book for my hard working doctors.

Finally, some rethinking of how certain precepts are promulgated in medical training and medical literature with regard to the ease with which mislabeling physiological disease happens in the first place is most assuredly in order. Dr. Frances Allen considers this a daunting task, akin to a "David and Goliath" struggle. For now it feels more like throwing a teaspoon of reason against a tidal wave of irrationality.


Afrin, Lawrence B., M.D. Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity. Bethesda: Sisters Media, LLC, 2016.

Barnum, Richard., M.D. "Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms." Adolesc Health Med Ther. 2014; 5: 67-71. Apr 17, 2014.

Donaghy, Michael, ed. Brain’s Diseases of the Nervous System. Twelfth Edition. Oxford: Oxford University Press, 2009.

Ferman, J., Ham, D., " EDS World-Wide Survey: Presentation of Detailed Results." Webinar, EDS Awareness Survey, Cincinnati, May 17, 2016.

Finch, Michael. Law and the Problem of Pain. Cincinnati. University of Cincinnati Law Review, Volume 74. Winter 2005.

Frances, Allen J. M.D. Saving Normal An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. New York: HarperCollins Publishers, 2013

Hughes, Brian M. Rethinking Psychology: Good Science, Bad Science, Pseudoscience. London: Palgrave, 2016

Niemi, Laura. Young, Liane. "When and Why We See Victims as Responsible. The Impact of Ideology on Attitudes Towards Victims." Personality and Social Psychology Bulletin (2016): Sep;42
(9): 1227-42.

Pocinki, Alan G., M.D., "Pseudopsychiatric symptoms in EDS." Paper presented at the Ehlers-Danlos National Foundation Learning Conference, Providence, August 2 - 3, 2013.

Tadesse, MS, RN. Identifying and Treating Somatic Symptom Disorder in the Primary Care Setting. PDF Oregon Health & Science University

Webster, Richard. Why Freud Was Wrong: Sin, Science, and Psychoanalysis. New York: BasicBooks, a division of HarperCollins, 1995

August 23, 2016

The Book of Marvelous Cats is Launched

The work on my book You Look Great! Making Invisible Disease Visible: Drawing Out Ehlers-Danlos has slowed in recent weeks due to the need to proof my publication of a light-hearted book of rhymes for the cat, The Book of Marvelous Cats. It is a little odd to be working on something so strange and sad in tandem with a small humor book. I suppose that balance is a good thing, though. The first book requires nitpicking research, reading patient testimonies, and organizing information. It appeals to the scientist in me (Yes, I did study science in college before switching to art, and later to Chinese). The second book, the rhymes for the cat, only requires imagination and a sense of the ridiculous. The only thing that the books do share is my detailed pencil illustrations.

The Book of Marvelous Cats is now available to the public and today I celebrate that.
The book is available now on Lulu.  It should be available through Amazon in about six weeks!