What the Heck are They Talking About: Neurological CFS

Should you take your Doctors Word for It?

As Alice in Wonderland once said, "words mean exactly what I want them to mean, nothing more and nothing less."

The fatigue part of Chronic Fatigue Syndrome is such a misleading term.

In fact, mere words seem quite inadequate when describing the exhaustion and post-exertional fatigue that accompany the very specific cluster of biologically diagnostic symptoms that define this catastrophic, nonpsychiatric, neurological disorder.

Listen very carefully and repeat after me, this disorder is not caused by psychiatric problems nor is it a dusty 1880s version of women's hysteria called neurasthenia. And with all due respect to Norman Vincent Peale, changing your attitude cannot cure you of this organic illness or any other including the heartbreak of psoriasis. Okay. Got it? Hold that thought.

As a result of this verbal inadequacy, what you say and what your doctor "hears" are not necessarily the same thing. The words tired and fatigue are little nats and noseeums to doctors. They just swat those words aside. They are considered "complaints" of a trivial nature.

So when asked about fatigue or tiredness, my stock reply is "profound, bone-crushing exhaustion."  In fact, I am quite assertive about insisting that "my words" be written down verbatim.

I had to learn this the hard way.

My treating doc (aka Angel of Mercy) arranges for moi to see a neuropsychologist for testing to see why I'm having so many cognitive difficulties:

poor memory (caused by pathologically slow brain waves see squiggles), inability to remember names of common objects (anomia), going from immaculate spelling and grammar to a complete inability to spell anything that cannot be spelled phonetically, merrily mixing and matching homonyms in my writing (orthographic dysgraphia), as well as the inability to count money or do calculations (adult onset acalculia).

In other words: The usual suspects and extremely alarming to a person who makes their living as a wordsmith (except the acalulia and it is rumored that all journalists have alcalculia. LOL.) The alarm bell there was a stack of overdrawn bank notices.

Q:Neuropsychologist (aka Sir Donkey-Bottom): So, what are you having trouble with today?

A: Me: ... I also have profound bone-crushing exhaustion.

Sir DB nods wisely and then wrote in his report: decreased energy. As for the rest of the Sir DB debacle, "Another day my pretty, another day." It is a horror story meant for flickering firelight and upturned flashlights.

In the meantime, I ask you, how much further do you have to go to feel less energetic than profound, bone-crushing exhaustion!

I could laugh it off as general doctor stupidity and simply roll my eyes with the same panache as my teenagers, but in this case not only were the words knowingly substituted, but so was the entire meaning! As a patient, and as professional journalist who deals in accuracy, I find it highly offensive with a slight tilt toward malpractice.

What I discovered was that "decreased energy" is psycho lingo for symptoms of depression. Hmmm, not surprised are you? However, once again, I ask you, does "profound, bone-crushing exhaustion" sound like the words "decreased energy" to you or any other reasonable person? Are you aware of any dictionary that would define profound, bone-crushing exhaustion as decreased energy?

(Sinister musics plays softly in the background) Or, was my doctor ignoring my very specific description to suit his own pre-formed judgments and prejudices?
Maybe Sir DB is merely one of those self-absorbed people who, if they are not experiencing what you are experiencing, immediately and with utter conviction declare you a liar?

Hmmm...Kind of like just because a man doesn't have a uterus and can't see mine does that mean there is no such thing as a uterus? Or the man who asks, "How much can having a baby really hurt anyway? You are over-reacting!" Sorry guys, I can only relate from my personal experience and I am what I am.

Speculation aside, the end result was that Sir Donkey-Bottom knowingly substituted psycho lingo designed to create a false, unsubstantiated, psychiatric record with me in the starring role.

The result: I have been forced to go through numerous Psychiatric Consultive Examinations by SSDI drones for over four years now without receiving so much as a dime of compensation for the legally and objectively proven, neurological illness that disables me. Oh I am so sorry, I thought I might have sounded a tad irritated there for a second.

Now THAT is DEPRESSING! And given the current 2006 budget projections that will change to homeless if good 'ol American justice doesn't get a move on.

In my personal experience with Chronic Fatigue Syndrome and Fibromyalgia, psychiatrists and psychologists are the most likely to outright lie, to omit key evidence and to knowingly substitute psychiatric rheotoric having a completely different meaning from the words  you used.

And it's okay for me to say this because some of my best friends are psychologists. No really, I'm not just saying that, one of them is even related to me. I swear I'm not a liar. Hey, where did you get that report from. I thought I shredded all those records. Hey, don't you dare go near Social Security with that!

