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Catherine Marshall Wins the 2012
Kenneth J. Friedman Vermont CFIDS Association Medical Scholarship

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The Award Presentation, 22 minutes:

Catherine's Winning Essay

The Scholarship Essay Requirements

Write an essay of approximately 3,000 words on the following topic:

A patient recently diagnosed with a psychosomatic disorder by another physician requests a second opinion from you as to the cause of her debilitating illness and requests a thorough evaluation.2 She believes, based upon her research on the internet, that her symptoms are consistent with a diagnosis of Chronic Fatigue Syndrome.2 How would you proceed?2

A summary of her medical history is as follows:

A 35-year-old female has come to your office for a second opinion and possible treatment. She states that she was healthy until one morning two years ago, when she woke feeling as if she had the flu with a sore throat and body aches. She felt unable to get out of bed because of lightheadedness upon sitting.

After a week, her symptoms improved to the extent that she was able to return to work although working exhausted her. She attempted to increase her stamina by exercising at her local gym. On days subsequent to exercising she felt worse physically and had difficulty concentrating. She stopped exercising.

For the past two years she has continued to feel exhausted. She has difficulty in falling to sleep at night and wakes up feeling un-refreshed. She continues to have difficulty in concentrating and gets frequent headaches and dizziness. She can't walk far because her legs feel weak. If she rests a lot, she feels slightly better, but will relapse with a return of all symptoms after any exertion.

After several warnings about frequent absences from work and the substandard quality of her work, she lost her job. She became depressed and anxious. She has seen her primary care physician on several occasions. He ordered routine blood tests, CBC with differential, sedimentation rate, routine chemistry, thyroid screen and a chest x-ray. He told her that all her test results fall within the normal range and he can find no physical illness to account for her debilitating symptoms. He prescribed an antidepressant medication. The medication made her feel worse, so she stopped it.

A year after the onset of her illness, her husband abandoned her because she was no longer the woman he married. She needs to apply for social security disability benefits and has obtained a report from her doctor. The report states that she is suffering from a psychosomatic disorder.

Your essay must not exceed 10 double-spaced pages of 12-point type with 1-inch margins.

References should be cited within the text of the essay using standard, medical journal format.

At least 10 references should be cited.

A bibliography containing all references cited in the essay should be included at the end of the essay.
The bibliography should be formatted using standard, medical journal format.

The document needs to be scholarly and well-referenced. Citing web sites as references is not acceptable.
The essay must not have been offered or submitted elsewhere.

Essays not conforming to these standards will not be considered.

A committee has been formed by Vermont CFIDS Association to review the submitted essays and select
the winner. Judging will be on the basis of scholarship, and the demonstration of understanding the
difficulties involved in diagnosing and providing compassionate and effective care to CFS patients.

 

 

