CFS/ME TREATMENTS

Treating Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) presents a significant challenge for people with CFS/ME and their physicians. As of yet, there is no known cause, cure or universal treatment for CFS/ME.

Since there is no one identifiable cause or falsifiable diagnosis for CFS/ME, there is also no one treatment protocol or "magic bullet". Due to the multi-systemic nature of the illness, and others like it, an emerging branch of medical science called psychoneuroimmunology is exploring how all the various theories fit together.

The treatments that are proposed and often attempted for CFS/ME are as varied as the suggested causes, and can generally be classified either according to the cause that they presume, or the symptom they propose to treat. Unfortunately, since CFS/ME symptoms tend to vary over time, it is very easy for someone to become convinced that a particular treatment has helped them (or not), regardless of its true effectiveness.

Alternative medicine is often proposed for CFS/ME, especially when conventional treatments are too toxic or otherwise poorly tolerated, or simply fail to relieve symptoms. Alternative treatments may also be more affordable or accessible to patients with limited funds or health care coverage. Medications that provide symptom relief are frequently the first line of treatment chosen by primary care providers for the person with CFS/ME.

DISCLAIMER:
The information contained in this site is intended as an educational aid only. Information is not intended as medical advice for individual conditions or treatment and is NOT a substitute for a medical examination, nor does it replace the need for services provided by medical professionals. ALL health information should ALWAYS be carefully reviewed with your health care provider.

Antidepressants are often prescribed to CFS/ME patients for a number of reasons. The doctor may believe depression is the cause of the symptoms, or to treat co-existing depression caused by CFS/ME. Tricyclic's may also help adjust sleep cycles. For patients with muscle or joint pain, or co-existing fibromyalgia, tricyclic antidepressants (prescribed at much lower doses than are usual for depression) have been shown to be effective for neuralgic pain in fibromyalgia sufferers, and persons with diabetic myalgia.

However, it must be pointed out that some antidepressants can exacerbate symptoms, especially muscle weakness, sleep-waking dysfunction and cardiac arrhythmia, and many sufferers have suggested that the drugs have in fact caused relapses. Some sufferers cannot tolerate any antidepressants at all. The problems here may center around the significant differences in brain chemistry between those with depression or those with CFS/ME. Overall, there is no clinical evidence that antidepressants provide significant relief of the core symptoms of CFS/ME.

An antidepressant, in the most common usage, is a medication taken to alleviate clinical depression or dysthymia ('milder' depression). Several groups of drugs are particularly associated with:

MAOI's

• isocarboxazid (Marplan®)
• moclobemide (Manerix®)
• phenelzine (Nardil®)
• tranylcypromine (Parnate®)

Tricyclic's

• amitriptyline (Elavil®, Endep®)
• clomipramine (Anafranil®)
• desipramine (Norpramin®, Pertofrane®)
• doxepin (Adapin®, Sinequan®)
• imipramine (Tofranil®)
• nortriptyline (Pamelor®)
• protriptyline (Vivactil®)

SSRI's

• citalopram (Celexa®)
• escitalopram oxalate (Lexapro®)
• paroxetine (Paxil®)
• fluoxetine (Prozac®)
• fluvoxamine(Luvox®)
• sertraline (Zoloft®)

These medications are now amongst the most commonly prescribed by psychiatrists and general practitioners, and their effectiveness and adverse effects are the subject of many studies and competing claims. A number of other antidepressant drugs, notably St John's Wort, are also widely studied and used.

Antidepressants are generally, if not in pharmacology, considered separately from stimulants. They are usually taken as a course over several weeks, months or years, and have a delayed onset of therapeutic action. Drugs used for an immediate euphoric effect are not generally considered antidepressants.

Despite the name, antidepressants are often used in the treatment of other conditions, including:

• anxiety disorders
• bipolar disorder
• eating disorders
• chronic pain conditions such as FM and CFS/ME

Some have also become known as lifestyle drugs, sometimes referred to as "mood brighteners". Conversely, other medications not known as antidepressants, including anti-psychotics in low doses and benzodiazepines, are also widely used to manage depression. In fact, the antidepressant term is sometimes applied to any therapy (e.g. psychotherapy, electro-convulsive therapy, acupuncture) or process (e.g. sleep disruption, increased light levels, regular exercise) found to improve clinically depressed mood. It is also the case that placebos tend to have a significant antidepressant effect, so that establishing something as an antidepressant in a clinical trial involves demonstrating a significant additional effect.

