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
Conclusion
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.
Thank you very much for your research and this most helpful article.
Here in the UK we find getting hold of Nexavir (and a Dr that will prescribe it) nigh on impossible. SUCH a shame as a friend of mine had it as Kutapressin about 7 years ago (via a Dr that now doesn’t practice in the UK) and had an overwhelming improvement. If anyone knows how we can obtain it then we’ll be really grateful!
Thanks for posting! Great info. Myers cocktails
Have been pretty effective for me. I look forward
To your future posts on prescription and herbal as well.
One treatment not mentioned that has helped me considerably is hydrogen peroxide IVs. After finally being tested for HHV6 I received a series of ten infusions followed by Vit C. All the flu like syptoms and pain are gone and I am regaining my energy after 13 yrs of being consistantly and moderately ill. I have not tested for xmrv and don’t know if this would kill retroviruses but at least it could get rid of opportunistic herpes infections.
Hi Shirley
Can I ask you if you are still experiencing improvement in your symptoms.
Would you still recommend the hydrogen peroxide IVs as a treatment?
Many thanks
Phil
Shirley,
I just started a treatment (been homebound w cfs for last four years but had fibromyalgia since 06) high dose vitamin c , w myers cocktail, gluthathione, and lipids injectable. I’m on my 5 th treatment and it’s knocking the socks f me. I feel exhaustedx 10. The orthomolecular doc is addressing mitochondrial renewal and lowering viral infections titers ebv, hhv6, cmv, parvovirus, cocksackie, etc. Did you feel this bad.. Did you see difference after 10 treatments……
Any advice will keep me going …..Was it worth it?
Blessings…
Thanks for posting this. I really believe NADH should be on this list – I know some doctors don’t really advocate it’s use, however I am on a six month trial of NADH – two and a half months in and there is a definite improvement in my energy levels and concentration.
Whats up homie, i read your story and you are astoundingly close to me with how your cfs came about. Im 23, from USA, was a big athlete and went to a university. Here’s my email, hit me up @ Soonerthanlater@rocketmail.com. My CFS is not as severe as yours now but i contracted it around early 2007. Id really like to talk peace.
Great article, thanks. Looking forward to those European studies on GcMAF.
Hi, thanks so much for writing this! Your blog is really important for me! After reading it a few times, I would now really like to try the magnesium injections, but I’ll have to convince my GP – there is virtually no ME doctor in Holland… And I would need to come up with a bit of research to show him, do you know where I could find any? (I’m not at all good at the internet and simply don’t have enough energy to search around a lot…)
@tineke:
It is important to emphasize to your doctor that although there is most likely enough magnesium circulating within your blood, your intra-cellular magnesium levels may be low.
A study found here: http://www.ncbi.nlm.nih.gov/pubmed/1672392 and titled ‘Red blood cell magnesium and chronic fatigue syndrome’ found low red blood cell magnesium levels in CFS patients. After intramuscular magnesium sulphate injections weekly for 6 weeks, 12 of the 15 CFS patients given magnesium benefited from the treatment. This contrasted 3 out of the 17 CFS patients given a placebo noting a symptomatic improvement.
Despite this second study: http://www.ncbi.nlm.nih.gov/pubmed/11155461 being performed on Fibromyalgia patients, it demonstrates that plasma levels of magnesium are normal in such patients however their intracellular magnesium levels were low and potentially to blame for their muscular hypertonus.
The purpose of using intramuscular injections of magnesium sulphate is that a large portion of CFS patients cannot intracellularly absorb magnesium when taken orally.
IM magnesium shouldn’t be prescribed to patients with kidney problems. This website emphasizes that IM magnesium side effects are unlikely: http://www.medicinenet.com/magnesium_sulfate-injection/article.htm
The actual injections can be quite painful however the pain can be reduced by warming the magnesium sulphate to room temperature, adding B12 and/or using lidocaine. On a personal note, I had my first IM magnesium injections last week and I have my second one today. The magnesium injection does sting at the delivery site so be prepared for that. I am taking calcium (to avoid a mineral imbalance) B1 as recommended by Dr. Myhill (for its synergistic effects) and continuing with oral magnesium as well. I hope some of this information is useful.
