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As there is no one identifiable cause or falsifiable diagnosis for CFS, 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 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 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 (see regression fallacy). Because the placebo effect is commonly stronger in highly 'subjective' symptoms, some medical professionals believed this also applied to CFS, however patients with CFS actually have a significantly lower response rate to placebos compared with patients of many other illnesses (about 20% vs 30% respectively). Alternative medicine is often proposed for CFS, especially when conventional treatments are poorly tolerated or fail to relieve symptoms. Alternative treatments may also be more affordable or accessible to patients with limited funds or health care coverage.
Behavioral interventions
Behavioral interventions including cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have been shown to be at least partially effective in some people with CFS. An updated systematic review which was published in the Journal of the Royal Society of Medicine (October 2006) found these are the only two known treatments that seem helpful. The statement of principal findings regarding CBT/GET was: "A number of RCTs (randomised controlled trials) suggest that behavioural interventions, including elements of CBT, GET and rehabilitation, may reduce symptoms and improve physical functioning of people with CFS/ME." However some uncertainty still exists over the efficacy of these treatments, especially GET for severely affected patients, as none were included in studies that passed the inclusion criteria of the review. The review also emphasized the need for more and better conducted studies of both therapies, as well as more research into the adverse affects of treatments in general as they may be under reported or poorly quantified. As mentioned in the review under the 'unanswered questions/further research' section, very few studies assessed the effectiveness of "interventions for children and young people and for severely affected patients." More research is needed on severely affected patients in general; because many treatments and studies require patients to attend a clinic, and those with the worst symptoms often receive the least support from health and social services. This may bias the results towards those with less severe symptoms. The review also found that no intervention had been proved to be effective in restoring the ability to work, although another systematic review concluded the opposite: "Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work.". The "Gibson Report" (Report of the Group on Scientific Research into Myalgic Encephalomyelitis 2006) provides information about treating CFS with CBT and/or GET. However, the report itself has been criticised by several groups, for: being poorly conducted, misrepresentations, omissions, lack of references, factual inaccuracies or bias, and even potentially damaging implications. According to the Countess of Mar (panel member of the Group on Scientific Research into ME), the report was a political inquiry into the science, not a scientific inquiry, of CFS. In the "25% ME Group Submission to Gibson"[81] they state that both CBT and GET are not only just unhelpful to many severely affected CFS patients but also dangerous/harmful.
Cognitive Behavioral Therapy (CBT)
Cognitive behavioral therapy (CBT) is claimed to be an effective evidence-based therapy for CFS. The use of psychological therapies such as CBT does not imply that CFS is a psychiatric condition or that physical symptoms are not real. The protracted course of the illness may cause depression, anxiety and mental distress. In addition, it is maintained CBT may teach patients various "coping strategies" to help them deal with cognitive impairments such as a deterioration of short-term memory or abbreviated attention span, although it is uncertain how changing one's schemas, as CBT theory contends, would cause improvement in these serious pathological symptoms. Dr. David Smith, a former medical advisor to the ME Association in the UK who reports to have successfully treated many children using antidepressants and therapy[citation needed], offers a possible explanation on his website. Some patients and patient groups dispute such claims, pointing out that CBT is invariably described as an "exposure therapy" e.g. UK mental health charity MIND, that virtually all the conditions commonly listed as being suitable for CBT are behavioural and that the 2002 UK CMO's Report describes CBT as "a tool for constructively modifying attitude and behaviour." Some patients and advocates suggest that there are “good” and “bad” forms of CBT, and it is important for patients to decide whether CBT is advisable in their case[citation needed]; others point out that, as supported by Carruthers and Van de Sande in their Overview of the Canadian Consensus Guidelines, that to avoid such confusion supportive counselling should not be mis-termed CBT.
