Treatments for Myalgic Encephalomyelitis


A summary for sufferers



No treatment has been proven to benefit patients with M.E. in large randomized controlled trials that have been replicated by other investigators in other populations of patients. However, many small-scale clinical trials have revealed potential benefits from some drugs and supplements, mostly in terms of symptomatic treatment. As someone who has benefitted consistently over several years from one such treatment, I hope that a summary of treatment options may be of help to someone else.

Del Kennedy





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Mycoplasma Treatments


Doxycycline, Azithromycin or Erythromycin

The role of mycoplasma infections in M.E. is presently a grey area. The hypothesis is that mycoplasmas infect immune-system cells, causing these transcriptional & translational problems, killing some cells, causing immune dysfunction and activating the T-cells.

It is possible that an already compromised immune system may be particularly vulnerable to this class of microbe. Many physicians consider it an unlikely candidate as the primary cause of M.E., but it may excacerbate symptoms.

The best treatment is doxycycline. Mycoplasmas take three months at least to eradicate. If you have a co-operative G.P., it could be worth a try, but don't forget the need to replace your gut flora with probiotics immediately afterwards.




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Ampligen

Ampligen is a synthetic nucleic acid product that stimulates the production of interferons, a family of immune response modifiers that are also known to have anti-viral activity. It may also regulate the 2,5-RNase-L antiviral pathway.

Plenty of information on the treatment of M.E. with Ampligen is already online at Deborah Shearer's site




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Neurontin


If your system can tolerate it, Neurontin can often restore cognitive function to a surprising degree.

Dr J. W. Seastrunk, a psychiatrist who worked with brain injuries for 30 years, has pioneered the use of this drug as a treatment for M.E.. In large doses, it does appear to be capable of producing a very marked improvement even in severe sufferers.

Neurontin was originally developed as an antispasmodic (muscle relaxant). But it also helps prevent neurones from misfiring. It is not yet understood exactly how it does this.

It is used in doses up to 6,000 mg per day, and is available on prescription. Some G.P.'s are already prescribing it for the treatment of M.E., though most take a lot of persuading.




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Colostrum


In studies performed by the Wisconsin Viral Research Group, single random blood specimens from ME sufferers were obtained from clinics around the country, and 39 percent of the patients turned out to be positive for active HHV-6. Significantly, none of the blood samples from normal control subjects were positive, demonstrating that active HHV-6 infections in the blood are highly abnormal.

In 1999, trials were conducted on ME patients who were positive for active HHV-6 infection using a modified version of a treatment looked at earlier, using bovine colostrum. The treatment was run on 100 patients, half of which received a placebo. Statistically significant results were obtained, suggesting that Colostrum is a potential treatment for ME

Colostrum is the first milk from a cow that is present for 24-48 hours after the calf is born, and contains numerous immune-modulating components (antibodies, immune cells, transfer factors, and other immune-regulating proteins). This milk is very important to establish and maintain the immune system of a newborn.

To make a formulation helpful to ME sufferers, a company called Immunity Today uses a process in which expectant cows are injected with a form of the HHV-6 virus. Specific antibodies are thus included in the colostrum that the new-born calf receives. Their product is called Tranfer Factor Formula 560.




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Gamma Immunoglobulin (IgG)


IgG contains antibodies to a broad range of common infectious agents and 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 absense of immune globulin. Its use with ME patients remains experimental; basically, there have been two papers that say it is useless and three papers that say it's helpful. If all else fails, and someone is very sick then they might get to try this. Privately, it is very expensive, from 500- 750 a dose and is given monthly.




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Interferon A


Low-dose oral IFN-a is currently being studied in clinical trials for ME, and some physicians are already using low-dose oral IFN-a as a treatment. All the information available at this point seems to indicate that low-dose oral IFN-a could cause significant improvement in some ME patients.

Low-dose oral IFN-a is available now for prescription, but the first sufferer to get it prescribed by an NHS GP in the UK should get a medal!




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NMH Treatments


A substantial fraction of ME sufferers have modest abnormalities of the autonomic nervous system, leading to neurally mediated hypotension (NMH). Dizziness and loss of balance are common, but the classic symptom of NMH is feeling very faint when you stand up.

