| Remember Me is Forgettable A Review of Kim Snyder's New Film, I Remember Me by Maryann Spurgin, Ph.D. "Chronic Fatigue Syndrome is a way of expressing a sense of ill being that has been medicalized and transformed by a small group of activists, both physicians and patients, into a proposal for a new disease." Thus does psychiatrist Peter Manu, who is reported to have been hired by insurance companies to intercept disability payments, offer his trademark demeaning attributions of M.E./CFS in Kim Snyder's new film, I Remember Me. Unfortunately, Manu's literary debris, offered by Snyder with no political background on Manu's mercenary insurance dealings, typifies the disturbing commentary that appears without critical analysis in this artistically dull, scientifically unsophisticated, politically vapid piece of cinema trivia. It is no surprise, and is actually in the patients' best interest, that major networks and movie channels declined to show the film. In fact, it is surprising that the Sundance Channel considered it worthy enough to air. Sloppily shot like a home movie, the film makes persons with M.E./CFS, who have neurological and visual disturbances, dizzy just watching it. Written and produced by someone who states that she is a patient and hence should know better, the film presents the disease just as the media often have -- i.e., as a debate as to whether or not it is "real." Comments by Manu, a few passersby on the street, and William Reeves of the Centers for Disease Control, who make skeptical remarks about the disease, are casually juxtaposed with comments by Drs. Byron Hyde, Nancy Klimas, Dan Peterson, David Bell, and Peter Rowe -- they offer the other side of the hackneyed debate. Nancy Klimas does do an excellent job, in the short amount of time the editing permits, of speaking up for the voluminous research articles on the disease -- some 800 in the MedLine. Klimas obviously has a very good grasp of the research and of the fact that each facet of the research represents only a piece of the puzzle and not the whole picture. Likewise, Rowe, Peterson, and Hyde also speak knowledgeably, if all too briefly, of the research. But this is to their credit, not Kim Snyder's. Snyder herself, in some of the most lackluster editing in screen history, saw fit to juxtapose the comments of these knowledgeable researchers with skeptical remarks -- including a sneer by the Vice President's wife, Lynne Cheney -- offering no guidance or political background to the perplexed viewer. As a consequence, as helpful as the comments by Klimas et al. were, they were not enough to cancel out the sense that the viewer is left with that this is a condition subject to opinions, debate, or theology rather than an issue to be assessed in light of available scientific evidence. "Science can't explain it," Snyder states, as false a statement as was ever made. Although, as in lupus, no single marker has been found, the weight of scientific evidence that medically explains patient symptomatology is strong, and the In Memoriam lists Snyder fails to mention are long. The debate peaks when Lyndonville, NY, clinician Dr. David Bell states, "I've never had any doubt that this is a primary organic illness" (after which Snyder again presents Manu covering up the research data). Certainly we appreciate Dr. Bell's defense of the disease's organic nature, but was it really useful, in 2002, to present the opinions of physicians, in place of facts they discovered? In interviewing Bell, Snyder could have chosen to extract and detail an important discovery that Bell himself helped pioneer. Indeed, Bell is the key player who convinced the world-renowned endocrinologist Dr. David H. P. Streeten to do blood volume studies on M.E./CFS patients. Streeten and Bell found low plasma and/or erythrocyte volume in severely affected patients, offering one explanation among several for why patients cannot maintain an upright posture. Reviewing this research, and interviewing Bell on the groundbreaking Steeten/Bell finding, would have been poignant and hard hitting, and might have offered the perplexed viewer a scientific explanation for the bedridden case of Stephen Pagnanetti, Jr., whom Snyder showcases (an EMT only casually mentions low blood volume in passing). Snyder chose instead to take the cheerleader's approach of showing Paganetti's ambulance trip to his graduation (where, I might add, one of his former classmates tells him condescendingly, "When you get better, we'll talk). Why did she not tell the real story of what happened to Paganetti, how the medical system so abused him as to worsen his case? Rather than to have chosen a weak, mainstreaming media editorial approach, which seeks to garner ratings by making the issues ambiguous, Snyder could have detailed the science and made it interesting to the viewer. Snyder also omitted Dr. A. Martin Lerner's viral cardiomyopathy work, other work on infectious agents, work in haematology on infection-induced immune system activation of coagulation and abnormal RBC morphology leading to post-exertional tissue hypoxia-ischemia, as well as a fuller explanation than what she presents of Rowe's theory of a virally induced dysfunction of the autonomic nervous system. Again, she could have had Rowe explain his research further and could have linked it in greater detail to Paganetti's case, offering another scientific, medical explanation for why he is bedriidden, instead of portraying the disease, as does Manu, as medically unexplained. Snyder's approach did much to undermine the credibility of the disease. Put simply, she sold out --- not surprising given that the government-controlled spin zone the CFIDS