Potential treatments

There are no drug therapies for myalgic encephalomyelitis / chronic fatigue syndrome
(ME/CFS) approved by the regulatory bodies in any country (except in Argentina, where the antiviral drug Ampligen is licensed for severe ME/CFS; this drug is not licensed in the US or Europe, but is available under a limited compassionate use scheme in the US).

Thus ME/CFS is one of the few diseases for which there are generally no licensed
pharmaceutical treatments.

However, some ME/CFS specialist doctors have developed their own treatments, and these can sometimes result in major improvements in health. By a major improvement, we mean one which takes a patient up at least one level on the 5-point ME/CFS scale of very severe, severe, moderate, mild, remission. More often though, the improvements attained are more minor.

There are also treatments available for some of the comorbid conditions that often come along with ME/CFS, conditions such as SIBO, IBS, POTS, NMH, MCAS, allergies, low T3 syndrome, anxiety and depression. Treating these comorbid illnesses can often lead to improvements in health. 

Unfortunately treatments with a track record of helping for ME/CFS are usually only effective for a small percentage of patients, as what works for one patient often has no benefit for the next. So when trying out the available ME/CFS therapies, whether any help is a matter of luck.

ME/CFS specialists are few and far between, so many ME/CFS patients experiment with treatments under their own steam, and/or with the help of their primary care physician.



The following ME/CFS treatments have a track record of helping some patients, and many of these therapies are employed by leading ME/CFS doctors.

General ME/CFS Treatments

Low-Dose Naltrexone

The low-dose naltrexone (LDN) protocol is widely tried by ME/CFS patients. The protocol involves taking low doses of the oral drug naltrexone (typically 3 to 4.5 mg) daily before bed.

Vitamin B12 Injections

Some ME/CFS patients find vitamin B12 injections reduce brain fog and fatigue. Injected doses of around 500 to 1000 mcg are used; the forms of vitamin B12 typically employed are methylcobalamin or hydroxocobalamin. A more convenient alternative to injections is the transdermal B12 oil developed by Dr Greg Russell-Jones, which use a micro-emulsion permeation enhancer to draw B12 through the skin in amounts similar to injected doses. High dose B12 can cause transient low blood potassium (hypokalaemia) a few hours after injecting the B12, which may manifest as tiredness. This can be prevented by taking around 300 mg of oral potassium. 

Low-Dose Abilify

Abilify (aripiprazole) is a dopamine system stabiliser drug and third generation antipsychotic. In low doses of 0.2 to 2.0 mg daily, Abilify can rapidly improve ME/CFS. However, in some patients the benefits mysteriously wear off and permanently vanish after some weeks; though in other patients, the positive effects are maintained long term. 

High-Dose Vitamin B1

Some ME/CFS patients observe substantial improvements in fatigue, PEM and brain fog when taking vitamin B1 (thiamine) in high doses of 200 to 1500 mg daily. 

Nimodipine

Nimodipine is calcium channel blocker drug that increases blood flow to the brain. Dr David Mason Brown finds it helps 20% of ME/CFS patients very quickly, and another 20% over six months. The Mason Brown protocol begins with 7.5 mg per day, with the dose slowly increased to tolerance, up to a maximum of 30 mg four times a day.

Pyridostigmine

Some ME/CFS patients find pyridostigmine (Mestinon) at doses up to 45 mg three times daily greatly reduces or stops their PEM, and generally improves their ME/CFS. Other treatments which may mitigate PEM listed in this PEM busters thread. 

Antiviral and Immune-Boosting ME/CFS Treatments

The following antiviral treatments target specific viruses that are commonly found in ME/CFS patients as active infections. To determine which viruses you have as an active infection, you may like to refer to the viral testing procedures in this MEpedia article. 

