Page Synopsis: Another monster page to be used as reference, (don't feel that you have to read it in it's entirety).
I've tried at least a quarter of the items listed and found very few to be of help. On CFS sites and literature these items are repeatedly mentioned so I thought it may be helpful to consolidate as many as I've found into this page.
Without finding and addressing the underlying cause and mechanisms of CFS, the best supplements can likely do is to act as (insufficient) band aides for CFS symptoms. The internet is rife with claims by 'hucksters' and 'shills' (some are even doctors) willing to absorb all your money with bold claims that their brand of supplement (typically a formula combining the items listed below) will do everything we would want supplements to do.
That said there are four items I have found helpful
Kratom is an exception. Kratom has been unbelievable. It's how I managed to build this site. I cut out stressors then I stopped taking Cymbalta. That allowed me to the level where could garner the effects of Kratom. There are many types of Kratom and I've been exclusive to Bumble Bee brand White Borneo or Krave brand Green Malay (both wake me up, allowing focus and relieves OCD even!!). The red 'Maeng Da' (not pictured) helps my fiance' with her Fibromyalgia and Neuropathy pain MORE than Vicodin and Hydrocodone ('Norco') and allows her to sleep as well. Soooo thankful to have found Kratom. There are suppliers who ship fresh Kratom which I look forward to ordering (I'll put my reviews on site). Another supplement I've found helpful is Liquid IV 'Hydration Multiplier' (read about on page here) sometimes with B12 mixed in (read about on page here)
That and STOPPING Cymbalta (SSRI). Don't go off your meds without doctor advice and guidance, but that has been my greatest progress was stopping Cymbalta (and switching to Venlafaxine
Xifaxan was immensely helpful towards IBS relief, and I can not recommend it enough!
I like the 'Hydration Multiplier' as with the case of many CFS patients, I feel incredibly thirsty all the time, and it quenches that almost insatiable thirst
There's a supplement 'andrographis' that appears to have CURED several CFS sufferers. I have and will take it, though I'm afraid to (given the typical initial reaction, yikes!)
Switching to a diet that includes organic cold pressed (not pasteurised) leafy vegetables drink, Wildcaught Alaskan Sockey Salmon, and a variety of nuts while avoiding fried foods, meats (except fish) and limiting dairy intake. I would do well to decrease sugar and coffee.
Skill Level 2
Relevance:3 Technical Level:1
supplements alone can not cure CFS though some may aleviate sympotms
page 8 CFS > SUPPLEMENTS and NUTRITION
White Borneo Kratom
Green Malay Kratom
Liquid IV 'Hydration Multiplier'
Vitamin B12 Methylcobalamin*
Costco 'Kirkland' brand good price, though any brand ok
*Methylcobalamin NOT Cyanocobalamin, read about B12 on page here
1) Supplements I am currently taking
1a) Kratom, Bumble Bee brand White Borneo and Krave brand Green Malay
This is often used to help individuals dealing with opioid withdrawals and minor pain because it acts as an opioid receptor agonist. It has long been utilized in traditional medicine as a treatment for many conditions. Kratom produces both stimulating and depressant effects in a simultaneous manner. It is capable of increasing the amount of blood flow to the brain, but effects can vary based on the dosage. To learn about possible negative repercussions please visit https://www.healthrising.org/forums/threads/kratom.6703 (it can cause constipation which is an issue with IBS and it can be addictive. Fortunately, as I largely addressed IBS with Xyfaxan this was not an issue for me and as far as quitting and withdrawal, so far after a year of happily using Kratom, it hasn't been an issue). Also note, I tried greenmalay of another brand and it didn't work as well
$100 per month
1b) Liquid IV
1 month $80, less if you sign up for text alerts on liquid-iv.com
Electrolyte drink mix which contains three times the electrolytes of traditional sports drinks with five vitamins
contains Pure Cane Sugar
Sugar is an essential ingredient in Cellular Transport Technology (CTT®). When combined with salt at the correct ratio, it accelerates the absorption of water into the bloodstream. Our sugar comes from Non-GMO Sugar Cane and is strictly for function, not taste.
Dextrose is a form of glucose, which is a naturally-occurring sugar compound found in our bodies. It is the most absorbable of all sugar compounds, and improves the absorbability of our products into the bloodstream.
Mined Salt helps with redox situation
Sodium is an essential ingredient in Cellular Transport Technology (CTT®). When combined with sugar at the correct ratio, it accelerates the absorption of water into the bloodstream, replacing what your body loses through sweat.
Potassium is an essential component of CTT®. This electrolyte maintains a proper fluid balance in the body and helps carry nutrients to the bloodstream. Potassium can also help prevent muscle cramps and improve bone health – and we’ve got more potassium than a banana.
Sodium citrate, the salt found within citric acid, provides just the right amount of tartness to balance out the sweeter notes of our products.
Vitamin C (Ascorbic Acid)
Vitamin C is known to be vital for repairing tissue, improving immune function and reducing the duration and severity of colds. We’ve got more Vitamin C than an orange!
Vitamins B3, B5, B6 and B12
Vitamin B helps convert food into energy, and is known to support healthy cellular function.
Citric Acid helps to stabilize the flavor and tones of our products. We derive it from natural sources like cassava root, potatoes, and corn. We use a non-GMO, non-artificial form of it in all of our sticks!
