Bad day - Disability - sooo upset

Discussion in 'Fibromyalgia Main Forum' started by malony33, Jun 3, 2003.

  1. malony33

    malony33 New Member

    I am a teacher. I LOVE my career, but I have finally faced the fact that I have to retire early. The pain, FATIGUE, IBS, BRAIN FOG, well, you all know. I was considered a master teacher, and now I say the wrong word, go blank, give jumbled directions. I can no longer think on my feet. I embarrassed myself so often in class this year. I am a shadow, no, WORSE, a parody of what I used to be. This is so profoundly sad; my students - past and present - that have found out and visit to see if it's true and how I'm doing are so wonderful. When I taught them years ago, I was energetic and animated and so...alive. I can hardly bare to think of those days.

    Sorry for the woe is me tone, but I think I'm close to hitting bottom tonight. You see, I found out I may apply for a disability retirement - thank God - and I'm in the process of gathering the paperwork, etc. My FMS/CFS doc is a giant in the field, and has written a well-documented report; I'm also gathering letters from other MD's who have treated me for related conditions (gastro for IBS, two psychs for depression and anxiety, MD for asthma and allergies)and other MAJOR health "events" ( brain tumor, Workers' Comp. from a fall). Problem is, even with all this and other testaments from my bosses, etc., the state STILL wants another treating doc! So, my MD sent me to another good fibro/CFS doc for an examination and assessment to be the second MD. He began to take a history, then told me he would not examine me let alone issue his own report until I have a sleep study and return to him for treatment - nutritional plan, supplements, meds. He was a STUDENT of MY doctor in med school AND worked for my MD for SIX YEARS, and says unless I follow through, he will only write a letter that supports my doctor's conclusions based on his vast knowledge and high regard in this field.

    I am exhausted from the trip, and out of tears. How many MD's will I have to haul myself to? He said he knew I was the real thing, and I do not want him to compromise his integrity, but...oh, God, I don't even know what. I cannot do any of this anymore - doctors and tests and more meds and conflicting opinions and supplements. I have to retire, no matter what, and the disability $$$ is not even half my salary, so I am not looking for a cushy retirement. I've worked at one job or another since I was twelve, and never took money from anyone. But now...I'm sick in a way I could never foresee. The level of my depression tonight is scaring me.

    Does anybody out there know a good doc in NJ or nearby who will look over years of tests, documention, etc., examine me himself, then write a report for my dis. application. I really need you all now. I'm ashamed to even write a letter like this; it sounds so self-centered and weak. PLEASE help me if you can.

    Thanks.
    Barb

    [This Message was Edited on 06/03/2003]
  2. Princessraye

    Princessraye New Member

    You do not sound self centered and weak!!!!

    It is really a shame people have to fight so hard when they are already fighting this DD.

    I don't live in NJ and can't help you with that.

    I have been working 16 years with this DD and am only 45. I keep changing jobs to get something I can handle, sadly that meant cutting my pay in half in the past 8 years. (and I am single) If there were any way on earth I could apply for disability , I would do it in a heart beat .

    Take a deep breath. Lots of them. You just heard this and it takes time to take it all in and make a plan.

    Perhaps since this Dr. was a student of your Dr. they will confer and the new DR. will have a different attitude. If not, I hope someone on the boards can help you find a good Dr. who will help you.

    You are in my prayers.
  3. mother of three

    mother of three New Member

    Barb;

    So sorry to hear about your woes. Doctors can be so irritating !!! Try to stick it out as best you can. I am sure that at the end you will find the solution you need.

    Sorry to hear that you have to give up teaching. I had to give up my job a few months ago as a full-time case manager because of FMS. I had to take a pay cut of over one thousand per month. I just could not take all the traveling, and home visits that went with the job. I have taken a desk job as a case manager. I feel ineffective and useless most of the time!! I also just finished my first year of graduate school when I was diagnosed with FMS. I waited 14 years to return to school and now I probably will not be able to get my M.S.W.!!! My doctor has told me to stop working completely and to stop going to graduate school, but so far I have refused to stop and have not applied for disability despite my debilitating symptoms which are similar to yours. I know that I am being stubborn and my pride is probably going to be my downfall!! Anyway, just wanted to share with you to let you know you are not alone in your suffering. Remember all the good years that you had teaching and all that you have given to your students and the people around you. Keep your chin up!!!

