Chronic
Fatigue Syndrome Epidemiology
The plethora of names and the frequency of descriptions in
the medical and lay press are evidence of the confusion about Chronic Fatigue
Syndrome, Fibromyalgia and Post Viral Fatigue Syndrome (PVFS). There can be
no doubt, however, that one or more syndromes of chronic fatigue certainly do
exist, and the personal testimonies of some of the sufferers highlight how painful
and disabling it can be. There can be few conditions with such a varied and
extensive nomenclature, but through the confusion can be discerned two distinct
groupings: the epidemic cases (including epidemic neurornyaesthenia, Adelaide
epidemic, Royal Free disease, Iceland disease, Los Angeles flu, Lake Tahoe disease)
and the sporadic cases (including myalgic encephalomyelitis (ME), fibrositis
myalgia, Yuppie’ flu, idiopathic chronic fatigue syndrome, Epstein Barr
disease/chronic infectious mononucleosis). In addition to their historical and
epidemiological distinctions, there are a number of significant differences
in the clinical features which they present. Estimates of its yearly incidence
range from 140 cases in 6 months from a general practice population for 10,000
(annual rate = 2,800/100,000) to a hospital estimate of an incidence of 3-5
per 100,000. The total number of such cases in the UK is not known, but reports
of the condition to specialist centres and private health insurance companies
are increasing rapidly and the ME Association estimates the overall prevalence
in the UK at around 150,000 cases. Most studies have shown a strikingly consistent
predominance of females compared with males of around 2:1 and the large majority
of cases are said to occur between the ages of 18 and 60 (the mean age in most
series is around 35 years). There is a common perception that the disorder predominantly
affects individuals from the middle socio-economic classes and of professional
occupation, hence the name ‘Yuppie flu’ coined, somewhat uncharitably,
by the press. In the great majority of cases, there are no abnormalities on
clinical examination and routine laboratory testing. Patients almost always
report having been quite well before the onset of the condition, and usually
relate the start of the illness to a non-specific ‘viral’ infection,
hence the term ‘postviral fatigue syndrome.’ A number or organisms,
including Candida and molds have been implicated in the causation of the condition;
in the UK, interest has mostly centred on the enteroviruses and in particular
the Coxsackie viruses, while in the USA the focus of attention has been primarily
the Epstein-Barr virus (EBY). Those studies which have examined psychiatric
status reveal that between 50-80% fulfil operational criteria for psychiatric
disorder. The natural history appears to be of a persistent condition with a
generally poor prognosis: ‘Most of the cases do not improve, give up their
work and become permanent invalids.’
CAUSATIONAL THEORY
Chronic Fatigue Syndrome
The psychosocial characteristics that appear to differentiate
patients who are chronically fatigued from those with Chronic Fatigue Syndrome
(CFS) are: Symptoms of Major Depression (which typically reduces immune system
functioning), a higher degree of stressful life change events in the past year,
lower levels of physical activity, and social introversion. When some individuals
with high levels of general fatigue are infected by viruses and/or have many
life stresses, their fatigue, physical symptoms, and depressive moods become
severe. A chronic state of this condition can lead to CFS. Since viral infections
can alter neurotransmitter and/or neuroendocrine regulation it has been hypothesized
that CFS may result from a mild central adrenal insufficiency secondary to either
a deficiency of CR1-I or some other central stimulus to the pituitary-adrenal
axis triggered by a viral illness in an already fatigued immune system. Laboratory
findings with CFS patients include reduced NK cell activity, reduced numbers
of CD 16+ and CD56+ cells, significantly reduced basal evening glucocorticoid
levels, (glucocorticoid insufficiency appears to be continual), hypofunctioning
of hypothalamic CRH neurons and low 24-hour urinary free cortisol excretion
with elevated basal evening ACTH concentrations.