One way of taking the edge off such symptoms is to maintain a higher blood volume by drinking a lot of water, say 10 glasses a day, with 2-6 grams of extra salt (available in tablet form from any chemist).

If you do have NMH, then Florinef (Fludrocortisone) may also be of help. It causes the body to retain more of the salt and the water, so it helps to build the blood pressure.

Be careful about blood pressure though. If try Florinef and you generally have normal or high blood pressure, check it at least weekly to make sure you are not getting it too high.




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Armour Thyroid

'Proinflammatory' cytokines raise the temperature. So if you're in that group of patients who frequently experience low-grade fever, that's probably because of these proinflammatory cytokines. Thyroid medication is not suitable for such patients.

However, there is another group of patients where endocrine dysfunction predominates, and whose temperature tends to be low. For these patients, thyroid medication can be of help. Some practitioners prefer to use natural thyroid (Armour thyroid).

If you take your temperature when quite at rest, i.e. first thing in the morning, it should be somewhere between 98 F and 98.6 F. If it is not, and is below 97.8 F it is considered a positive indication. Frequently, it is really very low, even below 96 C, if there is an adrenal/thyroid deficiency.

To do it really well, you should place the thermometer for ten minutes in the axilla (armpit) immediately on waking.

Thyroid supplementation should be used in a carefully increasing dose until the desired effect is achieved. Remember though, that if your body temperature's normal or high, it's probably not going to work. And there are other reasons for having a low temperature too (such as decreased ATP production), so (as will all treatments) it will not help everyone.




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Myalgia Treatments


Note : Myalgic Encephalomyelitis has, as the name suggests, both myalgic (muscular) and encephalitic (neurological) components. What follows is drawn from both ME and FMS ('Fibromyalgia Syndrome') research, in the belief that the aetiologies underlying these diagnostic categories are closely related.

Magnesium Sulfate

Just 2 cc of 50% magnesium sulfate once or twice a week can help ME sufferers with a myalgic emphasis. The problem with magnesium injections is that they burn like fire, so sometimes the treatment is worse than the disease itself!

Oxytocin

Oxytocin is an anterior pituitary hormone which increases blood flow to the eye, to the brain, and to muscle. This tends to make the skin feel warmer and the body feel warmer. Some sufferers report thinking more clearly and seeing more clearly.

Approximately one-fifth of ME sufferers have a good response to oxytocin after failing to respond to other treatments.

S-Adenosylmethionine

This precursor of adenosine has been shown to be an effective treatment for predominantly myalgic ME sufferers in three double blind studies. It works by correcting defects in adenosine metabolism.

Gabapentin

Many ME sufferers report markedly reduced myalgia and an increase in energy after the first dose. It probably works by indirectly increasing the release of GABA.




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Enada (NADH)


NADH is known to trigger energy production by generating ATP (adenosine triphosphate) which stores energy in cells. If cellular levels of NADH are depleted, brain and muscle cells lose their ability to function effectively. The theory is that as NADH levels rise in the body, the cells become more energised, making the body feel stronger and more vitalised.

A good review of this promising treatment (available now without prescription) is already online at the about.com website




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DHEA


Most ME sufferers show suppression of the hypothalamic pituitary adrenal axis (HPA axis). As a result of adrenal suppression, sufferers tend to put out less cortisol, and also less of another adrenal hormone called DHEA.

It seems that, if you try to replace the cortisol, it doesn't work. But replacing the DHEA seems to bring about a small improvement in some sufferers.

The dose of DHEA is 25-50 mg for women, 50-100 mg for men, daily. It is best taken in the morning. DHEA is freely available without prescription.




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Testosterone Patches


The use of these treatments is based on the evidence of dysfunction of the HPA axis. Where this is suspected, female ME sufferers can have very depressed levels of testosterone, and this can be treated with these patches at doses of 2.5-7.5 mg daily.




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Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)


The majority of patients with ME experience myalgias, arthralgias, headaches, and migratory paresthesias. For some, the pain is the most debilitating aspect of their illness. In most patients, nonsteroidal anti-inflammatory drugs (NSAIDs) seem to provide a measure of relief. The less expensive NSAIDs, eg. ibuprofen, seem to be just as effective as the more expensive ones.