    Kim
  4. Applyn59

    Applyn59 New Member

    You are reaching out for help - that is not being
    weak or self-centered. At least I hope not or I am too! LOL

    It is just so difficult to go through these processes.
    I got on SSDI at 27 and it was a struggle to the end.
    I had many drs to back me up etc. They wanted me
    to go to one of their drs. He told me I would never
    be better (failed back surgery) and was all doom and gloom. Yet, his letter to SSDI stated that 3months
    of disability would be reasonable! HELLO!! What is it with these drs.

    I don't know what to tell you. There is a CF Clinic
    in New Jersey that I considered going to but never
    made it. I bet that is your well-known dr. If not,
    maybe you could look into it.

    Sorry I can't be of more help. Just want
    you to know you have my empathy and wish
    you well.

    Lynn
  5. teach6

    teach6 New Member

    It really does get better. I can completely relate to what you are going through. I am a former teacher who has beeen trying for disability retirement in VA for the past year. The biggest problem for me has been that the Medical Review Board does not believe in CFIDS, which is my main dx.

    I know how frustrating it is to go to so many docs. I am going to another tomorrow, who has done research on CFIDS since 1986. My retirement attorney is sending me there because he wants to have an other opinion than just my own doc's.

    My own doc is also highly renowned within the local medical community for his leadership in treating CFIDs and FMS. Both are affiliated with George Washington University. It will take a lot out of me to go there tomorrow. I will have to take the subway and then walk to the appointment. I don't trust myself driving that far and I have a great deal of difficulty standing for more than a few minutes at a time.

    I can also relate to how difficult it is for a teacher to leave the classroom. I always felt that teaching was my calling. I loved my students and really felt like I was able to reach a lot who hadn't been reached by other teachers. However I will have to say that I have not missed it one bit this year. It takes all the energy I have just to go to my regular appointments and do things like grocery shopping.

    When you have finished with your retirement application I suggest that you begin working on getting SSDI. That will supplement your retirement income to a better level. I wish you luck in all this. If you need to talk with another teacher just let me know.

    Barbara
  6. starstella

    starstella New Member

    I don't know what part of NJ you are in. If you post your email I will get back to you this evening, probably not until after 7pm.
  7. catnip51

    catnip51 New Member

    I live in NJ, but you don't state where you are. I'm about 30 min. from AtTlantic City and 30 min from Phila. I had a great attorney In Philadelphia. If you email me (address in bio) I will let you know what helped me. My attorney was great and woulnd't even consider taking a case if he
    wasn't qute sure he could win it for me. I got my disability in 14 mos. from the date I applied. I don't know why you have to be going through all this. Maybe you should let the attorney handle your disability. If you have any questions email me and I'll let you know. If you write make sure the topic in my email reads FM/CFS support group so I won't accidently delete it.

    Cathy
  8. tulip922s

    tulip922s New Member

    Hi Barb,

    So sorry to hear you have such a full plate especially when you are so sick. You are not alone in this disability "nightmare". I was a corporate trainer for a large insurance company when I just woke up one day with CFS/FM and have been sick for the last 2 years. I have subsequently lost my job, my home, and my marriage. (Ex could not tolerate illness or living with an "invalid"). I am not telling you this to trivialize your situation, but, to let you know, there are people out there going through the same thing. My private insurance sent me to 3 independent doctors, a functional capacity evaluation, and a psychiatrist. Social Security sent me to 3 more doctors. All of them said I was disabled under the guidelines of CFS/FM as well as my own doctor and rheumy and still I was denied SSD.

    I got a lawyer and have appealed and finally have a hearing date this summer. It's such a mess,,,to have to go through so much when you are so sick. I live in NY state and my case is being reviewed in NJ,,,my lawyer said NY is soooooo far behind and NJ does not have the backlog, as well as the fact that NJ judge has been coming back with favorable deicisions,,,,if that helps.

