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The True Costs to the Nation of
Public Apathy Regarding
Chronic Fatigue Syndrome (CFIDS)

Mary McKinney Schweitzer, Ph.D.

Associate Professor of Economic History
Department of History
Villanova University
Villanova, PA 19085
(on medical leave since January 1995)

Please do NOT use the above address for mailing.

Working Paper - August 31, 1998
Copyright © Mary Schweitzer 1997, 1998
Please do not cite or reference without prior permission.
To contact the author, write to schweit2@ix.netcom.com.

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The True Costs to the Nation of Public Apathy Regarding Chronic Fatigue Syndrome

Mary Schweitzer, Ph.D.

ABSTRACT

Chronic Fatigue Syndrome (also called CFIDS or M.E.) is a relatively "new" disease that sprang into public consciousness in the mid-1980s. Unfortunately for the victims, the appearance of this disease has coincided with a national mood of resentment about "having to" pay to study diseases and treat the victims. "We would like to," our Congressional representatives say, "but we can't afford it." To the contrary, we cannot afford to ignore it. The true costs of this disease to the nation are the goods and services that patients -- over 400,000 American adults -- would have produced had they been well. This paper estimates a lower-bound figure of $7.5 billion in lost goods and services every year CFIDS victims remain untreated, undiagnosed, and invisible. Since the estimate was based on personal income (assuming that the labor market is efficient and that wages equal productivity), we can add that the nation loses $2.5 billion annually lost income tax revenues that would have been collected had these people been able to work. Somehow the $13 million allocated so begrudgingly by Congress to the study of this disease seems penny wise and pound foolish, when each year 200 times that amount is lost to Federal coffers. If empathy for the victims or a sense of national purpose is insufficient, then perhaps we can understand the need to invest in knowledge of this disease to reduce the current costs incurred by the nation's ignorance.


The True Costs to the Nation of
Public Apathy Regarding
Chronic Fatigue Syndrome

Mary Schweitzer, Ph.D.

Working Paper - August 31, 1998
Copyright © Mary Schweitzer 1997, 1998
Please do not cite or reference without prior permission.
To contact the author, write tome-cfs@comcast.net


How do we measure the costs to society of a long-term debilitating illness that affects at least 400,000 American adults?

A true calculation would have to include the immense human suffering of those who are rendered invalids, and those who are disabled and function much below normal lives. It would include the break-up of families, the burdens of caretakers whose costs go unrecognized by communities that have no idea of the extent of the needs of the stricken. It would include grief.

In this essay, however, we will take the easy way out, and ask merely what is the cost to the economy of leaving so many Americans trapped in this illness. Even here our estimate will be lower than the true costs, because we will not include the loss of productivity when caretakers must function both as prime income earner in the household, and as nurse, housekeeper, single parent. We will ask one question: what is the opportunity cost to the nation represented by the lost productivity of those stricken by the illness CFIDS/M.E., also called chronic fatigue syndrome?

One standard way to approach the costs of illness is to add up medical costs and social welfare costs - an approach that views the ill only as burdens to society. But this is inaccurate for two reasons. For one thing, medical costs and social welfare expenditures are merely transfers from one segment of the population to another; from the standpoint of economic growth, it represents stasis. The other reason is that it takes the view that invalids are burdens, and that expenditures on invalids are a type of consumption; with the consumer (the taxpayer or the private benefactor) feeling "good" for doing good. Expenditures on invalids are viewed as altruistic behavior, and in the rigid world of economic analysis in the 1990s, altruistic behavior is a nice frill if you can afford it.

The true costs to the economy, however, are the opportunity costs of the lost productivity of invalids, and reduced productivity of the disabled. Seen in this light, failure to develop mechanisms to identify patients in the early stages of the disease - which we already know greatly reduces it's impact - is simply economic foolishness. Failure to invest in ways to return invalids to a more productive life by relieving their symptoms is equally foolish.

The ultimate purpose of this essay, then, will be to demonstrate the annual opportunity costs of the disease CFIDS/M.E. to the United States economy. One may conclude that any investment that can reduce those opportunity costs by an amount equal to the investment is economically sensible - because the productive will continue to produce year after year, while the investment will be a one-time event.