Dipotassium Phosphate is a water-soluble electrolyte that’s also a great source of potassium and is a critical ingredient of CTT®.
Silicon Dioxide is a compound made of natural materials - silicon (from the crust of the earth) and oxygen. It’s also found in water and plants. We utilize it in our formula to maintain the smooth consistency of our powder for the best consumer experience.
Stevia Leaf Extract
high-quality organic Stevia.
We extract our various flavors from fruits, vegetables, roots
Electrolyte mix contains listed ingredients and zinc gluconate
1c) Astragalus 8
As per a conversation with a friend, Trish said "please take astragalus 8 3000 mg fusion brand, buy it off the internet, cheaper, and allow yourself to heal. I told you about this years ago and you obviously haven't taken it or you wouldn't be in a dark place with CFS".
I said "Hi Trish! So years ago my CFS was worse as I hadn't stopped Cymbalta, and supplements had no effect, including the Astralagus 8 so I stopped it after a couple weeks. Now because of your reminder (thank you! I've ordered Astra 8 to arrive today and Astralagus 8 to arrive first week of October (you can only get it from Australia. Keeping all fingers crossed!"
So I've been taking Astra 8 for two weeks and haven't noticed anything except I feel a little bit more irritable
2) Supplements I am about to take
2a) I'm trying this https://www.healthrising.org/blog/2022/09/19/eclectic-treatments-recovery-chronic-fatigue-syndrome got the Nebulizer, now waiting for supplies
2b) There are coffee alternatives such as Zynamite (I ordered the Azoth brand) which I'm waiting for and look forward to trying :) Please read about these here https://scitechdaily.com/three-amazing-caffeine-alternatives-for-quick-clean-energy-and-the-science-behind-them
2c) I got covid so now I have long covid, there are three ways to medicate for long covid that have had success for various patients Tolovid (didn't work for us), BC007 (not available yet, but it cured some with CFS!) and the Ivermectin method (which requires accompanying medicines) see FLCCC.pdf
I got Ivermectin with a prescription issued online (so that I could get it filled right away). Sites like pushhealth, blinkhealth and honeybee allow those without doctors to obtain prescriptions, or let you request prescriptions for medicines that local doctors may be resistant to prescribing (such as atorvastatin etc). If your doctor gives you good reasons not to take a medicine (such as drug interaction interference with your other medicines or your specific lab test results that indicate an additional medicine is not right for you then certainly do not order the medicines. If, however you have found that many doctors in other countries are successfully treating patients with a medicine that your local doctor doesn't take issue with except it's not part of their routine practice etc, then use your judgement and if you plan on taking additional medicines, notifiy your doctor beforehand. Note that if you go this route you must say the Ivermectin is for scabies and not long covid as typically local retail pharmacies will not fill it for covid
I then got Ivermectin again from Canadian pharmacies such as drugs-365.net or mymedrx https://mymedic-rx.com/antibiotics/stromectol.html, that don't require prescriptions, but take a long time to ship. This is the easier and less expensive route. If you are considering trying this protocol make sure to get stromectol brand Ivermectin do not get veterinary Ivermectin pills or paste
I'm waiting to buy the 3 supplements to take with Ivermectin as part of the protocol, low dose Naltrexone, Prednisone and Omega 3
3) Supplements I recently took for months and found no effect
1 week supply $50 half dose, $100 full dose
MitoQ Liver $35 month,
A shortened form of the antioxidant ubiquinol (a CoQ10) with the addition of an ion called Triphenylphosphonium, which gives it a positive charge. These two modifications enable MitoQ to pass through the mitochondrial membrane, Siliphosbrand Milk Thistle, Selenium
MitoQ Brain $40 month, Zembrin® Kanna Extract, Huperzine A, Ginkgo extract, Sharp-PS Phosphatidylserine
mitoq curcumin Longvida® Curcumin is a breakthrough ingredient that is 65-100 times more bioavailable than standard curcumin antioxidants
Trace Minerals Electrolyte Drops with Fulvic Acid 2 oz Alkaline Liquid 70 different trace minerals as well as 20 organic acids. The primary trace minerals include calcium, potassium, iron and magnesium, emailing for full list, haven't received after 6 months, emailin again
3 months supply $37
Allergy Research Group NTFactor Energy Lipids Powder
4 month 2 weeks supply $95
NURYSH Topical Patch Vitamin A, Vitamin C, Vitamin D3, Vitamin B6, Vitamin B3, Vitamin B9, Choline, Curcumin, L-Carntine, Coenzyme Q10, Resveratrol, N-Acetyl Cysteine, Nicotinamide Riboside, Alpha-Lipoic Acid
1 month $28
NURYSH Topical Patch Vitamin A, Vitamin C, Vitamin D3, Vitamin E, Vitamin K2, Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Vitamin B7, Vitamin B9, Vitamin B12, Calcium, Iron, Phosphorus, Iodine, Magnesium, Zinc, Selenium, Manganese, Chromium, molybdenum, chloride, potassium
1 month $28
Thorne Research Trace Mineral Complex Zinc (as TRAACS Zinc Bisglycinate Chelate) 15 mg, Selenium (as L-Selenomethionine) 100 mcg, Manganese (as Manganese Citrate) 2.5 mg, Chromium (as TRAACS Chromium Nicotinate Glycinate Chelate) 100 mcg, Molybdenum (as Molybdenum Citrate) 50 mcg, Boron (as Bororganic Boron Glycinate Complex
3 month supply $17