Do words and their meanings really matter? They do when the substitution results in a fictitious psychiatric report. I don't believe British playwright William Shakespeare ever met Sir Donkey-Bottom because of the time warp factor, but if he had he might have quothe:

Good name in man and woman, dear my lord,

Is the immediate jewel of their souls:

        Who steals my purse steals trash; 'tis something, nothing;
        'Twas mine, 'tis his, and has been slave to thousands:
        But he that filches from me my good name
        Robs me of that which not enriches him
        And makes me poor indeed.

                - William Shakespeare, Othello, Act III, Scene III; [Lago to Othello]

A rather poetic way of describing libel don't you think? For our libel laws are based in English Common law which gives each person the right to their "good name."  Is your "good name" dependent on the words others use? Darn tootin'!

It is unfortunate that in the society we live in, people are marginalized when psychiatric allegations are made, but it is all too common. Patients can and do lose their "good name" to psychiatric stigma, true or false. It is a form of prejudice embedded in our "common wisdom." This goes along with the myth that if a doctor (preacher, law enforcement officer, rabbi etc) says it, it has to be true.

If there is a conflict between a doctor's word and that of the patient, the doctor is automatically accorded the status of "right," and the patient the status of "liar" in our society. Interesting that the person who cannot actually or personally verify your experiences because they don't have them, is considered the expert? Sorry folks, I'm not buying and you can just take that bridge model with you on your way out.

It isn't right, it isn't fair, it isn't necessarily legal or even logical, but it is a problem that exists in plain sight. But, most of us don't want to rock the boat. SHHH don't say a word.

Are there ways to combat damaging word choice? Can the damage be wiped away as if it never happened? You tell me.

Whether your goal is legal remedy or societal remedy here are some of the practices I have put into place.

1. I never see a new doctor without a witness no matter how nice they seem even if they are supposed to be on my side. Much better to be safe than sorry. Make sure you take someone you are comfortable enough with to take into the examination room with you.

If the doctor refuses to allow that, you might then examine whether the doctors refusal is a huge red road sign saying,

"RUN LIKE H E DOUBLE TOOTHPICK!"

No matter what doctor you see, and what decisions you make, make sure you get copies of all of your medical records including test results. Some doctors do charge for this service, but the fee is limited by law to their actual costs. 

For example, if you find someone's elses blood tests in your files (that would have been Sir Donkey Bottom #2), chances are more than average that that isn't the only inaccurate and or misleading chart not (Say, yeah, oh yeah).

Noting errors in your file and requesting that any misleading information be removed or rectified is not the same thing as accusing someone of high treason. A professional office will make every effort to remedy the situation.

But first, no matter what, always, always take the high road. As a journalist I can tell you it is possible to blow someone's doors off and be reasonable and courteous at the same time, but its best to leave their doors intact until you are given no other choice. Catch more flies that way.

Sometimes a misunderstanding is just that: a misunderstanding. Doctors are busy people who make mistakes just as we do and it could just as easily have been a staff error not a doctor error. Survey seeeezs ...What percentage of workers are telling the truth when they say filing is their life?

2. Even if you are inclined to let the "little" stuff go, if there are more serious errors, errors that can result in misdiagnosis, seriously consider challenging them.

When deciding what and when to challenge, do take into account whether you will have a continuing relationship with this doctor or office, whether you are dependent upon them to document disability and whether they have the means to retaliate. This may sound like an exaggeration, but any doctor who is willing to bend the truth may be willing to do much more than that.

3. If Dr. Donkey-Bottom was a referral from your treating physician, discuss the problem with your treating doc. Sometimes a quiet call from the referring colleague can set things straight right quick.

4. If you decide to challenge errors on your chart, put it in writing and make copies. (Always send all paperwork by registered mail. You can never have too much legal documentation.)

First challenge all factual errors and document the proof showing that it is an error if you can obtain such documentation. Correcting simple errors sets the stage so that if you need to challenge wording or assumptions, you have already established that the documentor is careless with facts.

(An example, and yes this really happened, would be the man whose doctor listed him as receiving a dishonorable discharge from the Armed Forces when he had in fact received an honorable discharge. Proving it was a simple matter of providing legal copies of his discharge papers. It also gave him leverage to combat his doctors' conclusions and ill considered opinions)

5. If communicating with the doctor or the doctor's office manager produces no results, each state has a medical licensure board. Some take patient complaints more seriously than others. None of them care if your doctor was rude, but they will take a look at documentation of a misdiagnosis resulting from carelessness or distortion.