Hi, thank you so much for all this, I’ll start by reading the articles you gave the link for, and then the search for a doctor that is willing to prescribe this… again thanks, and for all your entries! tineke
Hello,
Thank you for posting “10 of the Best Treatments” for CFS. This is an excellent resource. My doctor just recommended artesunate to me, so I am currently learning everything I can about it. I see in your 8/25/09 post that you tried it. Did it help you at all? Thank you for your consideration with sharing this information. Good luck to you.
Best,
Lauren
@ Lauren: Thanks for the comment. I took the Artesunate for 2 months and didn’t notice any improvement in my ME/CFS nor did I experience any side effects. I explain in slightly more detail about my experience with Artesunate and the other antivirals/immunomodulators that I was synergistically trying here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/10/31/the-results-antiviral-and-immunomodulator-summary/
Should you take the Artesunate, I wish you luck with it.
Hi
I’m just about to start magnesium injections via a CFS Dr.
Have you tried these yet, if so did they help you at all?
@Anna
I finished the magnesium injections approximately 2 months ago and unfortunately didn’t notice any effects as a result of taking them. I wrote a slightly lengthier summary of my experience with magnesium injections here: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/03/09/my-2011-treatments-a-progress-report/
Despite my lack of responsiveness to magnesium injections, I have read many anecdotal reports of ME/CFS patients improving as a consequence of this treatment. I wish you the best of luck with the magnesium injections.
I tried the Magnesium injections many years ago when they were first proposed. Quite painful, and no benefits…
Dear CFS Sufferer.
I have too been a long time cfs’er. And tried many of these. There are SEVERAL different TYPES of causes for CFS and it is important to understand which one you are.
1. linked to viruses like HHV6, EBV, MYCOPLASMA.
2. psychological emotional trauma from early age.
3. adrenal fatigue (which can come from low cortisol levels)
4. lyme disease.
You can also have more than one of these.
These can each cause the same symptoms of CFS but all need to be addressed in their own unique way.
1. Viruses – Can be addressed with antivirals from the list above as well as a regiment of adrenal fatigue formulas (d ribose, atp, and adrenal herbs) and learning some form of tai chi or control of ones own energy field and system.
2. Trauma – These can be helped with therapy, hypnotherapy, delta waves, magnesium, b vitamins — there is a deep core to this one that the pituitary adrenal axis is off place from early trauma.
3. Adrenal – This exists in all of them but can also occur on its own. Adrenal fatigue is something that can be helped with adrenal formulas, resting during 3-7pm, tai chi, not pushing, 7-9 hours of solid sleep every night, and taking 1-3 months of baby’ing oneself.
4. Lyme – This can be addressed with lyme herbs. But if you’ve been in the forest without pants on and bit it’s likely it’s from that.
The most important helper in CFS is sleep, lack of stress in one’s life no matter what, and pacing oneself.
It is however, very important to know which version of CFS you may fall under because the treatment for each….is different.
Best of luck!
Mitch
Hello Mitch,
Just wanted to say thanks for those treatment and causation ideas. I pretty much agree really as it covers everything. I’m still deciding what causes I fall under but I’m relatively certain it is down to Early Childhood Trauma weakening my immune system and adrenals, leaving me susceptible to stressors (A levels). So for me it was 2, causing 3 causing 1 – if that makes sense. What’s your take on treating it with Mind/Body techniques exclusively like the Lightning Technique and NLP? I am going down the route of anti virals, adrenal boosters and hynotherapy which I’m confident should work.
Best Wishes
Lewis
Hi Lewis, Following many discussions on CFS it appears that there is a very high correlation between people getting CFS and having mutations in the genese involved in methylation (so called MTHFR mutations). This then leads to a deficiency in methyl cobalamin and eventually adenosylcobalamin (the two active forms of vitamin B12). The only treatment that I know that appears to have had good success is daily treatment with high dose methyl./adenosylcobalamin in combination with 5-methyltetrahydrofolate. The 5-MTHF you can buy on-line. The B12 mix is available as a topical oil that has been having great success. I can find out who is currently selling it if you would like. Good luck, Madge
Hi Madge that sounds interesting. I would love to know where to get it from. It sounds like a good shot. There’s just so many sources of info out there from so many different doctors trying to capitalise on their research it’s difficult to gauge success rates.
Hi there theinellectinside,
You can find out quite a bit more about CFS/ME methylation, the MTHFR mutations, etc and their relationship to vitaminB12 deficiency at http://www.vitaminb12deficiency.net.au/VB12CFS.htm If you go to contacts you can email the supplier who will provide you with whatever details you want.
