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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, March 21, 2013

Medical Political Correctness Gone Wild

Happy Birthday to my sweet daughter!  You, my dear, are alive and well, after a h*ll that no one should ever have to go through.  It was because of you that I had the courage to start this blog adventure of mine.  It was because of your encouragement and belief in me that convinced me that perhaps I did have something to contribute to the world after all.  It was your courage that said, "Heck, yeah, you can write about me, I trust you!" that spurred me to write about the good, as well as the bad, in what is going on in medicine today.  You have been my encouragement since a tender age, even when I would say, "I'm the mom, not you!"  I forgot that I had written you a special letter when you started college, but you showed it to me one day years later when I was really upset with you about some trivial mother/daughter "thing."  I was shocked that you always carried it around in your wallet.  You told me that it had, indeed, gotten you through a lot of bad days.  The corny line that got you through the most however?  I'd written that "you are the wind beneath my wings." (Good grief!  How corny can a mom get?  Evidently, very!)

And so this post is dedicated to you because no one should ever be treated the way you were when you became so ill so suddenly.  And I am ever so proud that you were able to make it through what the rest of our family is still horrified about.  In your honor I started this blog and in your honor I want to write about that which unites us both on yet another plain: that of both of us having to survive some pretty horrid hospital experiences, ones which are just wrong and should make us stop, think for a moment and wonder, "is this what we want happening in our country?"

And so here we go...

Every doctor practicing today had to take quite a few science courses in college in order to get into medical school. This is a given.  Right?   Right.  Then why is it that many doctors are making decisions not based on the scientific method but rather based on whatever is politically correct at the time?  

As we all know, the scientific method is simple - but also effective - in establishing correct theories about science in general and medicine in particular.  First, one states a hypothesis and then observes what happens in the real world.  If the hypothesis explains the observations, it is a good hypothesis and stands until it cannot explain future observations, in which case, a better hypothesis is made. 

What is never done in good science is to ignore the facts in favor of keeping a belief or theory.  No matter how much you believe in a particular hypothesis, if the facts don't agree with it, you have to junk the hypothesis and get a better one.  Believing in a theory and ignoring the facts is worse than throwing out the baby with the bathwater.  It is throwing out the baby and keeping the bath water.
So what does this have to do with anything? 

Over the past few years I have personally witnessed political correctness trump good medicine and have read about health plans pushing treatments for various medical conditions, this despite good medical literature showing that these treatments don't work. (Note: in medical lingo, "good" means what we in the real world think of as "excellent.")  Here are some examples:

1. It is known that cognitive behavioral therapy (CBT) does not work for many patients with CFIDS/ME/CFS, particularly for pain and fatigue.  However, from what I read it is the preferred treatment by many third-party payers, probably because it is relatively inexpensive as opposed to, let's just say, Ampligen (poor, poor Ampligen which people have been trying to get through since the 1970's!) which HAS helped certain subgroups of CFIDS patients.  Furthermore, I personally think that it's a cop-out for doctors who have NO idea what to do with those severely affected by CFIDS.  And I do mean "cop out."  For shame.

2.  Similar to CBT in its ineffectiveness in helping CFIDS/ME/CFS patients is graded exercise.  However, graded exercise can actually make CFIDS symptoms worse since many CFIDS patients cannot tolerate exercise and their fatigue and decreased stamina worsen after attempting a graded exercise program.  Yet graded exercise continues to be touted as a legitimate treatment for CFIDS and is preferred by third-party payers. (Again, no better ideas, but let's give patients "something," even if it hurts them: let THEM be the failures and not "us.")

3. Aerobic exercise has been shown in some studies to help fibromyalgia patients.  However, one must understand that any fibro patient capable of exercising on such a level probably does not have severe fibro. When a patient with severe fibro, who may often have serious co-morbidities, such as growth hormone deficiency or DHEA deficiency, tries to do aerobic exercise and fails because of very low stamina that patient often feels like a failure and, to make matters worse, may be called "noncompliant" by the physical therapist or the doctor.  My rheumy told me that one of the first things he learned in medical school is not to blame the patient, but that is exactly what happens in this situation.

4. To make matter worse, too many medical practitioners often ignore the medical literature and when studies are brought up for discussion they often get defensive or are completely wrong...