There is nothing exciting about this step. Judge Judy it isn't. It is time consuming and tedious and many times the doctor might not get so much as a slap on the hand. But, if enough people make legitimate, well documented complaints it does add up.

Helen Keller summed it up in this way: "I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do."

Remember hurricanes start one drop at a time, and you have my word as a southerner on that.

libel
li·bel
noun  (plural li·bels)
1. law defamation: a false and malicious published statement that damages somebody’s reputation. Libel can include pictures and any other representations that have public or permanent form.
2. attacking somebody’s reputation: the making of false and damaging statements about somebody
3. law written statement: the plaintiff’s written statement in a case under admiralty law or in an ecclesiastical court
transitive verb  (past li·beled, past participle li·beled, present participle li·bel·ing, 3rd person present singular li·bels)
1. defame: to publish false and malicious statements that damage somebody’s reputation
2. attack: to give a false and damaging account of somebody
3. law bring a suit for libel: to bring a suit for libel against somebody under Admiralty law or in an ecclesiastical court
[14th century. Via Old French from Latin libellus  “little book,” diminutive of liber  (see library). Originally “written declaration,” later “something setting out the grounds for a lawsuit.”]

 

Fatigue: the tip of the diagnostic iceberg

For many of us, getting an accurate diagnosis of CFS / CFIDS / M.E. is a time-consuming, difficult and yes, fatiguing process.

Proper diagnosis of CFS / CFIDS / M.E. requires comparing a patient's symptoms with the health condition's accepted case definition and excluding other illnesses with similar symptoms. And by excluding, I mean using illness-specific criteria that don't include everything but the kitchen sink. The looser the diagnostic categorization the more likely the misdiagnosis of this bio-medical neurological disorder.

Let's start with fatigue. You can't get much looser than the term "fatigue". The word fatigue in our society is applied to anything from the delicious tiredness that comes from a day full of active fun to the profound, bone-crushing exhaustion caused by serious illness. In the medical sense, fatigue is measured by persistence and pattern. Undifferentiated, the medical symptom, fatigue, is common to many grave and not-so-grave illnesses. Without differentiation, the term is diagnostically useless.

A good example of this is the Oxford Criteria of CFS, developed in 1991 by British psychiatrists Simon Wessely and Michael Sharpe. The Oxford Criteria defined CFS as a "syndrome in which fatigue has been present for at least six months, during which time it has been present more than 50 percent of the time". By simply requiring prolonged fatigue for a CFS diagnosis, the Oxford Criteria allowed a broad variety of psychiatric illnesses to qualify as CFS and supported the premise of the authors that CFS is actually mass hysteria resulting from a personality disorder and can be treated with a program of graded exercise.

No wonder the Oxford Criteria has yet to be medically validated more than a decade later and has since been superceded by more refined definitions as the biological evidence piles up.

As Susan Sontag notes, "...Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease.....".

In 1994, a new criteria was drawn up by the U.S. Center for Disease Control 1994 CDC / Fukuda CFS Criteria. This definition included the earlier requirement of the presence of new-onset fatigue lasting at least six months, but it went a step further by also requiring the presence of at least four of eight other physical symptoms. "A case of the chronic fatigue syndrome is defined by the presence of the following: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities; and 2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue: self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours."

Although more narrowly defined than the extremely loose Oxford criteria, the optionality of other cardinal physical symptoms of CFS kept the diagnosis focused on the broad and imprecise symptom of fatigue, distorting the overall biological pattern of this neurological disorder. The 1994 Fukada criteria, superceding the even vaguer 1991 Oxford Criteria, was intended to make sure researchers were testing the same populations; but as a precise diagnostic tool it remained tantamount to driving a finishing nail with a sledge hammer.

Enter the 2003 Canadian CFS/ME Clinical Working Case Definition. Developed by an international CFS team of treating physicians, teaching faculty and researchers this 2003 definition is "real world" and reflects an on-going accumulation of biological research and evidence. As the authors of the Canadian report write, "The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory."

What does this mean in terms of creating a new standard for clinical diagnoses? Well, first off it defines "fatigue" more precisely. CFS/ME is now more narrowly defined by post-exertional fatigue. The difference? Unlike fatigue from which people recover, post-exertional fatigue is pathologically delayed recovery. While fewer patients may meet this criteria, the chances of being misdiagnosed are significantly less.