Additional to the positive findings of the above-mentioned updated systematic review on CBT, the above-mentioned Gibson Report also states that CBT in general is helpful to many people with other illnesses; and while it is controversial in regards to CFS, it seems to be most effective in those with less severe forms but much less effective in the severely affected. Commenting on the relevance of CBT for CFS, the report states that it has a role to play in treatment but at best is only a partial answer and more research is needed. Some approaches aim at active rehabilitation rather than just adapting to the illness. CBT does not seem to be as efficacious when provided by general practitioners or when given in a group. The effect of CBT has been demonstrated up to five years after therapy. The place of CBT for children, young people and the severely affected needs to be better established, although some open studies suggest that it is helpful, so long as it is adapted for the individual patient. It has not been shown that CBT causes a significant worsening of symptoms, but because some severely affected patients are worsened by even minor efforts or stresses (which includes verbal communication), it is understandable if they remain cautious about CBT.
Similar/Related Treatments
* Counselling: Many CFS patients face the stress of economic and legal problems, which can cause a serious deterioration and paralysis of the patient[citation needed]. CFS sufferers may lose jobs, marriages, and the ability to work at all, causing severe financial loss and distress[citation needed]. A lawyer, social worker or counsellor 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.
Graded Exercise Therapy (GE, GA or GET)
Several rehabilitation programs have been proposed which involve supervised or self-monitored graded exercise or activity. Such programs are designed to overcome deconditioning, increase strength and cardiovascular health. The program should incorporate considerable education wherein the sufferer learns to start at an appropriate level of activity (based upon intensity and duration) which is incrementally increased, at a rate which does not substantially increase symptoms. Those who fit a 2003 ME/ICD-CFS definition with post exertional malaise may wish to consider whether graded exercise is recommended in their case because it can cause serious deterioration in the exertional intolerant, and the 25% ME Group point out that many severe cases were in fact mild cases before undergoing such therapy. More encouragingly and in addition to the positive findings of the previously mentioned updated systematic review on GET, the Gibson Report also states that GET is one of the most common treatments for CFS and found 50-70% of patients improved somewhat with GET. However this level of efficacy was only found in several small trials and were not even compared with specialist medical care or pacing. Similarly, like with CBT, GET seems more effective in less severely affected patients than those who are more severely affected. Its role in helping severely disabled patients has not yet been properly established, but uncontrolled studies suggest it can help so long as it is tailored to the individual patient. However the Gibson Report also mentions the 25% ME Group findings that only 5% of their members found GET helpful and 95% found it unhelpful; and while the report used the word "unhelpful," the 25% ME Group insists that GET can also be dangerous/harmful. Many other patients who submitted personal evidence to the report's inquiry had similarly negative experiences of GET. Due to the potential risks of GET for CFS patients, the report stressed concern about GET treatment guidelines for CFS that lacked cautions about these risks, and even raised suggestions of checking for heart trouble before attempting GET. Again, both the report and the review acknowledges the need for more research. One small study done with 9 to 17 year olds showed that a rehabilitation program (involving graded activities/exercise) was successful, with 43% reporting a "complete resolution" of symptoms by the CDC/Fukuda definition.
Similar/Related Treatments
* Self-controlled rest and exercise, "pacing": "Pacing" is being advocated by many patients as one of the few really effective means of minimising homeostatic disequilibrium. The principles involve acceptance of the patient's limitations (by both the patient and any coaches), awareness of the early signals of deterioration e.g. increased cognitive difficulties, pain, clumsiness, muscle weakness, respiratory problems; and stopping exercise/activity before exceeding limitation or "crashing." A good rule of thumb is to never exert more than 70% of capacity. An understanding nurse, doctor or physical therapist may be of help.
* Other exercise: A few patients find health benefits and pain relief from gentle stretching, non-aerobic exercise, and gentle activity. More able persons may find gentle yoga, walking, or t'ai chi to be beneficial. Water-borne exercise and swimming is particularly beneficial for some CFS sufferers. Exercise for the severely affected or those who cannot manage the exercises can be detrimental to their health and should be avoided.