    Hang in there,,,,the whole process is physically and mentally exhausting for a pitiful amount of money in the end. Talk with your doctor about what is happening with the other doctor,,,,see what he suggests. Seek help in your area for rides to the doctor from church groups and volunteer centers and most of all HANG TOUGH,,,,this is a nasty, nasty process,,,,don't cave in,,,,keep fighting. Best of luck, Barb and keep us posted on how you are doing. Tulip
  9. loopyloo

    loopyloo New Member

    I live in the UK and so i cannot help with the doctors in the Usa but i just wanted to say dont give in and give up the fight for what you are entitled to you have worked all your life and should get disability like every one else just to let you know we are all here for you to support you and listen to you you can ask anythink and some one will give you an answer you are not alone we are like a big family here so fight and let us all know how you got on
    ((((((((((((big hugs )))))))))))))))))
    loopyloo xx
  10. givebliss

    givebliss New Member

    It really is. If we had cancer, we'd be treated with the utmost compassion and dignity. What infuriates me is that, even though CFS/FMS has finally been recognized as a valid illness, we are still marginalized as inconsequential whiners! By doctors and insurers!

    I can understand the average person not getting it, but once these DD's recieved official medical validation, there is simply NO excuse for those that get to play God with our lives NOT to be compassionate, understanding and INFORMED. We wouldn't accept it for any other illness, so why do they think we'd accept it for CFS/FMS?

    Discrimination due to ignorance does NOT excuse the deplorable treatment we receive by the medical and insurance community. Many still believe these are illnesses that we could control .. if we just tried hard enough.

    Beneath my email is an excellent article I found .. my apologies if it's already been shown on this site. Some of the charts won't come out here, so to view it properly, go to the Co-Cure website.

    Following is an outstanding excerpt which clearly states our level of disability:

    "While the current state of basic scientific and treatment intervention findings in CFS do not warrant 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."

    Show THAT to your doctors, insurers, family and friends!
    I doubt anyone would dare treat the beloved Mousketeer, Annette Funicello, who has MS, the way we're treated!

    You know what we need, don't you? We need a celebrity spokesperson who has one or both of these DD's to speak out. It's pathetic but true that when a celeb takes up the cause, suddenly the media is all over it, doing specials and articles, and, suddenly, it's "real". Most recent example would be Michael J. Fox.

    Bliss Out.



    The Chronic Fatigue Syndrome:

    Qualification for Disability Benefits



    Donald Schopflocher, Ph.D. (Psychology)

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

    October, 1995

    Revised June, 1998



    Summary

    The current paper briefly reviews the definition of the Chronic Fatigue Syndrome. Then, a number of recent research studies which examine quality of life of CFS sufferers, current methods of treatment, and long-term prognosis for sufferers are reviewed 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 may remain severely impaired indefinitely. Finally, qualification for disability benefits is briefly reviewed with an emphasis on the situation in Canada. Both the Federal Government and private insurance companies in Canada must, and do, now consider CFS sufferers for disability benefits under appropriate conditions.

    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 was directed at this disorder only since the 1980s. 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.





    Quality of Life and Activity Restriction in Chronic Fatigue Syndrome

    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. Nevertheless, the extent of the disruption in the lives of CFS sufferers has only recently begun to be understood.

    Since 1995, there have been four studies published which focus specifically on evaluation of the quality of life of patients suffering from Chronic Fatigue Syndrome. Each of these studies evaluated substantial numbers of current CFS sufferers using standardized assessment tools. The conclusions from these studies are substantially identical:

    This study does … provide a general assessment of the impact of CFS on the everyday functioning of CFS patients. This impact has been shown to be extensive, supporting the observations of significant disruptions in usual daily activities which are required for assigning a diagnosis of CFS. (Schweiter, Kelly, Foran, Terry & Whiting, 1995) (Italics added)

    In summary, whatever its pathophysiologic basis, there was marked impairment in this group of patients with CFS that is more severe than that found in several other chronic illnesses. Overall health and ability to function in work and social roles were affected more than physical or mental function. (Komaroff, Fagioli, Doolittle, Gandek, Gleit, Guerriero, Kornish, Ware, Ware, & Bates, 1996) (Italics added)

    We have found that, even in comparison with chronically-ill medical populations, our patients with CFS and CF appear strikingly disabled, particularly in the domains of role functioning, social functioning and vitality. (Buchwald, Pearlman, Umali, Schmaling, & Katon, 1996) (Italics added)

    This study suggests that the QOL [Quality of Life] of persons with CFS is significantly affected by the illness in all domains. The very low scores… compared with other chronically ill populations suggest that QOL [Quality of Life] is particularly and uniquely disrupted in CFS. (Anderson & Ferrans, 1997)

    Two of the studies (Buchwald et al, 1996; Komaroff et al, 1996) used the same instrument, the Medical Outcomes Study Short-Form General Health Survey (SF-36) thus giving an opportunity for a direct comparison. The SF-36 is a self-report questionnaire designed to assess general health status and quality of life. Its careful creation and validation have made it a highly respected measurement instrument (e.g. McDowell & Newall, 1996). Scores on each of 8 sub-scales range from a low of 0 indicating severe difficulties to a high of 100 indicating no difficulties. Appendix I gives example questions from each of the scales. Figure 1 shows the scores for CFS sufferers and normal control subjects from these two studies.



