# Film: I Remember ME



## Susan Purry (Nov 6, 2001)

This was posted to the Co-Cure email list. It's very informative.


> quote:The following film review was originally published in the Fall 2002 issueof the "National Forum". This is an edited version that is redistributedwith permission from the National CFIDS Foundation.Copyright 2002 National CFIDS FoundationMaryann Spurgin, Ph.D.________________________________________*"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 illbeing that has been medicalized and transformed by a small group ofactivists, both physicians and patients, into a proposal for a new disease."Thus does psychiatrist Peter Manu, who is reported to have been hired byinsurance companies to intercept disability payments, offer his trademarkdemeaning attributions of M.E./CFS in Kim Snyder's new film I RememberMe. Unfortunately, Manu's literary debris, offered by Snyder with nopolitical background on Manu's mercenary insurance dealings, typifies thedisturbing commentary that appears without critical analysis in thisartistically dull, scientifically unsophisticated, politically vapid pieceof cinema trivia. It is no surprise, and is actually in the patients' bestinterest, that major networks and movie channels declined to show thefilm. In fact, it is surprising that the Sundance Channel considered itworthy enough to air. Sloppily shot like a home movie, the film makespersons with M.E./CFS, who have neurological and visual disturbances, dizzyjust watching it.Written and produced by someone who states that she is a patient and henceshould know better, the film presents the disease just as the media oftenhave i.e., as a debate as to whether or not it is "real." Comments byManu, a few passersby on the street, and William Reeves of the Centers forDisease Control, who make skeptical remarks about the disease, are casuallyjuxtaposed with comments by Drs. Byron Hyde, Nancy Klimas, Dan Peterson,David Bell, and Peter Rowe -- they offer the other side of the hackneyeddebate. Nancy Klimas does do an excellent job, in the short amount of timethe editing permits, of speaking up for the voluminous research articles onthe disease some 800 in the MedLine. Klimas obviously has a very goodgrasp of the research and of the fact that each facet of the researchrepresents only a piece of the puzzle and not the whole picture. Likewise,Rowe, Peterson, and Hyde also speak knowledgeably, if all too briefly, ofthe 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 withskeptical remarks including a sneer by the Vice President's wife, LynneCheney -- offering no guidance or political background to the perplexedviewer. 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 leftwith that this is a condition subject to opinions, debate, or theologyrather than an issue to be assessed in light of available scientificevidence."Science can't explain it," Snyder states, as false a statement as was evermade. Although, as in lupus, no single marker has been found, the weightof scientific evidence that medically explains patient symptomatology isstrong, 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" (afterwhich Snyder again presents Manu covering up the research data). Certainlywe appreciate Dr. Bell's defense of the disease's organic nature, but wasit really useful, in 2002, to present the opinions of physicians, in placeof the facts they discovered? In interviewing Bell, Snyder could havechosen to extract and detail an important discovery that Bell himselfhelped pioneer. Indeed, Bell is the key player who convinced theworld-renowned endocrinologist Dr. David H. P. Streeten to do blood volumestudies on M.E./CFS patients. Streeten and Bell found low plasma and/orerythrocyte volume in severely affected patients, offering one explanationamong several for why patients cannot maintain an uprightposture. Reviewing this research, and interviewing Bell on thegroundbreaking Streeten/Bell findings, would have been poignant and hardhitting, and might have offered the perplexed viewer a scientificexplanation for the bedridden case of Stephen Paganetti, Jr., whom Snydershowcases (an EMT only casually mentions low blood volume in passing).Snyder chose instead to take the cheerleader's approach of showingPaganetti's ambulance trip to his graduation (where, I might add, one ofhis former classmates tells him condescendingly, "When you get better,we'll talk"). Why did she not tell the real story of what happened toPaganetti, how the medical system so abused him as to worsen his case?Rather than to have chosen a weak, mainstream-media editorial approach,which seeks to garner ratings by making the issues ambiguous, Snyder couldhave detailed the science and made it interesting to the viewer. Snyderalso omitted Dr. A. Martin Lerner's viral cardiomyopathy work, other workon infectious agents, work in haematology on infection-induced immunesystem activation of coagulation and abnormal RBC morphology leading topost-exertional tissue hypoxia-ischemia, as well as a fuller explanationthan what she presents of Rowe's theory of a virally induced dysfunction ofthe autonomic nervous system. Again, she could have had Rowe explain hisresearch further and could have linked it in greater detail to Paganetti'scase, offering another scientific, medical explanation for why he isbedridden, instead of portraying the disease, as does Manu, as medicallyunexplained. Snyder's approach did much to undermine the credibility ofthe disease.I got a sense that Snyder had failed to do her homework before she made thefilm. Because of my publications on the disease in The Nation andelsewhere, Rich Carson, who knew of my publications, had put me in touchwith Snyder