Cautions
Delayed onset of symptoms, unforseen demands ("spilled milk,") poorly controlled or treated symptoms and inadequate social/personal caregiving for the severely affected, ensure great care is required to avoid exertional relapses, even without official programs. Cognitive, emotional and stress demands also detract from physical activity capability. The criteria for exercise intolerance is generally considered usually at a low level. The distinction between "exercise" and "activity" sometimes made is false and arbitrary, especially for the severely affected: even modestly sustainable activity can become temporarily or permanently unsustainable if over repeated and for those at their activity ceiling, only very trivial additional or cumulative activity may be sufficient to cause relapse.
Medications
* Antidepressants: Antidepressants are often prescribed to CFS patients. It must be pointed out that some antidepressants can exacerbate symptoms, especially in the first few weeks of starting a new drug, and can induce muscle weakness, sleep-waking dysfunction and cardiac arrythmias, amongst other negative side effects. Some sufferers cannot tolerate any antidepressants at all, but that is true of normal controls taking antidepressants as well.
Although CFS patients may not be suffering from any distinct Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnoses indicating a depressive disorder, similarities have been seen in brain chemistry between those with depression or those with CFS, specifically in the anterior cingulate cortex and frontal cortex as well as reduced blood flow (cerebral hypoperfusion) in gray matter as seen on SPECT imaging. The pattern found in CFS via SPECT is different from what one would see with normal controls or patients with depression, but CFS patients have been found to have increased perfusion in the left thalamus compared to patients with depression. Changes have also been seen in reticular activating system (RAS) in CFS patients by SPECT. The RAS controls circadian rhythm, the sleep-wake cycle, which Tricyclics are often used to help regulate.
Recent studies show pro-inflammatory cytokine processes take place during somatic and psychosomatic disease including both depression and CFS, and is possible that symptoms manifest in CFS can attenuated by pharmacological affect of antidepressants on the immune system.
Studies also show that the chronic secretion of stress hormones as a result of disease, including somatic infections or autoimmune syndromes may reduce the affect of neurotransmitters or other receptors in the brain by cell-mediated pro-inflammatory pathways, thereby leading to the dysregulation of neurohormones. Recent studies indicate a reduction of 5-HT transporter (serotonin transporter) and raised levels of tryptophan (a serotonin precursor) in many CFS patients which may contribute to fatigue and cognitive disturbances.
Antidepressants acting on serotonin, norepinephrine and dopamine receptors have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). IL-6 has been demonstrated in CFS, and is a singaling pathway inducer of fatigue. IL-6 has been shown to cause cognitive problems in a variety of diseases.
Antidepressants have also been shown to suppress TH1 (T helper cell) upregulation. Some advances have also been achieved in the field of Hypothalamic-pituitary-adrenal axis (HPA-axis) modulation by antidepressants. The role of HPA-axis in CFS has still to be determined as data has been mixed. Studies have shown patients with CFS have demonstrated subtle alterations in HPA axis activity characterized by reduced Adrenocorticotropic hormone (ACTH) over a full circadian cycle and reduced levels during the usual morning physiological peak ACTH secretion. Other studies argue there is no HPA-axis change in CFS patients.
These studies warrant further investigation for antidepressants for use in a psycho-neuroimmunological approach which may be required for optimal pharmacotherapy in CFS. Future antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.The culmination of these studies purport antidepressants can be useful in non-depressed patients.
Overall, studies for use of antidepressants in CFS thus been performed has been mixed. Some studies have shown a reduction in symptoms with MAOI's, Tricyclics, SSRI and SNRI use. Some studies have shown no improvement.
* Autonomic nervous system stimulants: Drugs such as atomoxetine (Strattera®), which stimulate the autonomic nervous system, appear to have positive effects in some people with CFS 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 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, but has not been properly studied. A small study suggested that long-term treatment with modafinil may not be beneficial for CFS patients.
* Hormones: 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 have demonstrated positive results,[125] but other studies have shown little benefit from cortisol itself. 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. As Hypothalamic-pituitary-adrenal axis (HPA axis) dysfunction seems to be implicated in CFS, standard thyroid tests (including TSH) may not produce accurate results[citation needed]. Therefore, a short trial of either T3, T4, or a combination supplementation may be warranted if clinical signs seem to indicate possible hypothyroidism.
