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In the Media
By Forum Staff

   Another good article on Laura Hillenbrand, author of a best-selling novel that is
now in production as a movie, was in The Boston Globe, but even the good articles
don't get it completely correct.  In response, the only letter to make it into
publication in the Globe was one by the NCF's executive director, Jill
McLaughlin, who had asked others to respond to the article as large responses
usually bring more media stories on the subject.

  Jill's letter to the editor read as follows:     

On behalf of our organization we would like to thank The Boston Globe and
author Sally Jacobs for the excellent article ("Against all odds" October
24, 2002), which brilliantly describes best selling author Laura
Hillenbrand's suffering and struggle with Chronic Fatigue Syndrome (CFS).
This article succinctly captures the devastation of the illness, which goes
well beyond "fatigue" as most people know it.

The name Chronic Fatigue Syndrome itself has contributed to the
trivialization and lack of understanding of the illness. It is difficult to
convey the clinical severity of an illness whose name merely denotes
"tiredness."

Indeed, fatigue is not a disease, it is one symptom of many diseases of both
physical and psychiatric origin. And furthermore, what has come to be
labeled as general fatigue is really more specifically, as Laura Hillenbrand
clearly articulates, severe vertigo and profound muscle weakness.

Unfortunately, the prominent association of fatigue with psychiatric
illness, particularly depression, has fostered many of the misconceptions
and wrongful attributions. (In spite of the fact that fatigue is a prominent
symptom of many serious neurological, infections and autoimmune diseases.)
It has thus remained somewhat mired in controversy, confusion and
misconceptions and has received far too little attention from the federal
and state health agencies, the medical community, legislators, the media.

Disbelief continues to pervade the medical approach to conditions where the
etiology and pathophysiology remain elusive, and medicine is replete with
the tragedies of those whose diseases awaited medical recognition. And it
has become far too convenient and acceptable to fall back on psychological
models when the "answers" are not simple or obvious. It was not long ago
that multiple sclerosis was called "hysterical paralysis" and autism was
attributed to "refrigerator mothers."

However, the good news is that scientists are continuing to discover
numerous biological abnormalities that provide evidence of a "real" (i.e..,
physical) nature, and there is a federally appointed committee that has been
charged with making official recommendations on the name change issue to US
Secretary for Health and Human Services, Tommy G. Thompson.

Patients have been subjected to stigma, incredulity and prejudice for far
too long. We would encourage The Boston Globe to provide further coverage on
this prevalent, devastating, yet frequently misunderstood illness.


Among the responses we received that others sent in to the editor was this one that
we found particularly compelling:

Thank you for your article "Against all Odds" (October 24, 2002) about Laura
Hillenbrand's struggle to write Seabiscuit while living with Chronic Fatigue
Syndrome/CFIDS.

As a 9 year survivor of CFIDS, I would like to offer three points.

First, it is extremely difficult for observers, and even the ill person herself, to live
with unexpected rollercoaster fluctuations from hour to hour.  There is no clear
explanation yet why one day we can sit up and write and the next day we cannot
focus a thought at all.  Or why we might be able to walk three blocks on Tuesday
but not again for three months.  Fluctuations are a part of most medical conditions,
but in CFS/CFIDS they are severe and a hallmark for the illness.  My answer to
you about why Ms. Hillenbrand could go up and down her staircase and sit up for
four hours to be interviewed was that when we decide that we really want to do
something, adrenaline takes over and we do it by mind over matter.  You may be
tempted to think, "Well, she should just keep doing things and she'd be fine."   But
we never get away with going outside the box.  Our relapses mirror the degree to
which we have figuratively borrowed from the bank money that we don't have.
You were not present to see the results.  Probably Ms. Hillenbrand suffered quite a
severe "crash" (setback) for several days -- or weeks -- after the interview.

Second, there was an element of skepticism in your article that was unnecessary.
CFS/CFIDS has been taught in medical school syllabi for years now, there are
continuing medical education credit courses on it yearly, and hundreds of
reputable medical articles exist.  If you look back through the archives of multiple
sclerosis, you will find the same disbelieving comments.  I myself would have
found CFS/CFIDS hard to believe if someone told me about her illness before I
had it, but I would hope that I could listen with an open mind and remind myself
that people can be snide about that which they are not familiar.  You are a
journalist and thus have a higher responsibility to research rather than ridicule.

Third, although I am so happy for the success of Laura Hillenbrand and her
excellent book, I feel a profound sadness that the very ill still feel that they must
prove their right to exist.  Articles about quadriplegics, people with post-polio
syndrome, the blind (and so on) always focus on wondrous achievements.  We live
in a society that defines value of life by the degree of frenetic activity one can do.
Ms. Hillenbrand has internalized this and admits that only now "people are
believing in me, I can believe in myself."  Note that as soon as her manuscript was
turned in, she relapsed ("the sky fell again").  Must ill people nearly kill
themselves to prove to the world that we are still worthwhile?  May I suggest that
to live day to day with handicaps is a major achievement in itself?  Journalism
could help by perceiving the heroics of daily experiences of severe pain, social
disapprobation, isolation, living with uncertainty every moment, and being
disbelieved by some medical professions who should know better...
Sincerely,
Judith Kruger

    Another letter by Jill was published by The Chicago Tribune following an
article entitled "Hope for the Exhausted:  DePaul Study Finding Therapies to
Combat Drain of Chronic Fatigue."   She wrote that "the overall message may be
misleading" since "when people have AIDS, cancer and lupus, there have been
many non-pharmacological interventions that try to help these people deal with
their illnesses and all the issues that arise."  While Jill said the NCF was "grateful
to Leonard Jason and his colleagues at DePaul University for their contributions"
she felt it was important to clarify that this did not imply the "illness is
psychological."  "The real problem," she wrote, "is the lack of medical treatment
for CFS...patients deserve appropriate treatment for their illness and should not
have to settle for little more than help in coping with it."
  
    A newspaper in Belfast, Northern Ireland wrote an article by Steven Jaffe featuring
Derek Enlander, M.D., a CFIDS specialist who practices in New York City.
Enlander is a native of Ireland.  Entitled "M.E.'no joke' says top doctor", the
strong article quotes the doctor as saying, "Careers are lost, marriages are
terminated and lifetime ambitions are dissolved." Dr. Enlander's book, "The CFS
Handbook" is available by order through Amazon.com (go there from iGive.com
so a portion will benefit the NCF!) or from the CFS Association of New York, 88c
Union Ave., Center Moriches, NY 11934 (631-874-3120).  

IN THE MEDIA is a new column that takes the place of our National News Network after a survey  showed that
support group leaders would prefer the cost of the mailings go into research.  Help is still available for those
wishing to form a support group.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606