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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”


 
 
  
 

The Chronic Fatigue Syndrome:

Prognosis for Recovery from Severe Impairment

and Qualification for Disability Benefits

Donald Schopflocher, Ph.D. (Psychology)

dschop@psych.ualberta.ca

M.E./C.F.S. Society of Edmonton

October, 1995

http://www.cfids-me.org/disinissues/aish.htm

Summary
The current report briefly reviews the definition of the Chronic Fatigue Syndrome and current methods of treatment. Then, a number of recent research studies which examine long-term prognosis for sufferers are examined in detail. It is concluded that Chronic Fatigue Syndrome is frequently an extremely debilitating disorder with no available effective treatments. Medical research has recently demonstrated that a substantial proportion of individuals with Chronic Fatigue Syndrome remain severely impaired indefinitely.

Next, it is noted that both the Federal Government and private insurance companies in Canada now consider CFS sufferers to warrant disability benefits under appropriate conditions. Finally, it is argued that an individual suffering from Chronic Fatigue Syndrome (CFS) in Alberta should be considered for benefits under the terms of the Assured Income for the Severely Handicapped Act and Regulations.

The Chronic Fatigue Syndrome
While reports have been given in the medical literature of disorders resembling what is now known as the Chronic Fatigue Syndrome (CFS) for at least a century, serious research attention has only been directed at this disorder for about a decade. Responding to apparent epidemics in California/Nevada and elsewhere, the Centers for Disease Control in the United States published a case definition of CFS in 1988 (Holmes et al, 1988) designed to allow the careful clinical and research examination of the disorder.

In 1994, after the publication of more than 600 scientific articles on CFS, a revised definition was published, again under the aegis of the Centers for Disease Control (Fukuda et al, 1994). The criteria for diagnosis are presented in Table I below:

Table I:

The Centers for Disease Control (1994)

Case Definition of Chronic Fatigue Syndrome

 

A case of the chronic fatigue syndrome is defined by the presence of the following:

 


1. clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities; and

 


2. the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:


* self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;

 


* sore throat;

 


* tender cervical or axillary lymph nodes;

 


* muscle pain;

 


* multijoint pain without joint swelling or redness;

 


* headaches of a new type, pattern, or severity;

 


* unrefreshing sleep;

 


* postexertional malaise lasting more than 24 hours.

 


It should be noted that even in order to be diagnosed with CFS, an individual must show a prolonged (longer than 6 months) fatigue sufficient to result in a substantial reduction in previous levels of occupational, educational, social, and/or personal activities.
Recently, attention has begun to be directed towards the formal assessment of functional capacity in individuals with CFS. For example, Barrows (1995) summarizes as follows:

The CFIDS [Chronic Fatigue Immune Dysfunction Syndrome] is incorrectly stereotyped as upper-middle-class, white, female hypochondriacs; consequently, symptoms often are belittled or ignored. In reality, CFIDS is a severe medical condition that affects women, men, and children of any race and often causes long-term or total disability. The results of a modified functional capacity evaluation developed by the author and completed on 86 persons with CFIDS between 1988 and 1990 confirm that this population has severe physical and cognitive disabilities that affect their professional, familial, and social lives. (p. 326, italics added)

Treatment of Chronic Fatigue Syndrome
Despite the intensive research effort of the past few years, little is definitively known about the causes or mechanisms of Chronic Fatigue Syndrome (for extensive reviews see the books edited by Straus, 1994; Bock & Whelan, 1993; Dawson & Sabin, 1993; and Goodnick & Klimas, 1993. A selection of recent scientific papers is contained in Schopflocher et al, 1994).
Unfortunately, even less is known about how to treat CFS effectively. Wilson et al (1994) begin their recent review of the treatment of CFS as follows:

...although several controlled studies have been reported, no treatment has been shown clearly to result in long-term benefit in the majority of patients (p. 544)

In a similar vein, Blondel-Hill and Shafran (1993) conclude their review of the treatment of CFS as follows:

  

Despite the multitude of therapeutic modalities reported in trials and in anecdotal reports, there are as yet no established recommendations for therapeutic intervention. (p. 649)

Both reviews agree that the best that can currently be offered patients is good clinical care:

At the present time, reassurance and understanding on the part of caregivers remains the most beneficial therapy of all (Blondel- Hill & Shafran, 1993, p. 649)

The symptomatic treatment of sleep disturbance, pain, and concurrent psychologic morbidity (pharmacologically or psychologically), together with simple advice on lifestyle management and avoidance of factors that may potentiate the disability, would appear to be sound practice. In addition, the management of the secondary effects of chronic illness such as interpersonal conflict, unemployment and resultant financial hardship, in the context of a supportive medical relationship, are paramount. (Wilson et al, 1994, p. 548)

While the current state of basic scientific and treatment intervention findings in CFS do not provide a warrant for optimism, it can be fervently hoped that future research in CFS can begin to provide answers. In this, CFS sufferers must be grouped with sufferers of Muscular Dystrophy, Multiple Sclerosis, and other severely disabling diseases.
Long Term Prognosis for Chronic Fatigue Syndrome
In a recent review of the epidemiology of Chronic Fatigue Syndrome, Wessely (1995) begins his summary of studies on the long term prospects for sufferers of Chronic Fatigue Syndrome as follows:

The prognosis of chronic fatigue in tertiary care is gloomy... Little has changed with the arrival of CFS. Behan and Behan [1988] write that "most of the cases seen do not improve, give up their work, and become permanent invalids". (p. 147)

These early clinical impressions have now been confirmed by medical research involving large numbers of CFS sufferers followed over long periods of time. In the last two years alone, three such studies have been published (Bonner et al, 1993; Wilson et al, 1994; Clark et al, 1995), and a fourth major study has just been completed (Komoroff et al, preliminary report, 1995). The findings of these studies are summarized in Table II below:

Table II. Findings of Recent Studies on Long Term Prognosis of CFS

Study

N of Subjects

Follow up

% no recovery

% partial recovery

% full recovery

 

 

 

 

 

 

Bonner et al, 1993

29/46

48 mo.

45

55

 

Wilson et al, 1994

103/139

38.4 mo. (av.)

36.8

57.3

5.8

Clark et al, 1995

79/98

30 mo. (av.)

59

39

2






 

Komoroff et al, 1995

250

N/A

63.6

28

8.4


In each of these studies, individuals diagnosed as suffering from Chronic Fatigue Syndrome in tertiary care facilities were followed up at varying lengths of time from their initial diagnosis (from 2.5 to over 4.0 years as recorded in the third column of Table II). In considering these figures, it should be noted that for most sufferers, the diagnosis has been preceded by symptoms of the illness for a considerable length of time beyond even the six months required by the case definition of CFS presented in Table I. The second column in Table II indicates the number of individuals followed up and the original number of individuals diagnosed (where available).
The final three columns of Table II report the percentage of subjects in each of these studies who have not recovered, partially recovered, and completely recovered respectively as assessed by various methods. The percentage of sufferers who have shown no recovery ranges from 37% to 64% with a total proportion of 55.6 %. This clearly indicates that the long term prognosis for Chronic Fatigue Syndrome is at best guarded. Almost as alarming is the very small percentage of individuals who have shown complete recovery, a total proportion of only 6.2 %.
Each of the studies reported in Table II also attempted to assess the distinguishing features of individuals who recovered from Chronic Fatigue Syndrome from those who did not. Table III provides a brief summary of the factors found predictive of continuing illness.

Table III. Predictors of Long Term Impairment in CFS

Predictor of Long Term Impairment

Bonner et al

Wilson et al

Clark et al

Komoroff et al

 

 

 

 

 

Previous Psychiatric Disorder

X

X

X

 

Long Duration of Illness

 

 

X

X

Greater severity of symptoms

X

 

 

X

Greater Number of Somatic Symptoms

X

 

X

X

Greater Number of Abnormal Laboratory Findings

 

 

 

X

Poor Initial Response to Treatment

X

 

 

 

Age greater than 38

 

 

X

 