Drugs such as atomoxetine (Strattera®), which stimulate the autonomic nervous system, appear to have positive effects in some people with CFS/ME symptoms. Amphetamines and amphetamine analogs may help some patients. For example, methylphenidate (Ritalin®) has been found to be significantly better than placebo in relieving fatigue and concentration disturbances in a minority of CFS/ME patients but more research is needed into the long term effects.

Interestingly, at least some of those who experience improvement on stimulant drugs do not experience significant "payback effect," suggesting that the drug is to some degree acting to correct the underlying neurological problem rather than simply masking symptoms. Modafinil (Provigil®), a medication designed to aid in maintaining wakefulness, has had some positive effect on individuals with CFS/ME, but has not been properly studied. A small study suggested that long-term treatment with modafinil may not be beneficial for CFS/ME patients.

A form of low blood pressure called neurally mediated hypotension (NMH) is common in people with CFS/ME. It's caused by an abnormal interaction between the heart and the brain, even though both organs are normal and healthy. Also called the fainting reflex, NMH can cause dizziness and fainting and is sometimes diagnosed by what's called a tilt table test.

Some people with diagnosed NMH take a low blood-pressure medication called Florinef (fludrocortisone), while others take the high blood-pressure medication Tenormin (atenolol). If you're on Tenormin, you'll probably need to be watched for low blood pressure and may be advised to increase your salt and water intake.

Various hormones have been tried from time to time, including specifically steroids (such as cortisol) and thyroid hormones. Though conventional steroidal treatment may produce short-term pain relief, it has not been shown to be of any general benefit.

Studies performed by Dr. Jacob Teitelbaum incorporating low-dose cortisol therapy in a holistic approach have demonstrated positive results, but other studies have shown little benefit from cortisol itself. (Dr. Teitelbaum argues that the approach taken in those studies is flawed.)

Thyroid hormones occasionally are effective for certain people who may either have a thyroid hormone deficiency or lack an enzyme that allows them to effectively use thyroid hormones (though one could question whether the disorder in such a case is correctly classified as CFS/ME). As hypothalamus dysfunction seems to be implicated in CFS/ME, standard thyroid tests may not produce accurate results. Therefore, a short trial of either levothyroxine (T4) and liothyronine (T3), or a combination supplementation may be warranted if clinical signs seem to indicate possible hypothyroidism.

"Antimicrobial" refers to a variety of drug types, including antivirals, antibiotics, antifungals and antiprotozoals. Researchers say the bodies of many people with CFS/ME constantly act as if they're fighting viral infection. While no specific virus has been linked conclusively to CFS/ME, some research supports the possibility of the Epstein-Barr virus (which causes mononucleosis), human herpes virus 6 (HHV-6, which causes roseola) and enteroviruses.

• Ampligen (poly I: poly C12U)
  This experimental drug is awaiting FDA approval for CFS/ME, and is not yet on the market for any use. Ampligen works by jump-starting your body's natural anti-viral pathway and regulating levels of Rnase L (a substance in your cells that attacks viruses), which can be high in people with CFS/ME.

Studies show Ampligen is more effective and has far fewer side effects than other drugs in its class. Philadelphia drug manufacturer Hemispherx Biopharma is hoping evidence from Phase III trials will be strong enough to convince the FDA to approve it.



• Valcyte® (valganciclovir)
  The antiviral valganciclovir treats HHV-6, which multiple studies have found in a significant percentage of people with CFS/ME. Small studies have had encouraging results, but experts agree that larger and better designed studies need to be done before they can draw reliable conclusions.

Because researchers haven't identified a particular infection that leads to CFS/ME, doctors don't usually prescribe other antimicrobials for it, unless you have an active infection.

