| 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 9½ 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. |
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