    It is clear that CFS sufferers have substantially reduced functioning in all measured domains compared to normal controls. In fact, the reductions are greater than in other chronic illnesses. The similarities between the two studies are striking despite the fact that one study used subjects from the U.S. east coast (Komaroff et al, 1996) and the other used subjects from the U.S. west coast (Buchwald et al, 1996). In addition, a British study (Wessely et al, 1997) reported very similar scores on a shorter version of the same test on a smaller number of CFS sufferers.

    A number of studies (Anderson & Ferrans, 1997; Bombardier & Buchwald, 1996;Lloyd & Pender, 1992; Schweitzer et al, 1995) have reported on the impact of CFS on employment and work activities. Table II summarizes these studies.



    Table II Employment Rates in CFS


    Study
    N of subjects
    % Employed

    before CFS
    % Employed

    during CFS
    % Employed

    at followup







    Lloyd et al, 1992
    24 Female
    51.8
    19.2



    18 Male
    72.9
    36.4


    Schweizer et al, 1995
    47 (70% F)
    87
    51


    Bombardier et al, 1996
    208/203 (85%F)

    59
    60

    Anderson et al, 1997
    110 (73% F)

    26






    The percentages of individuals employed after contracting CFS differ dramatically from study to study, a finding that might be partially explained by differences not only in gender employment rates but potentially also by country or region in which the study was conducted. Nevertheless, the proportion of individuals not employed while suffering from CFS is considerable. The study by Bombardier & Buchwald (1996) is unique in that it demonstrates that employment levels did not change after an average of 2.7 years of followup from first assessment. This study also reported that 35% of individuals with CFS (or a diagnosis of Chronic Fatigue insufficient to meet the criterion for CFS) but who maintained employment reported performance decrements in the workplace. In line with other patterns reported in this study, it is likely that the percentage is greater for CFS than for CF sufferers.

    To summarize, it appears that between ¼ and ½ of CFS sufferers are unable to maintain previously held employment, while substantial proportions of those who do maintain employment report decreased work performance.

    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 Bock & Whelan, 1993; Dawson & Sabin, 1993; Demitrack & Abbey, 1996; Goodnick & Klimas, 1993; and Straus, 1994. A selection of scientific papers is also contained in Schopflocher, Van Aerte, & Jorundson, 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)

    Since these reviews were published, additional reviews (e.g. Epstein, 1995; Fukuda & Ganz, 1995; NIAID, 1996; Sharpe, 1996) have echoed this insistence on good clinical care. A representative example of treatment guidelines which reflects this consensus is provided by the National Institute of Allergy and Infectious Diseases Information for Physicians (NIAID, 1996) which offers the following treatment principles for sufferers of Chronic Fatigue Syndrome:

    · Establish therapeutic alliance with patient

    · Dispel misinformation about the disease

    · Use a medical team approach

    · Prescribe symptomatic treatments

    · Urge stress reduction

    · Introduce slowly graduated exercise

    · Suggest rehabilitation therapy to develop energy conservation techniques

    · Schedule regular followup visits

    · Give emotional support. (NIAID, 1996, p.8)

    While the current state of basic scientific and treatment intervention findings in CFS do not warrant 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 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 moderate to large numbers of CFS sufferers followed over time. The findings of these studies are summarized in Table III below:

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


    Study
    Number of Subjects
    Follow up
    % no recovery
    % partial recovery
    % full recovery








    Hinds et al, 1993
    291/393
    N/A
    46
    35
    19

    Peterson et al, 1994
    62/68
    12 mo.
    60
    40


    Vercoulen et al, 1996
    246/298
    18 mo.
    79.7
    17.1
    3.2

    Clark et al, 1995
    79/98
    30 mo. (av.)
    59
    39
    2

    Wilson et al, 1994
    103/139
    38.4 mo. (av.)
    36.8
    57.3
    5.8

    Bonner et al, 1993
    29/46
    48 mo.
    45
    55






    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 1 to over 4 years as recorded in the third column of Table III). 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 III indicates the number of individuals followed up and the original number of individuals diagnosed (where available).