I’ve had ME/CFS for around 12 years – since I was a teenager – and have found high strength Omega 3 to be somewhat effective at helping with the cognitive symptoms
Here’s what cured me from 25 years of CFS: vitamin D. taken as vitamin D3 pills, all it took was about 80.000 iU to turn my deficiency in a few days from 12 to 20 ng/ml and get my energy back. after that I took another 350.000 iU in about one week to get my level up to about 60 ng/ml as advised by http://www.grassrootshealth.net/ and http://vitamindelta.org. now I take 7.500 per day on average.
Hello David,
Thanks for your input on Vitamin-D and you are one of the few who understood that correct [ meaning high enough to kill off] dosages are extremely important when taking anti-viral supplements. Questions:
1- Did you also have a Mycoplasma Bacterial infection or only a viral CFID?
2- What other things did you succesfully apply to reach a cured state? any intestinal cleansing or natural diets?
Appreciate your valuable input,
Abdulrahman
Hi Abdulrahman,
Sorry for my late response. Hight time for an update. My answers to your questions:
1- I don’t know of any infection that caused my chronic fatigue. Doctors have investigated my body inside out and couldn’t find any explanation except vitamin D and B12 shortage.
2- Vitamin D only helped me for a while -probably cos I did some other things as well. Here’s what has solved my CFS for more than 8 months now:
1. no sugar in any form (so also no honey, maple sirup, fruit juices etc. etc.), even no carbohydrate rich foods like bread, potatoes, pasta, rice etc. and no alcohol as both carbs and alcohol are readily converted into glucose sugars in your body.
2. water all day long, at least 3 liters a day for a 75 kg adult.
3. cold showers or baths.
4. nose breathing all the time.
Nr 1 is by far the hardest to apply in our sugaraddicted society. Read the packages of the foodindustry; they know how addicted we all are and put sugars in anything -even meat and tea! Beware that there are about 30 synonyms for sugar like fructose, maltodextrin etc. Getting some sugar is almost inevitable but try to keep it below 15 grams a day (about 4 sugar cubes).
If I violate this rule I pay the price and get overwhelmed with fatigue. Then it takes a few days without sugar to regain my energy.
Nr 2 is absolutely necessary for me but it only works if I apply nr 1.
Nr 3 always energizes me but only for 1 or 2 hours.
Nr 4 is especially important when exercising and takes away most of the post exertional malaise.
Hope this will help some of you. It only can if you commit to it for at least a week. Will you give it a try? Looking forward to hear about your experience!
I am a severe sufferer of ME. Where can i get hold of LDN in the UK. Ive tried everything now and am at my wits end.
“Magnesium Injections: The standard procedure for magnesium injections involves magnesium sulphate (which requires a prescription) being administered intramuscularly” Epsom salts (magnesium sulphate) baths, footbaths, or home-made body lotion would be a lot easier than injections. I have written about Epsom Salts on my web site, here:- http://foodforthought.org.uk/optimising/forgotten/ Please note the information on sulphur – so critical in Chronic Fatigue
Many people appear to be having success with mixed adenosyl/methyl VB12 + vitamin D
I reccomend http://www.survivingmold.com.
I got cfs from mold, and many with me have tried the shoemaker protocol with great success. Colestyramine and Doxycycline (inhibits cytokines/inflammation in cells) really helped me get back on my feet!
I have read all of this and this has really opened my eyes, THANK YOU. I could just cry… I’ve been a medical mystery for a couple years now, and have seen so many doctors. I’m 41 and a single mom of two boys…no family left, no child support so on my own and it has been a struggle. I’m a very positive and happy person, and very emotionally healthy. My ‘stuff’ started 5 years ago with occasional sinus infections etc, and they increased with frequency every year to the point of now the last 2-3 years I have been sick constantly. Very, very little energy, flu like symptoms, headaches, facial pain, I have some brain ‘fog’ as I don’t think as clearly and quickly as I normally do, etc. My CT scan showed no sinus damage (just a deviated septum of 4ml)…my allergy tests came back with zero allergies…I’ve seen a couple ENT’s, GP’s etc. I’ve been told it was a chronic infection (so I have been on hard core antibiotics for over a month straight a couple times with steroids – nebulizer treatments – zero improvements except a tiny bit of inflammation improvement but that was only while I was on it)…was told it’s my sinuses not draining properly (but scans show fine)…was told it’s TMJ…was told it’s allergies (tests came back fine) etc…was told it’s GERD… well, you get the picture. I am so drained from this. Also, I do notice that when I get any less sleep at all (which is hard for me to get a lot of sleep as I’m a single mom) that I am even worse, and most days I feel like a walking zombie.