The Award Winning Essay


Chronic Fatigue Immune Dysfunction Syndrome remains a difficult diagnosis for most
health care professionals to accurately diagnose. It can be understood as a constellation of
symptoms that is only made more difficult to diagnose by the lack of specific and sensitive
biomarkers for the disease. Although Chronic Fatigue Immune Dysfunction Syndrome often
significantly hinders a patient’s functional abilities, square biological evidence has eluded
medical researchers since the disease was redefined by the Center for Disease Control in 1988.
The inability to directly screen for and diagnose Chronic Fatigue Immune Dysfunction
Syndrome unfortunately means that patients are often criticized and neglected because there is
no apparent cause and cure for their disease. This paper aims to address the history of Chronic
Fatigue Immune Dysfunction Syndrome, current theories of etiology, and our current diagnostic
abilities before addressing the case study below.
Chronic Fatigue Immune Dysfunction Syndrome is the most recent name given to the
constellation of symptoms that many patients have experienced for hundreds of years. A
neurologist by the name of George Beard was the first physician to classify the group of
symptoms as neurasthenia in 1869. The term myalgic encephalomyelitis (ME) first appeared in
1938 to describe a similar set of symptoms. The constellation of symptoms gained another new
name in 1988 when the Center for Disease Control and Prevention (CDC) named it Chronic
Fatigue Syndrome. However, this term carries the social stigma of a psychiatric disorder, and
patients renamed the illness Chronic Fatigue Immune Dysfunction Syndrome in an effort to relegitimize
their experiences.
Because Chronic Fatigue Immune Dysfunction Syndrome is difficult to diagnose, reliable
numbers on the prevalence in the United States does not exist. It has been estimated from case
studies that the prevalence is between 2-11 per 100,000 people in the general population. In
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addition, it is believed that 80% of people with Chronic Fatigue Immune Dysfunction Syndrome
are women, and the age of onset is between 30-50.1 While this is surely a debilitating disease
process, it is not fatal. In fact, the three leading causes of death in people with CFIDS are heart
failure, suicide, and cancer, which make up nearly 60% of all deaths.2 It is not well understood
why Caucasian women are over-represented, which contributes to a lingering cultural bias in the
medical community that believe the disease process is psychosomatic in origin.
According to the CDC, a diagnosis of Chronic Fatigue Syndrome can be made based on a
constellation of criteria. The patient must have experienced six or more consecutive months of
extreme fatigue that is not related to physical exertion or secondary to other disease processes.
The fatigue must also interfere with work or daily living. Finally, the person must report at least
four of these symptoms at the same time: post-exertional malaise lasting more than 24 hours; unrefreshing
sleep; significant impairment of short-term memory or concentration; muscle pain;
multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; tender
cervical or axillary lymph nodes; or a sore throat that is frequent or recurring.3 It is important to
note that current diagnostic criteria rely solely upon subjective findings, as researchers have yet
to determine specific biologic markers for Chronic Fatigue Syndrome.
In search for a biological underpinning for Chronic Fatigue Immune Dysfunction
Syndrome, researchers have proposed various viral or bacterial infections, as patients typically
report flu-like symptoms prior to the onset of chronic fatigue. Many patients present with
symptoms similar to other diseases; such as, multiple sclerosis, lupus, mononucleosis, AIDS
complex syndrome, or fibromyalgia.4 This is why it is important to screen for these diseases in
order to rule them out, as these diseases have known biologic markers. Researchers have also
suggested chronic Epstein-Barr viral infections as the cause of Chronic Fatigue Immune
4
Dysfunction Syndrome. Although this theory is now out-dated, a more recent study indicates that
another virus, the human T-lymphotropic virus (HTLV) types I and II may be connected to
symptoms associated with Chronic Fatigue Immune Dysfunction Syndrome. In this study, thirty
people were tests for the human T-lymphotropic virus by using Western immunoblotting,
polymearse chain reaction, and in situ hybridization of blood samples. A majority of the
participants tested positive for the virus, while twenty healthy participants in the study did not
test positive.5 Although this indicates that further research should be done on the correlation
between Chronic Fatigue Immune Dysfunction Syndrome and human T-lymphotropic virus, it is
curious as to why not all of the participants with Chronic Fatigue Immune Dysfunction
Syndrome tested positive for the virus.
While many studies have investigated the connection between various viruses and
Chronic Immune Dysfunction Syndrome, one case study examined the connection between
Giardia lamblia gastroenteritis and Chronic Fatigue Syndrome. Following a community outbreak