Fibromyalgia Syndrome
There are several theories, each with their own research evidence,
to explain Fibromyalgia Syndrome. Researchers will probably find that more than
one of these explanations combine together to create the syndrome. In no particular
order they are: Serotonin deficiency; Cortisol deficiency resulting in and excess
of cytokines which are immune system chemicals that fight disease, but cause
pain in muscle tissue; Pituitary growth hormone (GH) deficiency and, or serotonin
deficiency causing disturbed Stage 4 Delta sleep and resulting in inability
of body to repair microscopic muscle tears; Serotonin deficiency resulting in
increase of pain signals to brain may combine with overabundance of pain transmitting
substance P; Phosphate build-up in muscle tissue. Individual may have genetic
predisposition and then encounter a triggering event such as physical trauma,
or chemical exposure.
DIAGNOSIS
By general agreement the definition of CFS and FS is a diagnosis
of exclusion. Indeed, one of the universally accepted criteria is the absence
of normal results on routine laboratory testing. Although the hunt is on to
identify a biological marker (and some claims have been made to have found one),
most doctors and sufferers alike would agree that at present no such marker
exists. In its absence, a precise case definition together with the use of reliable,
valid and reproducible measures is essential in order to ensure that different
studies include comparable patients.
Chronic fatigue syndrome (CFS)
1. Characterized by fatigue as the principle symptom
2. The fatigue is severe, disabling, and affects physical and mental functioning
3. The symptom of fatigue should have been present for a minimum of 6 months
during which time it was present for at least 50% of the time
4. Four or more of the following symptoms are concurrently present: impaired
memory and concentration, sore throat, tender cervical or auxiliary lymph
nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep, post-exertion
malaise, depressed mood.
Fibromyalgia (FS)
1. Specific points (18) of tenderness or pain
2. Two or more of the following symptoms are concurrently present: impaired
memory and concentration, muscle pain, multi-joint pain, new headaches, unrefreshing
sleep, post-exertion malaise, depressed mood.
Post-infectious fatigue syndrome (PIES)
1. There is definite evidence of infection at onset or presentation
2. The infection has been corroborated by laboratory evidence
3. The syndrome is present for a minimum of 6 months after the onset of the
infection
Chronic Epstein-Barr virus (EBV)
1. Antibody tests for EBV are of no value in diagnosing
the syndrome.
2. Flu-like illness from which you cannot recover.
3. Overwhelming fatigue, lack of energy
4. Severe disturbances of sleep and memory
5. Unusual sensations, including tingling in parts of the body or the feeling
of a motor racing inside of them.
6. Sore throats, fevers, and swollen glands
SELF-CARE RECOMMENDATIONS
We have found the following types of self-care activities
to be essential for fatigue and myalgia recovery. Your therapist can give you
more detailed information and suggestions in each category. Self-care allows
your body to mobilize its healing resources to resolve the crisis.
CHRONIC FATIGUE SYNDROME TREATMENT OPTIONS
1. Massage
2. Acupuncture
3. Gingko Biloba - cognitive problems
4. B-100 vitamin complex
5. American Ginseng - adaptagen
6. Follow and antioxidant plan including Coenzyme Q10 and Noni juice supplementation
7. Anti-depressant therapy including use of hypericum perforatum and ginkgo
biloba
8. Aerobic exercise and weight training
9. Avoidance of nonorganic environmental chemicals
10. Contrast showers (alternating hot and cold, 1 time daily)
11. Malic acid + Calcium + Magnesium = healthy energy metabolization in muscle
cells
12. Sleep hygiene leading to robust and sufficient sleep
13. Relaxation response training
14. Breathing exercises
15. Communication and boundary-setting skills
16. Educational and career planning
17. Low-protein, low-fat, high-carbohydrate diet
18. Antioxidant vitamin formula plus a B-100 B-complex supplement
19. Astra-8, a mixture of Astragalus with seven other Chinese herbs
20. Avoid symptom-reinforcing support groups
21. Establish social supports
22. Chronic Fatigue Syndrome. The Hidden Epidemic, by Jesse A. StoW MD &
Charles R. Pellegrino, PhD
23. Oxygen therapy
24. Therapy with NADA: Research subjects were given 10 mg of nicotinamide
adenine dinucleotide (NADH) in it’s stabilized, oral absorbable form
NADA (brand name Enada). Nicotinamide adenine dinucleotide is known to trigger
energy production through ATP generation which may for the basis for it’s
potential effects. No adverse effects were reported. 31% of patients responded
favourably to NADH compared to 8% for the placebo group. (Forsyth, et al.