NOW Supplements, Sunflower Lecithin with Phosphatidyl Choline and hosphatidyl inositol, phosphatidyl ethanolamine, and essential fatty acids
6 weeks supply $17
Jigsaw Health MagSRT Slow Release Magnesium Supplement
2 weeks $10
1 month 3 weeks $16
Performance Support Formula Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B6, Vitamin B12, Magnesium, Manganese, Creatine, L-Carnitine, Fumaric Acid, D-Ribose 100 mg, Malic Acid 100 mg, Succinic Acid 100 mg, Natural Coenzyme Q10, Alpha Lipoic Acid, Trans-Resveratrol, Curcumin C3 Complex, Pantethine
1 month $71
AKG Supplement Alpha Ketoglutaric Acid 1,000mg Per Serving (180 Capsules) Different and May Be More Effective Than AAKG
Glass Hydrogen Generator Water Bottle SPE PEM
Solgar Vitamin B12 1000 mcg myacobalamine
8 months $20
CDP Choline Citicoline 60 Capsules 300mg $22
Supplements of interest
efficacy against EBV (Inhibition of the epstein-barr virus lytic cycle by andrographolide - PubMed (nih.gov) ) I believe it helped raise my NK cell function. Also several years ago I had very high titres of HHV-6 and don't any more. I don't have "proof" but believe that andrographis played a role in this. This is what I've taken for several years
There are a number of peer review medical articles that support the use of this herb to improve the immune system. There is an article in the British Medical Journal showing that it has been shown to be helpful in limiting the duration of a cold
Make sure you are aware of the potential of a strong allergic reaction to this herb
400mg 120tablets $15
Pycnogenol, French oak wood extract, 100 $67
Improved management of primary chronic fatigue syndrome with the supplement French oak wood extract Robuvit: a pilot, registry evaluation https://pubmed.ncbi.nlm.nih.gov/24231834
The improvement in signs/symptoms was significantly more valuable in subjects using the oak wood extract considering the main 8 symptoms and the accessory symptoms. Considering the BMIS variations, the totals for positive and negative items were significantly more favourable for Robuvit subjects. Overall mood evaluation in the oak wood extract group improved from an inclusion average of -6.93;2.1 to +4.32;2.6 at 6 months; in contrast it changed from -6.5;2.5 to -3.4;1.5 in controls
Piracetam 200g $26
Acclydine is an alkaloid, derived from selected plants that have substantial effects on the protein structure and the metabolism.
At cellular it affects the activation of insulin-like growth factor (IGF-1) receptor.
'the researchers tested levels of IGF-1 and IGF-BP-3 in the patient’s blood before Acclydine was taken'
Value of IGF-BP-3 / IGF-1 General Response to Acclydine:
4.5 or greater : Greatest Probability of Response
3.5 to 4.5 : Some patients responded, some did not
Less than 3.5 : Most patients did not respond
The researchers concluded that Acclydine is best suited for patients with a ratio of IGF-BP-3/IGF-1 greater than 3.5. Patients with a ratio greater than 3.5 have a IGF-1 deficiency.
In the case the ratio is less than 3.5, but the concentration of IGF-1 is higher than normal, it might be useful to begin with a low dose of Acclydine, 1-2 capsules per day.
Methods: 90 individuals suffering from CFS (Holmes and/or Fukuda criteria) entered the study. They were not allowed to take any other medication than minor pain relievers and homeopathic medication.
The treatment protocol consisted of first 4 weeks: 250 mg four times a day in combination with amino acids; second 4 weeks 250 mg Acclydine twice daily in combination with amino acids. The primary efficacy variable was the change from baseline in CFS as measured by the Clinician’s Global Impression Scale (CGI) after 4 and 8 weeks of treatment. Secondary endpoints were: IGF-1, IGF-BP3 values, LMW/HMW RNase L ratio, GHQ-30, POMS, SF-36 and SCL-90.
Acclydine in combination with amino acids gives an improvement in CFS symptoms (54% in the active group compared to 16% in the placebo group). No major adverse events were noted. Acclydine appears to be a safe and adequate drug for CFS.
This study was sponsored by Optipharma, The Netherlands
Nootropics such as Nimopedine, LDN, Piracetam and Cerebrolysin
CBD oil or pills see CBD Oil
Been taking PS almost 20 years. I'm 75, energetic and still work! Phosphatidylserine works for me, BUT only one brand, and one form, SOFTGEL. Have tried many softgel brands but after a week I start to lose my memory
Phosphatidylserine made in the US would be ineffective as bovine derived PS which has been proven to be somewhat effective is what positive resulting studies have used. Therefore, it probably would not be helpful for us in the US to take PS much better evidence for bovine-derived phosphatidylserine than for plant-derived
Noopept also known as omberacetam
N-phenylacetyl-L-prolylglycine ethyl ester
Venlafaxine should not be combined with Ginkgo
R o b u v i t
ATP supplement, 'Stance Supplements Power ATP' It provides more oxygen, I feel like my breaths are deeper, and I typically feel an energizing or “up” effect sans jitteriness
Following Dr Garth Nicolson's research into mycoplasma (M. fermentans, M. hominis, M. pneumoniae or M. genitalium) and cfs, microencapsulated NADH (35 mg/d), l-carnitine (160 mg/d), membrane phospholipids (2000 mg/d), CoQ10 (35 mg/d), α-ketoglutaric acid (180 mg/d), and other nutrients into an oral supplement 'ATP Fuel' or NTFactor EnergyLipids Powder soy lecithin extract
NAD+ and Hydroinfused Hydrogen Rich Water
acetyl l carnitine, co-q10, p5p, l-tyrosine, ALA, and a resin called shilajit.