    The final three columns of Table III 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 80% with a total proportion of 57.4 %. 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 8.7 %. It should also be noted that the meaning of partial recovery is neither clear nor consistent across these studies.

    Several additional studies or preliminary reports have been published which support the general findings detailed in Table III. Komaroff and associates (1995) report that 63.6% of 250 CFS sufferers show no improvement on followup while only 8.4% show full recovery. Gibbons, Macintyre, & Richards (1997) present data that suggests that a subset of CFS sufferers become more disabled over time. Bombardier & Buchwald (1995) report on a combined sample of 445 CFS sufferers and sufferers of chronic fatigue who did not meet the criteria for a CFS diagnosis. In followup which averaged 1.5 years, only 2% reported complete recovery, 26% reported moderate to significant improvement, 36% reported slight improvement, 12% reported no change, and 24% reported worsening of symptoms. While the percentages were not reported separately for CFS sufferers, the authors note that the rating was significantly worse for CFS sufferers.

    Though it is generally recognized that the long term course for a particular individual suffering from Chronic Fatigue Syndrome is unpredictable (e.g. NIAID, 1996), some of the studies reported in Table III attempted to determine whether certain characteristics generally distinguish individuals who recovered from CFS from those who did not. Table IV provides a brief summary of the factors found statistically predictive of continuing illness.

    Table IV. Predictors of Long Term Impairment in CFS



    Predictor of Long Term Impairment
    Bonner et al
    Wilson et al
    Clark et al
    Vercoulen et al

    Previous psychiatric disorder
    X
    X
    X


    Greater number of somatic symptoms
    X

    X
    X

    Greater severity of symptoms
    X


    X

    Longer duration of illness


    X
    X

    Older Age


    X
    X

    Poor Initial Response to Treatment
    X








    More specifically, Bonner et al (1993) discovered that the following factors were statistically 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, Vercoulen et al (1996) found that younger age, shorter duration of complaints, lesser fatigue severity, fewer physical attributions, lower functional impairment and a greater sense of control over symptoms were associated with a better prognosis.

    Several additional studies or preliminary reports also described predictors of poor prognosis. Komaroff (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. Komaroff (1995) also noted that a short duration of the illness (involving symptom durations of less than 60 months) were more likely associated with partial or full recovery. Dobbins et al (1997) also reported that recovery rates were higher for individuals having suffered CFS for less than 60 months. In addition, Dobbins et al (1997) reported that persons whose CFS had a gradual onset were less likely to recover than those whose CFS had a sudden onset as an apparent result of an infectious agent. Finally, Bombardier & Buchwald (1995) reported that among CFS sufferers only the presence of a mild depression at time of first assessment was associated with a poor prognosis.

    The associations presented in Table IV 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 Assessment of CFS sufferers

    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 ImmuneDysfunction 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)

    A special issue of the Journal of Chronic Fatigue Syndrome (Klimas & Patarca, 1997) deals specifically with clinical and legal issues surrounding disability assessments in sufferers of CFS. The volume contains critiques of current assessment practices such as:

    It is rare to read an Independent Medical Examination report that reflects any knowledge of the criteria for diagnosis or associated laboratory results seen in CFS. The very concept of independent medical examinations must be questioned when the examinations are extremely superficial and are bought and paid for by the third party payers. Objectivity is doubtful when fees for such exams may run as high as six to eight thousand dollars. (Peterson, 1997, p.7)

    It also contains specific suggestions for improving the quality of disability assessments, such as:

    In summary, the scientific evidence and clinical experience support a paradigmatic shift in the evaluation of disability of patients with CFS. This evaluation should and can become a standardized, quality-controllable, sequential process whose steps must include adequate documentation of diagnosis, careful evaluation of comorbid psychiatric disorders, objective neuropsychological and exercise tolerance testing, and thorough assessment of pain severity and its impact upon daily activities. (Manu, 1997, p. 15)

    Disability Benefits for CFS sufferers

    Reports in the medical literature on rates of disability compensation for sufferers of Chronic Fatigue Syndrome are sparse. In an early report (Lloyd & Pender, 1992), it was reported that 43% of CFS sufferers in Australia received sickness benefit or invalid pension at some time during their illness. In the United States, it was reported in an unpublished 1991 study (Bombardier & Buchwald, 1996) that 15% of 550 CFS sufferers had acquired U.S. social security disability insurance benefits

    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.

