Tis Spring

Tis Spring, and my allergies and sinuses are combining for a double-whammy.  Nine out of the last ten days, I have woken up with a headache.  Which means that nine out of the last ten days, I would have called into a job sick, because I never know early in the morning whether this is the one that will clear up a little or not.

There have been days where, by late afternoon, I feel up to doing a little work.  But in a "real job" with 8:30 to 5 office hours, by the time I'd decide I could do a little work, and get over there on the bus, it would be the end of the business day.

Yet, despite having this explained to him time and again, the Disability judge stubbornly persists in believing that someone would be willing to offer me permanent employment, no matter how many sick days I take in winter and spring. 

Or that my symptoms would all go away if I got a job.  Except that when I started my own business, my symptoms did not go away just because I had work to occupy my mind -- I did exactly what was recommended to me: focused my thoughts on my work instead of my health, and lost clients every winter and spring because getting out of bed and sitting at a desk and trying to work just made the symptoms worse.  As the symptoms got worse, it got harder to concentrate on the work in front of me.  The pain would reach a point that I couldn't even SEE the work in front of me. 

But my testimony that I have tried to work and had major problems with it was never considered as valid as the judge's speculation that there's an employer with unlimited sick leave who would tolerate all my symptoms and, essentially, pay me for showing up without requiring any actual work. 

If you know such an employer, give them my resume'.  I'll show up when I can, leave when I need to, and do a little work now and then.  On their part, they have to guarantee not to fire me for excessive absenteeism, sleeping at my desk, or the quality/quantity of my work. 

It's nearly noon, and I still don't have it in me to work.  When I tried to proofread this blog post, my headache got worse.  I can type with my eyes closed, but I can't proofread that way.

And so, although I was hoping to get some work done today, I'm going back to bed until the headache lets up enough to do something without making it worse.

Tags: CFS, sinus, headache, work, disability

Doctor Speaks Out -- Breaks Taboo

I have been taken to task by members of the medical community for daring to expose the truth that some doctors are incompetent and make misdiagnoses.

It will be interesting to see what those same people have to say about "How Doctors Think", the new book by Dr. Jerome Groopman, a Harvard Medical School professor and a honcho at the respected Beth Israel Deaconess Medical Center. After seeing incompetence and misdiagnosis affected friends and family, Dr. Groopman set out to find out how this happens.

Non-fiction author Ron Chernow praises "In this splendid and courageous book, Dr. Jerome Groopman lifts the veil on possibly the most taboo topic in medicine: the pervasive nature of misdiagnosis."

I am very curious to see whether the medical community calls Dr. Groopman the same names they have called me for breaching this taboo, or whether they praise him for finally educating them on how to avoid being sued for malpractice. Quite often, the problem is simply that the doctors didn’t listen. Groopman documents that patients are interrupted, on average, after just 18 seconds. This can be the difference between hearing the two symptoms that are compatible with depression and the third one that changes the diagnosis to CFS. My own medical records prove that doctors don’t listen – there are many things in there that I never said, twisting of facts, and flat-out lies.

For years, I suffered from daily digestive problems. Since the first doctor had convinced himself that I gained weight because I sat in front of the fridge stuffing my face at 3 AM whenever I couldn’t sleep, he missed the real cause. A doctor who did listen, who asked the right questions instead of deciding he didn’t need to ask questions because he knew what the answers would be, solved the problem in minutes, with a bottle of antacid pills that cost a whopping $3.

By listening instead of filling in the blanks with assumptions, he figured out that the problem was not that I was eating at 3 AM, but that I was NOT eating at 3 AM. I’d collapse into bed, exhausted, at 5 PM, too exhausted to get back up, and not eat anything for 12+ hours, leaving my stomach acid nothing to work on. There were times I was too exhausted to fix dinner, and didn’t eat for 18 hours between lunch and breakfast the next day. The only difference between the two doctors was that one "knew" that "every depressed woman eats non-stop" and the other treated me as an individual, not a statistic, asking what I did, not assuming that I do what other women do. (In fact, weight gain from altered metabolism is a common problem in CFS, and has nothing to do with increased caloric intake.)

The very first story Groopman tells in the introduction is very similar to mine: a woman with chronic digestive problems whose life was saved because after 15 years of misdiagnosis and wrong treatment, a doctor finally decided to think outside the box. Dozens of doctors, multiple hospitalizations, numerous psychological assumptions, and everyone missed that her problem wasn’t in her head or her stomach: she was allergic to gluten. Doctors had almost killed her by telling her to eat carb-heavy meals to gain weight – giving her massive doses of precisely the foods that she was allergic to.

I’m not a doctor. I’m a patient. I was only two pages into the introduction when Groopman said the sentence that leapt out at me, after being told to eat easily-digested carbs "the more she ate, the worse she felt." I knew the problem right then. It took the doctors till page 15 to settle on celiac sprue as the proper diagnosis. Why? Because I’m NOT a doctor. I subscribe to B.F. Synhorst’s theory that "Historically, illnesses are attributed to temperament when science lacks, or refuses to seek, answers".  I don’t automatically blame the patient; when the answer isn’t obvious, I think outside the box. I’ve also, as a patient, heard a lot of other patients say "doctors misdiagnosed my problem for years, but when one suggested celiac, I recovered quickly". What made me a better diagnostician than all the doctors this woman saw? I’ve listened to what other patients have told me about their experiences, and I spotted a detail that got lost in the big picture because I’ve heard this story many times before and know how other doctors solved the problem.

Similarly, we’ve all heard doctors say that it’s haaaaaaaard to diagnose CFS. Then why is it that CFS patient support groups can diagnose it with near-100% accuracy? Once again, because we listen. We’ve heard it all before, we know what tell-tale phrases will spring up in a True CFS patient. Some of us studied CFS under the medical care of one of the nationally-recognized experts (and others have read their books till they’re committed to memory); we actually know more than the average PCP about CFS because we’ve immersed ourselves in it since the 1980s.

Groopman writes that medical students are taught "Only after all the data are compiled should you formulate hypotheses about what might be wrong." Unfortunately, if you begin interrupting after just 18 seconds, you can’t possibly have all the data. The doctor who finally correctly diagnosed the patient’s celiac sprue did just the opposite. He asked her to begin at the beginning, the first symptoms, the doctors, the tests, and let her talk all the way through to the end, listening all the way. By doing so, he picked up clues that others missed.  He started fresh, with an open mind, instead of assuming that the prior diagnoses were correct and the only reason treatment wasn't working was because the patient was non-compliant.

William Osler said that if you listen to the patient, he is telling you the diagnosis. I’ve had doctors blame my divorce for symptoms that started years earlier when I was married, but that was ancient history and they didn’t want to listen to it. Faster and easier to blame the divorce, but that leads to misdiagnosis, because they’ve missed the part where "I have never felt right since the virus in 1987", the part that means it’s most decidedly NOT post-divorce depression. Groopman agrees, "If the patient is inhibited, or cut off prematurely, or constrained into one path of discussion, then the doctor may not be told something vital."

Social psychologist Judy Hall observes "The doctor is supposed to be emotionally neutral and evenhanded with everybody, and we know that’s not true." CFS literature is filled with stories of women who were given psychiatric diagnoses while men with the same symptoms were "really sick".

Unbeknownst to each other, a friend and I saw the same doctor; when we compared notes afterward, he had made the same disparaging remarks to each of us about divorced women; he had the notion that every divorced woman is looking for a way to get alimony so she won’t have to work. He may be a good doctor for men, but he’s going to approach every divorced woman with the attitude that she’s out to fleece her husband. The medical group does nothing to ensure that he sees only male patients, so he continues to misdiagnose divorced women, even those who had been the primary breadwinner and didn’t stand a chance of getting alimony from a near-penniless spouse.

Groopman elucidates "Misdiagnosis is different. ... It reveals why doctors fail to question their assumptions, why their thinking is sometimes closed or skewed, why they overlook the gaps in their knowledge. Experts studying misguided care have recently concluded that the majority of errors are due to flaws in physician thinking, not technical mistakes." "As many as 15% of all diagnoses are inaccurate", primarily because doctors "fell into cognitive traps", like the doctor who consciously or un assumes that all divorced women are scheming to get alimony. Groopman observes "The doctor becomes increasingly convinced of the truth of his misjudgment, developing a psychological commitment to it. He becomes wedded to his distorted conclusion. His strong negative feelings about the patient make it harder for him to abandon that conclusion and reframe the clinical picture differently."

