CFS SOCSEC4 ----------- The following is from the Winter '94 CFIDS Chronicle. Energy Crisis: A Prima Facie Primer for the Evaluation of Disability in Chronic Fatigue Syndrome Jill Wyan Ryan, Attorney, U.S. Office of Hearings and Appeals Boston, Massachusetts The CFIDS Chronicle Winter 1994 "I feel as if I just ran a marathon, and all I did was get out of bed."1 Have you ever been tired? I mean, really tired? So tired you wished you could take a day, a week, a month off from work? Everyone feels this way once in a while. But has fatigue ever rendered you unable to work for a day, a week, a month _ or indefinitely? What if that most sacred of rituals among working- world Homo sapiens _ the morning shower, something used to invigorate, actually left you so drained of energy you had to go back to bed, unable to stand, unable to dress, unable to work? Such is the plight of a growing number of people suffering from the enigmatic disease with an identity crisis: chronic fatigue syndrome (CFS). CFS symptoms are copious, varied and often elusive. Nevertheless, the symptoms comprise a syndrome that is extremely debilitating. At a 1990 press conference in San Francisco, Dr. Paul R. Cheney, a North Carolina internist who treated almost 200 patients in a 1984 cluster outbreak of the strange, recurring symptoms subsequently identified as CFS,3 was asked just how "seriously ill" CFS patients were. He responded that although these people's lives are not destroyed (in the way we think of, for instance, cancer destroying a life), their ability to experience life is almost totally compromised. Dr. Cheney has witnessed the entire social, work and family structures of his CFS patients literally come crashing down around them while they sit helplessly unable to prevent the devastation. It is understandable that there are skeptics who refuse to accept CFS as a viable disease because, as Dr. Cheney has stated, "It's an unbelievable illness."4 The Role of the Attorney "[My] fatigue is to ordinary tiredness what lightning is to a spark." Lawyers are trained to marshal the facts in any given case objectively to arrive at the conclusions dictated by those facts. When tangible evidence is not available, we do the best we can by referring to the circumstantial evidence and then determining whether or not this evidence is convincing. Social Security regulations tell us that, in deciding whether evidence presented in support of disability status is "convincing," we consider whether, inter alia, "information contained in the evidence was given by a person in a position to know the facts."2 This person should, ideally, be the claimant and/or the treating and examining physicians. The challenge, then, is for one who is not a medical expert to assimilate broad medical data regarding a complex disease into a meaningful frame of reference within which to evaluate disability status under the Social Security Act (hereafter referred to as "the Act"). One former CFS support group leader has noted that a good number of CFS patients are reluctant to apply for Social Security disability benefits even though they may suffer from disabling symptoms. For one thing, the process of applying for disability benefits, including completing an application and other forms, interviews and, perhaps, one or more hearings, takes energy and attention _ two things CFS sufferers lack. But the reluctance also springs from another source: applying for disability benefits involves the person's recognition that s/he suffers from a debilitating disease and forces her/him to face the attendant grief over the loss of function and deterioration of quality of life. Moreover, the thought of yet another rejection (added to the ongoing battle for recognition of the illness by family and physicians) is sometimes overwhelming.5 A North Carolina attorney who has represented a number of CFS patients in their claims for disability status feels that a major problem is the fact that many CFS patients don't look as bad as they feel; the effect of CFS upon the physical appearance is, for many, one of the aspects of the disease that is not severe.6 CFS claimants place much hope in the Office of Hearings and Appeals (OHA) disability hearing, feeling that this will be the first time they will be able to see the decision-maker face-to-face and tell their story. But claimants are often cautioned by their attorneys that with a new and poorly- understood disease such as CFS, the chances of prevailing at the hearing level are reduced. Arguments generally focus on convincing Administrative Law Judges (ALJs) that, because of the nature, duration and severity of the claimant's fatigue, s/he cannot perform even a sedentary level of work activity.7 Most disability claims for other diseases can be resolved by proving the existence of