In December, I, along with members of my CFS research team, went to see Kim Snyder's new movie titled "I Remember Me" at the Gene Siskel Art Institute Theatre in Chicago.  The movie won some awards at film festivals over the past year.  Chicago is the second  city to host this film.  Previously, it had a brief run in New York in November.  

    The movie is a personal story about Kim's illness with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis), and shows the progression of the illness over the time period from 1994 until about 1999.  During this time period, Kim carefully weaves into her story the controversies that have emerged with this disease, including the trivial name attached to this debilitating illness, as well as the callous attributes of many government officials and physicians.

    During the movie, we are given case studies of individuals who have been afflicted with this disease and the stories of Blake Edwards and a high school student who is bed ridden are interwoven into the story of Kim's search for a diagnosis of what has so brutally challenged her life.  This movie also highlights the courageous work of Drs. Peterson and Bell who, early on, recognized that their patients were suffering from this illness, and Dr. Peterson describes the indifference of government officials who are asked for assistance.

    At the conclusion of the film, Kim took questions from the audience, and at one point she mentioned that HBO had decided not to broadcast this film.  In addition, during the week run in Chicago, I had heard that there were from 10 to 20 people, at most, attending the showings, except for this last evening when Kim was scheduled to appear.  I wondered why the film had not captured more attention from the public, particularly given the awards it had garnered at film festivals and the excellent reviews it had received from people like Roger Ebert.

    I found myself reflecting on the two contrasting reactions, the strong visceral endorsement of the audience and the relatively small numbers of people that attended the showings.  I tried to understand how this might have occurred. There is no question the film portrayed a very disturbing and unsettling illness, one which perhaps many people would prefer to deny, particularly during their leisure time.  

    In the course of the four year production, Kim had called me a number of times to get my reactions and seek my advice on her film.  During those conversations, I had urged her to consider the politics of this disease and to make the audience care about the central figures. I wonder what more could have been done to make the message accessible to the public.

    This nagging thought haunted me and I knew there have been other documentaries of expose of the auto industry, tobacco corporations, and mental institutions and, for these issues, a larger audience had been generated.  And with this question in mind, I began to dissect Kim's film.

    It is very clear, the name has contributed to the public's lack of understanding of this illness.  When a popular health columnist for the New York Times and a nationally syndicated talk radio physician regularly suggest that CFS is, more than likely, a disease that needs little funding for basic research and is, in all probability, a hysterical disorder, wouldn't the audience have been brought to a closer understanding of why so many doubt the legitimacy of this illness if these key media figures had been mentioned and their biased attitudes uncovered?  When one of the leading feminist writers in our country goes on television and informs the public that CFS is similar to multiple personality syndrome, satanic ritual abuse, and alien abduction, an expose of this feminist's book and motives would have provided a more realistic understanding of the enormous prejudice and misinformation directed against patients with CFS.  

    There are powerful cultural forces that help shape the public's attitudes toward people with this disability, and helping understand this trivialization of distress might have allowed the audience to see the dynamics and processes that go well beyond CFS. The government's role in this tragedy is referred to throughout the movie.  The government's lack of a thorough investigation is noted in the Incline Village and Lyndonville outbreak as well as other outbreaks over the years.  And yet we are never informed that the chief CFS researcher within NIH during the 1990's viewed the illness as psychoneurotic and was rather open about his views.  This omission makes it difficult to understand how an influential scientist's attitudes might have had a deafening effect on research.  We are told that more research needs to be funded, and yet fewer CFS grants are being submitted to the NIH and why some of the leading experts in the field are no longer engaged in CFS research.  Here is a story that remains buried but would be fascinating if the full dimensions of this barrier to science would have been exposed.