years ago when I was considering making a financialcontribution to the film (the promise of money, not knowledge, seemed to bewhat inspired Snyder to return phone calls). A few minutes of conversationwith Snyder made me realize that I would not contribute to the film.Although I encouraged the newly diagnosed Snyder to familiarize herselfboth with the science and with the politics surrounding the disease, shewas resistant to what I had to say and seemed to want to put her head inthe sand. But my distaste for her project was sealed when she mentionedthat she would feature Michelle Akers, certainly the least credible patienton earth to profile. It is in no way clear that Akers even has the diseaseand may have some sort of overtraining syndrome that could be confused withsome of the symptoms of M.E./CFS. Akers' proclamations about her terriblecase, when in fact she is out exercising and winning medals, has servedonly to trivialize and discredit the disease in the minds of the public formany years.I urged Snyder not to profile Akers and instead to contact Naomi Weisstein,Ph.D., a brilliant psychologist and cognitive neuroscientist who was famousin her academic field, having made some important discoveries about thebrain, but who was reported in an op-ed piece in the New York Times to havebeen bedridden with the disease for years with round-the-clocknursing. Dr. Weisstein would have been a particularly credible patient toprofile. But catchy famous media names, like Michelle Akers and BlakeEdwards, as opposed to articulate, credible patients, dominate the film, asdo patients with little knowledge or ability clearly to articulate symptomsin 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 withthe symptoms of M.E./CFS. The film chronicles one suicide, interviews Drs.Peterson and Klimas on how many patients have committed suicide, anddepicts other patients talking of suicide. Akers herself wants not to takeher own life but "to be taken." This aspect of the film is likely toconfuse the viewer, since it promotes a psychopathological paradigm.A number of patients depicted in the film describe symptoms, not ofM.E./CFS, but of major depression, stating "you are desperately alone inyour agony," with a "sense of solitude," a sense that "I have to keepgoing" despite the focus on suicide. These medical complaints aloneness,suicidal ideation detail the classic symptoms of depression. "I have tokeep going" implies that patients who cannot keep going due to the severityof their M.E. disease just aren't trying as hard as Michelle Akers. Snyderherself describes that she had a hard time getting her body tomove. Without describing the symptoms of M.E./CFS that relapse withexertion, this again sounds like a description of depression. Mostdisturbingly, Snyder depicts jogging as she speaks of her inability to moveher body, again giving the impression of depression, a disease that doesnot 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 ofdepression.Why did Snyder not choose patients who discussed the easy-to-describeravaging symptoms of M.E./CFS post-exertional flu, fever, chills, aches,sweats, nausea, vomiting, paralytic muscle weakness, muscle pain,neuropathy pain, chest pain, resting tachycardia, orthostatic faintness,orthostatic tachycardia, myoclonus, and seizures to name only a few? Whydoes she depict elderly ladies who belittle the prescription of painmedications for these terrible symptoms, calling the use of them "being adope fiend"?Instead of seeking out the few suicides, why did Snyder not mention the InMemoriam lists that catalogue the cardiocirculatory, allergic, and cancerdeaths 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 ofcardiocirculatory causes could have backed up the cardiac andhaematological research on the disease, had she not so blatantly failed toreport on it as well. Instead, Snyder parades the proverbial propagandathat M.E./CFS is not a progressive disease, but rather is a disease fromwhich one cannot die except by suicide.Regarding the inaccurate and demeaning name "CFS," which a few patients inthe film criticize as unrepresentative of their symptoms and which the NameChange Workgroup has stated "negatively impacts the quality of medical carepatients are able to obtain," Snyder herself replies "it didn't reallymatter to me what the name of it was . . . ." And Reeves sneeringly refersto the 1950's M.E. outbreaks as outbreaks "of fatiguing illness."In this artless and anti-intellectual film, a dull patient support groupmeeting of some elderly ladies, whose dialogue is prosaic and who havenothing of interest to say, along with Snyder's own slow, boring monologuedevoid of wit, style, or scientific or political content, kills anypossible artistic merit, drains the viewer, and makes him or herunsympathetic towards the disease. This leads to one of the mostdisturbing aspects of the film."We are not even treating a disease, we are treating an experience." Sostates a social worker in observation of the severe, disease-wracked caseof Stephen Paganetti, Jr., the most tragic case depicted in thefilm. 