"Shilajit and ALC are especially helpful, I notice a difference right away, Tru-Niagen is expensive hype for me. I’ve done better with NMN, NAD+, and NADH. PQQ doesn’t do anything either."
Carnitine, Acetylcarnitine, Vitamins C, E, Glutathione, Tyrosine, Kuvan and NO (Nitrous Oxide) supplements have all helped.
Use of Venlafaxine should not be combined with Ginkgo, Metoprolol, St John's Wort or Zolpidem
Which vitamins and minerals should be taken together or separately
The question of when to take vitamins together or separately is an excellent one and which we address in the "What to Consider When Using" and "Concerns and Cautions" sections of our Reviews of vitamin or mineral supplements. How you take a supplement can be just as important as which product you take -- both may impact how much of a nutrient your body actually gets.
A few rules of thumb:
If you take a large dose of a mineral, it will compete with other minerals to reduce their absorption. The mineral most often taken in large amounts is calcium: The dose is usually several hundred milligrams, compared to doses of just a few milligrams or even microgram amounts (1,000 micrograms = 1 milligram) of most other minerals. So if you take several hundred milligrams of calcium from a supplement, take it at a different time of day than other mineral supplements or a multivitamin/multimineral supplement. Doses of magnesium can also be relatively large and should, ideally, be taken apart from other minerals. If you take high doses of zinc long-term (50 mg or more per day for 10 weeks or longer ), be aware that it can cause copper deficiency, so you may need to supplement with copper as well.
High doses of calcium or other minerals (including magnesium, certain forms of iron, and zinc) from supplements may decrease the absorption of carotenoids, such as beta-carotene, lycopene and astaxanthin, from foods and/or supplements. It is best to take carotenoid supplements at a different time of day than a supplement or meal containing large amounts of a mineral (e.g., hundreds of milligrams of calcium or magnesium).
Some vitamins can actually enhance the absorption of other nutrients. Vitamin C, for example, can enhance iron absorption from supplements and plant foods.
The fat-soluble vitamins (A, D, E, and K) are likely to be better-absorbed if taken with a meal that contains fats. In fact, one study found that taking vitamin D with dinner rather than breakfast increased blood levels of vitamin D by about 50%. However, evidence (mainly from animal and cell studies) suggests that moderate to large doses of fat-soluble vitamins reduce absorption of other fat-soluble vitamins - by about 10 to 50% - due to competition. Absorption of vitamin K appears to be particularly reduced by other fat-soluble vitamins, while vitamin A absorption is least affected and may actually be better absorbed when taken with vitamin E (Goncalves, Food Chem 2015). Taking vitamins D, E, or K several hours before or after other fat-soluble vitamins would seem to maximize their absorption.
Taking certain supplements with food can reduce gastrointestinal side-effects. For example, taking magnesium with food can reduce the occurrence of diarrhea, and taking iron with food can reduce the chance of stomach upset.
Be aware that vitamins and minerals can also affect the absorption and effectiveness of medications. You'll find more specific information about this in the "Concerns and Cautions" section of each review.
click here to download the page below
A review on a website "Every lab analysis I’ve gotten from shalijit products has either mold, myctoxin, heavy metal contamination or both, unfortunately. Have you found one that’s clean? Naviaux’s studies with Suramin, BTW niacin , D-ribose, Co-Q 10 , MSM, Vit C and dark chocolate are all part of my regime, along with Dr Sarah Myhill’s Groundhogs, Basic, Acute & Chronic, plus a few others eg Dopa macuna, TCM herbal sleep aid, all gradually introduced in low titrations over 8+ years, finally feeling my way through the fog. 4x per day application of a mix of EOs essential oils, in carrier, for pain relief, FM, lavender, sandelwood, Peppermint, Eucalyptus, Rosemary, got those linlools going on, I read somewhere that the EOs act via mRNAs absorbed through the skin, anyway wouldn’t be without them, aids breathing & sleep too"
Pink Salts or Trace Mineral Supplementation
advised to keep a 'clean' diet, such as my diet which consists mostly of
Organic Raw spinach or kale (for nutrition, fiber and probiotic effect)
Organic cold pressed (not pasteurised) leafy vegetables drink
A variety of nuts (avoiding peanuts which is a legumme)
Wildcaught Alaskan Sockey Salmon for DHEA (wildcaught fish, particularly Salmon is the best way to balance omega levels)
Alkaline vs Acidic foods (avoiding or limiting starch etc)
Watercress (watercress is 100% pure nutrition, whereas Spinach is 70% nutrition and cauliflower, for instance is 15% nutrition)
Raw organic produce (unwrapped or prewashed, as chlorine is used in washing the packaged variety), lightly rinsed so as to retain 'elevated microcolonies' (that green sludge you find on stalks and in the folds of leaves. It is the best probiotic, and in eating it raw it travels to the small intestine where probiotics do the most of their 'work', protected by the folds of the leaf)
Avoiding mouthwash (to leave helpful bacteria in the mouth as part of predigestion)
Fodmaps (when experiencing IBS flares)
Avoiding fried foods, sulfites, preservatives, coloring, nitates and nitrites, additives, cellulose, 'natural flavors', onion and garlic powders, hydrolised items, 'enriched', canned, plastic, microwaved plastics or styrofoam containers, farmed fish or Pacific Ocean wildcaught (other than Alaskan), artificial flavors, artificial sweeteners, non organic coffee or tea (the most pesticide intensive farming are tea and coffee plantations, foods imported from China (even the 'organic' is grown in heavy metal laden soil), American rice (high arsenic levels), MSG, High fructose corn syrup, meats (except fish) and limiting dairy intake. I would do well to decrease sugar and coffee.