a "medically determinable impairment"8 which results from anatomical, physiological or psychological abnormalities, and which is demonstrable by medically accepted clinical and laboratory diagnostic techniques. However, where CFS is diagnosed on the basis of symptoms alone, and these symptoms reflect no "medically determinable impairment" to explain these symptoms, Social Security policy precludes approval of the claim. CFS Is A Disabling Illness "I stopped worrying about tomorrow. Even on a good day I'm little more than half the person I was." CFS is not believed to be a progressive disease. For the majority of CFS patients, symptoms plateau early in the course of the illness and recur with varying degrees of severity for at least six months and, often, over the course of years.9 Most CFS victims experience an ebbing and flowing of their symptoms, with "good" and "bad" days. These patients' "good" days are not really "good"; such days are just more tolerable than the "bad" ones. One man judged a "good" day by whether he was able to get up and shave in the morning.10 Another person warned that, on "good" days, CFS victims tend to slip into a state of denial; this leads to overdoing and, consequently, a "crash."11 This pattern of waxing and waning also contributes to the skepticism of others; if you happen to catch a CFS patient on a good day, it is difficult to believe that s/he is so disabled that s/he is unable to work or to otherwise normally function. The fact is that many victims of CFS are unable to perform "substantial gainful activity" as defined in the Social Security Act and regulations.12 For instance, a significant portion of the population of Lyndonville, NY, hit with a cluster outbreak of CFS in 1985, became unable to work. Members of a rural community, these CFS victims could not maintain their farms. Many fell heavily into debt; others actually lost the source of their livelihood.13 Who, in good conscience, can say that these people were not really ill, but elected to sit idly while their lives were destroyed? The Role of Government "I'm confused a lot of the time, and I have tremendous insomnia." The Centers for Disease Control (CDC) has recognized CFS as a disease that may have a dramatic socioeconomic effect on its victims. The CDC has also recognized that many CFS patients are so severely afflicted that they are forced to quit work for months or years at a time, or they lose their jobs because of an inability to perform work duties. Yet this federal institution has also recognized that, "[CFS victims] often cannot qualify for disability benefits because the illness is not recognized as a legitimate disease in many areas."14 It must be bewildering to persons with CFS who apply for disability benefits to be denied because their illness is not recognized by the state agencies acting for the Social Security Administration (SSA), and/or by ALJs (on appeal from state agency denials), when a national federal institution such as the CDC has clearly recognized it, and has been authorized by the same federal government that controls the SSA to spend millions of dollars further studying it with a view toward identifying a cure. In 1988, Theodore Van Zelst and Barry Sleight presented testimony on CFS to both the House and Senate Appropriations Subcommittees. As a result of this testimony, "Congress stated that the SSA guidelines on CFS are not sufficiently defined and that this situation is producing uneven application of what should be a consistent national policy for CFS patients."15 Currently, the only "guideline" in existence is a small section in the Medical Evaluation section of SSA's Program Operations Manual System (POMS) which, although recognizing CFS as "a systemic disorder consisting of a complex of variable signs and symptoms," contains little else that would assist an ALJ in determining whether a CFS claimant is, in fact, "disabled" within the meaning of the Act, which requires a medically determinable impairment.16 Both the House and Senate Appropriation Committee reports on H.R. 525717 have directed SSA to improve the evaluation procedures for disability claims involving CFS.18 Thus far, SSA's Office of Disability, Office of Medical Evaluation has instructed all OHA offices to identify CFS cases and to forward claims folders of such cases (after disposition) to that Office for further case tracking and analysis. The Office of Medical Evaluation issued an Addendum to the Physician's Training Manual on Impairment Evaluation in February 1991 on the subject of evaluating "fatigue." This Addendum does contain a small section addressing CFS, and it refers to the working case definition of the disease recognized by the CDC, which is appended to the Addendum.19 Although some slight progress has been made in SSA's effort