Oxymatrine

Oxymatrine is an extract from the Chinese herb Sophora flavescens (Ku Shen) which boosts Th1 antiviral immunity (see this study). Dr John Chia pioneered the oxymatrine treatment of ME/CFS involving active coxsackievirus B infections. Dr Chia formulated his own oxymatrine product called Equilibrant, but there is also the White Tiger brand of oxymatrine. Most responders to oxymatrine see improvements after 4 to 6 weeks, says Dr Chia. A dose of 400 to 600 mg daily (taken in divided doses)  is suggested. Oxymatrine may not be suitable for those with autoimmune tendencies (as there is a risk of triggering further autoimmunity), nor for people with seizure disorders, and is best avoided in pregnancy.

Valtrex

Valtrex (valacyclovir) is an antiviral drug effective against Epstein-Barr virus, varicella zoster virus and herpes simplex. Dr A. Martin Lerner used Valtrex at 1,000 mg four times daily to treat ME/CFS patients with active EBV infections. Progress however is slow, with improvements only beginning to manifest at around 3 to 4 months. For those who cannot tolerate Valtrex, Famvir can be used instead. 



Valcyte

Valcyte (valganciclovir) is an antiviral drug effective against Epstein-Barr virus, HHV-6, cytomegalovirus, varicella zoster virus and herpes simplex. Dr A. Martin Lerner used Valcyte 450 mg three times daily daily to treat ME/CFS patients with active HHV-6 or cytomegalovirus infections. Valcyte was also used to treat herpesvirus ME/CFS by Prof Jose Montoya when he was working at the Stanford ME/CFS Initiative. 

Tenofovir

Tenofovir is an antiviral and immunomodulatory immune-boosting drug used to treat HIV and hepatitis B virus. It also has some antiviral effects against Epstein-Barr virus, and against the human endogenous retrovirus (HERV) infections sometimes found in ME/CFS. Tenofovir at 300 mg daily has been used off-label to treat coxsackievirus B infections in ME/CFS; it may work for CVB via its immunomodulatory effects. Dr John Chia says tenofovir works for less than a third of his patients.

Articles on Antivirals and Immunomodulators 

Treatments for Brain Fog and Fatigue

Piracetam

Piracetam is a non-stimulant nootropic drug which enhances cognition via its action on various neurotransmitter systems (including cholinergic and glutamatergic systems). It is neuroprotective, improves neuroplasticity, improves microcirculation, and increases red blood cell flexibility and deformability. Its effects arise in part from its restoration of cell membrane fluidity. Piracetam can be bought as a supplement in many countries. Doses of 800 to 2400 mg improve cognition and can help counter the brain fog of ME/CFS. Some patients report a degree of emotional blunting with piracetam, but this can be minimised by taking doses at the lower end of the dose range. 

Ritalin 

Ritalin (methylphenidate) is a stimulant drug that at a dose of 10 mg twice daily can help ME/CFS brain fog and fatigue. Ritalin may stimulate mitochondrial functioning.

Modafinil

Modafinil (Provigil) is a non-stimulant drug which has stimulant-like effects, promoting wakefulness, alertness and improved cognition.

Phoenix Rising Articles on Energy Boosting 

Miscellaneous Treatments 

Low-dose amantadine — Dr David Bell found amantadine 25 to 50 mg twice daily can reduce fatigue in ME/CFS, but says higher doses may exacerbate symptoms. Search PR for amantadine

Very low-dose amisulpride — A dose of 25 mg twice daily reduces fatigue and somatic symptoms, a study found. Search PR for amisulpride

Moclobemide —  This is a mood-boosting drug that increases dopamine levels in the brain. A study found 450 mg daily increases subjective feelings of energy in ME/CFS. Search PR for moclobemide

Spironolactone — A study found spironolactone 25 mg daily resulted in 31% of EBV ME/CFS patients achieving full remission, and 69% observing improvements in their symptoms. Search PR for spironolactone

