Monday, January 14, 2013

Disability and disability advocacy in Greek mythology


Engravements show Thetis anointing little Achilles with ambrosia and then preparing to put him into the fire. Do not try this at home! Copied from the blog Finitor, the author is unknown to me.
(Bulgarian readers can read the post in Bulgarian here.)

I am now re-reading Greek mythology and I thought about how disability is represented in it. The most obvious example is the god of fire Hephaestos. When his mother Hera saw him after birth, she disliked him because he was weak and bad-looking. She reacted knee-jerk (but apparently with Zeus's consent) by grabbing the infant and throwing him down from Olympus into the sea.

If Hephaestos were mortal, he would share the fate of many weak Spartan babies and his story would have ended here. However, he could not die, no matter how much his parents wished to get rid of him. The fall resulted only in additional disability, making him lame. The sea goddess Thetis (more about her below) found him and took care of him. Hephaestos became a talented artisan, which allowed him to fit the stereotype of the “able disabled” and eventually to return to Olympus. As far as we know, none of his parents ever said "Sorry!".

More interesting is to look at humans in comparison to the anthropomorphic gods. The two population have similar appearance and behaviour and mate freely, hence belong to one species. There is, however, a minor difference: humans are mortal, while gods are not. It is small wonder that gods regard mortality as a disability and wish to cure of it the humans they love, mainly their children. (The child of a mortal and immortal is generally mortal; sometimes, for unspecified reasons, both parents are immortal but have a mortal child - the typical situation with disability in a family.) Zeus can confer immortality to mortals but uses this privilege exclusively for his own children, which motivates other gods to seek "alternative" methods to cure mortality.

One such method is to anoint the mortal child with ambrosia and to put him into a fire so that "to burn away his mortal spirit". If repeated again and again, the procedure allegedly confers immortality. In fact, two application of this treatment have been described - by Thetis and Demeter, and neither was successful. The goddesses claimed that the lack of success was due to interruption of the treatment by surprise intervention of a stupid mortal parent. If you wish, you may believe them :-). We know, however, how real-life alternative medicine practitioners just love to treat incurable conditions and when fail to cure the patient, attribute the non-success to other people's malice and to the hole in the ozone layer.

Thetis, the saviour and foster mother of Hephaestos, later married the mortal Peleus for reasons varying in different versions of the myth but certainly not based on love. The couple had a son - Achilles, the future hero of the Troyan War. The mother who had before shown so much selfless understanding and common sense to her disabled foster child, coped much worse when disability came home. She could not accept her child's mortality, dooming herself to spectacular parenting failure. To begin with, she began the fire-and-ambrosia procedure without telling the father. However, one night Peleus saw little Achilles in the fire and drew his sword against Thetis. Offended, she left the family home forever.

So far, the story seems to develop generally OK. Unfortunately, Thetis didn't sever ties with her son altogether but paid him regular visits that frustrated the formation of his personality. The boy imbibed from his mother the impression of being defective and ill-fated and grew up deeply unhappy (his very name means  “greef of the tribe“). When recruitment for the Troyan War began, Thetis tried to save her son by dressing him in female clothes and hiding him among young women (a situation bringing to mind the movie Tea with Mussolini). Finally, Achilles was found out and sent to the front but there again failed to cut his umbilical cord. Even the briefest summaries of the Iliad describe him as an infantile, egocentric, cruel and unrestrained mama's boy who thinks only of himself and reacts to every problem by going to Mommy, crying in her lap and asking for help. This is in apparent contrast with the noble personality of his antagonist Hector who was spared the poor luck to have a god in the family.

Long before these events, the goddess of harvest Demeter, while wandering incognito in search of her missing daughter, settled in the home of a mortal family and got attached to them. Wishing to do them some good, she secretly started to immortalize by ambrosia and fire the family's baby son Demophon. One night, the boy's mother saw her and reacted fiercely. Demeter stopped the treatment and the child remained mortal. In a more sinister version of the myth, the surprised goddess failed to take the little boy out of the fire in time and he burned to death.