More specifically, Bonner et al (1993) discovered that the following factors were associated with partial recovery from Chronic Fatigue Syndrome: a good response to initial treatment, fewer somatic (bodily) symptoms on initial evaluation, lower levels of fatigue on initial evaluation, and no previous history of psychiatric disorder. Wilson et al (1994) found that no previous history of psychiatric disorder was associated with a partial or full recovery, and also noted that individuals who showed no conviction in a physical cause of the disease were more likely to show a positive outcome (it may be that such individuals are more responsive to psychological and psychiatric treatment modalities). Clark et al (1994) also found that few or no physical symptoms outside the CFS diagnostic criteria, and no lifetime history of psychiatric illness (in this case, dysthymia or chronic mild depression) were associated with a better prognosis. In addition, Clark et al (1994) noted that short durations of symptoms (less than 18 months), high levels of formal education (university graduation), and relative youth (less than 38 years of age) were moderately associated with partial or full recovery. Finally, Komoroff et al (1995) notes that sufferers who initially presented with less muscle weakness, cognitive impairment, anorexia, disequilibrium, and had fewer abnormal laboratory findings were most likely to have partial or full recovery. Komoroff et al (1995) also noted that a short duration of the illness (although in this case, involving symptom durations of less than 60 months) were more likely associated with partial or full recovery.
The associations presented in Table III and discussed above are statistical in nature; that is, they report tendencies only, and do not suggest that every or even a majority of individuals with a particular factor of good prognosis will show recovery. While there is clear overlap between the studies in the risk factors reported, further research will clearly be required before definitive predictions could conceivably be made. This unfortunate picture is specifically noted in the conclusions to these studies, for example:

This study indicates that many patients who have chronic fatigue syndrome diagnosed in a tertiary referral setting remain functionally impaired over time. (Wilson et al, 1994 p. 758)

Identifying the risk factors associated with symptom persistence is essential in improving treatment for patients with symptoms of chronic fatigue or CFS. Most patients with chronic fatigue in tertiary care centers have been ill for several years and factors associated with symptom persistence may be more important than initial etiologic factors in understanding continued illness and disability. (Clark et al, 1994, p. 193)

Disability Benefits for CFS sufferers in Canada
The Federal Government of Canada recognizes CFS as a disorder which may qualify a sufferer for Canada Pension Plan Disability Benefits. In response to my letter, the office of Lloyd Axworthy, Minister of Human Resources Development replied (in part)

...illnesses, such as fibromyalgia, environmental irritant syndrome and chronic fatigue syndrome, are medical conditions well recognized by the CPP. Indeed, many individuals suffering with these conditions now receive CPP disability benefits.

It is now also clear that private insurance companies recognize CFS as a disorder which may qualify sufferers for disability benefits. In a recent conference on CFS, Fibromyalgia, and Repetitive Strain Injury in Vancouver (Physical Medicine Research Foundation 7th International Symposium, University of British Columbia, June 10-12, 1994), Dr. R. Cameron of the London Life Insurance company (in a talk entitled The Cost of Disability: Private Insurance Perspective) presented specific figures on the number of long term disability claims being paid to sufferers of CFS. This was the first time that specific information had been released by a private insurance company about the number and cost of claims. Table IV below presents this data.

  

Table IV: Long term Disability Claims for CFS

London Life, April 1994

# active claims

78

% total claims

1

Proportion female

0.82

Average age

43

av. claim duration in months

37


Since London Life covers about 5% of the group disability insurance of Canadians, estimates can be derived for the total number of individuals across the country who were receiving insurance benefits in 1994. Dr. Cameron estimated that $27,000,000/year in disability benefits are now being paid across Canada to sufferers of CFS by private insurance companies and that as much as $250,000,000 may already have been set aside in trust to cover the future costs of these claims.
Qualification for Disability Benefits under Alberta AISH Program
Qualification for benefits under the Alberta Assured Income for the Severely Handicapped Program is governed by the Assured Income for the Severely Handicapped Act and attendant regulations. The relevant portions of the Act and Regulations are presented in Appendix I.
The previous sections of this report have attempted to demonstrate that strong scientific evidence exists to the effect that:

1. An individual with CFS can be so severely impaired that his or her ability to earn a livelihood is substantially limited;