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Candida Treatments


The yeast called Candida Albicans causes all sorts of problems for ME sufferers, including irritable bowel syndrome (diarrhoea and chronic flatulence) and 'leaky gut syndrome'. The latter can lead to severe encephalitic reactions after a meal and to food intolerances. To find out all about Candidiasis in ME, click here.

Fortunately, candidiasis can easily be resolved by appropriate treatment.

Diflucan is very effective for candidiasis, with or without Nystatin. Candida overgrowth occurs in the gut very frequently, so you may need to repeat this treatment regularly.

In the very worst cases of colitis and imbalanced gut flora, it is sometimes necessary to use a broad-spectrum antibiotic as well as Nystatin/Diflucan to clear the gut of its present occupants, and then immediately replace them with a course of probiotics.




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Opthalmic Drops


You may have read about SPECT scan findings showing decreased profusion in the frontal lobes of the brain. Vasocon is a simple vasal constrictor of the eye, but it causes a reflex vasodilation in the frontal lobes. A safe therapy that can significantly improve congnitive function in the short-term.

Naphazoline eye-drops (an alpha-adrenergic) are also reported to be of help.




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Guaifenesin


Guaifenesin is a common over-the-counter expectorant. It has been around for about seventy years, first as guaiacum and then as guaiacolate, and for about twenty years as guaifenesin. Guaifenesin seems to allow the kidneys to eliminate something harmful that has been stored in the body. One study found that with guaifenesin therapy, there was an increased excretion of phosphates and oxalates.

Guaifenesin is safe and even available in pediatric dosages. It is also sold as a prescription medication available in 600 mg caplets or capsules. It is important to ensure that there are no other medications mixed in with the guaifenesin, as there often are in cough and cold formulations.

A typical regimen is to start with 300 mg twice a day, and if there's no obvious change after one week, increase the dose to 600 mg twice a day for about a month.




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Vitamin B12 Injections


Although little controlled scientific research exists on the effectiveness of vitamin B-12 for the treatment of ME, many doctors and patients are trying this therapy. Two well-known ME researchers and clinicians, Dr. Paul Cheney and Dr. Charles Lapp, believe that it can be helpful for some patients in managing the symptoms of ME.

If you ask a G.P. for B12, s/he'll check your blood serum level and say it's normal. The stock method of measuring vitamin B12 levels is not going to reveal deficiencies of the coenzymes required for healthy neurological functioning, since it measures blood levels of vitamin B12 and not the Cerebro-Spinal Fluid level. It's the CSF level that's often extremely low in ME sufferers. This could be because B12 either doesn't get across the blood-brain barrier sucessfully, or else it's being consumed or destroyed at a phenomenal rate in the CNS.

Drs Cheney and Lapp reccommend a trial dose of 3000 mcg (three mg) 2 to 3 times per week. If there is no response by the end of two weeks, give up: this treatment either works for you, or it doesn't.

Interestingly, transport of vitamin B12 into the brain can be disturbed or prevented by heavy metals such as inorganic mercury (have any mercury amalgam fillings?), cadmium or lead. These affect the blood-brain barrier by causing leakage and restricting the active transport of nutrients.




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Sterinol


Recent research indicates that the health-promoting benefits of a plant-based diet may be due to the presence of plant-derived cholesterol analogs known as sterols and sterolins. These compounds, which are ubiquitous throughout the plant kingdom, appear to have important immuno-modulatory and anti- inflammatory activities in human and animal physiology.

Sterinol is commercially available by mail order; research abstracts are online here.




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Oralmat

Oralmat is a Rye sprout based product originally produced for the treatment of Asthma. It contains a gluten-free, activated extract of Secale cereale (rye) in which are found phytoestrogens, genistein, matairesinol, Beta 1,3 glucan, coenzyme Q10 and squalene. It is reputed to be effective as an immune enhancer in cases of flu, allergies and conditions of impaired immunity.

This treatment is mentioned here because of its reccommendation by AIDS sufferers as an effective immune modulator. It is pleasant tasting and the average user requires 3 drops under the tongue 2 to 3 times daily. It can also be administered to children over the age of 6. To order some, click here.




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Antidepressants


Tricyclics

Some of the most widely used treatments employed in the management of ME are sedating tricyclic antidepressant agents in low doses: amitriptyline or doxepin, 5 to 20 mg at bedtime. For unusually low doses, the liquid form of the medication is ideal.

