This list documents what I believe are some of the most effective CFS treatments based on studies, anecdotal reports and/or mechanisms of action. This list is ranked from 1 to 10 with 1 being a potential treatment for broad Oxford Criteria CFS and 10 being a possible treatment for Canadian Consensus Criteria ME/CFS. The increasing numbers of this list correlate with more stringent CFS criteria. Another way of interpreting the rankings on this list involves possible prioritisations of treatments. In other words, it is unlikely one would take treatments 9 or 10 if they hadn’t yet tried the first few treatments.
This list purposefully contains treatments that are low in side effects however some CFS patients may experience side effects as a result of some of the treatments. I have also tried to provide some basic information about each treatment. Thorough information (dosage, side effects, contraindications etc) about each treatment is available elsewhere on the internet.
1. Energy Revitalizing System: This formula contains over 50 minerals, vitamins and nutrients aimed at providing energy to the consumer. As opposed to taking in excess of 30 tablets per day, Energy Revitalizing System provides this equivalence in one formula. It contains a range of B-vitamins, the equitable contents of a multi-vitamin tablet and many amino acids. The amino acids include 500mg servings of L-Serine, an amino acid that Dr. Buttfield believes at doses increasing from 500mg to 2g should help 60% of CFS patients significantly. I believe that Energy Revitalizing System contains a combination of potentially helpful treatments. It is worth noting that despite the array of amino acids in this formula, L-Carnitine is not included. L-Carnitine has been shown to benefit some CFS patients according to several studies.
2. D-Ribose: D-Ribose may help the mitochondria keep the body’s cells supplied with energy. Dr. Myhill is an advocate of D-Ribose treatment as part of her mitochondrial treatments. A pilot study was performed in which 5grams of D-Ribose was consumed three times per day by 41 CFS and Fibromyalgia patients. 66% of patients experienced significant improvement while taking the D-Ribose. I won’t provide a critique of the cohort selection or study itself here however one must maintain a degree of scepticism pertaining to the study results.
3. Vitamin B12 Injections: Cyanocobalamin and Hydroxocobalamin are the two B12 forms utilised by CFS specialists. Intramuscular B12 injections generally involve a 1000mcg-5000mcg dose administered 1-5 days per week for a total of 15-30 injections. Despite having normal B12 levels as determined by a blood test, CFS patients often have low B12 levels in their brains. High B12 injectable doses are a method of ensuring that adequate levels of B12 cross the blood-brain barrier. B12 is also a scavenger of nitric oxide, a compound that may contribute to some patients CFS symptoms. A poll detailed that 50%-80% of Dr. Lapp’s CFS patients improved to some degree as a result of vitamin B12 injections. Some CFS patients that don’t respond to vitamin B12 injections will respond to folic or folinic acid.
4. Magnesium Injections: The standard procedure for magnesium injections involves magnesium sulphate (which requires a prescription) being administered intramuscularly 1gm/2mls weekly for 10 weeks. Approximately 70% of Dr. Myhill’s CFS patients improve based on this protocol. Oral thiamine may help the magnesium be absorbed by patient’s cells and a calcium supplement may aid avoidance of a mineral imbalance. Many CFS specialists believe that despite CFS patients having normal blood levels of magnesium, patients have low intracellular magnesium levels.
5. Inosine: Inosine is the active ingredient in the prescription medication ‘inosine pranobex.’ Inosine is available online without a prescription. A small study on Inosine’s prescription cousin, inosine pranobex found that it benefitted 6 out of 10 CFS patients after 28 weeks. Dr. Larry Sharp has labelled inosine pranobex “One of the safest, most cost effective and helpful drugs at our disposal.” It is an antiviral and immunomodulator. Dr. De Meirleir believes that the nutritional supplement inosine is as effective as the prescription version, inosine pranobex.