Some CFS patients have histories of allergy, and these symptoms may flare periodically. Non-sedating antihistamines may be helpful for CFS patients with allergies. Examples include desloratadine (Clarinex), fexofenadine (Allegra), and ceterizine (Zyrtec). However, anti-allergy therapy has no efficacy in the treatment of CFS itself. Some of the more common adverse reactions associated with use of these medications include drowsiness, fatigue, and headache. Sedating antihistamines such as benadryl can also be of benefit to patients at bedtime. The tricyclic antidepressants mentioned above also have potent antihistamine effects.

Doctors sometimes prescribe anti-anxiety drugs for those CFS/ME patients with panic disorder. They include:

• Xanax (alprazolam)
• Klonopin (clonazepam)
• Ativan (lorazepam)

Common side effects of anxiety drugs include sedation, amnesia, insomnia, muscle cramps and convulsions. Stopping them also can lead to withdrawal symptoms.

Many CFS patients experience significant amounts of physical, neuralgic pain. This "nerve pain", like that of phantom limb, diabetic neuralgia and fibromyalgia, does not generally respond well to NSAIDS, although some patients report that naprosyn or naproxen provides some relief due to its muscle relaxant properties. Tricyclic antidepressants, as above, offer better relief for some cases of nerve pain. Other pain relievers may have uses as well.

Patients experiencing "other" pain (such as headache or migraine) should receive appropriate pain management for those symptoms. Hot water bathing has also been noted as relieving fibromyalgia or neuralgic pain, but patients with severe CFS/ME, low blood pressure or dizziness are advised to be cautious about the use of hot tubs or baths. Acupuncture has also been shown to relieve pain in fibromyalgia cases, and may be beneficial to CFS sufferers as well.

These are generally "food supplements" of various types that are claimed to enhance the immune system, although they can include various antiviral drugs. They are often proposed either to treat some presumed viral infection or to treat a presumed general immune deficiency.

High rates of success were reported in using IV ganciclovir to treat CFS/ME patients in trials as early as 1993-1994. More recently, trials with valganciclovir, an oral pro drug for ganciclovir, have produced similar positive results.

A specific infection as a cause for chronic fatigue syndrome has not been identified, and antibiotic, antiviral, and anti fungal drugs should not be prescribed for treatment of CFS in general. However, in people with elevated C pneumonia levels, particularly increased IgM titers, antibiotic therapy with doxycycline (Doryx, Doxy) may be effective in treating Lyme disease, sinusitis and other bacterial infections.

Another view is that some antibiotics have specific immuno-modulating side effects, quite separately from their antibiotic action. In the MedLine database, ciprofloxacine, doxycycline and the penicillin's are reported to have significant positive results in some patients. An even larger group of patients may have adverse effects, and a third group no effect at all.

While many patients still show evidence of an infectious agent in their system after antibiotic treatment, blood antibody levels are often low, producing a negative blood test result. For example, a patient with Lyme disease who has received antibiotic treatment may be pronounced "cured" of Lyme when their antibody levels are at or below those found in healthy persons, although the patient may still have symptoms characteristic of both CFS/ME and Lyme.

Controversy has arisen over whether to diagnose such patients with CFS or chronic Lyme, because there is no way to prove that the Lyme organism has been eradicated, and numerous studies document both persistent infection and false negative tests in Lyme disease. Extended courses of antibiotics (sometimes given intravenously) are recommended by some physicians for these cases, and have had a beneficial effect for some patients diagnosed with chronic Lyme disease; however this treatment remains very controversial.

Some people with CFS have allergies that periodically flare up. Non-sedating antihistamines may be helpful and include desloratadine (Clarinex®), fexofenadine (Allegra®), and cetirizine (Zyrtec®). However, allergy therapy does not treat CFS itself.

Given that the symptoms of CFS/ME generally resemble those of metabolic and mitochondrial disorders, a combination of supplements often known as a mito cocktail is sometimes used to treat the disorder.

This "cocktail" consists of relatively large amounts of l-carnitine and CoQ10, and possibly d-ribose, vitamin B12, biotin, and several other nutrients. As with mitochondrial disorder, it is believed that large amounts (eg, 2-10g/day l-carnitine) are necessary to have a significant effect, and smaller amounts of these nutrients will not generally be helpful.

Cognitive Behavioral Therapy (CBT) teaches you how to change your thinking, misguided beliefs, and fears that prevent you from planning and managing your activities realistically. Research shows that people with chronic fatigue syndrome (CFS) can improve when they learn about their ability to control their health and then take steps to do so.