Low-dose tricyclic agents have been proved efficacious in randomized trials of a similar illness (fibromyalgia) and in a number of sleep disorders. Many patients report that their sleep is less frequently interrupted and of better quality.

Interestingly, patients with concomitant depression do not report an improvement in the core symptoms of depression when given tricyclics in such low doses.

Readers should be warned that during the first week of therapy, even extremely low doses of tricyclics may cause them to feel groggy in the morning; this reaction is usually short-lived.

Others

Half or more of patients with ME (somewhat unsurprisingly) develop major depression in the months and years after the onset of their illness. Also, increasing synaptic strength may itself be of help in the symptomatic treatment of ME, as it is in other illness with neurological effects.

Tricyclic agents can rarely be tolerated in conventional antidepressant doses, but selective serotonin reuptake inhibitors are often better tolerated. Sertraline (Lustral), fluoxetine (Prozac), and paroxetine (Paxil) have been used the most.

Some clinicians have reported good results with the combined serotonin and norepinephrine uptake inhibitor venlafaxine (Effexor). However, the only randomized trial of antidepressant therapy in ME, which used fluoxetine, found no benefit in either the fatigue or depression. It is also worth reading the online article entitled "The Aftermath Of Prozac, Zoloft, Luvox, Fen-Phen, & Many Other Serotonergic Drugs" before deciding to try such treatments.




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Surgery


There is a controversial new theory that some patients diagnosed with chronic fatigue syndrome actually have a condition that can be treated with surgery.

Neurosurgeon Dr. Michael Rosner is treating patients with surgery on the basis that some patients with classic ME symptoms actually have one of two treatable conditions, called Arnold-Chiari syndrome and cervical spinal stenosis. These are both disorders where compressions of the spinal cord result in pain and weakness and often the earliest symptom is exhaustion.

Arnold-Chiari and spinal stenosis have been corrected with surgery for decades.

Although this approach to treating ME could be a solution for some sufferers, it is controversial, and there are many sceptics.




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Immunocal


The glutathione system appears to be significantly impaired in ME sufferers, and glutathione deficiency has an actively pro-viral effect. Immune-activation states can actually induce the activation of microbes in the presence of glutathione deficiency. And that might explain why ME sufferers show a lot of endogenous viral activation such as EBV, CMV, HHV6, mycoplasma incognitus, chlamydia pneumonia, candida, etc etc.

Immunocal is a weakly hydrolyzed whey protein concentrate that seems to affect the glutathione system in ME sufferers. Dr Paul Cheney has pioneered the use of this treatment. Click here for more information on Immunocal.




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Oxygen Therapy



Cheney's Oxygen therapy is based on the same glutathione-deficiency theory as his Immunocal therapy (see above). I would summarize his latest treatment if I could - but I think I'm going to have to admit my limitations! You can read all about it in Cheney's own words by clicking here.




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Anxiolytic Agents


Interestingly, benzodiazepines may actually help in treatment of immune system hyperactivity, which is responsible for many ME-related symptoms. Things like Klonopin and Temazepam block cytokines produced by reactivated T-cells, and indirectly stimulate the GABA receptor.

The problem is that their psychoactive action is addictive, although this does not necessarily undermine their apparent immunomodulating action.




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Bungee Jumping


My thanks to the world's most enthusiastic and devoted researcher into the treatment of ME - Dr Paul Cheney - for this marvellous quote :

"Rebound exercise was studied by NASA in the 1970s in regard to astronauts returning to earth from low-earth orbit... If you remember these astronauts, when they took them out of the capsule they had to drag them out vertically because they would faint on standing... NASA figured out that the best way to bring back the autonomic nerve system was to bounce. So they put them in these bungee cord contraptions and they just bounced them - this up and down motion sets a sinusoidal input into the brain and essentially regulates autonomic tone and improves the, quote, autonomic nervous system. Rebound exercise is the best form of exercise for [ME] patients."

Bungee jumping may be best combined with the use of Anxiolytic agents such as valium (20mg, ten minutes before each jump).




For an comprehensive online guide to ME, treatments (including supplementation, diet, herbal potions etc) click here



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