Low-dose rapamycin — Activates autophagy (a cellular cleanup process that improves mitochondrial functioning) and inhibits inflammation by preventing T-cells and B-cells from activating. Anecdotally, some ME/CFS patients report feeling better on rapamycin at 6 mg once weekly. Search PR for rapamycin

Ketogenic diet — This high-fat, low carbohydrate diet is used for treatment-resistant epilepsy, and can be beneficial for ME/CFS. The diet shifts the body away from using sugars for energy, and towards using ketones for fuel. Search PR for ketogenic diet

Methylation protocol — Based on a hypothesis that insufficient methylation drives ME/CFS, the methylation protocol uses a supplement regimen to boost methylation. The daily regimen includes: vitamin B12 hydroxocobalamin 2000 mcg sublingual, methylfolate 200 mcg, folinic acid 200 mcg, lecithin 1200 mg, and a multivitamin/multimineral tablet. Search PR for the methylation protocol

Helminth therapy — Adding helminths to intestinal flora modulates the immune response and thereby may ameliorate some chronic diseases. Anecdotally, helminth therapy can occasionally result in major improvements in ME/CFS. Search PR for helminth therapy

Interferon therapy — This antiviral immunomodulator often results in dramatic improvements in enterovirus-associated ME/CFS after a few month’s therapy (eg bedbound patients returning to work). But relapse typically occurs within a year. Repeat courses of interferon are not the answer to the relapse problem, because the body eventually starts producing antibodies to injected interferon, which neutralises its effect. Search PR for interferon

Ampligen — This is an antiviral immunomodulator effective for enterovirus or herpesvirus ME/CFS. Ampligen (rintatolimod) is an interferon inducer which stimulates the intracellular immune system to fight viruses. Studies demonstrate efficacy for ME/CFS. It is licensed to treat severe ME/CFS in Argentina, but is not licensed in the US or Europe (though has limited US availability under a compassionate release scheme). Search PR for Ampligen

Intravenous immunoglobulin (IVIG) — This expensive treatment has had mixed results, but can bring benefits. Dr Chia finds 20% or so of his ME/CFS patients respond to IVIG, and finds low-dose IVIG is often better than high-dose. He says for ME/CFS patients with severe pain, the pain will go away within 24 hours of an IVIG infusion. Search PR for IVIG

Comorbid Disease Treatments 

ME/CFS patients often suffer various comorbid conditions alongside their ME/CFS, conditions such as POTS, NMH, OH, SIBO, IBS, allergies, food intolerances, MCAS, low T3 syndrome, anxiety and depression. These comorbid conditions are generally more treatable than ME/CFS itself, and thus there is scope to improve health by addressing any comorbidities. 

Orthostatic intolerance (OI) — ME/CFS patients often have OI conditions such as postural orthostatic tachycardia syndrome (POTS), neurally mediated hypotension (NMH) and orthostatic hypotension (OH). These are all conditions in which symptoms appear in an upright posture. Such symptoms on standing include: increased heart rate, headache, dizziness, feeling faint, lightheadedness, abdominal discomfort, nausea, sweating, tremor, anxiety, palpitations, fatigue, and exercise intolerance. There are several drugs which can treat OI, as well as non-pharmacological approaches such as wearing compression garments to counter blood pooling in the legs and abdomen, and increasing salt intake to boost blood volume. Search PR for POTS, NMH and OH

Small intestine bacterial overgrowth (SIBO) — This is an overgrowth of bacteria in the small intestine, which can cause the symptoms of fatigue, brain fog, bloating, and others. One study found 77% of ME/CFS patients have SIBO, and found SIBO treatment led to improvements in ME/CFS symptoms. Many treatment options are available, though once treated, it is difficult to prevent SIBO from returning (prokinetic drugs can help prevent recurrence). Search PR for SIBO