Therapeutic effects to oral NADH on the symptoms of patients with chronic
fatigue syndrome. Ann Allergy Asthma Immunol. 1999;82:185-191.)
25. Therapy with essential fatty acids (EFAs):
Eight capsules per day of the following essential fatty acids were administered
to 63 adults resulting in a 74% improvement in CFS symptoms over a one month
period.
• 36 mg gamma-linolenic acid (GLA)
• 17 mg of eicosapentaenoic acid (EPA)
• 255 mg of linoleic acid
• 10 IU of vitamin E
The patients took eight capsules a day in four divided
doses. The effect of high doses of essential fatty acids on symptoms postviral
fatigue syndrome was marked. At one month 74% of patients on active treatment
and 23% on placebo assessed themselves as improved over baseline. No adverse
events were reported. (Behan P, Behan W and Horrobin D. Effect of high doses
of essential fatty acids on the postviral fatigue syndrome Acta Neurol Scand
1990;82:209-2 16.)
FIBROMYALGIA TREATMENT OPTIONS
1. Acupuncture: for pain relief and neuromuscular reconditioning.
2. Allergy Treatment: both preventive and situational.
3. Analgesic and Anti-inflammatory Medication: Ibuprofen, Indocin, NSATDs,
Codeine.
4. Biofeedback/Neurofeedback: (Reducing pain, stimulating immune system and
neurochemical balance, normalizing brain area targeted through brain imaging.)
5. Dietary and Supplements: 5-Hydroxitryptophane may be helpful in establishing
normal sleep patterns and raising pain threshold; Barley Green can act as
an anti-inflammatory agent and can be sprinkled on salad, or taken in water
(1 or 2 tablespoons). Malic + Calcium + Magnesium supplements as directed
on label promote healthy energy metabolization in muscle cells. Malic acid
(1200-2400 mg.), which plays an important role in sugar metabolism, has been
helpful to many persons with ESS. Proteolytic enzymes, or Infla-Zyme Forte
(American Biologists Co.) can re duce inflammation and improves protein absorption
needed for tissue repair. Free-form amino acid complex (Use as directed can
supply protein to muscles for repair and rebuilding. A carbohydrate restriction
diet is also helpful for some FSS sufferers. Eating more frequently and drinking
a large amount of water helps provide a steady supply of protein muscle tissues
and to flush out toxins. Avoid wheat, brewers yeast, white potatoes, saturated
fats, red meat, sugar, fried foods, tomatoes, green peppers, eggplant, and.
alcohol.
6. Environment: Some researchers believe that ESS is triggered, caused, or
exacerbated by chemical sensitivities. Avoidance on non-organic chemicals
in am imagethe environment is recommended.
7. Exercise: Gentle, very low-impact aerobics is the second most important
intervention for most people with FSS. Start slow (5 minutes per day) and
build to tolerance (20-30 minutes per day). Positive benefits cannot be expected
until tolerance level is reached. Yoga (esp. bridge, cobra, knee squeeze,
spine twist postures), tai chi, or basic stretching exercise improves muscle
fitness, reduces muscle pain and restores neurochemical balance.
8. Heat (Topical): Some find symptomatic relief from infrared light heat,
or hot whirlpools which can increase blood flow to muscle tissue. Others report
deep heat increases inflammation and pain - probably due to overheating which
increases metabolism and consumption of oxygen beyond the ability to restore
oxygen to the muscle being heated. Some ESS sufferers find contrast showers
(alternating hot and cool) are helpful in stimulating blood flow to muscle
tissue.