to address CFS in terms of disability status,20 this author believes that SSA could and should do more to confer upon CFS the same status it confers upon other chronic illnesses. Evaluating Disability "I keep myself in a box. As long as I'm in the box, I do alright. If I cross the margins of this box, I don't do very well." Despite the fact that CFS has been identified as a viable disease process, Office of Hearings and Appeals (OHA) adjudicators must remember that not every claimant who alleges fatigue, or even chronic fatigue, suffers from CFS. In fact, Dr. Anthony L. Komaroff, a recognized spokesperson on CFS, has stated, "The vast majority of patients coming to a doctor complaining of fatigue or lack of energy or pep do not have chronic fatigue syndrome."21 In determining disability, ALJs are required to follow the five-step sequential evaluation process delineated by regulation (see Figure 1).22 This includes (l) an initial determination about whether the claimant is engaging in substantial gainful activity; (2) an evaluation of the nature and severity of the claimant's alleged impairment(s); and (3) a determination as to whether the claimant's impairment(s) meet or equal the criteria found in any of the categories of impairments set forth in appendix 1 to subpart P of Regulations No. 4. In most CFS cases, the claimant's impairment will not meet or equal these "listings" of government-defined disabilities unless he or she has an associated illness of "listing" severity, either physical or mental. Therefore, the adjudicator will have to continue the sequential evaluation process, addressing the claimant's residual functional capacity in view of any functional limitations imposed by his impairment(s) and will then have to examine (4) whether the claimant is capable of performing his/her past work. In steps 1 - 4, the claimant is responsible for proving disability. If it is determined that the claimant is not capable of doing the type of work s/he previously did, the burden shifts to the Secretary of Health and Human Services to show that (5) the claimant can perform other work which exists in significant numbers in the regional and national economy in light of age, education and work experience, and, therefore, should be denied benefits.23 The majority of cases involving an allegation of disability on the basis of CFS will focus on whether the claimant has some medically determinable physical or mental impairment other than CFS, and, if so, whether s/he retains the residual functional capacity to perform his/her past or other work activity. The testimony of a vocational expert may be needed at the OHA hearing. Jay A. Goldstein, MD, director of the Chronic Fatigue Syndrome Institute in Los Angeles, has developed a "CFS Symptom Checklist" (see Figure 2) which may be of assistance to ALJs and attorneys trying to determine whether a claimant is suffering from CFS, and to what extent.24 In this author's view, the checklist is useful in categorizing signs and symptoms if the claimant has consulted a physician who specializes in, or is reasonably well-informed about, CFS. Even if the claimant has not consulted a specialist, Dr. Goldstein's checklist may prove useful as a guideline for analyzing existing medical and testimonial evidence. Charles W. Lapp, MD, a North Carolina physician currently practicing with Dr. Cheney, also offers a helpful line of questioning in evaluating a patient who presents with abnormal fatigue in order to determine whether or not he might be a CFS sufferer25 (see Figure 3). Dr. Lapp also questions patients about viral and other symptoms, as reflected in Dr. Goldstein's checklist. (I have adapted his line of questioning in a form more suitable for OHA disability hearings.) A Maryland attorney has suggested that physicians might be surprised to see the following printed on a letter requesting an assessment of disability for Social Security purposes: Warning: A Casual Assessment Could Be Hazardous To Your Patient's Health.26 Perhaps ALJs would be similarly surprised to see the same message (with "claimant's" substituted for "patient's") on the file folder of every CFS case. I do not mean to imply that ALJs take a casual approach to making determinations of disability as a matter of routine; these trained decision-makers certainly appreciate the fact that there is a human being behind every Social Security number whose physical and/or emotional well-being may depend upon his case being given the individual, caring attention it is due. Rather, I am suggesting that, because it may be difficult for anyone to evaluate disability in a CFS claimant (even medical professionals), it may also be easy to fall into the habit of summarily denying all such claims (on the basis of misinformation or lack of information) or allowing