    In a 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 V below presents this data.



    Table V: 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.

    Two recent developments (Jenish, 1998; Maclean’s, 1998) might ease the burden for Chronic Fatigue Syndrome sufferers seeking disability benefits from insurers. In the first, an Alberta court found in favour of a CFS sufferer suing her insurer for refusing to provide disability benefits. The decision recognized CFS as a physical rather than a psychological condition. In the second development, the Quebec College of Physicians recognized CFS as an illness. The college president indicated that ‘Employers, insurance companies and courts "must adapt"…’ (Maclean’s, 22/06/98, p. 45).

    Qualification for Disability Benefits

    The previous sections of this report have attempted to demonstrate that strong scientific evidence exists to the effect that:

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

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

    · 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 most existing Disability plans.

    Even so, of course, it should still remain for particular individuals to demonstrate to plan administrators that their impairment does, in fact, limit 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, the course of treatment of the particular individual, and by the provision of an appropriate disability assessment by a qualified specialist.

    References

    Anderson, J.S., & Ferrans, C.E. (1997) The quality of life of persons with Chronic Fatigue Syndrome, Journal of Nervous and Mental Disease, 185, 359-367.

    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.

    Bombardier, C.H. & Buchwald, D. (1995) Outcome and prognosis of patients with chronic fatigue vs Chronic Fatigue Syndrome. Arch. Intern. Med., 155, 2105-2110.

    Bombardier, C.H. & Buchwald, D. (1996) Chronic fatigue, Chronic Fatigue Syndrome, and Fibromyalgia: Disability and health-Care use. Medical Care, 34, 924-930.

    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.

    Buchwald, D., Pearlman, T., Umali, J., Schmaling, K., & Katon, W. (1996) Functional status in patients with Chronic Fatgiue Syndrome, other fatiguing illnesses and healthy individuals, American Journal of Medicine, 101, 364-370.

    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.

    Demitrack, M.A., & Abbey, S.E. (Eds.) (1996) Chronic Fatigue Syndrome. New York: The Guilford Press.

    Dobbins, J.G., Reyes, M., Cole, N., Steel, P.L., Randall, B., & Reeves, W.C. (1997) The natural history of CFS in the CDC Surveillance System, Journal of Chronic Fatigue Syndrome, 3, 132-133.

    Epstein, K.R. (1995) The Chronically Fatigued Patient, Medical Clinics of North America, 79, 315-327.

    Fukuda, K. & Gantz, N.M. (1995) Management strategies for Chronic Fatigue Syndrome, Federal Register, July 1995.

    Fukuda, K., Straus, S.E. Hickie, I. et al (1994) Chronic Fatigue Syndrome: A comprehensive approach to its defintion and study, Ann Intern Med , 121, 953-959.

    Gibbons, R., Macintyre, A., & Richards, C. (1997) Features of chronicity in ME/CFS: A case series in the U.K., Journal of Chronic Fatigue Syndrome, 3, 111.

    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.

    Hinds, G.M.E. & McCluskey, D.R. (1993) A retrospective study of Chronic Fatigue Syndrome. Proc. Royal College of Physicians, 23, 10-14.

    Jenish, D’Arcy (1998) Exhausting victory: Chronic Fatigue Syndrome wins legal recognition Maclean’s May 4, 1998, p.60-61.

    Klimas, N. G. & Patraca, R. (Eds) (1997) Disability and Chronic Fatigue Syndrome: Clinical, legal and patient perspectives. Special Issue of Journal of Chronic Fatigue Syndrome, V4:3.

    Komaroff, A.L. (1995) Preliminary report, Journal of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, 8(3), 53-54.

    Komaroff, A.L., Fagioli, L.R., Doolittle, T.H., Gandek, B., Gleit, M.A., Guerriero, R.T., Kornish, R.J., Ware, N.C., Ware, J.E. & Bates, D.W. (1996) health status in patients with Chronic Fatigue Syndrome and in general population and disease comparison groups, American Journal of Medicine, 101, 281-290.