CFIDS is defined by the United States as a condition whereby the patient has suffered at least six months of unexplained, severely debilitating fatigue, plus four of the folllowing symptoms: significant cognitive dysfunction (including memory loss and impaired concentration); sore throat; muscle pain; multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity; absence of refreshing sleep; and postexertional malaise lasting more than 24 hours. [1]

M.E., myalgic encephalomyelitis, has been studied as a disease in the United Kingdom and Canada for forty years. However, the outbreaks in Incline Village, NV and Lindonville, NY, were not viewed as having any relationship to the disease - indeed, it was a couple of years before the Lyndonville and Incline Village doctors knew about each other. The U.S. Centers for Disease Control at first ignored this "new" disease, and then took it on as if it had no known counterpart. [2]

When physicians were brought in by the CDC in 1988 to define and name this "new" disease, they turned their backs on the history of M.E. in the U.K. and renamed it "chronic fatigue syndrome," because there was no proof of brainstem inflammation, and hence a name with "itis" attached to it must be inappropriate. Ignoring the numerous physical symptoms associated with the disease, the CDC chose to focus on only one, the vaguely conceptualized "fatigue", and named it Chronic Fatigue Syndrome. Thus a new disease was "born".

Given that this disease has only been recognized by the CDC since 1988, it is not surprising that epidemiological evidence has for years been scarce and inadequate. The first estimates of the incidence in the population came from a study of diagnosed patients through the diagnosing physician. This study was strongly skewed toward those who had the wherewithal to continue to search for a diagnosis and were not given any diagnosis for years except "depression" - men with the disease when misdiagnosed would also be labeled 'depressed," but sometimes were given cardiac or neurological classifications. Consequently, the CDC's first reports as to the prevalence of the disease both strongly underestimated its impact both in numbers and in breadth. 90 percent of the diagnosed were female, and all were upper middle class or wealthier. Hence the term "yuppie flu", and the stereotype of the overachieving educated female.

An early study in the 1980s had suggested that CFIDS was a chronic form of mononucleosis that was named CEBV for Chronic Epstein-Barr Virus, on the basis of a finding that 90 percent of CFIDS patients showed antibodies for EBV. The study was premature, and both the CDC and NIH publicly embarrassed when it was pointed out that 90 percent of the population as a whole tests positive for EBV antibodies. Both the NIH and CDC then shifted to psychological explanations - a peculiar professional choice, as neither Stephen Straus of the NIH, nor William Reeves of the CDC, the two government officials in charge of the disease, had much professional experience with the fields of psychiatry and psychology. In fact, the NIMH counterpart of Reeves and Straus insisted that CFIDS met none of the diagnostic criteria for major depression, somatization disorders, or hysteria.

The public's knowledge of the disease rests at this point: mostly white and female, mostly upper middle class yuppies, and mostly psychological. The costs of the disease, it appeared, were mostly self-imposed. Indeed, one could make the argument that it was nature's punishment to women who dared go beyond their natural limits. If you didn't draw that conclusion yourself, both Reeves and Straus would make it for you. This view reached its epitome in the works of the British psychologist Simon Wessely, and publications by historian Ed Shorter and English literature professor Elaine Showalter (once again, neither of whom had any professional experience with medicine or the fields of psychology and psychiatry.) These authors directly linked CFIDS with the Victorian ailment of "hysteria", or "the vapors", a disease of unhappy middle class women, and claimed that only Freudian therapy could cure it.

So many unproven hypotheses that CFIDS has an entirely psychological cause have been sent to the public on the basis of this early poorly designed demographic study, and the refusal of the CDC and NIH to take advantage of decades of research on M.E. Ironic also because today it is representatives of the American government, such as Stephen Straus, who have played such an important role in persuading the governments of England and Australia to reject the name and diagnostics (and hence decades of information) of the disease Myalgic Encephalomyelitis, and rename the disease Chronic Fatigue Syndrome, thereby opening the door to change a disease once perceived as entirely physical in nature to one now seen as the 1990s version of "the vapors".