And, in fact, without proper treatment, both my friend and I failed to improve, which "proved" to that doctor that the whole problem was we didn’t want to work. He didn’t need to look for any other reason for our symptoms beyond the assumed desire for alimony. When we reported getting progressively worse, he viewed that simply as "proof" that if we couldn’t get him to say we were disabled with our initial symptoms, we were going to exaggerate until we found the level at which he was convinced of our disability.

Unfortunately, both of us had very real medical problems, which really did become worse and caused further physical damage when they were not properly treated, but because he was filtering everything we said through "divorcee wants alimony", he never once considered that we were telling the truth.

My friend, thank God, got to a different medical group in time, and is now back at work. He and other members of his medical group strung me along with empty promises until it was too late for me to make a full recovery.

MORE COMMENTS AS I GET FURTHER INTO BOOK...

Tags: CFS, misdiagnosis, taboo, Groopman, judgment, error, thinking, incompetence, malpractice, celiac

Talk Therapy Doesn't Improve CFS

Cognitive Behavioral Therapy -- thought by some to be the "cure" for CFS proved to be a failure in this test.  Patients complained less about their impairments but the actual objectively-measured impairments themselves did not improve.

Proving once again what patients have been saying for years: you can tell us that we are not sick, you can try to make us believe that we are not sick, but in the long run, all the talking and positive thinking does not change the reality, because this is a virus, not a psychological problem, and viruses cannot be cured by talking about your problems.

To tell a CFS patient that their problems are all in their head is as insulting as telling a cancer patient they don't need surgery, just a head-shrinker.

* * *

Source: Journal of Neurology, Neurosurgery, and Psychiatry
        Vol. 78, #4, pp 434-436
Date:   March 21, 2007
URL:    http://jnnp.bmj.com/cgi/content/full/78/4/434
        http://www.jnnp.com


[Short report]

The effect of cognitive behaviour therapy for chronic fatigue syndrome on
self-reported cognitive impairments and neuropsychological test performance
---------------------------------------------------------------------------
Hans Knoop, Judith B Prins, Maja Stulemeijer, Jos W M van der Meer, Gijs
Bleijenberg
Hans Knoop, Gijs Bleijenberg, Expert Centre Chronic Fatigue, Radboud
  University Nijmegen Medical Centre, Nijmegen, The Netherlands
Judith B Prins, Maja Stulemeijer, Department of Medical Psychology, Radboud
  University Nijmegen Medical Centre, Nijmegen, The Netherlands
Jos W M van der Meer, Department of Internal Medicine, Radboud University
  Nijmegen Medical Centre, Nijmegen, The Netherlands
Correspondence to: H Knoop, Expert Centre Chronic Fatigue, Radboud University
  Nijmegen Medical Centre, P O Box 9011, 6525 EC Nijmegen, The Netherlands;
  j.knoop@nkcv.umcn.nl

Received 26 June 2006
Revised 14 November 2006
Accepted 15 November 2006


Abstract

Background
Patients with chronic fatigue syndrome (CFS) often have concentration and
memory problems. Neuropsychological test performance is impaired in at least
a subgroup of patients with CFS. Cognitive behavioural therapy (CBT) for CFS
leads to a reduction in fatigue and disabilities.

Aim
To test the hypothesis that CBT results in a reduction of self-reported
cognitive impairment and in an improved neuropsychological test performance.

Methods
Data of two previous randomised controlled trials were used. One study
compared CBT for adult patients with CFS, with two control conditions. The
second study compared CBT for adolescent patients with a waiting list
condition. Self-reported cognitive impairment was assessed with
questionnaires. Information speed was measured with simple and choice
reaction time tasks. Adults also completed the symbol digit-modalities task,
a measure of complex attentional function.

Results
In both studies, the level of self-reported cognitive impairment decreased
significantly more after CBT than in the control conditions. Neuropsychological
test performance did not improve.

Conclusions
CBT leads to a reduction in self-reported cognitive impairment, but not to
improved neuropsychological test performance. The findings of this study
support the idea that the distorted perception of cognitive processes is more
central to CFS than actual cognitive performance.

Abbreviations: CBT, cognitive behavioural therapy; CFS, chronic fatigue
syndrome; CIS, checklist individual strength; CIS-conc, checklist individual
strength-concentration; SDMT, symbol digit modalities task; SIP-ab, sickness
impact profile-alertness behaviour; SOCI, self-observation of cognitive
impairment

--------------------------------------------------------------------------------

Chronic fatigue syndrome (CFS) is characterised by severe fatigue, lasting
longer than 6 months and leading to functional impairment. The fatigue is not
the result of a known organic disease or ongoing exertion, and not alleviated
by rest. According to the Centre for Disease Control definition of CFS,
impaired concentration and/or memory is an additional symptom criterion.1 The
level of self-reported cognitive impairments in CFS is high2 and contributes
to the social and occupational dysfunctions of patients with CFS.3

Studies evaluating neuropsychological functioning in patients with CFS with
neuropsychological tests yielded conflicting results.4 Reduced speed of
(complex) information processing is the most consistently found impairment.3
5 6 However, several studies found no cognitive impairments7 and other
studies identified a subset of patients with defective performance.8 9

Fatigue-related cognitions and behaviour can perpetuate CFS.10 Several
controlled trials have shown that cognitive behavioural therapy (CBT) aimed
at these perpetuating factors leads to a reduction in fatigue and
disabilities.11

The first hypothesis tested was that CBT for CFS also results in a reduction
of self-reported cognitive impairments. The second hypothesis was that the
neuropsychological test performance of patients with CFS improves after CBT.
Data of two previous CBT trials12 13 were used to test the hypotheses.


MATERIALS AND METHODS

Patients

The first study from which data were used compared the effects of CBT for
adults with CFS with natural course and support groups12 in a multicentre
randomised controlled trial. Assessments were done at baseline, and at 8 and
14 months. An intention-to-treat analysis showed a reduction in fatigue and
functional impairment after CBT. In two of the three participating treatment
centres, neuropsychological tests were part of the assessments. Consequently,
data from neuropsychological test performance were available for a subset of
233 (78 CBT; 76 natural course; 79 support group) of the total group of 278
patients. The mean (SD) age of this group was 36.8 (10.2) years, 182 (78%)
were female and median illness duration was 41 months. The second study was a
randomised controlled trial comparing CBT for adolescents with CFS13 with a
waiting list condition. A total of 69 patients were randomly assigned to the
conditions. Assessments were done at baseline and at 5 months. The results
showed a greater decrease in fatigue and functional impairment in the CBT
group. Neuropsychological data of 67 patients were available (33 CBT; 34
waiting list). The mean (SD) age of the group was 15.6 (1.3) years, 59 (88%)
were female and median illness duration was 18 months.


Questionnaires assessing self-reported cognitive impairments

Checklist individual strength-concentration

In both studies, the severity of concentration problems over the past 2 weeks
was assessed with the subscale concentration of the checklist individual
strength (CIS) that consists of five items on a seven-point scale. The score
can range between 5 and 35.3 12 13


Sickness impact profile-alertness behaviour

In adults, the self-observed effect of cognitive impairments on daily
functioning was assessed with the subscale sickness impact profile-alertness
behaviour (SIP-ab) of the sickness impact profile.14 The subscale has 10
items, each item is weighed and the score can range between 0 and 777. No
such instrument was available for adolescents.


Self-observation of cognitive impairment

In adolescents, the frequency of cognitive impairments was determined with a
structured diary. Patients rated both concentration and memory impairment
separately on a daily self-observation list four times a day for 12 days
(0=no impairment; 1=impaired). The percentage of concentration problems and
memory problems (both number of assessments with a problem divided by 48
times 100) were added and then divided by two to calculate the mean
percentage of incidents of cognitive impairment.