Association of America (CAA) funded much of the film. I got a sense that Snyder had failed to do her homework before she made the film. Because of my publications on the disease in The Nation and elsewhere, Rich Carson of the somewhat overpriced CFIDS Buyers Club; who knew of my publications, had put me in touch with Snyder years ago when I was considering making a financial contribution to the film (the promise of money, not knowledge, seemed to be what inspired Snyder to return phone calls). A few minutes of conversation with Snyder made me realize that I would not contribute to the film. Although I encouraged the newly diagnosed Snyder to familiarize herself both with the science and with the politics surrounding the disease, she was resistant to what I had to say and seemed to want to put her head in the sand. But my distaste for her project was sealed when she mentioned that she would feature Michelle Akers, certainly the least credible patient on earth to profile. It is in no way clear that Akers even has the disease. Paraded about and no doubt used by the CAA, Akers' proclamations about her terrible case, when in fact she is out exercising and winning medals, has served only to trivialize and discredit the disease in the minds of the public for many years. I urged Snyder not to profile Akers and instead to contact Naomi Weisstein, Ph.D.. a brilliant psychologist and cognitive neuroscientist who was famous in her academic field, having made some important discovers about the brain, but who was reported in an op-ed piece in the New York Times to have been bedridden with the disease for years with round-the-clock nursing. Dr. Weisstein would have been a particularly credible patient to profile. But catchy famous media names, like Michelle Akers and Blake Edwards. as opposed to articulate, credible patients, dominate the film, as do patients with little knowledge or ability clearly to articulate the symptoms in ways that do not mimic depression. Ms. Akers' commentary itself seemed to be a description of her depression, a very serious disease in its own right, but which has nothing to do with the symptoms of M.E./CFS. The film chronicles one suicide, interviews Drs. Peterson and Klimas on how many patients have committed suicide, and depicts other patients talking of suicide. Akers herself wants not to take her own life but "to be taken." This aspect of the film is likely to confuse the viewer, since it promotes a psychopathological paradigm. A number of patients depicted in the film describe symptoms, not of M.E./CFS, but of major depression, stating "you are desperately alone in your agony," with a "sense of solitude," a sense that "I have to keep going" despite the focus on suicide. These medical complaints --- aloneness, suicidal ideation --- detail the classic symptoms of depression. "I have to keep going" implies that patients who cannot keep going due to the severity of their M.E. disease just aren't trying as hard as Michelle Akers. Snyder herself describes that she had a hard time getting her body to move. Without describing the symptoms of M.E./CFS that relapse with exertion, this again sounds like a description of depression. Most disturbingly, Snyder depicts jogging as she speaks of her inability to move her body, again giving the impression of depression, a disease that does not relapse with exertion. Blake Edwards states of his disease that it is "hard to articulate or explain it," which is false of M.E./CFS but true of depression. Why did Snyder not choose patients who discussed the easy-to-describe ravaging symptoms of M.E./CFS --- post-exertional flu, fever, chills, aches, sweats, nausea, vomiting, paralytic muscle weakness, muscle pain, chest pain, resting tachycardia, orthostatic faintness, orthostatic tachycardia, myoclonus, and seizures --- to name only a few? Why does she depict elderly ladies who belittle the prescription of pain medications for these terrible symptoms, calling the use of them "being a dope fiend"? Instead of seeking out the few suicides, why did Snyder not mention the In Memoriam lists that catalogue the cardiocirculatory, allergic, and cancer deaths of persons with M.E./CFS --- most of the patients were in their 30's, 40's, and early 50's? Mentioning the young women who have died of cardiohaematological causes could have backed up the cardiac and haematological research on the disease, had she not so blatantly failed to report on it as well. Instead, Snyder parades the proverbial propaganda that M.E./CFS is not a progressive disease, but rather is a disease from which one cannot die except by suicide. Regarding the inaccurate and demeaning name "CFS," which a few patients in the film criticize as unrepresentative of their symptoms and which the Name Change Workgroup has stated "negatively impacts the quality of medical care patients are able to obtain," Snyder herself replies "it didn't really matter to me what the name of it was..." And Reeves sneeringly refers to the 1950's M.E. outbreaks as outbreaks "of fatiguing illness." In this airless and anti-intellectual film, a dull patient support group meeting of some elderly ladies, whose dialogue is prosaic and who have nothing of interest to say, along with Snyder's own slow, boring monologue devoid of wit, style, or scientific or political content, kills any possible artistic merit, drains the viewer, and makes him or her unsympathetic toward the disease. This leads to one of the most disturbing aspects of the film. "We are not even treating a disease, we are treating an experience." So states a social worker in observation of the severe, disease-wracked case of Stephen Paganetti, Jr., the most tragic case depicted in the