them all (because of inability to quantify disability in CFS cases and unwillingness to deny benefits to claimants who may be legitimately qualified for them). The resolution to this dilemma is (1) a better understanding of the illness and (2) the use of tools such as the CDC's "working case definition,"27 the threshold questions used by Dr. Lapp and the checklist supplied by Dr. Goldstein. Legal Precedents "My friends thoughtlessly say, 'At least you don't have to get up to go to work.' Have they forgotten I am not getting up for anything else either?" In the 1990 case of Marshall v. Sullivan28 the appellant had been found "not disabled" within the meaning of the Act despite her allegations of chronic fatigue following a bout of chronic infectious mononucleosis. The ALJ relied primarily on the opinion of a non-examining Social Security medical expert who found that the appellant retained the capacity for at least light work on the basis of her reported ability to run up to two miles a day as of October l984, the results of treadmill testing in July l984 and a laboratory study revealing a normal reading for the presence of the Epstein-Barr virus.29 The court remanded the case to the Secretary of Health and Human Services, via the district court, with instructions to award benefits to the appellant. The court stated that the claimant suffered from an identifiable condition which could reasonably be expected to produce disabling symptoms and that, therefore, she fulfilled the requirements of the Act and implementing regulations. With respect to "chronic fatigue syndrome," the Marshall court stated that, "by whatever name, the disease evidently exists and often has severely debilitating effects."30 The Sixth Circuit Court of Appeals in Cohen v. Secretary of Health & Human Services31 stated that, although the appellant, a professional ballroom dancer, continued dancing throughout much of the period for which she was claiming disability status and although she attended law school on a part-time basis during the relevant period, "the level of activity maintained by [her during the time she was suffering from CFS] is a tribute to her courage and determination in refusing to surrender to the debilitating effects of her illness."32 The court found that these activities did not warrant a finding that she retained the residual functional capacity to perform her past work as a university professor or to maintain other substantial gainful employment. Rather, the appellant's efforts to continue dancing and to pursue educational opportunities were viewed by the court as a "struggl[e] to maintain some semblance of normalcy in a life otherwise turned on end by the onset of chronic fatigue syndrome."33 The Cohen court also noted that CFS is characterized by periods of exacerbation and remission and is likely to present a paucity of objective evidence. But the court also recognized that a claimant is not required to prove the exact cause of his or her condition, stating that "the mere fact that the medical community is still exploring the contours of chronic fatigue syndrome . . . does not make [the claimant's] symptoms any less disabling."34 Acknowledging that the case at bar was a "close case,"35 the Cohen court reminded us that the Social Security Act is a remedial statute, the intent of which is inclusion rather than exclusion, and which must be "liberally applied."36 Manifestations of CFS "I know I'm sick; I was flat on my back in bed for five months, followed by a year-and-a-half of staying in bed at least three days a week, doing nothing." It is difficult, if not impossible, for a person whose level of energy fluctuates dramatically from day to day, or from week to week, to maintain regular work activity. Imagine the frustration of never knowing when or where your level of energy will plummet, leaving you unable to function more than marginally. It is no wonder, then, that CFS patients are clearly at risk for suicide, since despair is among suicide's most common causes.37 There may be disagreement about the cause of CFS, but there is none about its effect.38 Some researchers are predicting that an estimated 12 million Americans could contract CFS before the end of the 1990s; this could have a noticeable and devastating effect upon this country's work force.39 One leading authority refers to CFS as "the disease of the '90s."40 Among many experts, CFS is felt to represent a major threat to world health and economics, second in impact only to AIDS. Many CFS victims in all countries include teachers, health care workers, clergy, flight attendants, etc.; individuals who have close contact with the public on a regular basis. The economic and social cost of this unemployment cannot be measured in terms of dollars and cents.41 Thus, CFS as an important world-wide