Neuropsychological tests

Reaction time task

The reaction time task consisted of two subtests, simple and choice reaction
time tasks. Both are described in detail elsewhere.8 15 In a previous study,
the reaction times of patients with CFS were slower than that of healthy
controls on both tasks.8


Symbol digit modalities task

The symbol digit modalities task (SDMT)16 was used in the adult study as a
measure of complex attention. In previous studies, patients with CFS scored
lower than a matched healthy control group.8 9


Statistical analysis

Statistical analysis was performed using SPSS V.12.01. Significance was
assumed at p,0.05. A multivariate analysis of variance was performed with
self-reported cognitive impairment and reaction time as dependent variables
and treatment as fixed factor. Univariate tests and post hoc analysis are
reported if the multivariate test was significant. For the SDMT, a univariate
analysis was performed, as data were available for a subset of 174 patients
as the SDMT was added later to the test battery. In the adult study, the
dependent variables were the change scores at 14 months from baseline and in
the adolescent study, it was at 5 months from baseline. Reaction times were
transformed by a logarithm transformation. For adults, if data at 14 months
were missing and data 8-months post-treatment were available, the second were
used. In all other cases, missing data were replaced with estimates derived
by single imputation (missing variable analysis regression in SPSS with
baseline value as predictor). For significant treatment effects, effect sizes
were calculated.


RESULTS

Nineteen adult patients (8%) had missing checklist individual
strength-concentration (CIS-conc) and SIP-ab post-treatment data. One patient
had missing data on both reaction time tasks at baseline, for 44 (19%)
patients only baseline data and for 30 (17%) patients only a baseline SDMT
score was available. Two adolescent patients had no SOCI scores at baseline.
For 4 (6%) patients the CIS-conc and SOCI at second assessment were missing.
Two patients had no baseline reaction time and for 13 (20%) adolescents the
reaction times at the second assessment were missing.

In both studies, there were more data missing from neuropsychological tests
than from questionnaires as some patients were willing to mail the
questionnaires, but refused to undergo a second neuropsychological
assessment.


Self-reported cognitive impairments

Adults

The multivariate test (Pillai's trace) showed a significant change in
self-reported cognitive impairments (F(4,460)=4.76; p=0.001). The univariate
tests showed a significant effect of treatment on the change in CIS-conc and
SIP-ab (F(2,230)=8.94; p<0.001 and F(2,230)=4.42; p=0.013). Following CBT,
the decrease in CIS was significantly greater than in both the natural course
(p,0.001) and the support group (p=0.001; table 1). There was a significantly
greater decrease in SIP-ab score after CBT compared with natural course
(p=0.004). The difference between CBT and support group failed to reach
significance (p=0.055).


Adolescents

The multivariate test showed a significant treatment effect on self-reported
cognitive impairments (F2,62=5.03; p=0.009). Univariate tests showed that the
decrease in the CIS-conc and SOCI score was significantly larger in the CBT
group (F(1,63)=6.4; p=0.014 and F(1,63)=6.28; p=0.015).


Neuropsychological test performance

Adults

There was no significant effect of treatment on either reaction time task
(F(4,458)=0.44; p=0.783). There was no significant treatment effect on the
SDMT (F(2,171)=0.73; p=0.484).


Adolescents Multivariate tests showed no significant treatment effect on
either reaction time task (F(2,62)=0.34; p=0.714).


DISCUSSION

The hypothesis that self-reported cognitive impairments decrease after CBT in
patients with CFS was confirmed. Only one comparison in the adult study,
measuring cognitive impairments more indirectly, showed an effect in the
expected direction without reaching significance. The results of the original
adolescent study13 already indicated that concentration problems decrease
after CBT. In that study, the concentration problems were assessed with a
single item evaluating these problems retrospectively over a period of 6
months. This assessment can be easily influenced by situational circumstances
and memory biases, which can be prevented by the use of a diary as in the
present study. No support could be found for the hypothesis that
neuropsychological test performance improves after CBT.

A methodological problem is that in a substantial part of the patients the
neuropsychological data of the second assessment were missing. Furthermore,
in our analysis we assumed that dropout occurred at random, whereas patients
may drop out for non-random reasons. We repeated the analyses, but only on
patients who completed both assessments. Again, there was no significant
treatment effect. Our interpretation is that this indicates that improvement
in self-reported cognitive impairments after CBT is independent of the change
in neuropsychological test performance.

A discrepancy between subjectively reported disabilities versus objectively
measured performance is not limited to the current study. Mahurin et al17
found that the objective cognitive functioning of monozygotic twins
discordant for CFS did not differ, whereas the twin with CFS reported more
cognitive impairments. Metzger and Denney18 showed that patients with CFS
underestimated their cognitive performance. In the study by Vercoulen et al,8
most patients with CFS reported concentration and memory problems, whereas
only a small percentage showed an impaired performance. Given the fact that
patients with CFS perceive their cognitive processes as impaired but
underestimate their actual performance, one would expect that an effective
treatment of CFS would lead to a more accurate perception of one's
performance. The results of the present study are consistent with this
prediction. CBT resulted in decreased complaints about cognitive functioning,
but not in a change in performance. This is also in line with the hypothesis
that a distorted perception of symptoms and performance is a crucial element
of CFS.10


ACKNOWLEDGEMENTS

The authors thank Theo Fiselier for contributing to the selection of
adolescent patients with CFS, Lammy Elving for contributing to the selection
of adult patients and Ria te Winkel and Lida Nabuurs for assisting in data
collection.

Funding: The Health Insurance Council (College van Zorgverzekeraars) funded
the adult CBT study. The Children's Welfare Stamps Netherlands (Stichting
Kinderpostzegels Nederland) and the ME Foundation (ME Stichting) funded the
adolescent CBT study.

Competing interests: none.


TABLE

Table 1 Estimated treatment effect in change score (95% CI) on the dependent variables
------------------------------------------------------------------------------------------------------
Self-reported cognitive impairments
  Adults                          CBT                      Natural course        Support group
    CIS-conc                      -7.4 (-9.1 to -5.7)+     -2.7 (-4.4 to -1.0)** -3.4 (-5.1 to -1.8)**
    SIP-ab                        -116 (-156 to -76)++     -31 (-72 to -10)**    -61 (-100 to -21)
  Adolescents                     CBT                      Waiting list
    CIS-conc                      -6.8 (-10.5 to -3.5)+++  -0.9 (-4.2 to +2.5)*
    SOCI                          -7.9 (-12.8 to -2.9)1    0.9 (-4.1 to +6.0)*
------------------------------------------------------------------------------------------------------
Neuropsychological test performance
  Adults                          CBT                      Natural course        Support group
    Simple reaction time (ms)      9 (-9 to 27)            -5 (-23 to 14)        6 (-12 to 24)
    Choice reaction time (ms)     -24 (-51 to 3)           -27 (-54 to 1)        -26 (-53 to 1)
    SDMT                           2.8 (0.8 to 4.8)        2.3 (0.2 to 4.4)      4 (2 to 6)
  Adolescents                     CBT                      Waiting list
    Simple reaction time (ms)     -30 (-53 to -8)          -18 (-41 to 4)
    Choice reaction time (ms)     -12 (-29 to 6)           -10 (-28 to 8)
------------------------------------------------------------------------------------------------------
CBT, cognitive behavioural therapy; CIS-conc, checklist individual strength-concentration; SDMT,
symbol digit modalities task; SIP-ab, sickness impact profile-alertness behaviour; SOCI, self-
observation of cognitive impairment.
*  Significantly different from the CBT condition, p,0.05.
**  Significantly different from the CBT condition, p,0.01.
+   Cohen's d based on change within treatment condition=1.3.
++  Cohen's d=0.6.
+++ Cohen's d=0.4.


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--------
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Tags: CFS, CBT, Neuropsychological, cognitive, performance, Chronic Fatigue Syndrome, Cognitive Behavioral Therapy, therapy, neurocognitive

Why do we need more proof?

CFS Activist Jill McLaughlin observes:
"Of course we need more research but we do not need to wait for "more
science" or the Holy Grail of a marker or the cause - even to "prove" that
it is "real." NO other illness has been held to this unattainable standard
and if we keep buying into this line of thinking we only hold ourselves
back. There is substantial objective, well-documented evidence of CNS,
immune, endocrine, cardiovascular, and autonomic nervous system
abnormalities, which indicate that it is biologically, not psychologically
determined. We need to keep pushing for recognition and utilization of what
we have and can use now, not always waiting for more". 

There has been proof that CFS is real since the mid-80s when the first MRI machine in northern Nevada documented brain lesions in CFS patients similar to those seen in MS.  But that didn't fit the portrait that CDC was trying to paint, so this was not publicized.

As time went on, 4000+ research studies were done around the world: viruses were identified, viral damage was documented, neurological problems were diagnosed, and after trying zillions of prescriptions, the only one shown to work more often than not was an anti-viral.  And still there were those who put their hands over their ears, singing Lalalalala, "I can't hear you", because they wanted to find a purely psychological problem.