of Giardia lamblia gastroenteritis in Bergen, Norway, patients who experience long-lasting
effects of abdominal discomfort were evaluated for CFIDS using the CDC guidelines for
diagnosis. Of the 96 patients, 60% were diagnosed with CFIDS. Researchers used the Medical
Outcome Severity Scale-short Form-36 (SF-36) to evaluate physical and mental health status and
functional impairment, and a distinctive pattern emerged that indicated that social functioning,
vitality, and physical functioning were especially reduced.6 One significant implication of this
study is that Chronic Fatigue Immune Dysfunction Syndrome cannot be attributed to one single
virus or even event. To understand the complex causes of CFIDS, one must examine
pathological biological processes that may be initiated or maintained by a variety of triggers.
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One obvious biological process that contributes to the body’s energy levels occurs in the
mitochondria in the cell. It is in mitochondria that ATP is synthesized into useable energy in the
body. One study took fifty-three patients diagnosed with Chronic Fatigue Immune Dysfunction
Syndrome and tested their blood using six different markers for ATP levels. This ATP Profile
test examined the availability of ATP, or energy, in the body, as well as the body’s efficiency at
producing this energy. When compared to the normative data collected from sixty-one nonaffected
individuals, there was a direct correlation between available ATP and diagnosis of
CFIDS. Furthermore, the level of dysfunction correlated with the level of severity of CFIDS.
These researchers proposed that the underlying cause is a dysfunction in a translocator protein in
the mitochondria.7 This study suggests that there is a future for using biologic markers such as
the ATP Profile test to assess patients with Chronic Fatigue Immune Dysfunction Syndrome, as
well as providing evidence that patients with CFIDS have a biological cause of their symptoms.
Examining Chronic Fatigue Immune Dysfunction Syndrome as a result of an underlying
pathological process broadens the scope while explaining the range of symptoms that patients
experience. Some researchers have suggested a neuro-immune model for understanding the wide
range of immunological and neurological abnormalities that have been discovered in patients
with CFIDS. Such abnormalities include autoimmune responses, raised levels of cytokines,
autonomic dysfunction and brain pathology, all of which indicates a pathologically elevated
inflammatory response. Researchers of this model propose that CFIDS is a combination of
inflammatory, immune, and oxidative and nitrosative pathways gone haywire. The chronic
immune activation state could be triggered by any number of infections or pathogens. Even after
the initial infection has been cleared, these immune responses may become chronic, which leads
to destruction of the energy-producing processes in the mitochondria. Fatigue sets in, and
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physical or psychological stressors may maintain the pathological process. The interaction of the
central nervous system with the inflammatory process may also explain the relapsing-remitting
characteristic of Chronic Fatigue Immune Dysfunction Syndrome.8 This model may hold
promising leads to both diagnosis and treatment of CFIDS. In the opinion of this paper’s author,
this neuro-immune model succeeds, where others do not, at including the legitimate interactions
of psychosocial and biological causes of CFIDS.
Psychosocial factors should not be ignored or underplayed when working with people
who have Chronic Fatigue Immune Dysfunction Syndrome. In fact, most of the inclusion criteria
put together by the Center for Disease Control and Prevention rely on accurate subjective
reporting. Because subjective reporting is difficult to scale, researchers have examined the
sensitivity and specificity of fatigue questionnaires that patients fill out in the clinic. Some
researchers at DePaul University found that there were significant sensitivity or specificity
problems. However, the sub-scale of the Fatigue Types Questionnaire that measures postexertional
fatigue was found to be the most sensitive and specific portion to detect people with
CFIDS. Another scale, the Fatigue Severity Scale, which was developed by Krupp, LaRocca,
Muir-Nash, and Steinberg in 1989, could best differentiate health controls from those with
Chronic Fatigue Syndrome.10 It is of great clinical significance to use sensitive and specific tests
in the clinic in order to make a diagnosis, and a subjective questionnaire should not be viewed as
a non-scientific finding.
In fact, according to one study published earlier this year, researchers claim they can
differentiate between myalgic encephalomyelitis, chronic fatigue syndrome, and chronic fatigue
– once all thought to be the same disease, by factoring the patient’s subjective post-exertional
malaise as a key feature in the diagnostic process. Researchers included in the analysis recorded
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levels of plasma interleukin-1 (IL-1), tumor necrosis factor (TNF)α, and lysozyme, and serum