Some facts about cognitive-behavioral therapy:

• It is not psychoanalysis. You will not be asked to lie on a couch and delve into your subconscious and your dreams.


• It's more like coaching or counseling. You and your therapist will talk about what your goals are and ways to reach them.


• It's not about fooling yourself into thinking positively. It's about learning how to think accurately about your situation instead of letting baseless fears guide your feelings and your behavior.


• Therapists teach self-help strategies, such as gentle exercise, improving sleep habits, learning to pace daily activities, getting support from others, and daily meditation and relaxation exercises.

Many people find complementary therapies such as acupuncture, tai chi and alternative food and herbal supplements to be helpful.

Please note that adding food and herbal supplements to your therapy regimen needs to be done with care and with your physician's and pharmacist's knowledge to prevent undesirable side effects.

Altered digestion, food intolerance's, decreased energy, fatigue, cognitive problems and sleeplessness create the need for revisions in daily living routines. These can include changes in diet, exercise modifications, alterations in activities of daily living according to one's energy level, and sleep/rest management. All may require the assistance of professional clinicians, such as a dietitian, physical and/or occupational therapist, mental health professional and sleep therapist.

One type of exercise that has been beneficial to people with CFS/ME has been Tai Chi. For more about this read: Tai Chi Benefits for Fibromyalgia and CFS/ME.

Ampligen is a synthetic nucleic acid product that was designed to stimulate the production of interferons, a family of immune response modifiers that are also known to have antiviral activity. Although it may not directly induce interferon, reports of double-blinded, placebo-controlled studies of CFS patients documented modest improvements in cognition and performance among Ampligen recipients compared with the placebo group. These preliminary results will need to be confirmed by further study. The Food and Drug Administration (FDA) does not approve Ampligen for widespread use, and the administration of this drug in CFS patients should be considered experimental. Ampligen is not widely available, is costly, and is generally not reimbursable through insurance programs. Finally, although most recipients of Ampligen tolerated the drug well, adverse reactions, such as liver damage, were reported and are still incompletely characterized.

Gamma globulin is pooled human immune globulin and contains antibody molecules directed against a broad range of common infectious agents. Gamma globulin is ordinarily used as a means for passively immunizing persons whose immune system has been compromised, or who have been exposed to an agent that might cause more serious disease in the absence of immune globulin. Gamma globulin is not effective in the treatment of CFS. Serious adverse reactions are uncommon, although in rare instances gamma globulin may initiate anaphylactic shock.

Corticosteroids. Controlled studies of corticosteroids have been conducted because some patients with CFS had a slight decrease in urinary cortisol levels. Some benefits were noted in patients treated with low dose hydrocortisone but the effects disappeared after one month. High dose replacement therapy had some benefit but was complicated by attendant adrenal suppression.

Dehydroepiandrosterone (DHEA) was reported in preliminary studies to improve symptoms in some patients. However, in subsequent studies, this finding has not been confirmed and the use of DHEA in patients should be regarded as experimental. Its use should be limited to patients with documented abnormalities in DHEA levels and function.

High colonic enemas have no demonstrated value in the treatment of CFS. The procedure can promote intestinal disease.

Kutapressin is a crude extract from pig's liver. It is not readily available and there is no scientific evidence that it has any value in the treatment of CFS patients. Kutapressin can elicit allergic reactions.

Neurosurgery. Unpublished reports of malformations at the base of the skull (Chiari malformations) as being causative of CFS have been circulated, and surgical intervention has been suggested in some of those unsubstantiated reports. Surgical intervention is not recommended at this time.

Many CFS/ME patients face the stress of economic and legal problems, which can cause a serious deterioration and paralysis of the patient. CFS/ME sufferers may lose jobs, marriages, and the ability to work at all, causing severe financial loss and distress. A lawyer, social worker or counselor can be beneficial in helping the patient determine their best course, and may assist the patient with applying for work-related disability, social programs, and other aid.