Vitamin B and B12 Injections***
*Careful with vitamin B6 dosage, it is one of the few vitamins that you can overdo
Betaine has been shown to improve athletic performance, Effect of betaine supplementation on power performance and fatigue https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2651845 The results of this study indicates that two weeks of betaine ingestion can significantly improve muscle endurance in a lower body workout by increasing the number of repetitions performed in the squat exercise, as well as improve the quality of the workout by improving the number of repetitions performed at 90% of the subject's maximal mean and peak power outputs
Treatments that may not have been tried by others include: low-dose oral interferon alpha, LL-37 plus BPC-157, and inosine plus DMAE
Also for consideration in Improving Energy
MitoQ (https://www.mitoq.com) is a mitochondrially-targeted form of Q10. There is a lot of published research https://www.google.com/search?q=MitoQ+++site:www.ncbi.nlm.nih.gov on MitoQ.
M.E., CFS patient cigana https://forums.phoenixrising.me/threads/significant-improvement-on-mitoq.35238 finds that MitoQ significantly decreases his fatigue levels. He speculates his genetic A16V (rs4880) +/+ mutation, which results in lower levels of the mitochondrial antioxidant Mn-SOD, may explain why he gets substantial benefit from MitoQ. So those with an A16V +/+ mutation might consider trying MitoQ. However, later https://forums.phoenixrising.me/threads/significant-improvement-on-mitoq.35238/page-5#post-894094 he concluded that this energy boost only appeared when he took GcMAF at the same time as MitoQ.
Dichloroacetate in M.E., CFS studies was found to stimulate mitochondrial energy metabolism, and improve fatigue, brain fog and pain in about one-third of patients (but the study found those with comorbid autoimmune conditions are less likely to respond to DCA). Refs: 1 (https://www.ncbi.nlm.nih.gov/pubmed/29602463) 2 (https://www.ncbi.nlm.nih.gov/pubmed/30220343) See these tips (https://forums.phoenixrising.me/threads/metabolic-profiling-indicates-impaired-pyruvate-dehydrogenase-function-in-myalgic-encephalopathy-cfs.48446/page-4#post-797031) for avoiding the possible neuropathy side effects of DCA.
M.E., CFS patient (https://forums.phoenixrising.me/threads/tried-dichloroacetate-great-energy-return-but-chemical-taste-to-it.55719 XenForo experienced "a lot more energy" from DCA.
Cellfood (Deuterium Sulfate)
The active ingredient in Cellfood is deuterium sulfate, a form of sulfuric acid based on the hydrogen isotope deuterium (formula D2SO4). Deuterium sulfate is claimed (https://forums.phoenixrising.me/threads/good-reaction-to-cellfood-may-be-oxygenating-the-body-helping-immune-system-apparently-boosted-thyroid-now-helping-stroke-patient.79531/post-2273092) to have an enzymatic action which improves tissue oxygenation and reduces oxidative stress.
ME/CFS patient (https://forums.phoenixrising.me/threads/good-reaction-to-cellfood-may-be-oxygenating-the-body-helping-immune-system-apparently-boosted-thyroid-now-helping-stroke-patient.79531 Mary found the supplement Cellfood 10 drops three times daily increased her energy.
Improving Brain Fog
Vitamin B12 Injections / Transdermal B12 Oils
ME/CFS patient (https://forums.phoenixrising.me/threads/very-noticeable-improvements-in-brain-fog-using-dr-greg-russell-joness-transdermal-b12-oils-which-provide-a-similar-dose-to-b12-injections.75317 Hip found the B12 transdermal oils formulated by Dr Greg Russell-Jones in Australia help improve brain fog.
ME/CFS patient (https://www.healthrising.org/forums/threads/centrophenoxine-to-boost-acetylcholine.5191/#post-26927 Hip found piracetam 800 mg daily helps improve brain fog.
Improving Sound or Light Sensitivity
Very Low-Dose Amisulpride
ME/CFS patient (https://forums.phoenixrising.me/threads/amisulpride-%E2%80%94-a-multipurpose-drug-for-me-cfs.20964 Hip finds the dopamine system stabilizer drug amisulpride in very low-doses reduces sound sensitivity (hyperacusis), and has several other beneficial effects on M.E., CFS symptoms.