In the late 1980s, the NIH and CDC went to the public frequently with their hypotheses about CFIDS. This early misinformation and wildly inaccurate guesses continue to dominate the public's conceptualization of the disease: that it is an illness of white yuppie women; that it is mostly psychological and can be cured by normal psychological counseling; and that at the worst a patient will be able to resume a completely normal lifestyle within two years. As a consequence, the public - and the representatives of the public in Washington - remain sadly ignorant of the true costs to all concerned of this serious, long-term debilitating physical illness. The patient is herself the cause, and contains within herself the cure. It is merely a problem of attitude and motivation; inability to handle "stress" and refusal to face one's real limits. Why throw good money after bad? Indeed, the "tough love" solution is to turn one's back on those who "suffer" from such self-indulgence. "Get some exercise." "Find a hobby." "Have some Prozac." Cure yourself, or suffer the consequences. It was not the public's problem.

Against this short-sighted approach to the study of CFIDS can be placed the work of U.S. demographers in the 1990s in Chicago, Seattle, San Francisco, and Kansas City. [3] Each study has returned the same results: using the most conservative diagnostic criteria, the minimal number of adult CFIDS victims in the U.S. is 400,000.[4] The disease is not confined to yuppie white women at all. Rather, it is an equal opportunity affliction, affecting equally those of all incomes, ethnic groups, ages, and both genders. Slightly more women than men are affected (6 women to every 4 men), and the disease is most likely to break out in the middle, most productive, years of life. In other studies, it has been shown that adolescents are affected at the same rates as the middle aged [5] -- and there is some suspicion that a first episode in adolescence may go into remission and later reappear full blown when the victim reaches his or her late 30s and 40s. [6]

The Kansas City study, funded by the CDC, now shows that after 5 years the majority of patients with CFIDS remain disabled at levels below 50 percent of normal functioning. Ten years after onset, 45 percent of patients remain so disabled; some will have improved to the 50 percent level, others will have deteriorated, and still others maintained a condition that never changed. CFIDS is not a short-term virus such as mononucleosis from which one can take short-term leave and then return to a normal life; it will be at least a decade before a most CFIDS patients can expect to see any type of normalcy return to their lives.[7]

In addition to the new perspectives gained on the demographics of the disease, studies have emerged in the last few years demonstrating significant physical abnormalities in CFIDS patients. Patients show abnormal brain blood perfusion in SPECT scans (consistent with the measurable memory loss and expressive aphasia); numerous cardiac abnormalities identifiable with haltar monitoring; neurologically induced low blood pressure; abnormally low blood volume and red blood cell mass (60-70 percent of normal); inability to achieve levels of metabolism consistent with aerobic exercise - jumping straight from resting to anaerobic metabolism in less than 3 minutes on a stationary bicycle; numerous immunological deficiencies such as very low killer cell counts, abnormally high white blood cell counts; a major defect in a portion of RNA called RNaseL, part of the body's natural viral defense mechanisms, whereby an essential portion is completely missing; statistically significant, abnormally low cortisol levels (completely contrary to the finding of abnormally high cortisol levels in patients with primary melancholic depression); failure to respond to antidepression therapies beyond improvement in those who had secondary depression. [8]

While we are still far from proving a cause or cure for the disease CFIDS, enough is now known to be able to state with authority that a minimum of 400,000 American adults suffer from a long-term disease that leaves them, as infectious disease specialist Mark Loveless, M.D., noted in 1995, "as ill as an AIDS patient in the final two months of life."[9] Tragically, the absence of public information about the disease has left at least 250,000 of these - a quarter million Americans - not only debilitated and unable to work, but also undiagnosed and untreated.

The CDC has made no effort, and there are no plans on the horizon, to formulate a diagnostic for the disease in its prodrome stage, before the tell-tale six months of collapse, ignoring their own evidence that states at least one-half of CFIDS patients had symptoms of the disease for up to five years before becoming completely disabled. There has been no effort to categorize the stages of CFIDS such as exist in the study of Multiple Sclerosis - though it is known through clinical work that relapse and remission can be a hallmark of the disease. Hence, those who are in remission believe they are cured, and risk falling back into a state of dependency because they do not know they must continue to care for themselves. Most recently, the first formal demographic study of pediatric and adolescent CFIDS was dropped by the CDC for "lack of funds," with no explanation as to why or to where the Congressionally allocated funds had been transferred. Perhaps a hundred thousand adolescents in the United States lose important years of study and social maturation to this disease, isolated with their families by public ignorance. The CDC, so quick to tell the public that "yuppie disease" was psychological, remains silent.