epidemic can no longer be ignored. There have been no cases of fatalities related to CFS reported to the CDC,42 but 60 to 70 percent of CFS patients remain significantly ill for at least one to three years.43 If a CFS patient is ill for more than three years, chances for total recovery become less than 10 percent.44 However, despite increasing evidence that this affliction is a real disease with identifiable immunologic, serologic and neurologic abnormalities, many institutions, physicians and members of the legal profession remain skeptical. Therefore, the need for continued research to establish objective markers for CFS and to illuminate its pathogenesis is critical; professional dissension must be alleviated if this very serious and widespread health problem is to be adequately addressed. There are five compelling reasons to conclude that CFS is an organic disease, despite the relatively nonspecific nature of its constellation of symptoms and the lack of specific laboratory data. First, although many of the symptoms of CFS are commonly seen in psychiatric disorders, other manifestations are in direct opposition to symptoms of depression. Second, some quite severe symptoms are clearly organic. Third, "and most compelling," patients tend to give "the same remarkable description" of how their illness began. Fourth, although most patients cannot identify any close friend or family member who also developed the disease, there have been multiple incidents of people in close contact with one another being affected in clusters. Finally, there are now enough objective findings common to most CFS patients to establish a clear working case definition of the disease.45 CFS is an elusive disease which has, to date, challenged researchers in their attempts to quantify and qualify it. There is a definite paucity of objective evidence to which health care professionals can point in diagnosing CFS; it still remains a disease diagnosed by process of elimination. However, many now well-characterized diseases were at one time in a similar situation: multiple sclerosis, systemic lupus erythematosus and AIDS, to name a few. For years, many knowledgeable people simply would not believe that diseases such as rheumatoid arthritis were real because they were poorly understood and were, therefore, dismissed by the medical community. All of these diseases, and many others once "unknown," had to weather the storm of skepticism before becoming fully recognized.46 CFS patients can well imagine what other patients must have gone through, suffering from symptoms of a disease that, in the eyes of medical research, did not exist, although they knew that their symptoms and their illness were real. Eventually, their claims were taken seriously. CFS, at long last, is gradually being accepted in the medical world; it's about time the legal/judicial world took it seriously, too. No one denies that there are many unanswered questions and that a shroud of mystery still surrounds this strange disorder. Dr. Komaroff says, "Only one question has been answered to my satisfaction: Is chronic . . . fatigue syndrome a real disease? I believe the answer is yes."47 References 1. This quotation, and others appearing infra, represents a statement made by one of a number of victims of CFS. 2. 20 C.F.R. 404.708(a) (1991). 3. Cowley G: Chronic Fatigue Syndrome, A Modern Medical Mystery. Newsweek, Nov. 12, 1990, at 64. 4. The CFIDS Chronicle, Journal of the CFIDS Association of America, 15 (Sept. 1990) [hereinafter cited as CFIDS Chronicle] (emphasis in original). 5. Id. at 12 (1988 Compendium, Section V). 6. Id. at 11. 7. See id. at 3, 10. 8. Social Security Act 223(d)(3), 42 U.S.C. 423(d)(3) (1988); 20 C.F.R. 404.1505, .1508, .1528 (1992). 9. Centers for Disease Control, Pub. Health Serv., U.S. Dep't of Health & Human Services: The Chronic Fatigue Syndrome (May 1990) [hereinafter cited as CDC Pamphlet]. 10. CFIDS Chronicle, supra note 4, at 20 (Mar. 1991); Anthony L. Komaroff, MD, interview by Dr. Howard Smith, WBZ Radio, Boston, Massachusetts (Dec. 28, 1990). 11. CFIDS Chronicle, supra note 4, at 16-17 (1988 Compendium, Section V). 12. See Social Security Act 216(i), 42 U.S.C. 416(i) (1988); 20 C.F.R. 404.1572 (1991). 13. CFIDS Chronicle, supra note 4, at 15. 14. CDC Pamphlet, supra note 9, at 1. 15. See CFIDS Chronicle, supra note 4, at 8 (1988 Compendium, Section II). 16. Office of Policy, Social Security Administration (SSA), Program Operations Manual System pt. 04, ch. 245, subch. 75, 005 (March 1991) (POMS DI 24575.005). 17. 101st. Cong., 2d Sess., enacted as Pub. L. No. 101-517, 104 Stat. 2190 (1990). 18. Associate Comm'r for Legislation & Congressional Affairs, SSA, Legislative Report, 101st Cong., no. 3, at 4 (June 28, 1991). 