I have not seen a CFS/ME specialist and will start looking in my area (I’m in US – and in CA, specifically in San Diego).
Prior to all of ‘this’ I was a very healthy person, and I would go literally 10 years without even a sniffle/cold. I could be around sick people and not get sick. So being so run down and exhausted ALL of the time is just so incredibly horrible to me…as it would be to anyone of course.
For the first 3 years of this what I did notice was that the only time ever I felt normal was when I went out of town (I traveled occasionally 2-4 day trips for biz – I’m self employed and my schedule is all over the place)…so then I thought maybe it was allergies to where I live, but that wasn’t it. Then I thought maybe it was mold in my house (which I lived in at the time, built in ’71)…ended up selling my house about 1.5 years ago (due to my divorce) and was so excited to move to see if it was mold in the house causing everything… but nope, that wasn’t it. I moved to a fairly new apartment that had all new carpet, new paint, everything and my symptoms were all the same…so it wasn’t the house. Then it dawned on me that maybe it was my bed (my bed was a high quality one and was about 6 years old…interestingly enough all of this started after I got that mattress…although of course that could have nothing to do with this). So I just moved again, into a new townhouse and when I moved in here (which was Oct 1) I bought a new mattress (entire new bed). Zero improvement thus far, but if there was mold in my old bed since I am so bad now it could be that it was possibly ? in fact mold in my old bed but I now need to recover from it?
If anyone has any thoughts for me, please chime in, I welcome them all. I’m so tired of suffering.
Hi Mel,
I hope you have advanced since 2013 and geting cured?
I was a sufferrer of CFID for 20 years but finally cured it mostly naturally with no gimmicks. If you want to know my techniques, see Pheoinix Rising at
http://forums.phoenixrising.me/index.php?threads/a-proven-treatment-cure-for-chronic-epsten-barr-virus.32259/
There are many posts in my name just search “Abdulrahman”. Good luck to you,
Abdulrahman
Me again from above… I just now looked at the surviving mold site, and I have ALL of their symptoms listed except for metallic taste, night sweats, and excessive thirst… besides that I have EVERY one of them. Although I don’t know if this is it or not, I’ll start looking into it.
You got the D-Ribose amount wrong, it should be 5grams three times a day and not 5mg
@Dave
Thanks, I’ve fixed it now 🙂
What has been working for me is the NES energy medicine system
http://www.neshealth.com/
I was extremely skeptical about this and didn’t expect any results from the “infoceuticals” but I had immediate improvement from just a few drops a day, and over the past 3 months my energy and quality of life have GREATLY improved.
Cell Food oxygen drops are also making a big impact on me. Am looking into other oxygen/ozone therapies now, reading Ed McCabe’s book Flood Your Body With Oxygen.
IV nutrients and D-Ribose did nothing for me. LDN is helpful but has only had a small impact on my quality of life. I have tried hundreds of supplements and treatments over the past four years and NES Infoceuticals and Cell Food are the only things that have truly helped.
Kundalini Yoga!!!
I’ve had a version of CFS for about 17 years. In some ways its not typical as I have plenty of good days where I’m pretty much normal but also a lot of bad ones where the most I can do is watch movies on line.
4 years ago I was in a bad motorcycle accident followed by 17 surgeries over the next 3 years to piece me back together. This seemed to significantly worsen my CFS to the point where about one day in two was a write-off. Also I think my general health was pretty bad – for example my heart was skipping beats, and neither I (or doctors) could find the pulse on my left wrist.
As of last June I was pretty desperate. I’d done Kundalini yoga a few years ago so decided to try again. When I first contacted the instructor I was thinking of private classes as I thought the short subway ride might be too much for me. At any rate 7 months later this has really turned my life around, I am not “cured” but I am certainly hugely better – walking and taking the subway everywhere and only having an occasional down day – and my left pulse is again there and strong.