Improving Emotional/Stress Sensitivity
Hydrogen-rich water is made by dissolving hydrogen gas into water under pressure. HRW known to stimulate the release of the hormone ghrelin, which in turn stimulates the hypothalamus. The H2 molecule within HRW is also an antioxidant.
ME/CFS patient (https://forums.phoenixrising.me/threads/help-please.55987/#post-2182377 Hip found hydrogen-rich water noticeably reduces the emotional sensitivity / stress sensitivity symptom of M.E., CFS.
Improving Gut Health, IBS and SIBO
Chloramine is a disinfectant added to the drinking water in some regions. Chloramine can be irritant to the mucous membranes. Note that chloramine is not the same as chlorine, and carbon water filters do not remove chloramine.
M.E., CFS patient (https://forums.phoenixrising.me/threads/ibs-much-improved-after-removing-chloramine-from-my-tap-drinking-water-not-the-same-as-chlorine-which-is-not-removed-by-carbon-filters.21735 Hip substantially improved his IBS-D by removing chloramines from his tap drinking water, which is done by adding a pinch of ascorbic acid (vitamin C) powder to the water, as this reacts with and neutralizes the chloramine.
Improving the "Wired but Tired" Hyperarousal
Useful thread: Five ways to reduce your M.E., CFS "wired but tired" hyperaroused brain state (https://forums.phoenixrising.me/threads/five-ways-to-reduce-your-me-cfs-wired-but-tired-hyperaroused-brain-state.44269
M.E., CFS patient (https://forums.phoenixrising.me/threads/completely-eliminated-my-severe-anxiety-symptoms-with-three-supplements.18369 Hip was able to eliminate his moderate-to-severe generalized anxiety disorder with a set of supplements including N-acetyl-glucosamine (NAG). Many other M.E., CFS patients with anxiety who tried these supplements also observed a major reduction in anxiety levels, so this is a tried and tested treatment.
Prebiotics are food which feed friendly bacteria in the gut, but which bad bacteria cannot eat.
M.E., CFS patient (https://forums.phoenixrising.me/threads/the-wonders-of-prebiotics.6740 Hip found prebiotics such as inulin and FOS greatly reduced anxiety levels and improved mood.
M.E., CFS patient (https://forums.phoenixrising.me/threads/all-you-st-johns-worters.51108/#post-843711 Hip finds Spanish saffron 100 mg quite helpful for depression. Antidepressant effects kick in within an hour or so of taking it. One systematic review (https://www.ncbi.nlm.nih.gov/pubmed/25384672) found saffron to be as effective as standard pharmaceutical drugs. But watch out for fake saffron (https://forums.phoenixrising.me/threads/starting-psychotherapy.62404/page-2#post-1016461).
Treating Headaches or Migraines
Trimetazidine is a drug which improves myocardial glucose utilization.
M.E., CFS patient (https://forums.phoenixrising.me/threads/headache-treatment-trimetazidine-nicely-dissipates-my-3-day-headaches-within-12-hours.75953 Hip finds a single dose of trimetazidine 40 mg eliminates his normally 3-day long headaches within 12 hours, and if taken at the initial signs of headache, prevent the headache from manifesting in the first place.
M.E., CFS patient (https://forums.phoenixrising.me/threads/cbd-oil-anyone-tried-it-its-legal-now.27487/#post-423870) Iquitos finds taking 15 drops of cannabidiol (CBD) oil allow him to sleep much better.
M.E., CFS patient (https://forums.phoenixrising.me/threads/sleep-cycle-inversion-awake-at-night-sleeping-during-day-a-simple-technique-fixed-this-for-me.34735 Hip finds taking melatonin 2 hours before planning to go to bed helps get him to sleep, and helps prevent the sleep cycle inversion of M.E., CFS (where you are awake very late at night, and sleeping during day), and stops his non-24 (where you keep going to bed later and later as the days progress).
M.E., CFS patient (https://forums.phoenixrising.me/threads/pem-yourself-to-sleep-simple-technique-to-get-to-sleep-when-your-brain-is-too-wired.62991 Hip finds when you are go to bed but find you are still awake an hour or so later, and cannot get to sleep, getting out of bed and performing 80 squats in rapid succession (which takes about 80 seconds) in order to exhaust the leg muscles and generate some lactate, is a remarkably effective way (almost infallible) of getting to sleep. After performing the squats and going back to be, he finds he then goes to sleep within 5 minutes.