In these two cases, we can see a pattern of traits known to us from the approach of present-day alternative medicine to disability: the treatment is applied exclusively to young children; it is considered efficient by those applying it, although there is not a single documented case of success; the treated condition is perceived by those having it as their trait, rather than a defect; it seems incurable and, moreover, if a cure was possible at all, it would mean replacement of the treated personality by another one (what exactly will remain of a mortal if you burn away "his mortal spirit"?); the treatment horrifies and shocks every unbiased observer; and not only doesn't it bring the desired result but also harms the patient and can even endanger his life.

Finally, Demeter found another way to help the hospitable family and the whole mankind. She gave wheat grains to Demophon's brother Triptolemus and sent him to teach people agriculture. The plant in question is usually translated as "wheat" or "corn" but most likely was barley - the main wheat culture in ancient Greece. The fact that Triptolemus rather than Demophon was chosen for the mission makes us think that the alternative treatment must really have been lethal. However, some good finally came out of Demeter's too-late wisdom.

By giving barley to mankind, Demeter didn't get in trouble because by this time Zeus and other gods had already recognized the right of humans to adequate nutrition and new technologies. However, when Prometheus gave fire to humans, the dominant ideology was very different. The Greek myth of Prometheus was assembled from three parts: the first sacrifice (most likely original Greek contribution), the theft of fire (borrowed from Caucasian mythology) and the flood (borrowed later from Sumerian-Akkadian epic). Reading the most popular second part, we can ask why Prometheus took fire either from the Sun's chariot or from the hearth of Zeus of Hephaestos, rather than using his own hearth (which he presumably had) or, even better, teaching humans on the spot how to light a fire. The answer is that his Caucasian prototype stole fire from gods for his own community and, hence, controlled fire as poorly as those to whom he was bringing it. In this version, the myth has psychological plausibility - self-sacrifice for one's own community is not rare and is encouraged in all cultures, especially early ones.

The Greek myth changes the culture hero's affiliation: he is a god, although second-class, and "steals" the fire from his community to give it to another one - the humans. Self-sacrifice for another community is much less common than for one's own and is not encouraged; in fact, many cultures, especially early ones, appreciate their members by the damage they inflict on other communities. Prometheus, however, had a personal reason to help humans, though this is never pointed out: while he and his wife were immortal, their son Deucalion was mortal. There are no data that the child was ever subjected to alternative-medical experiments. Instead, Prometheus addressed the real problem: that the community to which his son belonged was in a miserable plight and authorities insisted to keep things that way.

Humans, however, managed to start some animal husbandry. Zeus reacted to this by calling a "conference" to regulate the relations between mortals and gods. His idea was to force humans to make sacrifices (which had never before been done). This way, the meat would be offered to the gods, while humans would remain on vegetarian diet, plus the horns and hooves. However, when somebody had to show how to do the sacrifice, Zeus made a very poor decision, entrusting the task to Prometheus. The latter divided the sacrificed animal into two parts and offered Zeus to choose the better one for the gods. The first part included the nutritional stuff (meat and organs) covered by the unpleasant-looking stomach, while the second one was bones masked by fat. Zeus failed to see the trick in time and grabbed the bones, setting a precedent for future sacrifices. Angry, he declared that humans would never have fire. Prometheus, however, gave them fire and (in most versions of the myth) also other technologies. This time, he didn't get away with a suspended sentence.

The story has a sequel in next generation. Decades later, Zeus decided to make a flood with the usual excuse that humans were sinners. This was, by conservative estimates, his third genocide against mankind. Warned by Prometheus, Deucalion and his wife prepared a wooden chest and survived. After that, Zeus offered to fulfil a wish of them. His intention apparently was that they would wish immortality and this way he would get rid of the last couple potential founders of human population without staining his hands with their blood. From the viewpoint of a divine non-disabled individual, what else could be the dream of disabled people if not being cured from their disabilities and becoming like him? Zeus, however, should have learned his lesson from other similar cases that it is risky to promise someone to grant his wish because he may not wish what you wish him to wish. This was exactly what happened with Deucalion: he wished the Earth to be populated by humans again. Strangely, this act of self-advocacy made Zeus acquiesce and concede. While he continued to treat individual humans nastily, he never again tried to exterminate mankind or hinder its progress.