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-clockcare, being dressed, bathed, with extreme pallor, and with visiblerecurring myoclonus in his arms, he is surely one of the most severe caseson record, short of those who have died.Snyder is downright negligent in failing to tell the real story of whathappened to Paganetti. Why did he become so ill? What forces conspired tomake him bedridden? What did the doctors do to him? Synder goes so far asto state that we don't know why some people decline this severely. But wedo know. Forced exertion, when a patient is too ill to exert, is preciselywhat causes such decline. Continued exertion "despite symptoms" is therecommendation made by psychiatrists Simon Wessely, Michael Sharpe, and thevery Peter Manu whom Snyder uncritically profiles. (Sharpe made thisovert recommendation in an article in the 28 September 1998 issue of theAmerican Journal of Medicine, where he recommends "reinterpreting"post-exertional symptoms as unharmful to the body, and Wessely made thesame recommendation in Mark Demitrack's 1997 book on CFS, Chronic FatigueSyndrome: An Integrative Approach to Evaluation and Treatment.)Instead of denouncing forced exertion, Snyder chooses to show Paganetti'sambulanced attendence to high school graduation. Although my own case isnot as severe as Paganetti's, I know what it is like to graduate from mybed. Indeed, I was so ill in my mid-30's that my Ph.D. dissertationcommittee came to my home for my dissertation defense, because I could notmaintain an upright posture long enough to manage it at the university (Idid not attend graduation). True, the iron will of M.E./CFS patients toaccomplish something despite being critically ill, a striking example ofwhich is Laura Hillenbrand who wrote the best-selling novel Seabiscuitwhile bedridden in her home, is a noteworthy phenomenon and a clear exampleof how very distinct this disease is from depression, which destroys thewill to accomplish. But the film misses an opportunity to point out thisstrong distinction, or to tell of the disease's ravaging physical symptomsthat lead someone to be as sick as Paganetti, or to detail the scientificand medical explanations that back up his depicted debility, or to faultthe medical personnel who worsened his case.Sara Bass of the Connecticut CFIDS Association wrote a moving testimony forthe CFS Coordinating Committee on what really happened to the youngPaganetti. [For the full text of the excellent Sara Bass testimony, seethe "Pediatric M.E." file at the M.E. Society Website at http://www.cfids-cab.org/MESA/ .] I would like to give credit here to Bassand to the CT CFIDS Association. Desiring to communicate to the public theseriousness of the disease, the organization even provided the funding tobring Snyder's film crew to Paganetti's home to make sure his case wasincluded, according to Bass with whom I spoke on July 19. This is to theircredit, and they should be praised for it because the inclusion ofPaganetti's case at all made the film somewhat better than it otherwisewould have been.But there is another sense in which Synder may have defeated theorganization's original purpose and used Paganetti's family i.e., with thepromise of 15 minutes of fame in the same condescending way that JerrySpringer uses persons who lack the political savvy or education tocomprehend how they are being portrayed. To depict demeaning comments byhis classmates, and to show a scientifically unsophisticated social worker(who calls herself a "clinician") refer to his case as an "experience, nota disease" is unconscionable.What really happened to Paganetti? According to Bass's testimony, at age16 Paganetti came down with a viral infection, saw a number of HMO doctors,and was finally referred to a pediatric infectious disease specialist whotold him that his illness was psychological and that, as Bass reports, "hecould stop his hand tremors if he really wanted to." Bass then quotes thedoctor as telling him to "get your ass back to school." Forced to draghimself to school, too ill to do so, he collapsed, went into shock, and asBass put it in conversation, "never went vertical again." He spent somemonths in the hospital and was subsequently ambulanced to a number ofmedical facilities, including one in New York where he saw a mitochondrialspecialist. The initial doctors' negligent recommendations and the stressand exertion when he was critically ill led him to end up on a feedingtube. Why did Snyder neglect to interview Bass, or quote from her movingtestimony, or at least mention the forces that conspire against those whoare seriously ill with this disease?None of this terrible story of what the system did to Paganetti - thedoctors who forced him to go back to school and caused his collapse, thosewho failed properly to diagnose him and treat him when he was ill, and hisbeing fruitlessly ambulanced from doctor to doctor - is even mentioned inSnyder's film. Paganetti got that sick because the system refused to seethis disease for what it is - a disease that can paralyze you for life fromminimal exertion.As patients continue to suffer abuse, misdiagnoses, psychopathologizing,lack of medical care, and iatrogenic worsening of their condition, the realstory still waits to be told.________________________________________[Maryann Spurgin, Ph.D., is a long-time writer on the science and politicsof M.E./CFS. She is the current director of the Myalgic EncephalomyelitisSociety of America and editor of The American M.E. Review, aresearch-review publication. The M.E. Society website can be accessed at http://www.cfids-cab.org/MESA/ . Dr. Spurgin holds a Ph.D. in philosophyand considers herself an aesthete and a connoisseur of the dramatic andmusical arts. Her favorite rock bands are Patti Smith Group, The Cure, andRadiohead.Dr. Spurgin and the National CFIDS Foundation give permission to photocopy,republish, e-mail, and re-distribute this review so long as nothing isadded or deleted, the author is given proper credit, and copyright noticesare given to the Natl. CFIDS Foundation. The NCF will not be selling IRemember Me, but will continue to sell the film Living Hell.]


A more positive review can be read here: http://www.cfids-cab.org/MESA/reviews1.html


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