    Lloyd, A.R., & Pender, H. (1992) The economic impact of chronic fatigue syndrome, The Medical Journal of Australia, 157, 599-601.

    Maclean’s June 22, 1998, p.45 Fatigue disease.

    Manu, P. Disability Evaluation for Chronic Fatigue Syndrome, Journal of Chronic Fatigue Syndrome, 4, 9- 17.

    McDowell, I. and Newell, C. (1996) Measuring Health: A guide to rating scales and questionnaires. 2nd Edition. New York: Oxford University Press.

    National Institute of Allergy and Infectious Diseases, (1996) Chronic Fatigue Syndrome: Information for Physicians. U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health

    Peterson, D.L. Chronic Fatigue Syndrome and Disability, Journal of Chronic Fatigue Syndrome, 4, 5-7.

    Peterson, P.K., Schenck, Cc.H., & Sherman, R. (1994) Chronic Fatigue Syndrome in Minnesota, Minnesota Medicine,74, 21-26.

    Schopflocher, D.P., Van Aerte, J., & Jorundson, E. (Eds.) (1995) Physician’s Package, M.E/C.F.S. Society of Edmonton.

    Schweiter, R., Kelly, B., Foran, A., Terry, D., & Whiting,J. (1995) Quality of life in Chronic Fatigue Syndrome, Soc. Sci. Med., 41, 1367-1372.

    Sharpe, M. (1996) Chronic Fatigue Syndrome, The Psychiatric Clinics of North America, 19, 549-573.

    Straus, S.E. (Ed.) (1994) Chronic Fatigue Syndrome, Volume 14, Infectious Disease and Therapy Series, New York: Marcel Dekker.

    Vercoulen, J.H.M.M., Swanink, C.M.A., Fennis, J.F.M., Galama, J.M.D., van der Meer, J.W.M., & Bleijenberg, G. (1996) Prognosis in chronic fatigue syndrome: a prospective study on the natural course, Journal of Neurology, Neurosurgery, and Psychiatry, 60, 489-494.

    Wessely, S. (1995) The epidemiology of Chronic Fatigue Syndrome, Epidemiologic Reviews, 17, 139-151.

    Wessely, S., Chalder, T., Hirsch, S., Wallace, P., & Wright, D. (1997) The prevalence and morbidity of chronic fatigue and Chronic Fatigue Syndrome: A prospective primary care study. American Journal of Public Health, 87,1449-1454.

    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 Example questions from the SF-36 (McDowell & Newall, 1996).

    · Physical functioning (10 items) Example:

    The following items are about activities you might do during a typical day. Does your health now limit these activities. If so, how much?


    Yes, limited a lot
    Yes Limited a little
    No, Not limited at all

    Lifting or carrying groceries




    Climbing several flights of stairs




    Climbing one flight of stairs




    Walking several blocks




    Walking one block







    · General Health Perceptions (5 items) Example:

    How TRUE or False is each of the following statements for you?


    Definitely True
    Mostly True
    Don’t Know
    Mostly False
    Definitely False

    I seem to get sick a little easier than other people.






    My health is excellent.









    · Vitality, energy or fatigue (4 items) Example:

    These questions are about how you feel and how things have been with you during the past 4 weeks. For each questions, please give the one answer that comes the closest to the way you have been feeling. How much of the time during the past four weeks -


    All of the Time
    Most of the Time
    A Good Bit of the Time
    Some of the Time
    A Little of the Time
    None of the Time

    Did you feel full of pep?







    Did you feel worn out?










    · Bodily Pain (2 questions) Example:

    How much bodily pain have you had during the past four weeks?

    None

    Very Mild

    Mild

    Moderate

    Severe

    Very Severe

    · Role Limitations due to physical health (4 items) Example:

    During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?


    Yes
    No

    Accomplished less than you would like.



    Had difficulty performing the work or other activities (for example, it took extra effort)






    · Role limitations due to emotional problems (3 items) Example:

    During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of any emotional problems (such as feeling depressed or anxious) ?


    Yes
    No

    Accomplished less than you would like.



    Didn’t do work or other activities as carefully as usual






    · Social functioning (2 questions) Example:

    During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?

