NJ ME/CFSA

Parts of me do!

by Saundra Sharp

Buy a juicer or go to the beach
Have a colonic or pull your teeth

Try homeopathy and eliminate grains
Too many choices, I’m going insane.

Chiropractic treatments and Chelation I.V.’s
Organic Foods and Mega doses of C

Acupuncture therapy and meditation tapes
Another new hope or another mistake

Try macrobiotics and eliminate meat
Choose only healing foods to eat

While Sauna detox often works
Sometimes programs make you worse

Wear only cotton with no perma press
Easier by far is not getting dressed

Constant searching for answers and clues
Suggestions from everyone on what to do

Try it all, I’ve heard it said
Think I’d rather stay in bed

Another day and another choice
Inside my head I hear this voice

Stop the chatter the message implies
Let the answer come from inside

Trust your instincts, trust your heart
Gather the strength that they impart

Make decisions, right or wrong
Nothing is hopeless, till choices are gone

———————————

*E I is environmental illness and is also known as MCS – Multiple Chemical Sensitivity

by Thomas L. English, M.D.
appeared in the
Journal of the American Medical Association
February 27, 1991

Skepticism permeates our profession.  It is ingrained during medical training and reinforced by professional experience.  Who among us has not repeatedly seen claims for fourth-generation drugs with no side effects, new operations that yield glowing results with minimal complications, or the latest infallible, high-tech diagnostic procedure . . . only to discover months or years later that these claims missed the truth by miles.  Small wonder most of us are skeptics.  To be skeptical is to be detached, rational, and objective.  Skepticism is widely perceived as the prudent, conservative way to deal with ambiguous situations — times when even experts are confounded.  Healthy skepticism is the “in” attitude for intelligent, discriminating physicians.
But healthy for whom?
Four years ago I was diagnosed as having chronic fatigue syndrome (CFS).  The experience has given me a new perspective of my profession, one that is not always flattering.  In one early report, the average CFS patient had previously consulted 16 different physicians.  Most were told that they were in perfect health, that they were depressed, or that they were under too much stress.  Many were sent to psychiatrists.  The situation is better today, but not by much.
Though many CFS patients are depressed (small wonder), CFS in not depression.  Antidepressants may treat that depression, but CFS persists.  Likewise, therapists may support but not cure; some patients find their psychiatrist is the only one who believes they are physically ill.  Careful scrutiny with an open mind reveals that the fit of CFS symptoms into traditional psychiatric molds is uncomfortable at best.
Is CFS a real disease?  I believe it is, but I cannot settle that here.  I would only plant this seed in the mind of skeptics: What if you are wrong? What are the consequences for your patients?
Imagine for a moment that you are the Subjective patient, not the Objective physician.  You catch “a cold” and thereafter the quality of your life is indelibly altered.  You can’t think clearly . . . sometimes it’s all you can do to read the newspaper or to follow the plot of a television program.  Jet lag without end.  You inch along the fog-shrouded precipice of patient care, where once you walked with confidence.  Myalgias wander about your body with no apparent pattern.  Symptoms come and go, wax and wane.  What is true today may be partially true tomorrow or totally false next week.  You know that sounds flaky, but, dammit, it’s happening to you.
You are exhausted, yet you can sleep only two or three hours a night.  You were a jogger who ran three miles regularly; now a walk around the block depletes your stamina.  Strenuous exercise precipitates relapses that last weeks.  There is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness. “Fatigue” is the most pathetically inadequate term.
You too might wonder about some of your symptoms had you not talked to other patients with similar experiences . . . or talked with physicians who have seen hundreds of similar cases.  With experience, a pattern emerges: the bizarre and implausible become commonplace and credible.  “Armchair analysis” of CFS understandably generates doubt; to comprehend this illness, one must heed Osler’s advice to study the patient firsthand: “Learning medicine without books is like going to sea without charts.  Learning medicine without patients is like not going to sea at all.”  I have only skimmed the surface of the myriad symptoms CFS produces — persistent headache, sore throat, a variety of neurological symptoms, adenopathy — but you are, I hope, beginning to get the picture.
Iron-man determination to be tough is self-destructive:  you merely become Sinking Sisyphus.  Perhaps you take a few weeks off; rest helps.  Though you improve, you are still light years from your former self.
By now you are literally disabled, but the bills still role roll in.  Will you quality for disability if your physicians determine that your only problem is “too much stress”?  Maybe you will be lucky enough to find a doctor who can properly diagnose and treat you, and maybe you have disability insurance with a competent company that has informed consultants. Maybe.
I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid.  Their bodies told them they were physically ill, but the psycho speculation of their physicians was only frightening and infuriating — not reassuring.  It told them their doctors had little understanding of the real problem.  Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them.  They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills.  There is nothing that you hold dear that this illness cannot take from you.  Nothing.
Are we to believe that just because symptoms are strange and unfamiliar they cannot be real?  Are we to assume that our laboratory tests are capable of screening for new diseases as well as old?  Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust.  The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years.  I shudder to think of the death and misery caused by the skeptics during that half-century.
I have been very lucky.  After being ill for a year and a half, I began painfully slow improvement.  Despite repeated setbacks, I have progressed to the point where I am no longer continually miserable.  My career, however, is but a faint memory.  There is little demand for absentminded surgeons, even if I had the stamina.  Too, I harbor the lingering fear that I might transmit my illness to a patient.  The satisfactions of the operating room are a thing of the past.  So I wait.  I hope.  I pray.
My activities are narrowly circumscribed.  I can read again, but I avoid difficult material.  I can handle light exercise, but the backpacking that was my previous delight is evanescent fantasy.  I swallow my pills, follow my diet. (Treatment is palliative and based on trial-and-error application of anecdotal evidence, but it helps most patients.  I enjoy passable existence, not a miasma of misery.  I lack the strength to wait years for controlled studies; life is short, science is slow.)  I try to educate other patients and “convert” other physicians.  Sometimes I succeed.
I have survived because of caring friends and fellow patients and because of a few committed physicians who kept their minds open.  They truly listened.  They thought long and hard.  Many were and still are ridiculed for taking CFS seriously.
Internists have long prided themselves on incisive intellects and superior diagnostic skills.  It is time for those skills to focus on the complex subtleties of this illness.  I ask for your patience.  CFS is sufficient indignity by itself; do not compound it.  It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex.  But if you take that time, you can do a world of good.  CFS may frustrate you, but it is equally fascinating and rewarding.  Resist the temptation of hurried, superficial evaluation.  This is no illness for cookbook doctors.  It is a disease for medical intellectuals with supple and open minds.

