Friday, February 27, 2015

Rawl's Disease ("Chartitis") kills thousands of patients

Unfortunately, it simply isn't true that today's nurses and doctors ignore the personality of their patients to focus on high tech instrumentation instead.

Many more patients would still be alive if only that was so.

Chloe Atkins' Imaginary Illness

Instead - as Professor Chloe Atkins' chilling memoir "My Imaginary Illness" (Cornell University Press) reveals, one can witness senior specialists and head nurses standing around a hospital bed yelling at a patient dying from a respiratory crisis to 'start breathing or get out of the hospital and stop wasting taxpayers' money!'

Even when the patient  is visibly unable to breathe and her vital signs on the dials before them are crashing.

That is because they have all read (and re-read) her decade old charts and her old charts claimed she was simply faking her disease and presumably (for the senior doctors and nurses rarely say) controlling the bank of medical machines by, in her disabled state, by sheer telepathy.

We indeed have a serious medical problem here.

 But it involves those oh so expensive experts we civilians are forced to trust in times of crisis , not the harried patient.

Rawl's Disease : Chartitis

Rawl's Disease (rather better known as Chartitis) is named after famous liberal philosopher John Rawls - a rare and signal dishonor for his much ignored academic discipline.

Thanks in part to to the intellectual pair of Descartes and Freud , humanity still tend to separate the diseases of human beings into two kinds - organic (loosed based on the unconscious body) and functional (loosely based on the unconscious mind).

We could survive this splitting up the whole of being if only we didn't also have the long line of liberal thinkers like Rawl and Mills to contend with.

They push hard their claim that we should be self-controlling and freedom-loving individuals, as if it was an already established scientific fact.

Our whole world - starting in the West - increasingly tries to 'do life' by Mills and Rawl's precepts and this can't but help influence our nurses and doctors.

Intoxicated with the fumes of the hard liquor of scientism, nurses and doctors 'lose it' whenever they come across medical cases where the list of visible and technical signs can't be assembled into a diagnosis and hence a treatment plan.

One of the joys of their business is never having to say you're sorry .

Never to say 'I am sorry but I am as baffled as you the patient, your family and friends ---- only paid a great deal more to be so baffled'.

Bafflegab of DSM replaces Bible for medical solace

Telling the truth simply won't cut it - pocketbook wise - so you reach into your handy dandy DSM bible, a tool for mental health professionals that ensures no matter how vague, fleeting and inconsistent the complaints a patient presents the health community with, a scientism-sound diagnosis can be made.

In the case of a patient presenting an inconsistent collection of physical symptoms with no apparent physical "organic" cause (say a leg paralyzed without the usual physical clues for organic paralysis) the DSM suggests a functional disease : its a psychosomatic condition.

That is to say her ( and it usually is a her, unless he is a foreigner or gay) unconscious mind has frozen her leg - probably as the result of an unnatural childhood affection for her long legged Barbie doll etc , etc.

Male doctors used to be able to label any female patient they were baffled by and disliked as a 'hysteric' but today they have learned to guise their old contempt in new babble talk.

Last week the term was 'conversion reaction' --- I do not know what this week's term is.

We can't - and we shouldn't - blame patients for the unconscious reactions of their mind.

But thanks to Mills and Rawls and patient self help groups and made for chat TV
cancer recovery memoirs, we do.

Medical Consultant Leni Reifenstahl

Just as clinician Dr Leni Reifenstahl opined all those years ago at Nuremberg, (with Mills and Rawls in sotto voce agreement) any right-living, right-thinking, right-gened patient should be able to control and beat her cancer, by a sheer triumph of the will over mere physical or mental weakness.

Those unable to do so were labelled - by Bomber Harris and the DSM - as LMF (lacking in moral fibre) and malingerers.

Malingerers is the word modern nurses and doctors still call patients they morally judge this way - it is the verbal term they used to describe Chloe Atkins for a dozen years amongst themselves.

