Transcript Chronic Fatigue Syndrome A Blessing or a Curse for the Primary

Chronic Fatigue Syndrome
A Blessing or a Curse for the Primary Care
Physician?
Stephen J. Gluckman, M.D.
Chronic Fatigue Syndrome
• Why have a lecture on it in a conference
on infectious diseases?
– Often misdiagnosed and mistreated as an
infection
• Incorrect management can be costly and
occasionally dangerous
• Fatigue if a very common patient
complaint in most of our offices
Case
• A 28 year old housewife who has a
previously unremarkable medical history
had the acute onset of fever to 103,
headaches, myalgias, and a nonproductive cough 18 months ago. All of the
symptoms resolved over the subsequent
10 days with the exception of profound
fatigue which has persisted since that
time.
Case (cont.)
• The fatigue waxes and wanes in intensity
but is always there. It is worse after
physical activity; she had to stop her part
time job as a bookkeeper. She states that
prior to the onset of her illness she used to
go the gym 3 times a week but has had to
give that up.
Case (cont.)
• Additional symptoms have included
– Intermittent sore throat
– Generalized body aches
– Mental “cloudiness”
– Intermittent “swollen glands”
– Difficultly sleeping
– Blurry vision
– Tingling in her hands and feet
Case (cont.)
• Over this time
– Her weight has increased 10 pounds
– Her menses have been normal
– Her hemoglobin has been no lower than
11.8 gm/dl
– Her serum albumin has been normal
Case (cont.)
• She has been evaluated by
– Her primary care physician
– A Neurologist
– Two rheumatologists
– An otorhinolaryngologist
– A nutritionist
– A psychotherapist
Case (cont.)
• She has been treated with
– Erythromycin twice
– Cephalexin twice
– Augmentin three times
– Ciprofloxacin
– Intravenous ceftriaxone
– Oral nystatin
– Loperamide
– High doses of vitamins and a restriction diet
Case (cont.)
• She generally has had transient responses to
each of these medications, but her symptoms
return within 1-3 days of stopping them
• At times she has been told that she has
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Chronic EBV
Lupus
Lyme disease
Yeast
A nutritional imbalance
Allergies
CFS
• Is EXHAUSTING for patients and can be
for their physicians
• Can be managed successfully by patient
and skillful clinicians
• SUCCESSFUL MANAGEMENT IS
ACTUALLY VERY REWARDING
Fatigue
• Chronic fatigue syndrome is not the same
as chronic fatigue
– Chronic fatigue
• 25-30% of patients seeing a primary care
provider report fatigue
• Point prevalence about 5%
– CFS
• Incidence is unclear but point prevalence is
probably in the range of about 0.1-0.2%
CFS: Revised CDC case definition
1. Clinically evaluated, unexplained
persisting or relapsing fatigue that is of
new or definite onset; is not the result of
ongoing exertion; is not relieved by rest;
and results in substantial reduction in
previous levels of occupational,
education, social, or personal activities.
• PLUS
CFS: Revised CDC case definition
• Four or more of the following symptoms that
persist or recur during six or more consecutive
months and do not predate the fatigue
– Self reported impairment in memory or
concentration
– Sore throat
– Tender cervical or axillary lymph nodes
– Muscle pain
– Multiple joint pain without redness or swelling
– Headache of a new pattern or severity
– Unrefreshing sleep
– Post-exertional malaise lasting > 24 hours
CFS: Revised CDC case definition
• Modifications
– Excluded
• Patients with psychoses
• Patients with substance abuse
– Included
• Fibromyalgia
• Somatoform disorders
• Generalized anxiety/panic disorder
CFS: Case Definition
BUT
• It is important to not get overly “hung up”
on the CDC case definition when
managing a patient
– This is an epidemiology/research tool, not a
clinical tool.
CFS
• Complicated and controversial BUT
– It is not a new phenomenon
– It is a “real” illness
– We know a great deal about it
• A health care provider can not effectively
manage patients with CFS if he or she has
doubt about the validity of the patient’s
symptoms!
CFS: Epidemiology
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Young to middle age adults
More common in women than men
Fewer cases in minorities
Fewer cases in lower socioeconomic
groups
• Usually sporadic and “non-contagious”,
but has occurred in outbreaks
• BUT it occurs in all ages, races,
socioeconomic groups
What do we know about
prognosis?
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Disability variable
Often cyclical course
Most improve
Few completely recover
Recovery takes years
Earlier treatment (symptom management)
associated with better prognosis
Chronic Fatigue Syndrome
Historical Perspective
• It is not a new disease
• It is a newly (relatively) named disease
CFS: Historical Perspective
• 1770
Febricula
• 1871
DaCosta’s (effort) syndrome
• 1880’s Neurasthenia
– Sir William Osler writing in 1895 “in all forms
there is a striking lack of accordance between
the symptoms of which the patients complain
and the objective changes discoverable by
the physician”
Principles and Practice of Medicine
CFS: Historical Perspective
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1934 Myalgic encephalitis
1930-50’s Chronic brucellosis
1985 Chronic EBV
1980-90’s
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CMV
HSV
HHV6
Yeast
Total allergy syndrome
Chemical sensitivity syndrome
Chronic Lyme disease
• 2000’s
– XMRV
CFS: Etiology
Considerations
• Viral
– Many viruses have been proposed, but none
have been scientifically linked to CFS
– XMRV
• Endocrine-Metabolic
– Variable, mild hormonal abnormalities have
been reported
CFS: Etiology
• Immune Dysfunction (CFIDS)
– There is evidence of some immune
differences in patients with CFS, but the
significance is unclear
• Diverse
• Modest
• Inconsistently present
• Conflicting
CFS: Etiology
• Autonomic nervous system dysfunction?