* Immune enhancers: 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 patients in trials as early as 1993-1994; more recently, trials with valganciclovir, an oral prodrug for ganciclovir, have produced similar positive results. The antiviral drug Ampligen also produced extremely positive results in clinical trials as early as 1991; however, was stalled in the FDA approval process for a number of years.
Patients with immunoglobulin deficiencies can be helped with infusions of intravenous gammaglobulin (IVIG).
* Mito cocktail: Given that the symptoms of CFS 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.
* Detoxifiers: Various detoxification agents are often advocated, from simple intestinal purgatives to "liver cleanses" to various types of chelating agents for the removal of mercury and other heavy metals.
* Sleep aids: Sleep aids may be prescribed when a patient complains of poor or irregular sleep, or excessive fatigue. Some patients find sleep aids, whether over-the-counter or prescription, to help greatly in maintaining a sleep cycle or getting "better", more restful sleep. As with all CNS acting drugs on ME/CFS, cautious dosage ramping is required and it may be necessary to try several drugs in order to find one which is tolerable.
* Pain relievers: 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 ME/CFS, 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.
* Antibiotics are commonly used to treat Lyme disease, sinusitis and other bacterial infections. These infections can be hard to eradicate, so often when an antibiotic cure fails it is claimed that the duration of treatment was insufficient or the wrong antibiotic was used. 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 penicillins are reported to be of significant (albeit temporary) effect 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 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 controversial.
* Antifungals: Antifungal drugs, specifically of the azole class, are used to treat yeast and fungus infections. Proponents of the yeast hypothesis for CFS claim, however, that the drugs are largely useless unless combined with a low-carbohydrate diet that effectively "starves" the fungus at the same time. Research studies have shown the contrary.
* Antivirals: A recent study found Valganciclovir effective in treating and possibly curing CFS.
Other medical treatments
* Allergy identification and treatment: In cases where CFS-like symptoms may be being caused by gluten intolerance, celiac disease, or chronic sinusitis, allergy testing, treatments, or elimination diets may prove beneficial. Since some CFS patients show decreased immune response or symptoms of MLS, pre-existing mild allergies may increase to harmful levels after CFS onset. Some studies suggest that a form of CFS may be triggered by a rare reaction to dental metals. Tests in Sweden showed that 76% of CFS patients who tested positive to metal allergy and swapped metal fillings for ceramic substitute achieved partial or full health improvement. Metal allergy can be detected by a blood test named MELISA.
* Dental cleanup: Some individuals suffering from CFS have reported a major reduction of symptoms and improvement in health after the removal of teeth with root canals. Cavitation surgery to clean up the sockets of sites where the periodontal ligament was not removed after a tooth extraction has also been helpful to some.
* Surgery: For Chiari malformation and some other disorders (e.g., thoracic outlet syndrome) that are occasionally blamed for CFS symptoms, surgery to release trapped nerves or otherwise correct neurological problems may be helpful, if manual therapies such as Chiropractic have not enjoyed any success.
Nutritional supplementation and dietary modification
* Magnesium: In a small study, supplementation with oral magnesium tablets improved symptoms in those people with CFS who previously had been diagnosed with low magnesium levels, although in this study additional magnesium injections were necessary in some patients. Conversely, other researchers reported no evidence of magnesium deficiency in people with CFS. The reason for this discrepancy remains unclear. If people with CFS do consider magnesium supplementation, they should have their magnesium status checked by a physician before beginning a regimen of supplementation. It is possible that only people with a magnesium deficiency may benefit from this therapy. Some sufferers find Magnesium malate 200 to 300 mg per day relieves some of the pain and can help with sleep problems as well. Magnesium is used in the enzymatic conversion of food to energy in the Krebs cycle, and can help reduce muscle fatigue in some cases.
* Alpha Lipoic Acid: 200 mg per day of Alpha Lipoic Acid may additionally be beneficial because it is both a fat and water soluble antioxidant, and also helps with insulin related hypoglycemic issues.