Kundalini Yoga is very different from Hatha, it involves a lot of breathing exercises, specifically a form of rapid breathing through the nose called “breath of fire”. My “not really scientific” theory as to why this might help is that although we don’t know the cause of CFS its possible (as I say I’m really just speculating here) that in some cases the symptoms might be the result of lack of sufficient oxygenation of the cells – as I say due to some other underlying cause. If this is the case, it makes sense that this could make one feel pretty awful and that spending a couple of 1 1/2 hr classes every week doing breathing exercises could have positive effects.
At any rate I’m pretty enthusiastic about this – and I would love to see if it helps other people – so I would like to offer a small “scholarship”. I go to a class in Harlem which is $10 a shot. I will be happy to pay for 10 classes for up to 10 CFS sufferers that want to give this a go. If you are outside NYC and can find a Kundalini class (there seem to be more and more people offering this) I will again pay up to $100 for classes for anyone that wants to give this a go – the only condition being that you let me know how it goes.
Oh, and in case any one is suspicious of my motives, I have no commercial interest whatsoever in this (I’m a self employed ex Wall Streeter currently trying to start a hedge fund) – I would just like to know if this is helpful to others.
Hi Phil, I have ME and I am willing to take you up on your offer to pay for kundalini yoga, if it still stands? I am in Denmark.
Magnesium Orotate is a vitamin/nutraceutical with comparable results to magnesium injection. It has the advantage of being delivered intracellularly by the orotate mineral transporter. Little known remedy with a powerful kick. Available in Canada from AOR (Cardio Mag 2.0) and in the US under the label “Professional Formulas” or “Advanced Research” (Swanson.com carries it). It’s not an easy product to make, so choose a reputable manufacturer.
I take a daily combination of Magnesium Orotate and Magnesium Taurate for CFS/Fibromyalgia. It helps a lot. For me, it might be taking care of about 20% of my symptoms. Other forms of magnesium I’ve tried (including malate) didn’t do much for me, and many just sent me running for the washroom (low quality magnesium supplements that don’t get absorbed end up causing havoc in the gut because of magnesium’s ability to draw in water). I’ve heard that Magnesium Glycinate is also well absorbed. In the research I’ve done, Orotate, Taurate, and Glycinate forms are all considered highly bio-available. To my knowledge, only the orotate form delivers intracellularly (inside the cell).
Just don’t take too much! Too much or too little magnesium both produce uncomfortable muscle issues such as cramps and aches. Make sure you are getting the Recommended Daily Allowance of calcium if you take high potency forms of magnesium because an excess of magnesium will eventually create a deficiency of calcium (the reverse is true as well: too much calcium will create magnesium deficiency).
This is an awesome list and I haven’t heard of some of these. I am not sure if I have any bacterial or viral infections that caused my CFS but I suspect it may be the case. My CFS seemed to start out with a bad flu where I was sick for about a week or so, really weak and feverish. The energy formula does look good except for the fact that it contains cyanocobalamin.
Cyanocobalamin is the cheapest and some say the worst form of B12 to supplement with since its derived from cyanide, and those with CFS that often have detox issues it may take extra work detoxifying it may not be worth getting it just for that.
Hi Jarred, I would not advise the cyanocobalamin. It is very hard to remove the cyano group if you have low intracellular glutathione, or if you have mutations in your MTRR gene. Effective treatment for CFS is much better with a combination of adenosyl/methyl B12, plus the various vitamin analogues that your genetics dictates. If you know that you have methylation issues you will also know that you need 5MTHF, plus methylB12, and to chat to someone who really knows your genetics. The Ado/MeCbl mix is available from b12oil.com . They can also give you help with your methylation genetics.
Sorry that should be b12oils.com
I take hydroxycobalamin and adenosylcobalamin due to my genetics. I have heard of oxytocin being helpful, is that prescribed though and which of these treatments needs to be prescribed or would be covered by insurance?
My question is this: for how long should you take, for example, the B12 injections? For the rest of my life? For a month? Two months?
Theres a good book on B12 called “Could it be B12”, it really depends though, most need it for life if you have a deficiency but a lot of people would benefit if they don’t have a deficiency. You can get a B12 serum with MMA test to see how your B12 levels look, certain drugs and supplements such as folate can mask a B12 deficiency. You can take injections, take pills orally or sublingually (dissolved under tongue).
There are four forms of B12 as well adenosylcobalamin (dibencozide), hydroxycobalamin, methylcobalamin and cyanocobalamin. The best way to find out which B12 you need would be to get a 23andme test to find out your genetics and certain SNPs.