– Neurally mediated hypotension (Positive tilt
table testing)
• Suggestive studies, but none placebo
controlled, blinded, randomized
• No consistent response to treatments for
this disorder
CFS: Etiology
• Psychological?
– Increased psychopathology in patients with
CFS
– Lack of objective abnormalities despite severe
symptoms
– Restricted patient profile
– Responds to placebo
CFS: Organic or Psychological?
• Does it matter if the origin is physical or
psychological? Not much
– If it is organic we do not have a diagnostic test
or specific treatment
– If it is psychological it does not make it less
real or less valid.
CFS Pathophysiology
What’s Hot?
• XMRV
– Not found in subsequent studies
– Do not treat with medications for HIV
• Genetic
– CFS has been linked to genes involved in the immune
and stress responses
– These findings suggest that patients with CFS have a
biologically determined difficulty managing stressors
CFS
• How can we diagnose something without a
diagnostic test?
– There is a characteristic history
– There is a characteristic physical examination
– There are characteristic test results
CFS: Characteristic History
• Sudden onset of fatigue often associated
with a typical infection such as a URI or
mononucleosis
• After resolution of the initial disease the
patient is left with chronic fatigue and
several additional symptoms
• Physical activity exacerbates the
symptoms
CFS: Characteristic History
• Pre-CFS history of the patient is NOT one
of multiple somatic complaints.
– They are not hypochondriacs. They have
been highly functioning individuals who are
“struck down” with the disease
CFS: Characteristic Examination
• Normal examination
– Including Mini Mental Status Exam (MMSE)
CFS: Characteristic Clinical
Features
• Specific points to emphasize
– Though patients often complain of fever, very
few have significantly elevated temperatures
• “I run low temperatures normally”
– Joints may ache, but there is no objective
evidence of joint disease
– Though muscles fatigue easily, strength is
normal as is EMG and muscle biopsy
– Lymphadynia is common, lymphadenopathy
is rare
CFS: Characteristic Laboratory
Results
• Normal
– CBC
– Chemistry screen
– TSH
– Sedimentation rate
– Other tests?: ONLY WITH CLINICAL
INDICATION
CFS: Diagnosis
• DO NOT ROUTINELY DO:
– Serology for
• CMV
• EBV
• Toxoplasmosis
• Lyme disease
• ANA
– Expensive neuroimaging
– Tilt table testing
CFS: Diagnosis
• If the patient has a typical story, negative
physical examination, and negative
screening tests we can make the
diagnosis.
CFS
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Concepts To Remember For Successful
Management
Patients with CFS are partially or completely
disabled.
Their outward healthy appearance belies an
internal sense of ill health.
It is common for friends, relatives, employers,
and physicians to believe they are malingering
or their symptoms are not “real”.
This results in anger, frustration, and a need to
justify their illness
CFS: Specific steps in
Management
1. Give the patient enough time and do a thorough
evaluation
2. Reassure the patient that the symptoms are real
3. Discuss problem of patient having to deal with the
validity of his/her disease
4. Do not underestimate the benefits of trust, support,
and reassurance that you can provide
CFS: Specific steps in
Management
5. Explain to the patient that this is not a new
disease – we know a lot about it
– Review the history of CFS in detail
6. Avoid the debate over psychogenic v organic
origin
7. Review treatment options
CFS
So what are the treatment options?
1. Tell the patient that there is no cure for
CFS, but there are treatments that help
2. “Re-frame” expectations – the patient has
a disability and should have appropriate
expectations
3. Encourage graded exercise
– Inactivity contributes to deconditioning and
depression
4. Suggest Cognitive Behavioral Therapy
5. Treat depression aggressively
CFS: Treatment Options (cont.)
6. Treat insomnia aggressively
7. Treat other “treatable” conditions
– Do not assume that every symptom is CFS related
– Caution patients about this
8. Options for fibromyalgia
- Physical therapy
- Duloxetine (Cymbalta®)
- 30-60 mg per day
- Amitriptyline (Elavil®)
- 12.5-50 mg per day
- Pregabalin (Lyrica®)
- 150-450 mg per day
- Topiramate (Topamax®)
- 25-200 mg per day
CFS: Treatment Options (cont.)
9. Orthostatic intolerance
- clonidine 0.1 mg nightly
- midodrine
10. Fatigue
- methylphenidate (Ritalin LA®)
- modafinil (Provigil®)
11. Reassure about prognosis
CFS: Treatment Options (cont.)
12. See at regular intervals
13. Caution about unproven, dangerous or
expensive treatments
14. Offer CDC pamphlet, website and hotline
– 404-639-1338
CFS: Management
Unproven and Disproved Therapies
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Ampligen
Essential fatty acids
Magnesium
Bovine liver extract
Acyclovir
Folic acid
B12
Interferon
Exclusion diets
• IVIG
• Removal of dental
fillings
• IL 2
• Cimetidine
• Ranitidine
• Evening primrose
• Many antibiotics
• Corticosteroids
CFS: Management
• Accept the fact that you will not be able to
successfully manage all patients with CFS
but avoid the temptation to give
unnecessary treatments.
Questions?