The 2003 Canadian Definition also states that cardinal symptoms are no longer optional and that patients must have neurological / immune and/or neuroendocrine manifestations such as orthostatic intolerance, vertigo, loss of thermostatic stability, and worsening of symptoms with stress. Finally, with the 2003 Canadian Definition a precise biological pattern is being constructed, and as the criteria becomes more stringent, fewer people are being misdiagnosed.

Thankfully we have evolved far beyond the earlier definition of CFS as simply involving vaguely defined fatigue. Yes, the fatigue those of us with CFS experience is horrific, and is not to be belittled. But as the sole diagnostic criteria it is not enough, not by a long shot.

Note: Marilyn Kerr, RN writes about the importance of diagnostic codes, not only for diagnostic purposes, but to accurately and effectively document patient statistics. The article was written in 2001 and thus does not include the latest changes. Kerr also refers to fibromyalgia, which is further clarified by Margaret Williams in 2004. More on ICD diagnostic codes can be found at http://virtualhometown.com/dfwcfids/cfids/classified.html.

Psychiatric footnote from Kate:

It should also be noted that the World Health Organization 1992  ICD-10 index and subsequent revision code CFS/ME "chronic fatigue syndrome" at G93.3 in the chapter on the nervous system and the category "other diseases of the brain," specifically forbidding its categorization under F48.0.This is a huge change from the ICD 9 classification system drawn up in 1975 by the World Health Organization (WHO) which, allowed CFS/ME to be listed as the equivalent of nueresthenia at F48.0 in the category "neurasthenia," a designation which specifically excludes code G93.3 illnesses.

On 23rd January 2004, Andre l'Hours from the WHO headquarters provided the following clarification (in writing):

"This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization's International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive".

l'Hours  also confirmed that the

ICD classifications (for ME/CFS) are approved by the World Health Assembly and therefore take legal precedence over *unapproved modifications* made by a WHO Collaborating Centre.

<>

The Collaborating Centre making these unapproved modifications is based at King's College UK. Home of Professor Wessely and the psychiatric lobby.

ME/CFS are both classified by the WHO Headquarters in Geneva as diseases of the central nervous system and not under mental and behavioural disorders (F48.0) as has been incorrectly stated and promulgated by WHO Collaborating   Centre, King's College UK.

 

Are you at risk: Insulin Resistance

It sounds like a riddle, but determining when a symptom is a symptom of CFS or Fibromyalgia and when it is a symptom of complications stemming from these two illnesses is no joke.

Up until recently, the most common approach was to see if you have diseases or conditions that ruled out CFS or Fibromyalgia. Now, however, more and more research is showing that many conditions co-exist with CFS/FMS or are actually the result of imbalances caused by these two illnesses.

Insulin resistance (IR) is one of those conditions. Insulin is the hormone that regulates blood sugar levels and IR refers to the state where an unusually high level of insulin is required to keep blood sugar levels under control. In other words, IR is an impaired metabolic response to our body’s insulin.

Insulin is also key to transporting the glucose manufactured by the body after eating to the mitochondria to be turned into energy. With IR, the mitochondria are denied the glucose necessary to manufacture energy. IR also causes excess glucose to deposit as belly fat. In short, you become a fat slug.

This metabolic cascade can further lead to type II Diabetes and greatly increases your risk of a heart attack.

My first clue was my weight gain. I knew I was steadily gaining weight, but chalked it up to my inability to be as active as I once was, not to mention all those cute little pills that have weight gain listed as a side effect.

A random glance in the mirror one morning followed by the thought, "Good grief, I look five months pregnant", set off an alarm in my head. People’s body types are often compared to fruit and I had always been a classic "pear", putting my weight on my hips. I’d never been an "apple", where all the weight goes to the belly. Suddenly I realized I had morphed into an "apple". It didn’t make sense genetically, so I started researching medical reasons.

Verifying my apple figure was a matter of measuring my waist an inch above my navel and then measuring my hips at the widest point. I then divided my waist measurement by my hip measurement. A ratio over 0.8 for women and over 1.0 for men is considered unhealthy. (I also have a body mass index over 27.)

I don’t have all the symptoms of course. My tilt table results had proven that hypertension (high blood pressure) is not one of my problems! I have no family history of diabetes either. What I do have is high cholesterol as well as a low HDL level and elevated triglycerides.

If you have any one of these risk factors, you need to discuss the situation with your doctor. There are a number of blood tests that can be done and medications such as Glucophage, which prevents blood sugar levels from rising so high.