But in print, in formal documents, they couldn't use such five cent words known by everyone who has ever watched a war movie.

So they pull out the kind of convoluted terms that lets a body pull down the big bucks -- terms like "Munchausen Syndrome By Proxy".

Thanks to centralized digital chart keeping , the early unsupported claims of Chloe's mother, doctors and nurses were kept on the charts sent to each new hospital her MG crisis put her in, no matter what province or state.

She tells a much repeated tale : of arriving at emergency dying from a failure to breathe, the doctors and nurses correctly reading her visible signs and the values presented  by the hooked up machines and giving the right drastic actions to save her life by getting her breathing again.

A made-for-TV medical drama with two wildly different endings - separated only by the arrival of old charts

A stirring made for TV medical drama with a happy ending - a life saved by medical staff who like and care about this patient as an individual.

Three days later, her chart arrives and as the staff read and gossip about it and her, they start to act cold, distant and hostile towards her.

They soon withdraw her breathing equipment so she will go home and stop wasting hospital beds and money.

They dismiss the machine readings and visible signs from the emergency ward only days earlier as a long series of errors and mis-readings.

They simply refuse to explain how drastic measures designed to save a person unable to breath got her breathing again and didn't simply kill her as it would most people simply 'faking it'.

Chartitis : trust the original diagnosis, not the current disease --- this woman simply willed her lungs to stop breathing because she wanted to have sex with her father or smally furry animals, as a wee small child.

MG (Myastenia Gravis) , Martin Henry Dawson and wartime penicillin

Now I am writing a book about a doctor (Martin Henry Dawson) who was diagnosed with the autoimmune disease Myastenia Gravis (MG) but who fought off his own body, his own colleagues and his own wartime government just long enough to bring us cheap available-to-all natural penicillin.

It struck me early on in Chloe Atkins' account that her drooping eyes and come and go symptoms of physical weakness should have alerted someone (in the literally hundreds of the world's smartest doctors and nurses who carefully examined or treated her) to the possibility she had an atypical case of MG.

In autoimmune disease, some unknown external stress causes the immune system of some of us to start attacking the body. Which part(s) that is attacked gives us the type of auto immune disease we have.

In MG, stress and over-activating our muscles attracts unneeded immunity agents to the chemical pathway that connects signals from our nerves to our muscles and they disrupt that pathway.

If we rest our muscles, relax (maybe even take counteracting medications) the immune system relaxes and stops sending out this agents (or likely, merely less of these agents) and we can more or less resume our carefully subdued activities.

This is not a degenerative autoimmune disase - one doesn't get worse and worse.

So many of us have had milder cases MG for years that we somehow cope with
 and never had it properly diagnosed.

But if the muscles most affected involve breathing and swallowing we will certainly get diagnosed if we survive long enough - because this can induce a minutes-count class 1 medical emergency - the patient breaths so poorly as to suffocate to death over a half hour period, if not given big hospital-level life-saving intervention right away.

I mention all this because I believe the MG crisis shares something in common today with the equally rare Meningitis crisis : yes today both are quite rare but both will cause certain death in minutes or hours if nurses and doctors have been well trained to respond instantly and correctly to a condition they might see only a handful of times in a career.

This is why I am so surprised and frankly scared to death , not that non specialists couldn't diagnose a complicated and atypical case of MG, but that they couldn't recognize a patent MG crisis when presented with one.

MG crisis kill two ways.

One is outright, in minutes.

The other is over a few years, because despite repeatedly surviving each MG crisis, the patient's lungs gets a little more permanently damaged each time.

I feel this is what finally killed Dr Dawson.

Now one might feel the arrival of Germ Theory might reduce the need for medical staff and society to blame the victim but it didn't - not anymore than blaming the Devil for illness reduced this near constant need to blame the patient for their illness.

Yes the Devil gave you this fever, but He wants to give all of us fevers - why then you not me ?

Because your wanton acts invited Him and His fever in.