19. Office of Medical Evaluation, Office of Disability, SSA: Physician's Training Manual on Impairment Evaluation, Addendum 5 (Feb. 1991). 20. In fact, at a recently held Annual Meeting of the American Bar Association in Atlanta, an ALJ from this Agency conducted a mock hearing of a CFS case. 21. Altman LK: Chronic Fatigue Syndrome Finally Gets Some Respect, N.Y. Times, Dec. 4, 1990, at C1, C14. 22. 20 C.F.R. 404.1520, 416.920 (1991). 23. Id. 24. Goldstein JA: Chronic Fatigue Syndromes: The Limbic Hypothesis. The Haworth Press, Inc., l993. 25. Lapp CL: Chronic Fatigue Syndrome is a Real Disease, 43 NC Family Physician 6, 7 (Winter 1992). 26. National Chronic Fatigue Syndrome Ass'n, Physician Information: Chronic Fatigue Syndrome (The Thief of Vitality) 38 (rev. ed. 1991). 27. Holmes, et al.: Chronic Fatigue Syndrome: A Working Case Definition, 108 Ann Intern Med 387 (l988). 28. No. 89-2166, 1990 U.S. App. LEXIS 16787 (4th Cir. Sept. 21, 1990) (unpublished). 29. Id. at 6-7. The term "chronic fatigue syndrome" has since been renamed and redefined by some, in part to remove the inference that it is caused by the Epstein-Barr virus. 30. Id. at 3 note (emphasis added). 31. 964 F.2d 524 (6th Cir. 1992). 32. Id. at 530. 33. Id. at 531. 34. Id. at 529; see also Marshall v. Sullivan, No. 89-2166, 1990 U.S. App. LEXIS 16787 (4th Cir. Sept. 21, 1990) (unpublished). 35. 964 F.2d at 531. 36. Id. (quoting Marcus v. Califano, 615 F.2d 23, 29 (2d Cir. 1979)). 37. CFIDS Chronicle, supra note 4, at 17 (1988 Compendium, Section V). 38. Id. at 24 (1988 Compendium, Section IV). 39. Id. at 21 (1988 Compendium, Section V). 40. Cowley, supra note 3, at 62. 41. The Cambridge Symposium on Myalgic Encephalomyelitis (M.E.), The Nightingale, vol. 1, issue 3, Spring 1990, at 1. 42. CDC Pamphlet, supra note 9, at 2. 43. Anthony L. Komaroff, M.D., lecture to the Massachusetts CFIDS Association (May 1991). 44. Id. 45. Komaroff, The 'Chronic Mononucleosis' Syndromes, 22 Hosp Prac 71, 72-73 (1987). 46. Fuerst, Free Yourself From Chronic Fatigue, Prevention, Jan. 1990, note 65 at 62-63; Zoler, Chronic Fatigue, Taking the Syndrome Seriously, Med World News, Dec. 12, 1988, note 54, at 4l. 47. Id. at 75. About the Author: Jill Wyan Ryan is a U.S. Office of Hearings and Appeals attorney who is sympathetic to the cause of persons disabled with CFIDS. She wrote this primer to educate legal professionals about CFIDS and patients about their rights. She wants PWCs to know that "there are those in this agency who advocate the cause of CFIDS sufferers and who are trying to educate our agency about it to prevent [PWCs] from [unfairly] being denied disability status." 1. How long have you been ill? (If CFS, should be more than six months.) 2. Did this illness come on suddenly? (Almost all CFS victims can recall an inciting date or event, usually associated with a viral illness or a major stressor.) 3. How severe is the fatigue? When you tried to work, did you "crash" as soon as you came home? Were you able to "catch up" on weekends? 4. Who does the housekeeping, shopping, cooking, laundry and yard work? (About 40 percent of Dr. Lapp's patients manage essential activities of daily living only, and rely on family or friends to maintain the household. When asked to estimate their activity level, most respond that they usually function at between 20 and 40 percent of normal.) 5. Do you have problems sleeping? (Most will complain that they feel exhausted but have difficulty sleeping and/or falling asleep. Approximately 20 percent of Dr. Lapp's patients state that they sleep all the time.) 1. Determine whether claimant is currently engaging in "substantial gainful activity." (If so, the claimant is automatically ineligible.) 2. Evaluate the nature and severity of alleged disability. 3. Determine whether the alleged impairments meet any of the government- defined "listings" of disabling impairments. (If so, disability is customarily awarded. If not, the evaluation continues.) 4. Judge whether the claimant is able to do the type of work s/he did in the past. 5. In order to deny disablility, the Secretary must prove that the claimant is capable of performing other "substantial gainful activity" readily- available in the marketplace. Figure 1: Five-Step Sequential Evaluation of Disability Figure 3: Evaluating CFS } ... where CFS is diagnosed on the basis of symptoms alone, and these symptoms reflect no 'medically determinable' impairment to explain these symptoms, Social Security policy precludes approval of the claim. ~ CFS Symptom Checklist This symptom checklist is not sufficient to diagnose CFS unless other disorders have been ruled out by appropriate assessment. (Reprinted from "CFS: The Limbic Hypothesis," 1993, by Dr. Jay Goldstein. Please see Materials Order Form, pgs. 63-64 for ordering information) A.Did your illness begin: o abruptly