neopterin. Using a subjective reporting of infection, fatigue, and scaled post-exertional malaise,
researchers could differentiate between the three diagnoses. Patients diagnosed with chronic
fatigue had more mild reports and biomarkers, whereas those with myalgic encephalomyelitis
and chronic fatigue syndrome had much higher markers in all three categories. Patients with
myalgic encephalomyelitis specifically had higher scores on concentration difficulties and a
subjective report of infection, as well as higher levels of IL-1, TNFα, and neopterin than patients
with chronic fatigue syndrome.11 This new study shows that more sensitive and specific
diagnostic tools are available, and it suggests there may be levels of severity that may be
investigated and treated uniquely.
Case Study:
[A patient recently diagnosed with a psychosomatic disorder by another physician requests
a second opinion from you as to the cause of her debilitating illness and requests a
thorough evaluation. She believes, based upon her research on the internet, that her
symptoms are consistent with a diagnosis of Chronic Fatigue Syndrome. How would you
proceed?]
If this patient came into my clinic, I would start with a thorough initial examination. As
with any initial examination, I would try to determine whether or not the constellation of
presenting symptoms were related to a single diagnosis. I would ask for a detailed past medical
history prior to the believed onset date two years ago. My questions would include questions
about known family health, a list of medications she has been on in the past, as well as a systems
check (i.e., cardiovascular, GI, urinary, etc.). Next, I would ask for a history of mental health,
including current mental status, as anxiety and depression could be a result of a decreased
function and a difficult personal life over the course of the past two years. I might ask questions
that would rule out other major diagnoses that would call for an immediate referral. I would ask
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if she has had night sweats or back pain at night, which would be a red flag to get screened for
cancer. Because multiple sclerosis patients experience chronic fatigue, I would also ask about
changes in vision or visual disturbances, as that is often how multiple sclerosis presents in
women of her age.
I would continue with the interview and ask many questions as I go along that could
possibly explain some of her symptoms. I would inquire about what happened when she felt like
she had the flu, sore throat, and body aches two years ago. I would want to know if her husband
had gotten sick at the same time, if she had found something that made it feel better, if she went
to the doctor, and if she had taken any medications for her symptoms. I would also ask clarifying
questions about her reported lightheadedness upon sitting, as orthostatic hypotension could be
attributed to her blood pressure, or it could be a side effect of another medication. I would also
want her to describe her current bouts of “dizziness”, as it could help distinguish between
positional vertigo or a decreased VOR.
I would want to hear more about her fatigue, and whether it was worse in the morning or
later in the day. I would ask about her diet, as nutrition can affect energy levels. I would ask if
she has found anything that helps her sleep better at night. I would let her know that she can
participate in a sleep study to rule out sleep apnea or other causes that might prevent her from
feeling rested in the morning. I would ask her to show me where she feels her headaches when
they occur, as those could be explained by a cervical radiculopathy.
I would try to assess whether her legs felt weak because she has not been as active in the
last couple of years or whether there was potentially a problem with the central nervous system.
Being a physical therapist, I would probably do manual muscle tests and deep tendon reflex tests
of the lower extremities on both sides to screen for central nervous system disorders. The rest of
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her case does not seem consistent with a central nervous system disorder, but I would want to
assess whether I should simply refer the patient to another MD or treat and refer the patient to an
MD.
I would ask the patient what she read (and where) on the internet that makes her think she
has Chronic Fatigue Immune Dysfunction Syndrome. I would not be dismissive of her claim, but
I would not assume that she had made an accurate diagnosis either. How I proceed after that
would partially depend on her responses.
I would ask her whether or not she would like to stay with her primary care physician. If
she says yes, then I would get on the phone with her primary care physician to communicate
about her case. If she would like a recommendation, I would recommend a doctor with a good
reputation for interpersonal skills that is within her health insurance network. Although I would
be seeing this patient in my physical therapy practice, this scenario is by no means an unlikely
occurrence in my setting.
While talking with her physician on the phone, I would ask about her diagnosis of a