Yes, tiny foreign germs gave you Strep Throat - but didn't you go out to an all night rave in early April, dressed in your short skimpy dress, talking too much and too long over the loud music - stressing your throat in the cold damp night air ?

Weren't you simply 'asking for it' ?

As a young male about Cloe's age when her disease first hit her, I did get Strep Throat that went to my kidneys, was barely able to walk, and then recovered from chemical imbalances so bad that they were literally feet off the machine-inked charts.

But I went on to suffer lifelong bladder cum prostate difficulties (basically a mildly painfully constant need to pee) that are always there but merely annoying and manageable .

This not something that happens when Strep germs lead the body to attack the kidneys (and this unlike MG is a relatively common disease) and I had no normal physical evidence to back my claim : no signs of bladder surface scarring etc.

A few doctors have suggested some form of mind relaxing pills but most say try not to try liquids after supper.

I have always been well treated by the medical system over my condition.

Perhaps because I was a male, and because unlike Chloe, my parents always warmly supported me.

I am a decade or so older than Chloe and moved around a bit as a child, so all my doctor's records and the hospital records seem to have been lost for the first 30 years of my life - including this key medical event.

So if any early doctor thought I was a malingerer, it failed to get conveyed to today's chart-trusting, instrumentation-distrusting 'evidence-based' medical personnel.

Back to Dawson to conclude our sorry tale : for Dawson shares his fame over two signal medical discoveries he championed.

He was the first in history to give injections of  penicillin-the-antibiotic, ushering in our Age of Antibiotics.

Dawson's HGT threatened profitable diagnoses into financial chaos

But a dozen years earlier he had been the first to promote  DNA HGT (he called it 'bacterial transformation') and Quorum Sensing and did much to promote attention to things like molecular mimicry and bacterial survival by variation.

He was cold shouldered by the medical and scientific establishment of the day - they feared even to raise his cause by denying it - it suggested to them a personal financial future dire beyond belief.

It was an age where the top medical people - then as now - get the big bucks and the prestige not from curing your disease but by telling junior doctors what your disease was.

The juniors were then left with the minor mopping up work - actually curing you.

Dawson threatens the Type-Casting of pneumonia

The new sub-science of immunology suggested that that the human body - somehow - could find a way to defeat everyone of a hundred slightly different strep pneumonia bacteria strains, if only given enough time.

But if a consultant could quickly 'type' the germ causing this or that patient to be dying of pneumonia as being of Type 56 (and typing simply couldn't be rushed) ,  the serum from the blood of a healthy horse previously given a mild case of Type 56 pneumonia could be injected into the bloodstream of the patient, to fight off the Type 56 until the human body learned to do so itself.

Dawson dared to say that while a disease might start off with Type 56 in the lungs , the process of HGT (bacteria exchanging bits of their unique DNA) could quickly mean (quickly as in 24 hours) that the new bug killing the patient was Type 11 !

Serum 56 would be useless, the patient would die before Type 11 was slowly re-typed and the high repute of the medical fraternity in the 1930s would sink to the patient's grave.

Best ignore Dawson - ignore his instrumentation values and trust the chart of the old familiar theories.

Better to blame instead the pneumonia victim, if he died, for being a middle aged crazy fifty year old who drank too much one weekend away from home and then shouted himself silly at his old college's football match in the cold harsh Fall air.

(True, it often did happen precisely that way, at least among the few middle class patients able to afford expensive serum treatment but I'd hardly call what they did a mortal sin justifying an early death.)

Balance and Complexity

We need to better balance our acceptance of complexity and that we are always  treating anew highly individual sick patients (a la John Rawls) not just monolithic diseases.

We must accept that their illness is the unique sum of their conscious mind, unconscious mind, their unique phenotype and only then expect to see them confronted by a hopefully somewhat standard external inducer* .

*But even here, mind always Dawson's HGT lesson  : that predictably nasty bacterial bug might be quite different today than it was last season....

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