No wonder, then, that the public does not realize how costly this disease is - not in terms of how much it costs healthy people to "have to" support "these people" - but in terms of the opportunity cost of losing the productivity of hard-working American citizens to this horrid and debilitating condition.

In our calculations, we will use an estimate of 500,000 CFIDS adults. We will also make the assumption that income is a reasonable proxy for productivity -- in other words, we will assume that the labor market is free and competitive and clears without artificial impediments.. This way we can use national income statistics available from the Department of Labor for a rough calculation of the productivity loss incurred nationally with so many people left unable to work to their potential, or in many cases unable to do any productive work at all.

Ideally, we would want to adjust the estimate for the increase in prevalence among adults in their most productive years, from the mid-30s to the mid-50s, but there really aren't solid enough studies of prevalence by age group to be able to do so. The alternative, implicitly assuming that the disease is distributed equitably among all age groups from age 20 to 65, will result in an underestimation of the lost productivity.

Since a significant difference in average incomes remains between men and women in the United States, and the prevalence rates of the disease CFIDS differ by gender, we will estimate the costs separately for men and for women. We will also take into account the expected percentage of each group that would be working part time without the disease when estimating the costs of some victims of the disease shifting from full time to part time work. The estimates of post-onset work practices that we will use derive mainly from the work of Katrina Berne; over 90 percent of her patients were working before onset, and that is the figure we will use for unemployment pre-onset (10 percent). At the same time, we are not going to make any estimates for non-market productivity, particularly household productivity. We also have made no attempt to estimate the costs to national productivity of the market labor hours lost by caretakers of people with CFIDS. All in all, the upward bias in the data resulting from the first assumption should be more than corrected by the downward bias resulting from the second and third.

According to the Bureau of Labor Statistics,[10] in 1996 (the last year for which these figures were available), 30 percent of women workers held part time jobs, while only 14 percent of male laborers worked part time. Katrina Berne, a Ph.D. psychologist near Tucson, Arizona, found that only 11 percent of patients could work full time after onset. 34 percent worked part time, and the remaining 55 percent were unable to work at all. (Note: 90 percent of the patients in her study were working prior to onset.).[11]

If 500,000 American adults had the disease in 1996, then, 450,000 of them should have been working. The average annual income for full time workers currently is $31,000 for men and $23,700 for women (based on weekly wages); for part-time workers, $7500 for men and $8060 for women. Using the estimate of 4 men for every 6 women, that would be 180,000 men and 270,000 women: 25,200 men part-time, 154,800 men full-time; 81,000 women part-time, and 189,000 women full-time. After onset, however, these numbers would change dramatically: 61,200 men and 91,800 women part-time; 19,800 men and 29,700 women full-time.

The 500,000 CFIDS victims, male and female, would thus have been expected to produce $10.1 billion in goods and services this year had they remained healthy. Instead, we can expect them to only produce $2.5 -- a loss of $7.6 billion dollars to the national product. Note: when sick, many of them may receive disability benefits, but that is not counted in national product because it is merely a transfer of income from one group to another, not an increase in total national productivity. Payments for private disability insurance amount to an increase for patients' incomes, but a decrease for the insurance companies; likewise, SSDI payments lower the government's revenues by the same amount they increase the patients'. In both cases, on a national level it is a washout: a zero sum. What we were interested in here was the concept of productivity: goods and services that could have been added to the national out put had these people been well.

Since our estimates are based upon gross income, we can also assume that roughly one-third of the lost income is lost revenues for the federal government in the form of income taxes. Hence, the devastation wrought by the disease CFIDS upon patients not only costs the nation as a whole over 7.5 billion dollars; it also reduces federal income by $2.5 billion. How penny wise and pound foolish to quibble over a national research allocation of $13 million annually to CFIDS research, when nearly 200 times that much is lost to the federal government annually because this disease is left undiagnosed, untreated, and ignored.

This, then, is the true cost to the nation of ignoring a disease such as chronic fatigue syndrome (or CFIDS): $7.5 billion dollars in lost goods and services to the nation as a whole; $2.5 billion in lost federal revenues from income taxes that were never earned and hence never collected.