Any patient who insisted they had no psychological basis for their symptoms was interrogated until the doctor found the one thing, however minor it seemed to the patient, that the doctor could pounce on to yell "aha!"    When I produced diagnoses from psych experts that I had no depression or other psychological diagnosis, what I had was symptoms compatible with someone who had the flu, these same doctors found reasons to believe that they are better qualified to diagnose depression than a psychiatrist. 

When anti-depressants don't work, some doctors insist the problem isn't that there is no depression for them to work on, but because the patient isn't cooperative.  Despite the symptoms, I was still trying to work, yet I was accused of "not wanting to get better and have to go back to work".  Life would have been a lot easier if taking a pill was enough to make me feel well enough to work full-time!  If you don't believe me, YOU try making ends meet on an income of $130 a month.

The standard applied to CFS is unattainable.  They've refused to give it a more serious name until we can prove what causes it, but because of the ridiculous name they've tagged it with, it's difficult to get research funding.  What was wrong with the old name, Myalgic Encephalomyelitis?  Or name it Peterson/Cheney Disease after the two doctors who identified the Incline Village epidemic -- then the name won't have to be changed when a definitive cause is found.  But the same people who refuse to listen to any evidence that this is not a purely psychological problem also refuse to change the name to something that might garner more respect and more research funding.

And then they blame the patients when psychological treatment doesn't cure the virus.

 

Tags: CFS, virus, research, proof

It doesn't rain but it pours....

With CFS comes a cascade of other problems.

I’ll admit that my sinus headaches started in college. But those were different. They hurt, but they were not blinding, and they were never accompanied by infections. I might use them as an excuse to cut a class I didn’t enjoy, but they didn’t prevent me from doing the things I loved.

After CFS, I went from having pain around my eye socket a few days a year to having pain in my face and scalp dozens of days, sometimes blinding, sometimes on the level of a migraine, requiring me to lie absolutely still in a dark room. (One such day, my friend Peter called to cheer me up and I had to ask him to please not make me laugh, because the vibration even from a light giggle was head-splitting.) I also started having sinus infections rather than just headaches – something that was explained when I learned that CFS damages the immune system. My weakened immune system couldn’t prevent the infection the way it used to.

Soon after the CFS, I began to have problems with wrist tendinitis. Initially, it was assumed to be a result of years of production typing, but then I learned that CFS causes joint and muscle pain.

I also developed digestive problems – first thing in the morning, every single day. For a couple weeks, we thought this was morning sickness, but then came the incontrovertible indication that I wasn’t pregnant, and the problem continued. Again, eventually I learned this is common with CFS: CFS affects many bodily functions because it affects the Central Nervous System. When wrong nerve impulses are sent to the digestive tract, interesting things happen.

I started to fall while walking (tripping over a crack in the sidewalk is different from collapsing from exhaustion after doing a little too much) and to faint without warning – more neurological problems.

In December 1987, I couldn’t make sense of what I was reading, or remember things, or tell time, or do simple math, or find the right word when speaking. I was sure I’d just become world’s youngest Alzheimer’s victim (though I’d never heard of someone going from above-normal to advanced dementia in a matter of months, but if I was going to set records for age I might as well set records for speed, too), until I learned this was just another symptom: the virus that causes CFS also causes lesions in the brain, and Dr. Sheila Bastien has developed a neuropsychological "signature" for CFS that verifies that some partsremain untouched and other functions (like math and memory) are "worse than patients with traumatic brain injury". Apparently thanks to my age and gender, I did eventually recover most of that function, only to lose it again when I relapsed in 2000. At this point, at peak efficiency, I can pass for normal for a couple hours, but I can’t sustain peak efficiency for an 8 hour work day, not even with a long nap in the middle.

At first, some doctors mocked CFS as beyond credibility because patients complained of "every symptom under the sun", but then a neurologist clarified that every symptom on the list could be caused by Central Nervous System dysfunction. (As one of my teachers warned us, "a little learning is a dangerous thing", and never more so than when it’s a generalist who scoffs at something without consulting a specialist who knows that it’s not as bizarre as it sounds.)  If it were truly imaginary, some of those patients would be slipping in symptoms that aren't neurological in nature, but the symptom list remains consistent.

Quite early on, Dr. David Bell observed that whatever the cause of CFS might be, it was something that affected every organ without causing organ damage; and certainly the nerves touch every inch of the body. If you’re just feeling around looking for a swollen liver or enlarged spleen, you aren’t going to be able to feel a nerve dysfunction. But most doctors don’t think to do a nerve conduction study on someone who has digestive problems: it’s easier (and cheaper) to pin the blame on their diet or their stress level.

 

 

 

Tags: CFS,

The Politicization of Illness

Further to Mary's comments yesterday about the way the government committees approach and disparage CFS and CFS patients, read http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=317x1629

Dr. David Bell, who treated the 1984/85 Lyndonville epidemic, commented about CDC:  they could have made one worthy contribution: they could have prevented the skepticism that now rules supreme in the medical profession at large. All they needed to do was admit, “Yes, these people are ill.”

Instead, the head CDC researcher into CFS originally made statements that the problem was these were simply depressed menopausal women ... which I'm sure was news to the parents of the 5 year old patients and the wives of the male patients! 

Then, instead of saying that this epidemic had a great deal in common with the brain disease Myalgic Encephalomyelitis, CDC decided to re-name it "Chronic Fatigue Syndrome", with the expressed intention (documented by their own memos via a FOIA request) to make it sound frivolous and unworthy of Disability benefits.  They succeeded: many, if not most, CFS patients are denied the benefits they are legally entitled to.  Most of those who succeed in getting their benefits get them for co-existing conditions, like depression or arthritis, rather than for CFS. 

In 1995 -- 12 years ago -- Dr. Mark Loveless, an infectious disease specialist who runs an AIDS and CFS clinic at Oregon Health Sciences University, testified to Congress that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death". His statement was supported by data from clinical research conducted at OHSU and by the experience of other CFS experts.

Yet, even that expert testimony based on objective data did not convince CDC to stop insinuating that the problem was minimal and purely psychological.  It was not reported in the mainstream media, so it didn't do anything to change the minds of the general public, either.

Even when, a year ago, CDC reported having found objective biological evidence of CFS, they in the very same press conference reverted to their old ways of stressing "stress" as the cause, rather than the virus documented by numerous non-CDC researchers and reported by most patients.  By slipping that word into the press conference, they ensured that the psychobabble connection would continue to be reported, and, in fact, one of the stories carried in newspapers nationwide skimmed over the biological evidence to continue to perpetuate the myth that patients are just emotional basket cases with no biological reason for their symptoms.

Doctors who were only half-listening (if that much) pooh-poohed the idea that a virus you had months ago was causing problems now; what I actually said was that I had problems continuously since the virus in February, not "I had a virus in February and my problems started in November".  It was in November that the problems got bad enough that I had to stop working because of them, but I had never returned to normal after the virus. 

And again a dozen years later, when I relapsed so severely that I lost my job, the doctor never quite got it that I had never returned to normal after the virus, and tried to find more recent reasons for the symptoms instead of acknowledging that the effects had been continuous since the virus in February 1987.  In remissions, I felt "better", but I never felt "normal"; even in remissions, I had to take precautions and watch my energy expenditure.

But, encouraged by the CDC's stance that the problem was purely psychological, that doctor took the view that I say I have CFS to avoid the stigma of admitting to mental illness by saying it's depression.  Frankly, nowadays, most people understand that depression is a biochemical problem and not a character flaw, so there's a heckuva lot less stigma to depression than there is to CFS, which (thanks to CDC) is still viewed as laziness more than an actual biologically-based illness. 

The real irony here is that if I had filled out my Disability paperwork claiming depression (or any other mental illness), I'd have been approved pretty quickly on my word alone; but because I said I had CFS, my word wasn't as believable as that of a crazy person!  The judge keeps sending it back claiming "no objective evidence" ... what objective evidence is there that the guy babbling religious drivel on the street corner isn't putting on an act and is perfectly normal once he's home?  In fact, I have objective evidence -- blood tests and orthopedic problems that can't be faked -- but the judge doesn't want to acknowledge it because he's blinded by the initial diagnosis of CFS.