6. Oxymatrine: Oxymatrine is an antiviral derived from the Sophora plant. It is commonly used to treat Hepatitis B and is sometimes used in China as an anti-cancer drug. It is most effective in those CFS patients with an enterovirus. Dr. Chia performed a study that found that 52% of CFS patients’ illness improved after taking oxymatrine. This was in comparison to 2% of the placebo group improving. Dr. Chia has given the herb to over 350 CFS patients and has concluded that 52% show some degree of improvement. Due to concerns over the purity of some brands of oxymatrine, Dr. Chia produced his own form called Equilibrant. This product can be ordered online and contains oxymatrine in tandem with various immune modulators. I have written some more information about oxymatrine here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/03/oxymatrine/
7. Artesunate: Artesunate is an antiviral that is often used to treat malaria. Studies have shown that is has the ability to reduce herpes virus levels. Artesunate can also inhibit HIV. During August 2009, Dr. Cheney, the leading advocate of Artesunate as a treatment for CFS, found that Artesunate may inhibit XMRV via NK Kappa B inhibition. Wormwood is often used as an adjunctive therapy to Artesunate. Using Artesunate, Dr. Cheney has doubled his amount of CFS cures and 75% of his patients show some level of improvement due to this treatment. I have written about an Artesunate dosing structure here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/08/25/antiviral-and-immunomodulator-cfs-treatment-i-am-trying/
8. Low Dose Naltrexone: Low Dose Naltrexone (LDN) is a prescription drug that blocks the opioid receptors for a short period of time. This causes the body to create more opioids. These opioids are useful for several reasons including blocking pain, creating endorphins and having an effect on the immune system. A pilot study found that Fibromyalgia patients experienced a 30% reduction in pain and fatigue as a consequence of taking LDN. Dr Bihari has found that approximately 50% of CFS patients are helped by LDN. A study found that “individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.” I have written more extensively about LDN here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/02/26/low-dose-naltrexone-for-cfs/
9. Nexavir: Nexavir (Kutapressin) is a porcine liver extract that inhibits HHV-6 and EBV in vitro, is antiviral, anti-inflammatory and an immunomodulator. A 1990 study determined that 96% of CFS patients receiving more than 40 Kutapressin injections reached remission or near remission status. A 1994 study deemed that 85% of CFS patients went into remission or came close to remission after receiving 95 Kutapressin injections. 67% of Dr. Enlander’s CFS patients have improved as a result of Hepapressin injections (a similar agent to Nexavir) with adjunctive other treatments. Approximately 70% of Dr. De Meirleir’s CFS patients have improved as a consequence of taking Nexavir. Nexavir is very expensive, requires a prescription and injections as its delivery method. I have written more information about Nexavir here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/
10. GcMAF: Gc protein Macrophage Activating Factor is a glycoprotein. Its mechanism of action involves activating the immune system’s macrophages which act in a similar manner to the scavengers in Pacman and eat up the various viruses, infections and other harmful compounds in our body. GcMAF has achieved successful results in the treatment of certain cancers and the eradication (below detectable levels) of HIV. It is now being used by Dr. Cheney and Dr. De Meirleir to treat XMRV positive patients. Dr. Dr Meirleir has preliminary data that shows that XMRV does not grow in culture after Nexavir plus GcMAF administration. There have been many anecdotal reports of XMRV positive CFS patients improving as a result of taking GcMAF. European studies will soon be published demonstrating the effectiveness of GcMAF in treating CFS patients. Blood tests may be able to determine whether individual patients will likely respond to GcMAF treatment. More information about GcMAF and XMRV/CFS can be found here: http://forums.aboutmecfs.org/showthread.php?6019-GcMAF-for-XMRV-Gc-protein-derived-macrophage-activating-factor-anyone-taking-it
Despite purposefully compiling this list to document potentially effective CFS treatments that lack side effects, some of these treatments will be contraindicated in some CFS patients and some patients will experience side effects. I am not a doctor and patients should consult with their healthcare professional before undertaking any treatment regime. It is also worth noting that I have tried every treatment on this list except magnesium injections (which I hope to try imminently) and GcMAF which I hope to take in the future. Despite taking the other eight treatments at some stage during my ME/CFS, somewhat ironically my ‘favourite CFS treatments’ haven’t improved my ME/CFS. Some other treatments that aren’t included on this list however are also potentially helpful to some CFS patients include (ranked in a similar order to the main list); essential fatty acids, coenzyme Q10, NADH, probiotics, intravenous vitamin C, Myers’ cocktails and intravenous saline. In a future blog entry, I may compile an equitable list of strictly prescription CFS treatments that have a higher chance of side effects however are also potentially effective for CFS.