2. No remedial therapy may be available that would materially lessen that impairment; and

3. There is a high probability that such a person will continue to be affected permanently.

If this evidence is accepted, it should directly follow that an individual suffering from Chronic Fatigue Syndrome may in principle qualify for benefits under the Alberta Assured Income for the Severely Handicapped Act.
Even so of course, it should still remain for particular individuals to demonstrate to the administrators of the program that their impairment, in fact, limits their ability to earn a livelihood, that existing modes of therapy have no prospect of materially lessening their impairment, and that there is reason to believe that they will continue to be affected permanently.
This could be accomplished by requiring appropriate medical documentation of the severity and duration of illness, and the course of treatment of the particular individual.
References
Barrows, D. M., (1995) Functional capacity evaluations of persons with Chronic Fatigue Immune Dysfunction Syndrome, American Journal of Occupational Therapy,49(4), 327-337.
Blondel-Hill, E. & Shafran, S.D. (1993) Treatment of the Chronic Fatigue Syndrome: A review and practical guide, Drugs, 46(4), 639-651.
Bock, G.R. & Whelan, J. (Eds.) (1993) Chronic Fatigue Syndrome, Ciba Foundation Symposium Volume 173, Chichester, U.K.: John Wiley & Sons.
Bonner, D., Ron, M., Chalder, T., Butler, S., & Wessely, S. (1993) Chronic Fatigue syndrome: a follow up study, Journal of Neurology, Neurosurgery, and Psychiatry, 57, 617-621.
Clark, M.A., Katon, W., Russo, J, Kith, P., Sintay, M., & Buchwald, D. (1995) Chronic Fatigue: Risk factors for symptom persistence in a 2 1/2- Year Follow- Up study, American Journal of Medicine, 98, 187-195.
Dawson, D.M. & Sabin, T.D. (Eds.) (1993) Chronic Fatigue Syndrome. Boston: Little, Brown and Company.
Goodnick, P.J. & Klimas, N.G. (Eds.) (1993) Chronic Fatigue and Related Immune Deficiency Syndromes, Volume 40, Progress in Psychiatry Series, Washington: American Psychiatric Press, Inc.
Komoroff, A. (1995) Preliminary report, Journal of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, 8(3), 53-54.
Schopflocher, D.P., Van Aerte, J., & Jorundson, E. (Eds.) (1995) Physician's Package, M.E/C.F.S. Society of Edmonton.
Straus, S.E. (Ed.) (1994) Chronic Fatigue Syndrome, Volume 14, Infectious Disease and Therapy Series, New York: Marcel Dekker.
Wessely, S. (1995) The epidemiology of Chronic Fatigue Syndrome, Epidemiologic Reviews, 17, 139-151.
Wilson, A., Hickie, I., Lloyd, A., Hadzi-Pavlovic, D., Boughton, C., Dwyer, J., & Wakefield, D. (1994) Longitudinal study of outcome of chronic fatigue syndrome, British Medical Journal, 308, 756-759.
Wilson, A. Hickie, I., Lloyd, A., & Wakefield, D. (1994) The treatment of Chronic Fatigue Syndrome: Science and speculation, American Journal of Medicine, 96, 544-550.

Appendix I: Legislation governing the AISH program

Assured Income for the Severely Handicapped Act

Chapter A-48 Revised Statutes of Alberta 1980

4(2) A person is eligible to receive a handicap benefit if he satisfies the Director that
(a) he is a Canadian citizen or permanent resident within the meaning of the Immigration Act (Canada), is ordinarily resident in Alberta and is 18 years of age or more,
(b) he suffers from a severe handicap, and
(c) the portion of his and his spouse's income that is not exempt under the regulations is less than the maximum amount of the handicap benefit prescribed in the regulations.

1(g) "severe handicap" means a severe handicap as defined in the regulations.

Alberta Regulation 331/79

Assured Income for the Severely Handicapped Act

ASSURED INCOME FOR THE SEVERELY HANDICAPPED REGULATION

2 For the purposes of the Act, "severe handicap" means a condition that in the opinion of the Director, after considering any relevant medical reports, physically or mentally so severely impairs an individual that it substantially limits his ability to earn a livelihood and is likely to continue to affect that individual permanently because no remedial therapy that would materially lessen that impairment is available.
AR 331/79 s2: AR 128/92 s2