M.E., CFS patient https://forums.phoenixrising.me/threads/anyone-else-have-a-circadian-rhythm-disorder.85666/post-2368853 SpiralOut finds when using Luminette glasses https://www.myluminette.com for several hours daily, which provide the equivalent of 10,000 lux of light to the eyes, it completely fixes his non-24 sleep issues (non-24 is where each day you go to bed later than the day before, because your circadian rhythm does not match the normal daily 24 hour cycle
Improving the "Molasses" Heavy Limbs Feeling
Far Infrared Heat
M.E., CFS patient (https://forums.phoenixrising.me/threads/treating-the-molasses-heavy-limbs-feeling-of-me-cfs-using-far-infrared-heat-on-the-spine.75699 vv finds far infrared heat on his back for several hours a day reduces the heavy limb feeling of M.E., CFS, perhaps by its anti-inflammatory effects on the spine (as he speculates spinal ganglion inflammation might cause the heavy limb
Over-the-Counter Treatments for M.E., CFS (Non Prescription https://livingwithchronicfatiguesyndrome.wordpress.com
Benfotiamine and Allithiamine These are alternate versions of high dose thiamine that may be better absorbed. Anecdotally, many patients have improved as a result of these treatments. Studies have shown that a thiamine deficiency can causes similar symptoms to M.E., CFS and these symptoms can be resolved (especially fatigue) after treatment with high doses of thiamine. See ‘Thiamine- High Dose’ for more information about thiamine and M.E., CFS Few side effects have been reported by those taking Benfotiamine and Allithiamine. It is difficult to determine a standard quantity for these ‘high dose’ treatments as patients have tried a wide range of doses. Anecdotally, M.E., CFS patients online have commonly taken either 50-200mg of Allithiamine or 300-600mg of Benfotiamine
Over-the-Counter Treatments for M.E., CFS (Non Prescription https://livingwithchronicfatiguesyndrome.wordpress.com
Artesunate Artesunate is a derivation of the herb artemisia and commonly used in the non-ME/CFS realm for its anti-malarial properties. It may benefit M.E., CFS patients due to its potential anti-herpesvirus and anti-CMV effects. Using Artesunate, Dr. Cheney has doubled his number of M.E., CFS cures and 75% of patients have shown some level of improvement using this treatment. Part of Dr. Cheney’s protocol involves the Artesunate being used concurrently with the herb wormwood.
Some M.E., CFS patients taking Artesunate have reported dizziness or tiredness. Dr. Cheney recommends the brand Hepasunate be taken on three days of the week. As opposed to swallowing the capsule, he encourages patients to place half the contents of the capsule under their tongue for a period of a minute followed by swishing it around their mouth and spitting the remnants out.
Biotin Biotin deficiency has many shared features with M.E., CFS. Several anecdotal accounts are online that mention Biotin greatly benefiting M.E., CFS patients. High dose Biotin is currently being studied, with some promising results, as a treatment in progressive multiple sclerosis.
Biotin is normally a fairly safe treatment with few side effects noted. The dosages used by M.E., CFS patients have often been in the 300mcg-1000mcg range. A neurologist from Massachusetts recommended that an M.E., CFS patient take; 100mg of B1 (twice a day), 100mg of B2 and the high dosage of 5000mcg of Biotin for treating post-exertional malaise. This treatment benefited the patient.
Butyrate Butyrate may improve M.E., CFS patients’ gut symptoms by creating T-cells in the digestive system. It may reduce cognitive symptoms, lower inflammation and enhance the immune system. Studies have shown that butyrate may be beneficial in treating ulcerative colitis and Crohn’s disease symptoms.
Butyrate is low in side effects and 1-2 capsules are usually taken with each meal.
Coenzyme Q10 Coenzyme Q10 is a treatment that when taken with L-Carnitine, has superior effects. These treatments both enhance mitochondrial function and hence may benefit M.E., CFS patients. The active version of Coenzyme Q10, Ubiquinol is often preferred. A study found a close association between levels of Coenzyme Q10 and severity of M.E., CFS. Dr. Lapp has found that about half of his patients benefit from Coenzyme Q10 generally by around 10%-15%. A University of Iowa study rated Coenzyme Q10 as the leading treatment for M.E., CFS with 69% of patients reporting it as beneficial. A study with 20 M.E., CFS patients (80% of those deficient in Coenzyme Q10) found 90% had a reduction or complete disappearance of symptoms after 3 months of taking Coenzyme Q10.
There is a theory that taking Coenzyme Q10 as two doses throughout the day can increase its efficacy. There also exists a sublingual version of Coenzyme Q10. Alongside the energy boost that Coenzyme Q10 may provide, it occasionally causes insomnia. Those with diabetes or other types of hypoglycemia should be wary of Coenzyme Q10 as it can reduce blood sugar levels. The daily dose that is used generally varies from 50mg to 300mg.
Cordyceps Sinensis and Shiitake Mushroom Cordyceps Sinensis may enhance the immune system. A study on healthy subjects found ‘CordyMax’ increased aerobic capacity, reduced fatigue and lowered diastolic blood pressure. Another treatment that is similar to Cordyseps Sinensis is Shiitake mushroom which may increase interferon levels and have antiviral and immunomodulatory benefits. Anecdotally, numerous M.E., CFS patients have reported more energy after taking versions of Shiitake mushroom supplements. A Japanese study that used injected ‘Lentinan’ taken from Shiitake mushroom on M.E., CFS subjects found patients’ natural killer cell function increased. Recovery of the majority of patients studied took several months. Another study injected Lentinan into M.E., CFS patients and found that 6 months of injections was required to normalise natural killer cell activity. Lentinan doesn’t get absorbed orally hence has to be given as an injection. Maitake and Reishi are another two of the many types of mushroom supplements used by M.E., CFS patients. A study found that oral Maitake and oral Shiitake mushroom in combination significantly increased natural killer cell function in mice.