The big political question here is, if CDC continues to ignore tons of biological evidence and claim the problem is just people who can't handle a little stress, why has Congress not stepped in to do something about it?  Remove all the people who unreasonably continue to espouse a psychological cause and replace them with researchers who will acknowledge that there's ample biological evidence, that anti-depressants have repeatedly been proven useless, that the only medications which have shown promise are anti-virals. 

A virologist is better-suited to researching this illness than someone whose acknowledged expertise is in Effects of Stress, yet that is who CDC currently has in charge of researching CFS.  There's an old adage, "if the only tool you have is a hammer, everything looks like a nail".  And if you want to see stress (or depression), you will hammer the facts until they fit your paradigm. 

One of my doctors carefully eliminated reference to any symptom that wasn't compatible with the depression diagnosis he desperately wanted to make.  If I didn't have the fever, then I didn't have CFS.  If I didn't have the swollen glands, then I didn't have CFS.  If the only symptom he noted was fatigue, then I <triumphant shout> had to have depression!  Small problem ... my contemporaneous notes indicated I had far greater problems than mere fatigue.  I offered to stake my notary commission (which required an extensive background check for character and honesty) on the accuracy of my own notes, and friends verified that they had observed some of the objective symptoms I noted, whereas they had never seen or heard anything that led them to believe I was depressed. 

All my friends have received 3 AM e-mails that prove that I may collapse into bed at 5 or 6 PM, but I do not sleep straight through to 7 or 8 AM as the doctor's notes indicate.  Until I got some fairly strong sleeping pills, I was sleeping in 1-2 hour increments, not 15 hours at a time.

It's the things that are left out that are the most important!  And the political version of this illness leaves out the initial virus, leaves out the proof for 20+ years of brain lesions, leaves out the viral damage to the heart muscle, leaves out that all the symptoms are not a "random collection of every symptom known to man" but are specifically those which can be caused by a Central Nervous System dysfunction.

We need to demand that responsibility for the illness be turned over to an appropriate person with expertise in virology or neurology, instead of people who will use psychobabble to explain away symptoms that are demonstrably rooted in biological and neurological factors.
Tags: CFS, CDC, stress, Chronic Fatigue Syndrome, politics, biological, evidence, virus, depression, politicization

R-E-S-P-E-C-T

On the subject of government CFS conferences, MaryS writes:

"I've sat in these meetings and conferences for twelve years, and that's the behavior I've seen by these people.   ... they can be unspeakably rude to people who are seriously and severely ill. Some of the things I've heard said to Tom Hennessy would take your breath away, they're so rude. Here's a guy in so much pain he can hardly stand, and they openly mocked him. I remember my mother (who came to a meeting to push my
wheelchair) saying to me, "What's the matter with these men? Why are they treating a patient like that?" She was appalled. Anybody would be.  ... Would they be allowed to do that in a roomful of patients with heart bypasses? Or lung cancer? The disrespect they have shown patients with our disease - to our faces - is breathtaking."

 

I have to agree with Mary.  I have been verbally abused by people who are utterly solicitous as soon as someone mentions they or a relative have cancer.  Someone who is able to continue working nearly full-time while getting treatment receives tons of sympathy, but someone who is completely unable to work and is getting worse because the doctors refuse to give her the proper medication gets nothing but disrespect.  Why?  Because these people are stuck in the 1950s when cancer was an automatic death sentence; by contrast, CFS is often seen as just a minor inconvenience.

There are a number of cancer patients in my family, and I will respectfully point out that every single one of them received IMMEDIATE treatment of the proper sort, without having to first "prove" that they were not just depressed or lazy or trying to avoid having to work.  Those who applied for Disability benefits got them immediately -- they didn't have to wait years to be approved, while being accused of scamming the system at every turn.  No one told them that they didn't "deserve" Disability benefits until they were totally destitute and homeless, nor suggested that "if you don't want to work, marry a rich man" (as if any rich man would settle for a wife who's already nearly bedridden!).

I will also, with all due respect to cancer patients and their families, point out that in this day and age, if it's caught early enough, most cancer is curable.  I know quite a few people who have been declared "cured" of cancer, including my own father.  On the other hand, I know precisely ZERO people who have been "cured" of CFS, and Dr. Dan Peterson has given that same statistic on CNN.  There were a couple of occasions where I thought I'd been in remission long enough to be cured, and just when I got that cocky, the virus kicked me squarely in the butt and I relapsed.

People feel free to "diss" CFS patients because they don't see it as a "real disease".  Whenever (and wherever) I post the quote from the director of the Oregon Health Sciences CFS/AIDS clinic that CFS patients are more disabled than AIDS patients, I get a ton of verbal abuse, how dare I say that?!  Except that I didn't say that ... it was said by a doctor who has treated thousands of patients with CFS and AIDS, and is based on his own observations.  It's not me dissing AIDS patients, it's a medical expert who has seen with his own two eyes that AIDS patients are more mobile, more active, more able than CFS patients until shortly before death.  CFS patients become disabled sooner and stay disabled longer than AIDS patients, and that's a fact.

Yet, despite the number of symptoms they share, AIDS is generally viewed to be a "real disease" and CFS isn't.

Same thing with MS.  It shares most of its symptoms with CFS, and there's even some research implicating the same virus in both.  When another member of our church was diagnosed with MS around the same time that I was diagnosed with CFS, she was fawned over and I was taunted "CFS, that's another word for laziness?"  We had almost the exact same symptoms (the only difference: where I had serious digestive problems, she had double vision).  Hers were real, mine were deemed figments of my imagination.  I was puzzled ... there is no way for another person to confirm double vision, you have to take her word for it, but it's very easy to someone else confirm that I really did get up every morning and threw up, then had diarrhea. 

And then I went to work; she stayed home.  Which of us was "too lazy to work?"  Wasn't me.  I was working.  20 years later, I still am working.  Maybe not full-time, but more hours than a lot of other people who quit working the day they got their diagnosis (whether that diagnosis was cancer, MS, or something else) with the intention of enjoying their remaining days.  And with their "serious" diagnosis, they didn't have to prove anything to get Disability benefits; it was simply assumed that they couldn't work because they had that diagnosis. 

CFS patients who are essentially bedridden have been told by Disability "you could work if you tried".  I know, because I was one of them.  Showed up for the hearing with a barf bucket, spent the whole time with my head down on the table because I was on the verge of passing out, visibly had a fever (which was, at that point, in its second month nonstop, and lasted six months in total), could barely speak due to sore throat, and at the end of testimony from both me and a witness about the severity of my symptoms, the judge denied my application and then chirped up "State VocRehab can find you a job." 

No, they can't.  They don't create jobs where you get a paycheck for showing up sporadically and doing nothing; you must be able to maintain adequate attendance (which I can't) and perform actual work when you get there; if I'd shown up to a VocRehab appointment in the same condition as I went to that Disability hearing, they would have sent me home to get healthy before they'd waste time trying to find me a job.  Several VocRehab experts have testified that I am unemployable; that, too, is not just my opinion, but what the experts say.

People who've verbally attacked me have admitted that they wouldn't say the same things to cancer or heart patients, "but that's different".   Their explanation comes down to the notion that cancer is real, and CFS isn't.  Or the misconception that no one has ever died from CFS ... google names like Casey Fero and Sophia Mirza, and the hundreds of nameless patients who got tired of having to put up with verbal abuse on top of severe disability and simply took their own lives because they couldn't stand it any more. 

A quarter-century into this epidemic, the physical damage is reaching the point that people are dying from CFS.  Dr. A. Martin Lerner has found viral damage to the heart.  Dr. Paul Cheney gave a lengthy interview (on www.DFWCFIDS.org) about coronary insufficiency in CFS, stating that CFS patients are "on the verge of heart failure".  Casey Fero's autopsy showed that his heart basically exploded.  So the argument that CFS deserves no respect because it doesn't kill people is wrong.  It just doesn't kill people as fast as cancer.

And anyone who says there's no way to prove someone with CFS has anything wrong with them clearly is unaware that in the mid-1980s doctors were already discovering abnormalities in brain scans.  I haven't had a brain scan, but I have had a blood test the doctor described as "sky high", which indicated some sort of systemic infection (that test should have been followed up by a test to identify the specific infection). 

As Dr. Devon Starlanyl says, if "all tests are normal", then perhaps the proper tests haven't been done.  Unfortunately, the tests that would show CFS are either new and/or uncommon and/or expensive, so doctors either don't know to order them or don't want to order them because of the cost.  But that doesn't mean that CFS can't be proven.  There are plenty of tests that would prove it, if those tests were done.