Irritable bowel syndrome (IBS) — This is a common comorbid condition in ME/CFS. Symptoms may include: abdominal pain and bloating; bouts of diarrhoea and/or constipation. A two-week course of the antibiotic rifaximin can put IBS into remission for 3 months, as study found. For symptomatic relief of IBS, peppermint oil capsules and probiotics can be beneficial; and for IBS with diarrhoea (IBS-D) the over-the-counter drug loperamide can help. The low FODMAPs diet can also be effective. Search PR for IBS

Allergies and food intolerance — Allergies and food intolerances are commonly found in ME/CFS, and may exacerbate ME/CFS symptoms. Allergies and food intolerances are best controlled by avoiding exposure to the allergens and foods you are sensitive to. Antihistamines can be used to treat the symptoms of allergy. For severe allergies, immunotherapy may help desensitise the reaction to the allergens. Search PR for allergy and food intolerance

Mast cell activation syndrome (MCAS) — MCAS is an allergy-like condition, but is not the same as a classical allergy. MCAS is hard to diagnose, as its symptoms and the organs it affects vary from one person to the next. A list of MCAS symptoms here. Diagnostic criteria for MCAS detailed here and here. MCAS can be treated with a combination of H1 antihistamines such as hydroxyzine or cetirizine, H2 antihistamines such as ranitidine or famotidine, mast cell stabilisers such as NasalCrom, GastroCrom or ketotifen, and leukotriene inhibitors such as montelukast or zafirlukast. Search PR for MCAS

Low T3 syndrome — The study found about 16% of ME/CFS patients have low T3 syndrome. This is where levels of the thyroid hormone triiodothyronine (T3) are low, and levels of reverse T3 are high, even though thyroid stimulating hormone (TSH) levels are normal. This is a subclinical form of hypothyroidism, and it can worsen ME/CFS symptoms, but may not be detected by standard thyroid hormone tests, which usually only check TSH and thyroxine (T4). The study suggests taking supplemental T3 as the drug liothyronine may help. Search PR for thyroid issues

Anxiety — Nearly a third of ME/CFS patients suffer from an anxiety disorder such as generalised anxiety disorder (GAD) or panic disorder (PD) according to a study. Since ME/CFS is a neurological disease which can affect the brain, this anxiety likely has physiological causes. Standard treatment for anxiety involves SSRI drugs such as escitalopram or benzodiazepines such as clonazepam. One study found probiotics reduce anxiety symptoms in ME/CFS. Many patients on Phoenix Rising have found N-acetyl glucosamine is highly effective for anxiety. Search PR for anxiety

Depression — Around a third of ME/CFS patients suffer depression alongside their ME/CFS, according to a study. As ME/CFS is a neurological condition which can affect the brain, this depression may have physiological causes. Standard treatments for depression include SSRIs like fluoxetine (Prozac), TCAs like amitriptyline, and MAOIs like moclobemide. Studies have demonstrated the following supplements have antidepressant effects: saffron, 5-HTP,  St John’s Wort and omega-3 fatty acids. Search PR for depression and antidepressants

ME/CFS Recovery and Improvement Stories

The first post in this thread lists over 120 ME/CFS recovery and improvement stories via various treatments: List of ME/CFS Recovery and Improvement Stories  

Warning about GET and CBT

Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) have been used to treat ME/CFS, but they are often ineffectual, and can be damaging to health. GET may be OK for milder ME/CFS patients, but can be dangerous for severe patients, for whom even the tiniest amount of exercise can trigger PEM. 

A patient survey by MEAction on GET and CBT treatment for ME/CFS found that:

“Over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration. Following roughly the same pattern as impact on physical health, a majority (53%) of those undergoing GET experienced a deterioration in their mental health. This increased to 62.9% when the respondent had also undergone CBT”.

Disclaimer

The treatments detailed on this page are for information purposes only, and should not be considered medical advice. The material on this website has been compiled by laypeople, and Phoenix Rising does not guarantee the accuracy or completeness of the content. Phoenix Rising accepts no liability to any person in relation to the content: it is the reader’s sole responsibility to evaluate the information and to seek advice from a medical professional or other professional.

 

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