Ten years after the first case definition was published and accepted by the CDC, there has been little change in the government's approach to the disease. Although the CDC in 1995 announced that chronic fatigue syndrome had been added to the CDC's "list of Priority-1 New and Reemerging Infectious Diseases,"[12] the disease has not been characterized an enumerated disease by the CDC and therefore no systematic data is being collected. The Chronic Fatigue Syndrome Coordinating Committee of the U.S. Dept. of Health and Human Services, a unique committee chaired by the Surgeon-General and chartered explicitly by Congress in 1997 to promote coordination of federal activities with regard to the disease, has yet to issue a single press release on the illness.

In 1997, the FDA classified chronic fatigue syndrome "a series or life-threatening illness," to permit "Cost-Recovery Investigational New Drug (IND)" status for Ampligen, the only drug in the FDA pipelines for use in CFIDS, as well as a repeat of the 1990 double-blind study. However, the FDA has refused to release the drug according to the "Fast Track Provision" of the "FDA Modernization Act" passed by Congress in the fall of 1997, and when a patient asked publicly how to procure funds to speed up the testing process, the FDA spokesman responded, "find a private foundation." [13]

Because of lack of funding, a critical demographic study of CFIDS in adolescence was summarily dropped by the CDC on August 9, 1998, without warning or explanation. Every demograhic study of chronic fatigue study to date has noted that at least half of patients have significant symptoms before the six-month collapse required for diagnosis (prodrome), yet there is as yet no initiative within any part of the CDC or NIH to produce a clinical definition of this early state. A study by Dr. David Bell of Lyndonville, NY, noted that patients who were diagnosed and treated earlier had a much better chance of recovery; how many disabled patients could be functioning today if a method had existed for early diagnosis?

Chronic fatigue syndrome, despite its name, has been characterized by both the CDC and the FDA as a severe and life-altering illness. That in itself should be enough to arouse national attention -- the plight of half a million adult Americans trapped in a devastating disease about which little is known; over a quarter of a million Americans left undiagnosed and untreated. However, we live in a society today that has somehow become convinced that as much as we would like to "help the unfortunate," we cannot afford it.

To the contrary, we cannot afford to ignore it. It is high time we rolled up our sleeves and got back to work: there is a serious illness out there and invalids who need our attention. Investment in national health is an economic as well as social investment, and only the federal government can see that this investment is made properly. Let us find an answer to chronic fatigue syndrome. The rewards will be far greater than the costs.

Mary Schweitzer, August 31, 1998

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Endnotes

1. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A., "The chronic fatigue syndrome: a comprehensive approach to its definition and study, the International Chronic Fatigue Syndrome Study Group." Ann Intern Med 1994 Dec 15:121(12);953-959. Return to the text.

2. Most of the story of the CDC's slow recognition of the disease CFIDS is drawn from Hilary Johnson, Osler's Web (NY: 1996). Return to the text.

3.Jason LA, Taylor R, Wagner L, Holden J, Ferrari JR, Plioplys AV, Plioplys S. Lipkin D, Papernik M., "Estimating rates of chronic fatigue syndrome from a community-based sample: a pilot study." Am J Community Psychol 1995 Aug:23(4);557-568. Bates DW, Schmitt W, Buchwald D, Ware NC, Lee J, Thoyer E, Kornish RJ, Komaroff AL. "Prevalence of fatigue and chronic fatigue syndrome in a primary care practice." Archives of Internal Medicine 1993; 153(24): 2759-2765. Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Komaroff AL. "Chronic fatigue and the chronic fatigue syndrome: prevalence in a pacific northwest health care system." Annals of Internal Medicine 1995; 123: 81-88. Return to the text.

4. William Reeves, M.D., Head of the Centers for Disease Control's Division of Viruses, etc.; presentation to the Chronic Fatigue Syndrome Coordinating Committee of the U.S. Department of Health and Human Services, October 20, 1997. Return to the text.

5. David Bell, "Preliminary Investigation of CFIDS in Childhood and Adolescence," paper presented at a Confeerence on Pediatric CFIDS run by the National Institutes of Health, at the U.S. Bureau of Health and Human Services, Washington, DC., April 1998. Return to the text.