* Glutathione: When the body is unable to properly detoxify itself, inflammatory substances like lactic acid, and phosphates can build up in the fascia and at the neuromuscular junctions causing the muscle pain and trigger point tenderness that are diagnostic of fibromyalgia/cfids. In addition, there is usually a depletion of brain chemicals called neurotransmitters that can give rise to brainfog, depression/anxiety, and which can lower the pain threshold so that pain signals are amplified. By restoring intracellular glutathione in the liver and within the immune system, the body is able to mobilize and break down toxins for elimination by the liver and kidneys, and bring the immune disregulation back into a more normal function. Glutathione is also a very powerful antioxidant with the ability to restore other antioxidants that have been reduced in the battle against the severe oxidative stress that usually accompanies these illnesses. Glutathione functions as a three pronged attack against the underlying disease process, serving to gradually normalize immune and neurological function. Increasing glutathione can be accomplished with intravenous infusions of glutathione, through oral supplementation with N-acetyl cystine (NAC), oral supplementation with the herb Milk Thistle, and through supplementation with bioactive (un-denatured) whey protein such as Immunocal, or Imuplus.
* L-Theanine: In addition to the central need to treat the underlying glutathione deficiency, several other supplements may be helpful in dealing with the pain and discomfort. Most folks with CFIDS/FIBRO complain of a very troubling cognitive dysfunction commonly called "Brainfog".[158] This may be one of the more frightening symptoms of CFIDS, actually mimicking Alzheimer's disease with acute short term memory problems and extreme difficulty in concentrating. The amino acid L-Theanine is helpful with brainfog/ irritability. L-Theanine is a natural amino acid found in green tea leaves during the spring growing season and seems to act as a precursor for the neurotransmitters dopamine, and norepinephrine, which are brain chemicals directly related to cognitive function. Some research suggests that 200 to 300 mg of L-Theanine several times a day may be beneficial in restoring full cognitive function. L- Theanine has an extremely low toxicity, and doesn't pose the addictive, or tolerance potential of some of the pharmaceuticals frequently prescribed to treat this problem..
* Passion Flower: The herb Passion flower tincture may be helpful in diminishing the muscle pain, and insomnia, and depression that can be an ongoing challenge for folks with CFIDS/Fibro.
Other
* Chiropractic: Whilst this is not a therapy primarily for the treatment of Chronic Fatigue Syndrome, it may help reduce the Dysautonomia where it has been triggered by altered extrapyramidal reflexes in the grey matter of the spinal cord, known as facilitation. Facilitation is a common result of a spinal subluxation, where the joints of the neck become 'locked,' and as such, the muscles of the spinal column cannot move the joints. The resultant immobility induces muscle and nerve 'atrophy,' decreasing their function. If the facilitation is present in the upper spinal cord, this may predispose patients to dysautonomia, as major components of the autonomic nervous system are located nearby.
* Lifestyle Adjustments: Many CFS authorities recommend making use of medical treatments where appropriate, but focusing on minimizing symptoms through lifestyle adjustments such as pacing, control of stress, and good support. Importantly, acceptance rather than "fighting" to be as healthy as the patient was before CFS onset will lead to less frustration and fewer relapses. Adjustments to daily living -- working less, making dietary changes, and more efficient use of time and energy -- can improve a patient's outlook; but, more importantly, relieve some symptoms as well. Due to the nature of ME/CFS in finding its own "exertional level", such adjustments if resisted, tend to become enforced. This may also include the use of assistive devices; many CFS patients find that a cane, walker, wheelchair, mobility scooter or power chair will greatly improve their ability to perform tasks. Simpler assistive devices -- a kitchen stool rather than standing at the stove, a phone programmed to remember phone numbers -- can also greatly improve the quality of life for CFS patients.
* Location: Some CFS patients find relief in moving to warmer climes. This is a difficult and expensive treatment option, not always feasible or available.
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Important notice:
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qualified health provider with any questions you may have regarding a medical condition.
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