9. Medication (Prescription Only): Serotonin levels can be increased through
use of serotonin reuptake inhibitors (SRls) such as Prozac and Wellbutrin,
but these medications are primarily effective in giving relief from depression
associated with FSS. Flexeril, Elavil, Sinequan Doxepine, Desryil and Amitriptyline
can be used to establish regular sleep patterns (Amitriptyline has more side
effects) and can also have an antidepressant effect. Uricosurics, specifically
Guaifenesin (1800 mg. Per day) can assist muscles in flushing out toxins.
(The positive action of Guaifensin can be blocked by use of plant extracts,
or salicylates found in cosmetics and lotions, herbal medications, Myoflex
and Ben Gay). Inflammation can be treated with non-steroidal anti-inflammatory
drugs (NSAIDs), or Azulphadine which is also helpful for irritable bowel syndrome.
Some have found relief through thyroid hormone. Amantadine and medications
designed for high blood pressure can be used to increase blood flow. An underactive
thyroid gland is associated with muscular stiffness, fatigue, and depression.
Use of benzodiazepines is discouraged as they can block Stage 4 deep sleep.
Medications should always be started at lowest possible dose and increased
every few days to maximum relief of symptoms without unacceptable side effects.
10. Oxygen Therapy: Breathing exercises and aerobic exercise can restore normal
oxygenation to muscle tissues. Also, dietary supplementation with Coenzyme
QIO (75 mg. Daily), Dimethylglcine (DMG) (50 mg. 3 times daily), or Ginko
biloba (take as directed) can improve oxygenation of tissues. Bottled oxygen
can be utilized under medical supervision. Transfusions of red blood cells
can be used in severe FSS situations.
11. Physical Therapy: Crainosacral, Myofacial Release, Rolfing and traditional
massage therapy can restore neuro-muscular pathways and muscle function. Posture
and movement training (Feldenkris) can also be helpful.
12. Relaxation Response Training: Guided imagery, autogenics, progressive
muscle relaxation and other techniques (with, or without biofeedback) can
mobilize natural healing responses.
13. Rest: Next to exercise and proper sleep patterns probably the most helpful
self-help treatment. Rest restores general wellness and allows body systems
to reset themselves.
14. Sleep Hygiene: A primary causative factor in Fibromyalgia syndrome appears
to be loss of Stage 4 deep sleep (which restores muscle function) due to an
“alpha-EEG anomaly”. Intrusive drery, restless leg syndrome, nocturnal
myoclonis, sleep apnea, and other sleep disorders can disturb delta level
sleep. Re-establishing normal sleep patterns is the most important treatment
for FSS. No More Sleepness Nights (Hauri and Linde, 1990) and Insomnia (Morin)
are two of the best self-help texts in this area. Melonatonin is a hormone
naturally secreted by the pineal gland and can be a very effective alternative
to synthetic medications in treating sleep disorders. 5-Hydroxytryptophane
can increase serotonin levels in the brain and re-establish normal sleep patterns.
15. Topical Pain Relievers: Trigger Point Injections with lidocaine, or alternate
medication. Topical application of cayenne (capsicum) powder mixed with wintergreen
oil can help relieve muscle pain by inhibiting release of neurotransmitters
responsible for pain transmission.
16. Fibromyalgia and Chronic MPS: A Survival Manual (Starlanyl and Copelan)
Warnings: The information above is provided for educational purposes and may
not be construed as a medical prescription or as a substitute for the advice
of your physician. Do not use these products without first consulting your
physician especially if you are pregnant or lactating. Be advised that some
herbs and dietary supplements can cause severe allergic reactions in some
individuals and may also have an adverse result in conjunction with other
medications, or treatments. You should regularly consult your physician in
matters regarding your health and particularly in respect to symptoms and
conditions which may require diagnosis or medical attention. Revaluate use
of any product after 6 months.
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