Hyperbaric oxygen treatments infuse the body with oxygen, increasing O2 levels by up to 1000% in body tissues through the increased pressure. This oxygenation of the tissues allows better functioning of organ systems and has been shown to lessen pain and increase movement and flexibility in chronic pain patients. Viruses are unable to survive in the presence of abundant oxygen, therefore a significant "die-off" of viruses and bacteria is experienced when undergoing hyperbaric treatments. Hyperbaric therapy also acts as an immune modulator and allows organ and gland functionality to normalize, reducing many debilitating symptoms. Because the chambers pressurize the atmosphere, hyperbaric acts as a detoxifier as well. By forcing oxygen into the tissues through this pressure, toxins, chemicals and other impurities are forced out.

Hyperbaric oxygen is not a cure; but it does help patients to feel better and do more, and this often revives their desire to do even more. Hyperbaric Oxygen Therapy is a safe, effective method of delivering increased oxygen to the body’s cells, tissues, organs, and fluids.

• Breathing oxygen in a hyperbaric chamber gives us up to a 400% increase from the amount of oxygen available in normal air.


• Hyperbaric oxygen therapy dissolves oxygen directly into the plasma, brain and cerebrospinal fluids.


• The increased pressure causes the blood plasma and other liquids of the body to absorb MUCH LARGER QUANTITIES of oxygen, greatly increasing oxygen uptake by the cells, tissues, glands, brain, other organs, and fluids of the body.


• The resulting increased uptake of oxygen allows for increased circulation to areas that may have swelling or inflammation. At the same time, the increased pressure decreases the swelling and inflammation.


• Oxygen is then utilized by the body for vital cell functions. Healthier cells equals healthier tissues, organs, and bodily functioning.

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• About CFS/ME
• Causes
• CFS/ME Ability Scale
• CFS/ME vs FM
• CFS vs ME
• Course
• Diagnosis

• Diet For CFS/ME
• Duration
• Genetic Link
• Multi-Symptom Disease
• Myths
• Pediatric CFS/ME
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• Research Suggests
• Severity
• Subtypes
• Symptoms
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• Who's at Risk?

Ampligen and CFS/ME

Nov. 12, 2009

Ampligen (polyu I: poly C12U) in an experimental anti-viral, immune-system modulating drug that's been in the works for more than 30 years. It's been studied as a possible treatment for multiple conditions, including chronic fatigue syndrome (CFS/ME), HIV/AIDS, certain types of cancer, and, most recently, both avian flu (H5N1) and swine flu (H1N1).

Ampligen's manufacturer, Hemispherx Biopharma Inc., has applied for FDA approval of Ampligen as an CFS/ME treatment and the decision is expected in June 2009. If it's approved, Ampligen will be the first approved treatment for this condition.

What Ampligen Does:

Ampligen is believed to work by jump-starting your body's natural anti-viral pathway and regulating levels of RNase L (a substance in your cells that attacks viruses), which can be high in people with CFS/ME. It's also been shown to inhibit tumor-cell growth.

Ampligen for CFS/ME:

In clinical trials, Ampligen has been shown to improve cognition, exercise tolerance, neuropsychological health and overall function in people with CFS/ME; decrease activity of HHV-6 (a virus believed to be linked to CFS/ME); and decrease RNase L activity.

According to Ampligen's manufacturer, Hemispherx Biopharma Inc., more than 40,000 doses of Ampligen were given to about 500 patients in clinical trials at more than 20 U.S. clinics. One of those clinics, the Hunter-Hopkins Center, says 80% of its patients improved on Ampligen, and 50% improved significantly.

Ampligen Dosage:

Ampligen is administered intravenously (I.V.). In trials and under conditional permits by the FDA, patients typically have received 400mg of the drug twice a week. Hunter-Hopkins recommends at least 12 months of therapy, and 18 months for the severely ill.

Ampligen Side Effects:

Possible side effects of Ampligen include:

• Mild flushing
• Tightness of the chest
• Rapid heartbeat
• Anxiety
• Shortness of breath
• Feeling hot
• Sweating
• Nausea
• Liver enzyme level changes
• Diarrhea
• Itching
• Low blood pressure
• Rash
• Arrhythmias
• Low white blood cell count
• Dizziness
• Confusion

Some patients have flu-like symptoms for a few hours after receiving a dose of the drug, and the company says these effects typically went away after several months of treatment.