But AIDS patients felt well enough to organize and attend ACT UP events; CFS patients, who are too sick to do that are viewed as apathetic.  Our inability to muster a huge protest crowd is seen by some as proof that we know there's nothing really wrong with us ... not that we are putting every ounce of energy into existing and don't have the energy to travel to a central location and march.  March?!  Some days we're lucky if we can make it the couple feet to the bathroom, and you want us to march across town and spend a couple hours rallying on the steps of the Capitol?  (We've joked that a CFS rally should be billed as a "sleep in", because all but the few in remission would be too exhausted to do anything more after travelling to the rally.)

The facts prove that CFS is a real disease, with real biochemical abnormalities, and real physical damage.  CFS patients deserve respect as much as any other patient with any other incurable disease, and for the same reasons.

                             THE EXPERTS SPEAK ON DISABILITY:

Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

Dr. Daniel Peterson's Medical Outcome Study revealed that no other set of patients had ever measured so poorly. CFIDS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.

This disease is actually more debilitating than just about any other kind of medical problem in the world. –– Dr. Leonard Jason

 

Tags: CFS, respect, Chronic Fatigue Syndrome, Paul Cheney, Leonard Jason, attitude, disability, cancer, heart disease

The TRUE Cost of CFS

CDC has been espousing the number $9B a year in economic losses due to CFS.  Dr. Leonard Jason, CFS expert, proposes the true number is more than double that estimate.

Is Anyone Out There Listening? The Economic Costs of CFS.

Leonard Jason, L. Valentine, S. Torres-Harding, A. Johnson, M. Benton, N. Porter.

The economic impact of Chronic Fatigue Syndrome in a community based versus a tertiary sample.

We already have an assessment of the indirect costs of CFS - those caused by unemployment, disability, etc. - to the U.S. economy. They came out to a hefty 9.1 billion, yes BILLION dollars a year.

Now Dr. Jason, with his study on the direct costs of CFS - medical costs - is able to give us, for the first time, an estimate of the total annual losses to the U.S. economy from CFS.

These costs are, of course, heavily affected by estimates of CFS prevalence. Dr. Jason's history of prevalence estimates was quite instructive; they started out absurdly low with early estimates suggesting about 20,000 CFS patients in the U.S. Jason's small early 1990s community based study bumped that up significantly (400,000), and his replication of that study doubled it again (800,000). The late 1990s CDC Wichita study confirmed Jason's estimates (800,000-1,000,000) and Jason used 880,000 as the basis for economic cost calculations.

With the direct economic costs added, Jason estimates that CFS costs the U.S. economy a whopping 19-25 billion dollars a year. This is about double the amount that prompted the Japanese government to sponsor a large CFS research program.

These numbers suggest that if the Department of Health and Human Services woke up it would at the very least realize that investing in CFS research makes economic sense and would start funding CFS like the substantial health issue it is. Somebody in the DHHS, after all, wants to know how damaging this disease is - they sponsored the first economic loss estimate (via the CDC) and must have paid for this one too - now if only they would act on it.

With the CDC program winding down and the NIH research program essentially moribund, DHHS spending on CFS could be as low as $10,000,000 - or about what it commits to several very (very) rare genetic diseases.

* * * *

$10M -- that's $10 per patient.  Big deal. 

The Social Security taxes alone on even the erroneous $9B figure (much less the more accurate $25B number) exceed that expenditure by orders of magnitude.  Add in the income taxes, sales taxes, property taxes, etc. that could be paid by returning that million patients to work, and the return on investment is incredible.

Yet, even now that privately-funded researchers are closing in on the biological factors of this disease, the US government refuses to fund a full-scale push to tie these loose ends together.  They'd rather leave a million people sick and draining the economy than spend even 1% of the annual cost looking for a treatment/cure.

Want to know why?  Read "Osler's Web" by Hillary Johnson.  You'll learn exactly why the government doesn't want to find the biological underpinnings of this disease, doesn't want to admit there's a virus at the base of it, wants to pin it all on "stress".  The answer is simple, and self-serving.  It's all tied up in egos and arrogance.

Tags: CFS, research, funding, biological, treatment, cure, taxes

Telling half the story with twice the people

One thing that we've noticed is that essentially all the books about living with disability praise to the high heavens spouses, children or parents who attend to the disabled person's every need.

Laura Hillenbrand's inspirational story of writing "Seabiscuit" while coping with severe CFS reveals that Laura wrote much of it with such vertigo that she couldn't sit up (much less stand up to get to the kitchen for a bowl of cereal), so her boyfriend made innumerable trips to the library to get research materials for her.  (As well as seeing to it that she had clean laundry and proper meals brought to her in bed.)

But what of the many people who face disability alone?  Roughly 3/4 of marriages affected by chronic illness break up.  A fellow activist recalls seeing a statistic that the divorce rate is more like 90% when it's the wife who becomes ill.  Most autoimmune illnesses, as well as CFS, strike far more women than men, so that's a lot of divorced patients!

Those millions of divorced women suffer, too, but unnoticed by the media, unable to write books about their plight.  Whereas Laura could stay in bed to write and have food brought to her, at my worst I still had to stumble to the kitchen to feed myself and the cats.  Every bit of energy I had was consumed with essential tasks: cooking, laundry, dishes -- things that the book-writers among us don't have to deal with because they have a healthy person in residence to take care of the chores. 

Another author describes, while she was essentially bedridden, having someone draw her bath, fetch her from the bedroom, help her in, gently wash her, help her out, pat her dry, dress her in a clean nightie, and assist her back to bed, where she collapsed from the effort of having someone else do all the work for her; I read that section with envy -- as much as I love a nice hot bubble bath, if I'm too weak to safely get myself in and out of the tub, I can't take one because I might get stuck in the tub.  If you've ever sat in icy water in a chilly bathtub in a rapidly-cooling bathroom for hours because your feeble attempts to boost yourself out of the tub are unsuccessful, it's NOT something that you want to experience a second time!  That occurred at a time when the person with my emergency house key was out of town, so I couldn't even call for help (not that my male friends strong enough to get me out of the tub would feel comfortable seeing me wearing nothing but bubbles).

Laura had a boyfriend who went to the library for her.  As I was getting progressively worse, I bravely accepted a quick research/writing project which required a trip to the library.  I spent the next week horizontal, recuperating from a three-mile round-trip, for the first several days so exhausted that I couldn't concentrate on the books that I'd brought home.  I knew the books were written in English, but when I picked them up they appeared to be written in Russian.  The alphabet looked foreign, and only with the utmost effort could I pick out one or two words on a page.  If only I'd had someone to make that trip to the library for me, I could've taken on more such projects, but it's hard to make a living when you need to take a week off every time you venture out of the house to get more research material.  (Obviously, being in that condition makes it darn hard to get a boyfriend who will make those trips for you, if you didn't have one already before you got sick.)

When I'm sick, no one empties my barf bucket (except me).  No one places a cold compress on my head while they go to the kitchen to cook up a nice organic, preservative-free chicken soup to nourish me back to health.  No one even brings me a glass of water.  If I'm too sick to get out of bed, I do without food and water, which is no way to get better.  But I have no choice.  I have no spouse, no children, no siblings, my parents are 3000 miles away with their own health problems, and my former girlfriends always claim to be "too busy" when I call to ask for help (they all have full-time jobs, most have both husbands and children -- all have at least one or the other -- so it's a plausible excuse).

I've learned to keep a box of cereal bars or PopTarts under the bed and a couple bottles of water in easy reach, but if being bedridden lasts more than a day or two, those supplies run out and there's no one to replenish them.

And without a husband, the only money coming in is the few hundred a month that I can earn working part-time.  There's no extra money to hire help, finances are a constant worry (so much for the doctors telling me to reduce stress!), and I have to work as much as possible to keep the bills paid, which means less time available for writing books (which might be more lucrative in the long run, but don't bring in any money till they're done or almost done).  I've reached the point of having a steady clientele, and turning down work that pays now in order to write a book that may or may not bring in some money later seems foolish.