film. Bedridden, unable to sustain even a slight upright posture, paralyzed with muscle weakness so severe he is unable to move or swallow, with a permanent feeding tube inserted into his stomach, round-the-clock care, being dressed, bathed, with extreme pallor, and with visible recurring myoclonus in his arms, he is surely one of the most severe cases on record, short of those who have died. Snyder is downright negligent in failing to tell the real story of what happened to Paganetti. Why did he become so ill? What forces conspired to make him bedridden? What did the doctors do to him? Snyder goes so far as to state that we don't know why some people decline this severely. But we do know. Forced exertion, when a patient is too ill to exert, is precisely what causes such decline. Forced exertion is the recommendation made by psychiatrist Simon Wessely, Michael Sharpe, and the very Peter Manu which Snyder uncritically profiles. Instead of denouncing forced exertion, Snyder chooses to show Paganetti's ambulanced attendance to high school graduation. Although my own case is not as severe as Paganetti's, I know that it is like to graduate from my bed --- indeed, I was so ill in my mid-30s that my Ph.D. dissertation defense, because I could not maintain an upright posture long enough to manage it at the university (I did not attend graduation). True, the iron will of M.E./CFS patients to accomplish something despite being critically ill -- a striking example is Laura Hillenbrand who wrote the best-selling novel Seabiscuit while bedridden in her home -- is a noteworthy phenomenon and a clear example of how very distinct this disease is from depression, which destroys the will to accomplish. But the film misses an opportunity to point out this strong distinction, or to tell of the disease's ravaging physical symptoms that lead someone to be as sick as Paganetti, or to detail the scientific and medical explanations that back up his depicted debility, or to fault the medical personnel who worsened his case. Sara Bass of the Connecticut CFIDS Association wrote a moving testimony for the CFS Coordinating Committee on what really happened to the young Paganetti. I would like to give credit here to Bass and to the CT CFIDS Association. Desiring to communicate to the public the seriousness of the disease, the organization even provided the funding to bring Snyder's film crew to Paganetti's home to make sure his case was included, according to Bass with whom I spoke on July 19. This is to their credit, and they should be praised for it because the inclusion of Paganetti's case at all made the film somewhat better than it would have been. But in essence Snyder misused their funds and used Paganetti's impoverished family -- i.e., with the promise of 15 minutes of fame -- in the same condescending way that Jerry Springer uses persons who lack the political savvy or education to comprehend how they are being portrayed. To depict demeaning comments by his classmates, and to show a scientifically unsophisticated social worker (who calls herself "clinician") refer to his case as an "experience, not a disease" is unconscionable. What really happened to Paganetti? According to Bass's testimony, at age 16 Paganetti came down with a viral infection, saw a number of HMO doctors, and was finally referred to a pediatric infectious disease specialist who told him that his illness was psychological and that, as Bass reports, "he could stop his hand tremors if he really wanted to." Bass then quotes the doctor as telling him to "get your ass back to school." Forced to drag himself to school, too ill to do so, he collapsed, went into shock, and as Bass put it in conversation, "never went vertical again." He spent some months in the hospital and was subsequently ambulanced to a number of medical facilities, including one in New York where he saw a mitochondrial specialist. The initial doctors' negligent recommendations and the stress and exertion when he was critically ill led him to end up on a feeding tube. Why did Snyder neglect to interview Bass, or quote from her moving testimony, or at least mention the forces that conspire against those who are seriously ill with this disease. None of this terrible story of what the system did to Paganetti -- the doctors who forced him to go back to school and caused his collapse, those who failed properly to diagnose him and treat him when he was ill, and his being fruitlessly ambulanced from doctor to doctor -- is even mentioned in Snyder's film. Paganetti got that sick because the system refused to see this disease for what it is -- a disease that can paralyze you for life from minimal exertion. As patients continue to suffer abuse, misdiagnoses, phychopathologizing, lack of medial care, and iatrogenic worsening of their condition, the real story still waits to be told. ***** [Maryann Spurgin, Ph.D., is a long-time writer on the science and politics of M.E./CFS. She is the current director of the Myalgic Encephalomyelitis Society of America and editor of The American M.E. Review, a research-review publication. Dr. Spurgin holds a Ph.D. in philosophy and considers herself an aesthete and a connoisseur of the dramatic and musical arts. Her favorite rock bands are Patti Smith Group, The Cure, and Radiohead. Dr. Spurgin and the National CFIDS Foundation give permission to photocopy, republish, e-mail, and re-distribute this review so long as nothing is added or deleted, the author is given proper credit, and copyright notices are given to the Natl. CFIDS Foundation. The NCF will not be selling I Remember Me, but will continue to sell the film Living Hell.]
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