    All of the time

    Most of the time

    Some of the time

    A little of the time

    None of the time

    · General mental health covering psychological distress and well-being (5 items)

    Example:

    These questions are about how you feel and how things have been with you during the past 4 weeks. For each questions, please give the one answer that comes the closest to the way you have been feeling. How much of the time during the past four weeks -


    All of the Time
    Most of the Time
    A Good Bit of the Time
    Some of the Time
    A Little of the Time
    None of the Time

    Have you been a very nervous person?







    Have you felt downhearted and blue?










    Appendix II: Qualification for Disability Benefits under the Canada Pension Plan

    Qualification for benefits under the Canada Pension Plan is governed by the Canada Pension Plan Act and attendant regulations. The relevant portions of the Act and Regulations are presented below.

    Canada Pension Plan, R.S.C 1985,c.C-8, as amended

    When person deemed disabled

    42(2) For the purposes of this Act,

    (a) a person shall be considered to be disabled only if he is determined in prescribed manner to have a severe and prolonged mental or physical disability, and for the purposes of this paragraph,

    (i) a disability is severe only if by reason thereof the person in respect of whom the determination is made is incapable regularly of pursuing any substantially gainful occupation, and

    (ii) a disability is prolonged only if it is determined in prescribed manner that the disability is likely to be long continued and of indefinite duration or is likely to result in death; and

    (b) a person shall be deemed to have become or to have ceased to be disabled at such time as is determined in the prescribed manner to be the time when the person became or ceased to be, as the case may be, disabled, but in no case shall a person be deemed to have become disabled earlier than [twelve] months before the time of the making of any application in respect of which the determination is made.

    R.S., 1985, c. C-8, s. 42; R.S., 1985, c. 30 (2nd Supp.), s. 12; 1992, c. 1, s. 23; 1996, c. 11, s. 95.

    Canada Pension Plan Regulations, C.R.C., c 385

    Determination of Disability

    68. (1) Where an applicant claims that he or some other person is disabled within the meaning of the Act, he shall supply the Director with the following information in respect of the person whose disability is to be determined:

    (a) a report of any physical or mental impairment including

    (i) the nature, extent and prognosis of the impairment,

    (ii) the findings upon which the diagnosis and prognosis were made,

    (iii) any limitation resulting from the impairment, and

    (iv) any other pertinent information, including recommendations for further diagnostic work or treatment, that may be relevant;

    (b) a statement of that person's occupation and earnings for the period commencing on the date upon which the applicant alleges that the disability commenced; and

    (c) a statement of that person's education, employment experience and activities of daily life.

    (2) In addition to the requirements of subsection (1), a person whose disability is to be or has been determined pursuant to the Act may be required from time to time by the Director

    (a) to supply a statement of his occupation and earnings for any period; and

    (b) to undergo such special examinations and to supply such reports as the Director deems necessary for the purpose of determining the disability of that person.

    (3) The reasonable cost of any examination or report required under subsection (2) shall be

    (a) paid by way of reimbursement or advance, as the Director deems fit;

    (b) paid out of the Consolidated Revenue Fund; and

    (c) charged to the Canada Pension Plan Account as a cost of administration of the Act.

    (4) For the purposes of this section, "cost" includes travel and living expenses that the Director deems necessary of the person whose disability is to be determined and of a person to accompany that person.

    Appendix III: 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 below.

    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



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  11. Spclk

    Spclk New Member

    Been there done that. Your letter sounds exactly like me.

    It sounds as if I wrote it. I have been to many doctors since 1998. I filed for disability in 1998 and have been turned down. Each time I appeal. I am curretly waiting for an apeal. During this time I have contacted a Lawyer. He suggest that I re-apply, which I am in the process of doing.

    I feel as if this is a waste of time. But right now I am not working and I have nothing but time. I used to work in a public school (as an Instructional Aide) and then went to a private school as an (Account Representative and Receptionist). I haven't worked since 10-97. I also have Arthritis and Carpal Tunnel.

    Enough of my complaining. I hope you have better luck than I have.

    Karen In California
  12. givebliss

    givebliss New Member

    Karen, I'm so sorry to hear what you're going through. I wish I could do something to help. Please know that I'm thinking of you and am here for you. Always remember: you ARE entitled to benefits.

    Here's a quote from a great article which makes our level of suffering very clear:

    "While the current state of basic scientific and treatment intervention findings in CFS do not warrant 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."

    I wish you all good things. Bliss Out.