  • When my daughter was extremely ill and dying, in addition to everything else going on, she started having severe myoclonic jerks right after her emergency life-saving surgery.  I asked her consulting neurologist, a full-blown attending at a "major medical center," one of the very best in the US, about her being prescribed Klonopin (clonazepam) to treat the jerking.  To my surprise and horror I was told that Klonopin CAUSED jerking, which is an absolutely false statement.  Given that I was still new at this "game" of digestive illnesses, the fact that I was still reeling from almost losing my daughter, and that I thought that surely I had my information wrong, I didn't question the doctor at the time but filed it away immediately.  Guess what: he was indeed wrong!   Klonopin is useful in seizures and in preventing myoclonic jerks.  I should have said something: after all, I've been taking Klonopin for nearly 20 years, yet I allowed this bozo to bully me.  Obviously, THAT wouldn't happen again.  In fact, it didn't happen again for the next five or six hospitalizations, which followed and I heard awful information, such as....
  • My daughter had had issues with her liver for many years -not from drinking, I assure you, as some doctors had insisted on believing before reading her history in the chart.  One day at the "major medical center," a doctor asked my daughter why she hadn't taken Tylenol for her pain.  Was he insane?  She needed REAL painkillers! Furthermore, if the huge amount of painkillers she was already on weren't taking care of much of the pain, what the heck was simple little Tylenol going to do?   But what was worse: I looked at him dumbfounded and finally said, "is  it wise for her to take Tylenol, given her history with her liver?"  He looked at me and said, "Oh those studies of liver and Tylenol have all been over-inflated.  We don't find it to ever be a problem."  Was HE on drugs?  (And I don't mean the legal kinds either!)
  • The medical literature is very clear about the protective effects of cigarette smoking when it comes to Ulcerative Colitis (UC).  Our local gastroenterologist had no problem discussing this fact with my daughter, my husband, and me but since the she was getting progressively worse by the hour, her GI insisted that it was time for her to be sent by ambulance in the middle of the night to a major medical center for a definite diagnosis and for treatment.  He, our local guy, who had trained with some of the best of the best at the "major medical center" had no problem seeing that there could be a correlation with the fact that she had stopped smoking just days before she showed her first signs of the illness, which led within a few weeks to her almost dying several times.  Her illness was a vicious, never-seen-before sudden onset hybrid of Crohns and UC but he honestly believed it was Crohn's and even said to her, "if I thought for a second that it's UC, I'd have you outside right now with a cigarette, but I really think it's Crohn's."  (Paradoxically, Crohn's is made worse by smoking, according to most, if not all, literature.)  After he had dispatched her to the "major medical center," seeing that she was SERIOUSLY ill, the various attendings would call it UC one day, Crohn's the next.  When I finally pointed out the smoking and UC correlation as perhaps a clue to what was going on, I wasn't just rebuffed.  I was looked at as if I were Satan incarnate and told I was crazy.  Really! 
  • It became quite convenient that two years later, once the nicotine patch was really "big," her newest GI physician at the "major medial center" suggested that she use it.  Ah!  Smoking but not smoking, if you get my drift.  Suddenly, nicotine was considered a factor and part of the treatment. 
My point is, how can good medical care be provided when legitimate medical findings are ignored and the scientific method is cast aside because of political correctness?

Russia was ahead of the world in the beginning of the 20th century when it came to genetics.  However, because of bolshevist/communist philosophy, where ideology wanted to ignore that "brains," for example, can be hereditary, genetics was called "the whore of capitalism," was thrown out the window, the proberbial baby with the bathwater.  I was shocked to learn this when I stayed in Kiev with family friends, where both husband and wife were physicians.  They couldn't believe how much knowledge I had of medicine in general and genetics specifically.  They'd brought out a genetics book for me to see, published now that the former Soviet Union had just fallen apart.  To my horror and their delight, I knew more of the conditions shown in photographs (such as progeria, acromegaly, etc.) than they did.  Let me assure you that this was NOT because I'm smart, but because I watched a LOT of Phil Donahue.  

This is what scares me.  Because of medical political correctness, will our country suffer the same sort of fate as what happened in the Soviet Union under Stalin?  

Anyway, this is my Happy Birthday post to my sweet, smart daughter of whom I'm so proud.  (What's a birthday greeting without the mention of Stalin?  Joke!)  V: you'll always be the wind beneath my wings: corny, but true. Thank God that you got to the "major medical center" and had a fantastic surgeon.  But thank God also, that you survived - despite some really cruddy so-called physicians.  May you live for many, many decades, happy and healthy!  You bring so much joy and goodness to so many. Happy Birthday and Многая Лета!

As always, I hope everyone's feeling their best, only better.  Ciao and paka! 

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  1. This article is so true.Healthcare has gone political. Gone are the doctors that tried to figure out what is wrong with you. There are so few of these professionals left. There are some just so few of them. If they try to help a patient that is "non compliant" then they are bullied by their peers. I have actually had 2 doctors do this to me. I live in the city in my Province and the doctors from home will no longer see me. They have helped me, god bless their souls, but they will no longer see me. Unfortunately the only way I can move forward is again, request my entire file, prove the inconsistencies, talk to a lawyer and negotiate proper medical care so I can have just a little piece of living. I know they can't fix me but a doctor is suppose to help their patients not hinder them. If I could just be heard ... it would knock down my stress a little ... then if a doctor could seriously come up with a plan, change if it doesn't work - and come up with someone we can both live me ... that is me and my doctor ... just a dream. Loud - that is all I can do is be loud and I know someone will hear me one day. This Canadian Healthcare needs to be fixed! Dollars are not the answer! Attitude is the start - public input not million dollar research paper .... Canadian input ; how to fix it!

    1. So sorry you're having such a hard time getting the care you need and deserve, having paid precious tax dollars for the care you might some day need. And that's an awful lot of effort you have to go through, especially when you're so ill. I wish you the very best of luck there. Try to go through it if you can. xx

  2. Totally agree! I can't get proper treatment .today. in emergency room was once again a frustrating experience . Hate thinking about patients who are afraid to speak up. Its all about $$. I know I'm not receiving proper treatment for my fibro sarcoidosis & even my n.h.lymphoma

    1. Oh no, Blair! Really? Again?
      And *you* know the system and how it works. Think about those who don't. They almost have no chance whatsoever!
      Prayers and positive thoughts being sent your way, as always. Thanks so much for reading and commenting. It's so appreciated! xxx

  3. I can hear you, Irene. That’s why before you go schedule a visit, researching about the doctor would be of great help. You get to learn the doctor's credibility and reputation. Anyway, I can say that you have wonderful insights regarding this matter, which only means that you can't get easily swayed by anything around you.

    Greg @TaylorMedicalConsulting.com