Thomas L. English, MD
Asheville, NC

Edited by Roxanne K. Young, Associate Editor
Journal of the American Medical Association, February 27, 1991 – Vol 265, No. 8

—————-

How much has changed since this article appeared in 1991 ?

1. You will receive a body. You may like it or hate it, but it will be yours for the entire period this time round.
2. You will learn lessons. You are enrolled in a full-time informal school called Life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant and stupid.
3. There are no mistakes, only lessons. Growth is a process of trial and error: experimentation. The “failed” experiments are as much a part of the process as the experiment that ultimately “works.”
4. A lesson is repeated until learned. A lesson will be presented to you in various forms until you have learned it. When you have learned it, you can then go on to the next lesson.
5. Learning lessons does not end. There is no part of life that does not contain its lessons. If you are alive, there are lessons to be learned.
6. “There” is no better than “here.” When you’re “there” has become a ‘here,’you will simply obtain another “there” that will again look better than “here.”
7. Others are merely mirrors of you. You cannot love or hate something about another person unless it reflects something you love or hate about yourself.
8. What you make of your life is up to you. There isn’t a single right way to live. There are many right ways to live. The choice is always yours and there are always choices.
9. Your answers lie inside you. The answers to Life’s questions lie inside you. All you have to do is look, listen and trust.
10. You will forget all this.
11. You can remember whenever you want.

A chronic illness invades life.
-Kathleen Lewis

Life is what happens while you are waiting for a cure.
-Arlene Vermaak

My message is peace of mind,
not curing cancer, blindness, or paraplegia …
Anyone who is willing to work at it can achieve it.
-Bernie S. Siegel

Life has handed me a portion I did not choose
and do not welcome,
but I can chose my own response.
-Sefra Kobrin Pitzele in Meditations for the Chronically Ill, May 4

The last of the human freedoms – to choose
one's attitude in any given set of circumstances …
-Victor Frank, Nazi Death Camp Survivor

I complained because I had no shoes
until I met a man who had no feet.
-Persian proverb

Everything has its wonders, even darkness and silence,
and I learn, whatever state I may be in,
therein to be content.
-Helen Keller

Self-pity is our worst enemy and if we yield to it,
we can never do anything wise in this world.
-Helen Keller

Think of the beauty still left around you and be happy.
-Anne Frank

Happiness should not depend on physical wellness.
-K. O'Brien

To live happily is an inward power of the soul.
-Marcus Aurelius

They have passed from the defeat of incurable illness
to an inner tranquility that is entirely independent of any outside condition.
Beside such a triumph, all the achievements and possessions of a lifetime
pale to insignificance.
For Today, OA, Inc., Torrance, CA, 1982, page 111.

What ought one to say then as each hardship comes?
I was practicing for this, I was

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