o gradually At what age? ____ Current age: ______ B.Did your illness begin with a flu-like illness? o yes o no If yes: were lab tests done? o yes o no What tests: _________________________________ Were abnormalities found? ______________________________________________________ C.Were you treated for psychological problems prior to the onset of this illness? o yes o no If yes, how were you treated: Psychotherapy: o yes o no Medication: o yes o no D.Did your illness follow exposure to new carpet/paint, tung oil, industrial solvents, pesticides or other environmental toxins? o yes o no If yes, please describe: ________________________________________________________ E.Were you subject to prolonged stressors during childhood (e.g., abusive or dysfunctional home)? o yes o no If yes, please describe: ______________________________________ F.Were you subject to unusual or extreme stressor in your life immediately prior to the onset of illness? o yes o no If yes, please describe: _____________________________________ G.Have you had silicone breast implants? o yes o no Have you had silicone injections? o yes o no Have you had collagen injections? o yes o no If yes to any of the above, did you have these procedures before or after the onset of your CFS symptoms? o before o after H.Are your symptoms worse: o in the summer o in the winter o no difference Rate the severity of your symptoms from 0 to 10: _____1.Fatigue _ usually made worse by exercise. Is your level of activity less than 50% of normal? o yes o no _____2.Cognitive function problems: _____attention deficit disorder including concentration problems _____calculation difficulties (describe) ______________________________ _____memory disturbance (describe) ________________________________ _____spatial disorientation, getting lost in familiar locations, problems judging distances _____frequently saying the wrong word _____3.Psychological problems _____depression _____anxiety, which may include panic attacks and phobias (irrational fears) _____personality changes, usually a worsening of a previous mild tendency _____emotional lability (mood swings) _____psychosis _____4.Other nervous system problems _____sleep disturbance_____headaches _____changes in visual acuity_____seizures _____numb or tingling feelings_____lightheadedness, feeling "spacey" _____disequilibrium_____frequent unusual nightmares _____difficulty moving your tongue_____ringing in ears _____paralysis_____severe muscular weakness _____blackouts_____intolerance of bright lights _____intolerance of alcohol_____alteration of taste, smell and hearing _____non-restorative sleep_____decreased libido _____twitching muscles ("benign fasciculation") _____5.Recurrent flu-like illness, often with chronic sore throat _____6.Painful lymph nodes, especially on sides of neck and under the arms _____7.Severe nasal and other allergies, often worsening of previous mild problem _____8.Weight change, usually gain _____9.Muscle and joint aches with tender "trigger points" or fibromyalgia _____10.Abdominal pain, diarrhea, nausea, intestinal gas, "irritable bowel syndrome" _____11.Low-grade fevers or feeling hot often _____12.Night sweats _____13.Heart palpitations _____14.Severe premenstrual syndrome (PMS) _____15.Rash of herpes simplex or shingles _____16.Uncomfortable or recurrent urination _ pain in prostate _____17.Other symptoms: _____rashes_____hair loss_____impotence_____chest pain_____dry eyes & mouth_____cough _____TMJ syndrome_____endometriosis_____freq. canker sores_____cold hands & feet_____heart rhythm disturb._____carpal tunnel synd. _____pyriform muscle synd._____thyroid inflammation_____various cancers_____gum disease_____mitral valve prolapse_____easily out of breath _____worsen with temp. extremes_____ multiple sensitivities to medicine, food, etc. Additional comments: _____________________________________________________________ Fig. 2: Dr. Goldstein's CFS Symptom Checklist } ... applying for disability benefits involves the person's recognition that s/he suffers from a debilitating disease and forces her/him to face the attendant grief over the loss of function and deterioration of quality of life. ~ } It must be bewildering to persons with CFS who apply for disability benefits to be denied because their illness is not recognized by the state agencies acting for the Social Security Administration (SSA) ... when a national federal institution such as the CDC has clearly recognized it, and has been authorized by the same federal government that controls the SSA to spend millions of dollars further studying it with a view toward identifying a cure. ~ } The 'Cohen' court reminded us that the Social Security Act is a remedial statute, the intent of which is inclusion rather than exclusion, and which must be 'liberally applied.' ~ .