I had to accept substandard medical care because there was no healthy person to strenuously advocate for me; I could make feeble protests, but gave up after a minute or two because I didn't have the energy to keep arguing.  Obviously, there was nothing even mildly threatening about a woman collapsed on an exam table, as opposed to some of the more visible patients who tell stories about large husbands making viable physical threats against recalcitrant doctors.  They knew they could easily out-stubborn me because I wouldn't have enough energy to pitch a prolonged battle over treatment (or lack thereof).  There was no husband to pick me up and carry me into the doctor's office on my worst days to show them what I'm like when I'm not well enough to get myself there on my own, so they had a skewed picture of what I'm like most of the time because they only saw me on good days, after I'd rested up for a week to ensure that I could get to the appointment.  There was no one to spend hours calling around to find a lawyer willing to take the medical malpractice case when I had deteriorated from lack of proper treatment to the point that I was almost totally non-functional.

The point is, next time you read one of those inspirational books about living with disability, consider how much actual "hardship" is involved when the household has a steady paycheck coming in from a healthy spouse, and healthy children available to run errands and provide caregiving, vis-a-vis the innumerable "silent majority" among us who are facing disability with no money, no help, no caregiver. 

Those books wouldn't be written, and their writers wouldn't be so cheery about coping with a major disability, if they were in the shoes of the millions of disabled people who are forced to do everything for themselves no matter how sick they are, or how much pain they're in.

 

Tags: CFS, autoimmune, disability, caregiver, book, writing, writer, inspirational, marriage, divorce

Disproportionate Research Funding

Parade Magazine was asking for comments to be sent to Congress about healthcare in the US.  Here are mine:

Gross imbalance between cost of illness and research funding

By CFSfacts on 3/12/2007 2:46:PM

A million Americans suffer from Chronic Fatigue Syndrome, known as Myalgic Encephalomyelitis in the rest of the English-speaking world. The symptoms are very similar to MS, and some researchers believe the same virus is implicated in both conditions. CFS affects more than twice as many people as MS.

A very conservative estimate is that CFS costs the US economy over $9B a year. Yet, only about $6M a year is devoted to research that might get these million patients back to productive work.

If only 1% of the lost productivity were budgeted to finding a viable treatment/cure for CFS, far more than that investment would be repaid in taxes when that million people return to productive work.

I have been told that because I wasn't given effective treatment promptly, the physical deterioration is now too advanced for me to ever return to full-time work. Instead of my paying taxes on nearly two million dollars of earned income over the rest of my working life, I will spend the rest of my life working part-time, earning below the poverty level and paying no income taxes at all.

Tags: CFS, research, funding, Congress, taxes

Be your own Medical Expert

Mike Riley, head of the SacValley CFS/FM Support Group writes:

"If you are going to be a CFS patient, you are going to have to learn some medicine, and you are going to have to be your own advocate. If you wait for the medical system to take you by the hand and solve your condition, you are going to wait for a very long time, and become very frustrated. We are our own doctors. Treat the medical community with respect, but not reverence."

 

Doctors DON’T know it all. There are far too many CFS patients who are permanently disabled – some permanently bedridden – because they blindly followed their doctor’s recommendations to the letter. If you don’t know that exercise is hazardous to CFS patients and your doctor doesn’t know that exercise is hazardous to CFS patients, you might become one of them.

I do know quite a bit about CFS, but even I made the fatal mistake of trusting my doctors to know what they were doing. I assumed (wrongly, it turns out) that if I proved to them that anti-depressants weren’t helping me, that they would eventually prescribe something else. Instead, when I reported the pills didn’t help, I was accused of "not taking the pills because I don’t want to get well and have to return to work". Somehow, it never sank in to him that the thing I wanted most was to get well and return to work; he had the notion that CFS was something that liars and fakers claim to have because there is no way to prove that they are not sick. (Actually, there are tests that can prove it, but he didn’t know what those were, and wouldn’t order the one I specifically asked for.)

Letting them string me along with "if anti-depressant A didn’t work, let’s try anti-depressant B" (and C and D...) for a couple years resulted in an outside rheumatologist telling me that I had deteriorated too far and would never recover enough to return to work; I should’ve looked for another doctor willing to try sleeping pills and pain pills, instead of naively believing that at some point I would succeed in proving that none of the anti-depressants available were of any help, and at that point they would give me what I asked for, what I knew to be the right treatment. Instead of trying something new, they prescribed second rounds of not one, but two, anti-depressants that I’d already tried and found useless! (One of which I had been told to never take again because of the severity of the reaction I had; I could have died from filling that prescription.)

I also made the mistake of trusting that because the law says it is illegal to falsify medical records, that they would keep accurate and honest records. When I finally saw my records, I was horrified. There were false statements on every page. If you believe the doctors’ notes:

*     I was "self-diagnosed", no doctor ever told me I had CFS;

*     I have a long history of depression which I misrepresent as CFS;

*     I quit working the day I got the diagnosis and never worked again;

*     I have no objective symptoms, my only symptom is fatigue;

*     I told him "I don’t want to ever work again" (at a time when I was doing freelance work and had gone into partnership in a friend’s business!);

*     and, the real shocker, a lab report showing there were several EBV tests that came up positive despite the doctor’s note that "all tests are negative" (suspiciously, the page with the positive EBV test results had not been given to me along with the other results when I was reassured that the tests were all negative – coincidence or intentional?)

All of those statements are incontrovertibly false.

One doctor tried to excuse his actions by saying "nothing she said made sense". And it’s true – to someone who wants to diagnose depression, the symptoms of CFS don’t fit the mold. But that doesn’t give him the legal right to make notes based on what he thinks I should have said or what he believes I meant to say or what he wanted me to say. He was obligated to write down what I said, though he could have commented afterward that he questioned the accuracy of it.

There are things that can be done to help CFS. If what your doctor is trying consistently makes you worse, give him an ultimatum: if he doesn’t go to the Web or the library and figure out what those things are by your next appointment, if he doesn’t want to take your advice based on what you’ve read, you will go to another doctor who does know what he’s doing. Because the odds of your being able to function well in the future are increased when you get the right treatment early on, the longer you let doctors string you along with treatments that aren’t working, and promises that "the next one will work" (and the next one and the next one after that), the more likely that you will be permanently impaired.

The odds of improving drop off drastically at Year Five. I was beyond that when Dr. Murphree and I found the right dosage of 5HTP to put me to sleep, and I’m in Year Seven of this relapse now that Dr. Montoya is suggesting treatment with an anti-viral. I may invest thousands of dollars in Montoya’s treatment only to find that it was too late. I’m laying my hope on the fact that there was one year in there that I was on an effective sleeping pill that re-activated my immune system and allowed me to beat back the virus from the level it had reached; maybe that bought me some time, turned back the clock, and I can calculate the current relapse from the day that clinical trial ended, which would put me back into the first five years when treatment seems to be most helpful.

If you’re too sick to stand up to the doctors and demand they give you the correct treatment, bring a healthy friend or family member to the next appointment to stand up to the doctor for you. Or find a lawyer who will write a "bully letter" for $100, to let them know that research has shown anti-depressants are entirely useless against CFS, good results are being had with anti-virals, so the doctor better read up on Montoya’s protocol "or else". (Or have the lawyer demand that you be given some of the immune and neurological tests that would show abnormalities.) To get the lawyer to write that letter for one hour’s fee, you’ll have to provide him with the list of tests or the research summaries instead of asking him to track that information down himself, but they are easily accessible on websites such as Co-Cure.org, ahummingbirdsguide.com, and CFSfacts.org

It’s never easy to stand up to doctors, and especially not when you’re horribly sick, but the life you save could be your own.

Tags: CFS, doctors, malpractice, Chronic Fatigue Syndrome, treatment

How is CFS like politics?

In withdrawing from the presidential race, Tom Vilsack said

"I came up against something for the first time in my life that hard work and effort couldn't overcome."

 That's a feeling that CFS patients know well.  Many of us were hard workers who were accustomed to overcoming any obstacle. 

And now we're faced with something that not only "hard work and effort couldn't overcome", but that hard work and effort make worse.  Some doctors recommended exercising your way back to health and were puzzled when this resulted in the patients becoming bedridden instead of returning to work.  Science has proved why, and experts now warn CFS patients to not exercise. 

 

Tags: CFS, politics, Vilsack

The Issue of Disability

Mark Pellegrino, MD, who is both a doctor and a fibromyalgia patient, shares the following observations:
"It is my experience that the majority of Fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. I think that total disability should be rare in Fibromyalgia, and despite all the problems, there should be something that the individual should be able to do.  However, the economy is not always receptive to a worker with various restrictions due to a medical condition, and all factors have to be considered"


This is a situation that many disabled people face. They very much WANT to work, but no one wants to hire them.