In the mean time, try a low calorie, low glycemic diet. This means avoiding foods that cause your blood sugar to rise quickly. Foods such as flour products, refined corn products, and sugar added products should be eliminated from your diet. You can, however, increase foods such as vegetables, beans, nuts and seeds. You can also eat fruits and root vegetables such as potatoes and carrots as long as you eat them with other foods. Yes it is hard, but life is actually worth living even without bagels.

CFS and Fibromyalgia are not life threatening by themselves, but the medical complications are very real and can be life threatening. Don’t take chances, talk to your doctor.

Devin Starlyn has a wonderful fibromyalgia site and I gathered quite a bit of my information from her website.                                                                         

Originally posted on RemedyFind.com June 2004
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Friends and Family: The Good, Bad, and the Ugly

- The great gift of family life is to be intimately acquainted with people you might never even introduced yourself to had life not done it for you.
                                                                               - Kendall Hailey

I will never forget Christmas Eve 2002. For that was the night my dearly loved best friend and sibling told me I was “crazy” and that this most beloved person was cutting off all contact with me from that moment forward. And it was done. This person also lobbied hard to convince other close relatives that I was psychotic, not ill, and not to listen to me.*

This was one of what felt like hundreds of stab wounds of varying depths of betrayal at the time. Friends I’d known for years no longer responded to my emails, former work colleagues avoided me.

Of all the “deaths,” dealt by nonpsychiatric neurological Chronic Fatigue Syndrome (CFS/ME) and Fibromyalgia: loss of health, loss of energy and vitality, financial losses, loss of credibility, loss of work I loved; the loss of friends and family was perhaps the most devastating.

At that time, it truly was the totally unconditional love of my three children, and their calm acceptance of what was right in front of their faces, that kept me on this earth.

In his book, "When Bad Things Happen to Good People," Rabbi Harold Kushner writes,

"At some of the darkest moments of my life, some people I thought of as friends deserted me—some because they cared about me and it hurt them to see me in pain; others because I reminded them of their own vulnerability, and that was more than they could handle. But real friends overcame their discomfort, and came to sit with me. If they had no words to make me feel better, they sat in silence (much better than saying, 'You’ll get over it', or 'It’s not so bad; others have it worse') and I loved them for it."

My sibling finally re-established communication with me on my birthday a year later, but has never apologized as this person does not believe they did anything wrong or damaging; and the relationship remains distant and strained, as do many of our family relations.

And although I lost many relationships, some friends and family stuck around, not because they understood my illness, but because they loved me. Life has gone on, as it must.

I have tried to make sense of this boondoggle for years now and finally concluded that as we change and grow some relationships fade while others grow stronger. I would even venture to say that it has nothing to do with being ill, but rather is an inevitable continuum present in the lives of all of humanity.

Many people have a great deal invested in the people in their lives remaining the same so that they can remain the same. Life doesn’t work that way. Whether the changes are subtle or have the impact of a Category 5 hurricane (can you guess what part of the country I live in), we all change whether we seek it or not, whether we wish it or not.

New friends know me for who I am now and accept my limitations as part of me. Others, from my old life, are coming to see beyond these new limitations and accept that my raucous sense of humor still lives, my love of gardening and the earth is an abiding one, and that my loyalty to my friends rarely wavers.

But, they have also had to accept that in many ways I am not the person they knew when our relationships began. I like to think of myself as new and improved with sprinkles on top.

For those who cannot come to terms with my organic illness and the inevitable life changes, I wish them well as our paths diverge. But, I also leave the door open, not only to allow those who leave back in should they wish to return, but to leave wide the door letting in new friends and forms of support.

Originally posted on RemedyFind.com August 2004

- When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.
                                                                -  Alexander Graham Bell.

*Addendum: At the time of our initial argument, I said, "Why don't you do your homework," and my relative replied, " I did." In 20/20 hindsight I believe that the homework was done, but because the psychiatric myths of neurasthenia are so pervasive in our society, the remarks make sense in that context even though the conclusion is not supported by the biomedical evidence.

As a professional journalist, I believe journalists must shoulder a great deal of the responsibility for the confusion. The failure of the media to differentiate between two diametrically opposed medical hypotheses is a fundamental error with severe reprocussions.

And the use of the vague, undefined term "controversial," doesn't cut it. Good grief, whether you like your toilet paper hung "over" or "under" is controversial. The elemental failure by journalists to differentiate between "mass hysteria or neurasthenia," and a biomedical disorder classified by the World Health Organization (WHO) as a nonpsychiatric neurological disorder under G93.3 is scandalous.

scan·dal·ous adj

    causing or deserving to cause public outrage or censure
    causing or having the potential to cause damage to somebody’s reputation