    A representative from the CDC is interviewed several times during the movie and we are briefly informed that he exposed multi-million dollar misappropriations of funding. Was this not another missed opportunity to tell the public of a major controversy about how several CFS activists were able to gather information that forced the government to admit that money allocated to CFS research was diverted to other areas?  The forces that tried to keep this illegal activity  buried, the reasons for the diversion, the meaning of it, and the ultimate outcomes should have made the front pages of the New York Times, but this event never reached the audience it could have and the film might have told this gripping story.  The fact is the CDC had estimated that less than 20,000 people had this illness though much of the 1990s contributed to a perception of this illness being a rare disorder, therefore not needing additional public resources.  We now know that the rates of this disorder might be as high as 800,000 and that almost everything we know about this illness is based on white individuals, those who make it to tertiary care centers to be diagnosed and studied, and yet 90% of individuals with this disorder have never been diagnosed and most of them are minorities--these types of findings might have helped viewers gain more insights about abuses within science when  inappropriate generalizations are made.

    At a more personal level, we are informed about a tragic suicide and the suffering of those afflicted is palpable. Still, I wondered if the case studies might have sent mixed messages to some viewers.  When we learn that Michelle Akers, who claims to have the disease, was able to win international competitions after having CFS, do we not somehow lessen the public's appreciation of the devastation that occurs with this illness?  When Blake Edwards is shown suffering from 15 years of CFS, we again begin to understand the enormity of this illness.  Yet, when we are also told that he has produced over 50 films and seems to be rather productive even with the illness, does not the public begin to wonder about how individuals can be able to both have little energy and yet be so prolific?  Kim, the producer and writer of this feature, tells her story of also being profoundly impaired by this illness, but we see her able to write and produce a film and some might see this as confusing.  Surely, there are people who have been able to recover from this devastating illness, but those who recover are few, and the recovery process is one that is never alluded to, so the viewer is left with trying to reconcile the full impact of this illness and high levels of productivity in these recovered former sufferers.  A best selling author who wrote a popular book on a race horse but who remained housebound throughout the entire process might have been a better and particularly credible patient to profile.

    The scientific literature is filled with psychological theorizing about how patients have personality disorders and coping styles that are the primary reason for the disability. Again and again, studies in the scientific literature point to perceptions of effort as being the primary deficit and how those who are afflicted get secondary rewards for their illness.  For those who subscribe to this model, an orientation that cries out to be exposed, this film might inadvertently provide ammunition, as the youth who is completely bedridden is able to graduate with his class, and viewers might wonder how can a person who has so little energy that he cannot sit up or even feed himself be able to finish high school with his peers.  When those with this attitude see the high school student brought to graduation in a prone position, and receiving the praise, sympathy and honors for his achievement, some might see this as powerful secondary gain for maintaining illness behavior.  I do not support such a position, but a film needs to consider how characters are portrayed in a way that further perpetuates the myths and mischaracterizations.

    There are so many other stories that might have captured audiences' sympathies.  I know of children who are being taken away from their parents because they are being charged with child abuse due to their lack of ability of going to school.  Exposing such abuses would have been riveting.  I know of many families that have been broken apart due to the spouse's inability to deal with the illness, and showing these types of effects might have generated more compassion for those affected.  Thousands of individuals with CFS have lost their jobs, lost their homes and some have even become homeless---and had such stories been portrayed, particularly if the premorbid functioning had been presented in a way to build audience identification, more interest among potential viewers might have been actualized.

    This review might seem unduly harsh. But while this film may touch some who view it, an important story still waits to be told -- one which might generate more interest in a larger audience and, ultimately, which might have greater influence on correcting destructive and harmful prejudices and biases toward those with CFS.

Dr. Jason is the Director of the Center for Community Research at DePaul University. He has published countless studies on ME/CFIDS including the NIH funded prevalence study which found up to 800,000 Americans over 18 years of age afflicted with the disease and another that found the prejudice of using CFS vs. ME is very real and very damaging.  He is a member of the Name Change Workgroup appointed by the CFSCC (CFS Coordinating Committee).