VocRehab experts who have looked at my restrictions and limitations have said that "there are no jobs" that I could do successfully. Even a part-time desk job would require reaching and lifting.  Yet, the judge stubbornly persists in his belief that there must be some charitable employer willing to employ the disabled with whatever accommodations they need.  So, VocRehab says I can't work, but the judge contradicts their expertise with his notion that in an ideal world someone would hire me anyway, and over the objections of the experts deems me "not disabled" without doing anything to help me find that mythical employer he believes wouldn't care about attendance or productivity.

Since this is not an ideal world, employers don't offer charity (except to extremely valuable long-time employees), I started my own business working at home. The business is essentially paperless, so there are no files to lift. The only reaching I do is to set my computer aside when I need to run to the bathroom (something that I could not do as often as I do -- or as easily -- working in an office where time away from desk is noted by a supervisor and the restroom is a hundred yards further away).

I'm fortunate that, unlike some fibromyalgia patients, I don't have permanent "fibro fog". I have some clear-headed hours when I can work, but on MY schedule, not someone else's.  The cognitive/memory/judgment problems are the ones cited most often as reasons CFS patients cannot work. Certainly, if I were required to be downtown at 8:30 AM, they'd affect my ability to work, too.  But since I can sleep till I wake naturally, instead of having an alarm clock go off at 7 AM regardless of whether I only fell asleep at 6:30 AM, it's not as big a problem for me as it was when I was averaging 2 hours sleep because I wasn't falling asleep till after 5 AM.

As an employer who is disabled myself, I am certainly open to hiring other people who are disabled, but that's the nature of MY business; I work at home and my employees would work at their homes.  I've contacted other employers who are disabled, and they are not interested in hiring someone like me -- they want able-bodied employees who can do for them all the things that they can't do for themselves.

The thing that convinced me that I was wasting my time trying to get someone else to hire me was the response of an agency that finds employment for the disabled. I applied for a job in their agency, and even they said "No" and wished me "Good Luck, You'll Need It".  If even agencies dedicated to finding employment for the disabled won't hire the disabled to work with the sort of accommodations I need, there's definitely a problem. 

You can believe all you want in the ideal world where the disabled are given an equal shot at employment, but unless you are willing to advocate to your employer that they hire someone like me, don't tell me "just go get a job". 

It's not that easy.  I tried for years to "just go get ajob" and was turned down at every interview, as soon as it came out that I needed certain accommodations.  I didn't give up on job-hunting until the VocRehab experts testified "there are no jobs" that I could do and explained why I couldn't do any job.  Obviously, if they will testify to that in a Disability hearing where they're being paid to say that I could work if I tried, then they're not going to waste their time to try to place me if I show up on their doorstep.  They know what employers will and won't tolerate, and even they can't imagine anyone hiring me.

It's actually rather laughable that people call me "too lazy to work" when I've done something that most disabled people haven't even tried: I started my own business and put myself to work at a damn good hourly rate, working the number of hours I have doctor's permission to work.  But every time I've tried to work more hours than authorized, I've relapsed, which proves that it's not that I'm "too lazy to work" more hours, but that I'm too sick to work more hours.  I'm able to work 6-10 hours a week because I'm spending absolutely zero time commuting.  If I had to spend an hour a day on the bus getting to/from downtown, I'd be able to work 1-5 hours a week, because all the commute and preparation time has to be subtracted from that 6-10 hours.  If I have to spend half an hour putting on a suit, nylons, and make up and fixing my hair to be acceptable in a conservative law office, that's time that I cannot spend working.  Or I can work at home in my jammies, and put that time toward earning money.

The VocRehab experts are right: there is "no job" out there that I could do successfully because this is not an ideal world.  Employers put their bottom line first, and many of the disabled cannot produce at the required 110%.  Perhaps some day we'll have a society where employers have the Noblesse Oblige mindset to offer employment to the disabled because it's the right thing to do, even if the disabled aren't as productive or reliable as the able-bodied.

But for now, most employers think that providing full employment for the disabled is a great idea ... for the competition.  Not for themselves.  They'll complain about us being a drain on the taxpayers, but won't do a thing to helpus BECOME taxpayers.  Which is what most of us used to be, and most of us would like to become again. 

Tags: CFS, fibromyalgia, employment, disability, ideal world, real world, bottom line, noblesse oblige

Preserve your health -- become an outlaw

The state of California is discussing banning incandescent bulbs.  I think this letter from a fellow patient who is terribly affected by fluorescents says it all:

<<Hello all

My good friend and fellow founder of the north London ME Network, Evelyne
Muller, has as part of her ME extreme sensitivity to fluorescent light (as
well as being unable to use computers for similar reasons).  She spotted an
article in the Guardian newspaper regarding a proposal to ban ordinary
(incandescent) bulbs and force us all to use long-life (fluorescent) bulbs in
the interest of the environment.  She dashed off a letter to the Guardian -
I've pasted it below.  It seems like we may have to get a campaign going on
this issue and we need to collect information about how many people could have
their lives even more limited by a potential ban on ordinary bulbs. If you are
affected by fluorescent lighting, even if only slightly, please let us know by
contacting Evelyne via the following email JanWhitmore@uwclub.net


Julia Cameron

----- Original Message -----
From: Jan Whitmore
To: letters@guardian.co.uk
Sent: 22 February 2007 21:24
Subject: "Should we ban these bulbs?" Article, G2 dated 22.2.07


Dear Editor

The issues raised by the question on your front page (February 22nd) - "If
Australia can ban these, why can't we?" - next to a picture of an incandescent
light bulb, concerns me deeply.  Fluorescent energy-saving bulbs can trigger a
whole array of horrendous symptoms, particularly amongst people with
neurological disorders.

I am equally as concerned to reduce the O2 emissions as those who propose the
ban.  I have been a green and ethical consumer for over twenty years, have had
solar panels on my house for five years and am a long-standing member of
Friends of the Earth.  However, choice in light bulbs is essential because,
just like food and medicines which we ingest, taking in different qualities of
light affects us differently as individuals and can cause damaging side
effects.  My own intolerance to fluorescent lighting developed after a bad
bout of glandular fever twenty-eight years ago, which damaged my inner ear,
caused visual and neurological impairment, and left me weak enough to have to
use a wheelchair for three years.  I was diagnosed with ME.  Too much exposure
to fluorescent lighting has caused me numerous relapses and other people I
have met with ME, MS, epilepsy, migraine, and simply sensitivity, also suffer
varying degrees of unwellness from energy-saving light bulbs.

Your reporter, Les Hickman in G2 (February 22 - "Should we ban these bulbs?"),
seems unaware of these health issues - as I am sure most people are, who are
not affected by them.  There is, however, already some research in the public
domain, even relating fluorescents to conditions mimicing dyslexia in young
children.  Much more research is necessary, particularly to produce
energy-saving bulbs that do not cause these distressing symptoms.

I say to those who want to ban the bulb that I admire your determined stance
to help our ailing planet, but please listen.  If I was sitting under
energy-saving light bulbs now, I could not write this letter.  I would
experience dizziness, visual and mental disorientation, pains in muscles,
swollen joints and increasing weakness from which it can take months and years
to recover.   Last year the first death from ME was recorded by the Coroner
for England and Wales.  This is a serious issue - and I wonder how others are
affected with less robust nervous symptoms, babies, for example.  In our zeal
to help the environment we must not blunt our humanity and go for the  quick
fix, however attractive.  We share life on this beautiful planet and need to
listen and learn from one another.

Education about energy efficiency and  removal of financial barriers are
vital, but a ban by those who cannot appreciate how lighting affects the more
sensitive among us will be inhumane, making some of us prisoners in our
candle-lit houses.

Yours sincerely

Evelyne Muller,
c/o JanWhitmore@uwclub.net   >>

Personally, I have some problems with fluorescents, nowhere near as bad as Evelyne's, but I still wouldn't want to deal with them.  If California bans incandescents, I'll bring them back from Nevada by the case rather than subject myself to the exacerbation of symptoms caused by fluorescents.

Although the manufacturers tell you that they have fixed some of the things people complained about in first-generation CFLs, the people whose health is affected by fluorescents say that they have not fixed the problems that cause the health issues.

Tags: CFS, fluorescent, incandescent, neurological, ME, MS, epilepsy, CFL