psychosomatic disorder. If the diagnosis were made because the MD could not find an
underlying physiological cause to her decreased function and persistent fatigue, I would politely
and professionally ask if the doctor was familiar with the CDC classification of Chronic Fatigue
Immune Dysfunction Syndrome. I would also mention that there have been recent studies that
indicate there may be biologic markers for the disease, and that I could fax the studies I am
referring to over to the clinic. I would reference the ATP Profile test, as well as the SF-36 and
the recent study that differentiates between myalgic encephalomyelitis, chronic fatigue
syndrome, and chronic fatigue.
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In terms of how I could help the patient in the clinic today, I would recommend a few
things. I would recommend the patient follow up with her primary care physician so that she can
be sure she has an accurate diagnosis. I would also provide the patient with information on a
Chronic Fatigue Immune Dysfunction Syndrome support groups that she can join
(http://www.cfs-support-groups.com). I would ask her if she has all the information she needs in
order to apply for social security benefits. I would also suggest that she make an appointment
with someone to talk with who can counsel her through this process.
Although I do not think that her disorder is psychosomatic, she has been through several
very difficult life changes in the past couple of years. Talking to others in the support group, as
well as seeking a counselor, can increase her quality of life. Plus, divorce and losing a job are
two major life stressors that would typically warrant seeking counseling.
I would also revisit the topic of exercise. I would ask her what she was doing a couple of
years ago in an effort to boost her stamina. I would let her know that studies show that
performing light exercise for thirty minutes twice a week has been shown to decrease fatigue and
increase quality of life.12, 13
If a patient like this one were to come into my clinic, I would want to address the
biological, social, and psychological factors that contribute to her current status. It is my goal as
a health care professional to provide quality care to patients, which includes quality interpersonal
care as well as quality technical care. If I cannot provide the technical care to her because it is
outside my scope of professional capabilities, I will address the interpersonal care aspects and
communicate effectively with other health care professionals who can provide the technical care.
Patients with difficult diagnoses slip through the cracks of the health care system too frequently
because they require more time and investigative work than they receive in order to get at the
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root of the problem. Communication and empathy are two keys that any health care worker can
provide to their patients to ensure they receive the care they need.
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Bibliography:
1. Gunn, W. J., Connell, D. B. and Randall, B. (2007) Epidemiology of Chronic Fatigue Syndrome: The Centers for
Disease Control Study, in Ciba Foundation Symposium 173 - Chronic Fatigue Syndrome (eds G. R. Bock and J.
Whelan), John Wiley & Sons, Ltd., Chichester, UK.
2. Jason LA, Corradi K. Causes of death among patients with chronic fatigue syndrome. Health Care Women Int.
2006 Aug;27(7):615-26.
3. Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). London: = National
Institute for Health and Clinical Excellence. 2007.
4. Artsimovich NG, Chugunov VS, et al. [The chronic fatigue syndrome]. h Nevrol Psikhiatr Im S S Korsakova.
1994;94(5):47-50. Russian.
5. DeFreitas E, Hilliard B, et al. Retroviral sequences related to human T-lymphotropic virus type II in patients with
chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci U S A. 1991 Apr 1;88(7):2922-6.
6. Naess H, Nyland M, Hausken T, Follestad I, Nyland HI. Chronic fatigue syndrome after Giardia enteritis: clinical
characteristics, disability and long-term sickness absence. BMC Gastroenterol. 2012
Feb 8;12:13.
7. Booth NE, Myhill S, McLaren-Howard J. Mitochondrial dysfunction and the pathophysiology of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Int J Clin Exp Med. 2012;5(3):208-20. Epub 2012 Jun 15.
8. Morris G, Maes M. A neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome.
Metab Brain Dis. 2012 Jun 21.
10. Jason LA, Evans M, et al. Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity.
Disabil Stud Q. 2011 Winter;31(1). pii: 1375.
11. Maes M, Twisk FN, Johnson C. Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and
Chronic Fatigue (CF) are distinguished accurately: Results of supervised learning techniques applied on clinical and
inflammatory data. Psychiatry Res. 2012 Apr 20.
12. Stroud, N. M. & Minahan, C. L. The impact of regular physical activity on fatigue, depression and quality of life
in persons with multiple sclerosis. Health Quality of Life Outcomes. 2009 7:68.
13. Van Cauwenbergh D, De Kooning M, Ickmans K, Nijs J. How to exercise people with chronic fatigue
syndrome: evidence-based practice guidelines. Eur J Clin Invest. 2012 May 25.



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