The two active forms of B12 in the body are adenosylcobalamin and methylcobalamin. There is roughly 3 times the amount of Adenosyl to methyl cobalamin. Cyanocobalamin is not generally found in the body. It was an artefact of an original purification system for B12 in which the cyanide group leached off the column. Unfortunately that was the form that was registered with the FDA, the TGA, and the EPA, and so many people are stuck with it. People who have low reducing capacity within the cell, or have mutations in the MTRR gene cannot convert CN-Cbl to the two active forms methyl and adenosyl B12. Hydroxycobalamin is also a pro-vitamin it has to be converted to the two active forms methyl and adenosylcobalamin (B12). Everybody, but everybody needs both adenosyl and methyl forms, which are also the two forms found in meat. If you don’t eat high amounts of folate and if you have multiple mutations in your methylation associated genes you may need to supplement with more methyl B12 than others. This is the biology of it all, but despite this the cyano and hydroforms are still the standard method of treatment, despite it being known for over 60 years that these are NOT the forms in the body. For the life of me I do not understand why the medical profession has not caught up on over 60 years of publications in the area. EVEN WIKI has it.
Here’s what has solved my CFS for more than 8 months now:
1. no sugar in any form (so also no honey, maple sirup, fruit juices etc. etc.), even no carbohydrate rich foods like bread, potatoes, pasta, rice etc. and no alcohol as both carbs and alcohol are readily converted into glucose sugars in your body.
2. water all day long, at least 3 liters a day for a 75 kg adult.
3. cold showers or baths.
4. nose breathing all the time.
Nr 1 is by far the hardest to apply in our sugaraddicted society. Read the packages of the foodindustry; they know how addicted we all are and put sugars in anything -even meat and tea! Beware that there are about 30 synonyms for sugar like fructose, maltodextrin etc. Getting some sugar is almost inevitable but try to keep it below 15 grams a day (about 4 sugar cubes).
If I violate this rule I pay the price and get overwhelmed with fatigue. Then it takes a few days without sugar to regain my energy.
Nr 2 is absolutely necessary for me but it only works if I apply nr 1.
Nr 3 always energizes me but only for 1 or 2 hours.
Nr 4 is especially important when exercising and takes away most of the post exertional malaise.
Hope this will help some of you. It only can if you commit to it for at least a week. Will you give it a try? Looking forward to hear about your experience!
Does anyone think their lack of energy could be due to not having enough T3 thyroid hormone? If a person is hypothyroid or has Hashimoto’s thyroiditis, they are not adequately converting T4 thyroid to T3 thyroid, which is needed for adequate energy. Many or MOST standard thyroid tests will often show that a person’s Free T3 and TSH thyroid levels are “within American Medical Association test ranges” when they are not, and are in fact low. TSH is a useless test, doesn’t accurately indicate anything, but most doctors still use it as an indicator of adequate thyroid function. Return T3 (RT3) is the most important part of a thyroid test, and if it is high that indicates the T3 is not getting into the cells. I believe a lot of CFS cases stem from inadequate T3.
In my experience, and according to my current doctor, T3 is a dangerous treatment. Dr. Wightman at the Holtorf Clinic had me on it. I gradually increased it and by the time I got to 25 mcg I was having chest pains and rapid heartbeat. His solution was for me to take a beta-blocker because I “would need to get up to 50 mcg.” Instead I quit seeing him, went off it, switching to Nature-Throid. Going off it was hell, I could barely sleep for two months. I am now going off the Nature-Throid since I’ve experienced chest pain with it as well.
The T3 did help some with my energy, but not with stamina. My feeling is that doctors prescribe it as a quick fix–it will give energy, but doesn’t get to the root of the endocrine problems. My current doc says if you don’t actually need thyroid meds but you take them, you will push your adrenals too hard, and at least with my, adrenal fatigue was more of a root issue. The herbalist I’m working with suspects the problem is even further up the chain than adrenals–inflammation of the pituitary. In addition to going off Nature Throid, I’ve stopped taking adrenal cortex tissue and instead am using eleuthero, ashwagandha, schizandra, and phosphatidyl serine (Seri-Phos). For me it is important not to get overstimulated and that is what T3 was doing to me, pushing my heart too hard as well as adrenals.
My current doc (naturopath) said he would be willing to prescribe a maximum of 5 mcg of T3, in conjunction with Nature-Throid. Beware of doctors pushing high doses of T3.
Thanks for sharing your experience!