6. Evidence pulled together from discussion lists on Internet by the author over a three-year period. Return to the text.

7.Reeves, presentation to CFSCC, October 1997. Return to the text.

8. Bates DW, Buchwald D, Lee J, Kith P, Doolittle T, Rutherford C, Churchill WH, Schur PH, Wener M, Wybenga D, et-al. "Clinical laboratory test findings in patients with chronic fatigue syndrome." Arch Intern Med 1995 Jan 9:155(1);97-103. Buchwald D, Wener MH, Komaroff AL. "Anti-neuronal antibody levels in chronic fatigue syndrome ptients with neurologic abnormalities." Arthritis and Rheumatism 1991; 34(11): 1485-6. Boda WL, Natelson BH, Sisto SA, Tapp WN. "Gait abnormalities in chronic fatigue syndrome." Journal of the Neurological Sciences 1995; 131(2): 156-61. Schwartz RB, Komaroff AL, Garada BM, Gleit M, Doolittle TH, Bates DW, Vasile RG, Holman BL. "SPECT imaging of the brain: comparison of findings in patients with chronic fatigue syndrome,AIDS dementia complex, and major unipolar depression." American Journal of Roentgenology 1994; Klimas NG, Salvato FR, Morgan R, Fletcher MA. "Immunologic abnormalities in chronic fatigue syndrome." J Clin Microbiol 1990 Jun:28(6);1403-1410. Konstantinov K, von Mikecz A, Buchwald D, Jones J, Gerace L, Tan EM. "Auto-antibodies to nuclear envelope antigens in chronic fatigue syndrome." J Clin Invest 1996 Oct 15:98(8);1888-1896. Lerner AM, Goldstein J, Chang CH, Zervos M, Fitzgerald JT, et al. "Cardiac Involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, Michigan,1991-1993." Infectious Diseases in Clinical Practice 1997; 6: 327-33 Gupta S, Aggarwal S, See D, Starr A. "Cytokine production by adherent and non-adherent mononuclear cells in chronic fatigue syndrome." Journal of Psychiatric Research 1997; 31(1): 149-56. Demitrack MA, Dale JK, Straus SE, Laue L, Listwak S, Kruesi MJ, Chrousos GP, Gold PW. "Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome." J Clin Endocrinol Metab 1991 Dec:73(6);1224-1234 DeLuca J, Johnson SK, Ellis SP, Natelson BH. "Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease." J Neurol Neurosurg Psychiatry 1997 Feb:62(2);151-155. Bell and Streeten on low blood volume and low red cell mass in the Journal of Chronic Fatigue Syndrome Winter 1998. Suhadolnik, RJ., Peterson, DL., O'Brien, K., Cheney, PR., Herst, CVT., Reichenbach, NL., Ning, K., Horvath, SE., Iacono, KT., Adelson, ME., DeMeirleir, K., DeBecker, P., Charubala, R., and Pfleiderer, W. Biochemical evidence for a novel low molecular weight 2-5A-dependent RNaseL in chronic fatigue syndrome. Journal of Interferon and Cytokine Research, July 1997(17):377-385. Bou-Holaigah I, Rowe PC, Kan J, Calkins H. "The relationship between neurally mediated hypotension and the chronic fatigue syndrome." JAMA 1995 Sep 27:274(12);961-967. Return to the text.

9. Mark Loveless, M.D., Congressional Briefing, May 1995, Washington, DC. Return to the text.

10. "Labor Force Statistics from the Current Population Survey," "National Employment, Hours, and Earnings," Bureau of Labor Statistics, Washington, D.C. Return to the text.

11. Katrina Berne, Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) . (1995). Return to the text.

12.Dr. William Reeves, public testimony given at the Chronic Fatigue Syndrome Hearings jointly sponsored by the U.S. Senate and House of Representatives at the Capitol Building, Washington, D.C., May 1995. Return to the text.

13.FDA representative to Chronic Fatigue Syndrome Coordinating Committee(CFSCC) of the U.S. Dept. of Health and Human Services, formal response to a patient query during the public session of the May 1998 meetings of the CFSCC. Return to the text.

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