Thursday, January 10, 2013

Pakistani heroes fighting polio murdered by the Taliban

Photo: People carry the coffin of Lubna Mahmood (26), an aid worker. Copied from 3news, original source Reuters

About this outrageous crime, let me first quote the Jan. 3 3news report Pakistanis bury slain teachers, aid workers, by Inam Ur Rehman:

"Hundreds of villagers in northwest Pakistan turned out Wednesday to bury five female teachers and two health workers who were gunned down a day earlier by militants in what may have been the latest in a series of attacks targeting anti-polio efforts in the country.

The seven had worked at a community centre in the town of Swabi that included a primary school and a medical clinic that vaccinated children against polio. Some militants oppose the vaccination campaigns, accusing health workers of acting as spies for the US and alleging the vaccine is intended to make Muslim children sterile.

As mourners carried the coffins through the town for burial Wednesday, family and friends expressed horror that such an attack had struck their community.

"I told her many times at home `be careful as we are poor people and take care of yourself all the time,'" said Fazal Dad, whose daughter was among the seven killed. "And always in response she said: `Father, if I am not guilty, no one can harm me.'"

The group was on their way home from the community centre where they were employed by a non-governmental organisation when their vehicle was attacked Tuesday. The four militants on motorcycles spared the young son of one of the women who was riding in the van, pulling him from the vehicle before spraying it with bullets. The driver survived and was being treated at a Peshawar hospital..."

Below - the viewpoint of the world medical community, from the Jan. 5 Lancet editorial Global polio eradication: not there yet

"...Recently, the global effort to eradicate polio has suffered devastating setbacks. In mid-December, nine health workers were shot dead while travelling from house to house to administer polio vaccine to children during the national anti-polio campaign in Pakistan. And on Jan 1, six female Pakistani aid workers and a male doctor were shot dead... Owing to the safety concerns, the UN was forced to halt its participation in the vaccination campaign, and the campaign itself has been suspended temporarily by the Government of Pakistan and the affected provinces.

...Most of the health workers who were killed were women, and the youngest was a schoolgirl aged 17 years. Female health workers are standing fearlessly and selflessly on the frontline of Pakistan's war against polio, because culturally only women are allowed to enter into houses to talk to mothers and vaccinate their children. Last June, in Federally Administered Tribal Areas, the Pakistani Taliban banned polio vaccination in retaliation for the use of unmanned drones by the USA. It is of deep concern that women who stand for something big have become the Pakistani Taliban's target. Female polio health workers are one example; the schoolgirl Malala Yousafzai, whom the Taliban shot in the head in October for campaigning for access to education—another essential ingredient in promoting children's health—is another...
Heidi Larson, an anthropologist who studies public trust in vaccines and immunisation at the London School of Hygiene and Tropical Medicine, pointed out that the killings of health workers in Pakistan could be a “game changer”... She compared it with the 2003-04 immunisation boycott in northern Nigeria, led by religious and political leaders, who claimed that the oral polio vaccine could cause sterility. This boycott led to poliovirus not only rebounding in Nigeria, but also spreading to 15 African countries and to Indonesia...
To eradicate polio, the work that the brave polio health workers died for must be continued in 2013..."

Friday, January 04, 2013

I am skeptical about bumetanide treatment of autism

Let me first disclaim that, while I can publish enough scientific articles to match my job description, I do not consider myself really worth the honorary qualification of a "scientist". Nevertheless, I often use the opportunity to give my twopence on scientific subjects and on the use of science to make life better.

In the December 2012 issue of Translational Psychiatry, E. Lemonnier et al. published an article titled A randomised controlled trial of bumetanide in the treatment of autism in children. The team claims to have tested the diuretic bumetanide by a double-blind, placebo-controlled clinical trial on a group of 60 autistic children aged 3-11 and to have achieved significant improvements. The presumed mechanism of action involves GABA-ergic neurons.

My intuition says simple stuff given orally is, to say the least, highly unlikely to bring improvement in autism spectrum disorders or other conditions based on fundamentally different wiring of the nervous system. Any study reporting such improvement immediately switches my alarms on. And when I read the actual report, I typically find more alarm-switchers.

In previous years, I have written two posts on what I consider quackery concerning another condition - attention deficit and hyperactivity disorder (ADHD). My 2008 post I am skeptical about food additives - hyperactivity link featured the theories that ADHD was caused by "food additives" (?!) or TV watching. My 2011 post ADHD quackery in scientific journal, again addressed the idea to treat ADHD with restricted elimination diets. The stidies I criticized in these posts, similarly to the bumetanide treatment mentioned above, were all published in respected peer-reviewed scientific journals. Unfortunately, this doesn't automatically guarantee good science, let alone good ethics.

Let me cite these older texts. From the 2008 post: "Why didn't anybody try to conduct a study on animal models? At least, I cannot find such an article in PubMed. Animal studies are generally more standardized and hence more reliable than human ones. I know that in many countries it is easier to obtain a permit to experiment on humans than on animals, but still, why not get to the work seriously and do first the paperwork required and then the animal study itself? Why was the study done only on children, after hyperactivity problems, when present, are thought to persist for life? Is it because adults are generally happy with their own flawed selves but demand perfection from their children, relentlessly drawing the little ones to some superhuman standards of intelligence and behaviour?"

From the 2011 post: "People of science have a saying that extraordinary claims require extraordinary evidence. Any claims for successful treatment of a socially important condition are extraordinary... I would ask again, as I did in my old post, why wasn't the study done first on animal models? And if someone thinks animal models of ADHD are not satisfactory (i.e. fail to produce the crazy results wanted and expected by the researcher), why wasn't the experiment done first on adult volunteers with ADHD? Maybe because no adult, except some patients with much more severe diagnoses than ADHD, would agree to participate in such a study; but parents eager to streamline their disabled or just different children easily fall into the trap of wanting the child "either cured or dead"."

For the record, while none of the crazy hypotheses criticized in these two posts of mine has been specifically and inequivocally disproven, they have not been confirmed, either. The 2011 review by T. E. Froehlich et al. Update on Environmental Risk Factors for Attention-Deficit/Hyperactivity Disorder discusses a total of 26 (!) environmental factors seriously considered as contributing to ADHD. Most of these factors are ubiquitous, e.g. "Prenatal Caffeine Exposure" and "“Western” Dietary Patterns". Anybody with even rudimentary background and understanding of scientific research will immediately figure out that we are still deep in the woods. I would add that the only useful information in the cited review is the brief mentioning of "ADHD heritability estimates of 60% to 80%".

Double-blind, placebo-controlled trials are rightly considered the gold standard of clinical research. However, I am putting the bar for the gold standard higher. To satisfy my requirements, a study must also:

1) Be done on animals first, unless suitable animal models don't exist, and
2) For life-long conditions, include adult subjects, unless there are very strong reasons to believe that the proposed methods would not work for adults.

These two requirements were not met by the recent study on bumetanide treatment of autism. Explaining their hypothesis in the Introduction chapter, the authors wrote, "GABAergic signals are altered in autism as evidenced by the following: The excitation/inhibition ratio is modified in experimental models..." (5 references cited). However, to my best knowledge, the researchers never tried to test their working hypothesis on these models that so wonderfully provided argumentation to start an experiment on human beings. Also, the authors did not recruit autistic adults for their study. They recruited children aged 3-11. If their idea was to interfere with the full development of the autism spectrum disorder, they should have taken children between 1.5 and 4 years. At the age of 11, autism is considered as fully established as at age 20. Why, then, not recruit adults? I'll tell you why. Because it would be difficult to convince adults to volunteer for such a study, while many parents are happy to put their children through it. In other words, the study was based on the worrying tendency of parents of disabled children to make for their children choices that nobody ever makes for himself.