Most people that take Cordyceps Sinensis experience no side effects however rarely diarrhea and nausea can occur transiently. In the aforementioned study, subjects took 333mg of Cordymax three times per day with meals. Shiitake mushroom supplements may cause gastrointestinal symptoms or a rash. Shiitake mushroom supplements are sometimes used at daily doses between 400mg-1500mg, with this total daily dose broken up into smaller doses taken several times a day.
Curcumin Curcumin is a derivation of turmeric. A study found that curcumin benefited mice with ‘CFS.’ Dr De Meirleir has recommended this treatment to some patients. It may reduce cognitive impairment, improve HPA axis dysfunction and have anti-inflammatory and antioxidant properties. A study found that when Curcumin is supplemented with either; olive oil, stearic acid or choline, the brain and blood absorption levels of Curcumin dramatically increase.
Side effects from Curcumin usage are rare however if they do occur are generally of a gastrointestinal nature. Dosages used generally fall within the 500mg-1000mg range. Those with illnesses other than M.E., CFS have ventured up to 8 grams of Curcumin a day. The absorption levels of the specific type of Curcumin used are relevant when determining a dosage.
D-Ribose This treatment may improve mitochondrial function and supply the body with energy. A pilot study found that 66% of M.E., CFS patients significantly improved while taking D-Ribose. A follow up study involved 203 M.E., CFS and Fibromyalgia patients that completed three weeks of treatment. The patients’ experienced: an average energy increase of 61%, a 37% improvement in well-being, a 30% increase in mental clarity, a 29% enhancement in sleep and a 16% reduction in pain.
D-Ribose shouldn’t be used by those with gout as it may raise uric acid levels. Side effects can include nausea, headache and sleepiness. In the above D-Ribose studies, patients took 5 grams of D-Ribose, three times per day. It may be wise to start at a lower dose, to gauge any potential side effects.
Energy Revitalization System This formulation contains a broad range of nutrients including a B vitamin complex. It also contains various amino acids, choline, malic acid and biotin. It was developed by Dr. Teitelbaum and it is claimed that it can replace taking 30 tablets in the one formulation. A number of the ingredients probably aren’t of a high enough dosage to have a therapeutic effect on some patients although other parts of this formulation contain reasonable dosages. Many M.E., CFS specialists recommend that patients take a multi-vitamin tablet including Dr. Cheney who labels a quality multi-vitamin as “essential.” Energy Revitalization System isn’t a multi-vitamin tablet but rather a powder containing eclectic ingredients targeted at improving patients’ energy.
A small number of patients taking this treatment experience gastrointestinal symptoms. The typical dosage is one scoop (20.3 grams) per day.
Epicor Studies have shown that Epicor may improve natural killer cell function (which is almost inevitably low in M.E., CFS patients) up to 4-fold. A similar substance, beta-glucan, may regulate other parts of the immune system too. A study that induced mice with ‘CFS’ found that beta-glucan significantly improved the symptoms of the mice.
Epicor and beta-glucan are considered to be fairly safe supplements. The standard dosing of Epicor and beta-glucan ranges from 200mg to 3000mg.
Essential fatty acids (EFA) Essential fatty acids include such substances as; flaxseed oil, evening primrose oil and fish oil. The first study to examine EFA usage in M.E., CFS patients provided patients with both omega-3 and omega-6, resulting in 85% of the patients showing at least moderate improvement. A second study on M.E., CFS patients taking EFA found 90% of patients experiencing a reduction in symptoms. Another study that provided patients with eicosapentaenoic acid (EPA) found that all four patients improved while the same patients didn’t respond to a placebo.
Heartburn and gastrointestinal symptoms are some of the most common side effects of fish oil. The recommended dosing of EFA varies depending on what type of EFA product is being used. Fish oil is often used at 3000-4000 mg per day.
Far Infrared Sauna A study on 13 M.E., CFS patients using a Far Infrared Sauna found two patients dramatically improve. The other 11 M.E., CFS patients had a reduction in physical symptoms, lower levels of pain and reduced fatigue. Another study monitored the effects of Far Infrared Saunas on 10 M.E., CFS patients. Average fatigue levels reduced on a 10 point scale from 6.7 to 4.8.
It is recommended to hydrate after a Far Infrared Sauna session with electrolytes. Also, many people shower when a session is completed to remove the excess sweat from their body. The Far Infrared Sauna user should also be cognisant of the signs of heat stroke. M.E., CFS patients that do trial this therapy should start off for only a short period of time in the Far Infrared Sauna before gradually increasing the time period if they don’t experience side effects. Some patients slowly build up to having a maximum 15-30 minute session per day.
Fucoidan There is limited information online pertaining to M.E., CFS patients taking Fucoidan. Despite this, over 850 studies on Pubmed detail many effects that may potentially benefit M.E., CFS patients. These include; immune modulation, antiviral, anticoagulant and anti-inflammatory effects. A study found that Fucoidan reduced the amount of fatigue experienced by cancer patients.
Fucoidan is widely considered to be a safe treatment. Some people have experienced transient diarrhea while taking this treatment. Anticoagulants shouldn’t be used while a patient in on Fucoidan. Studies have found that the efficacy of Fucoidan is largely dose dependant. An osteoarthritis study determined that 1000mg per day had a much better effect on subjects that 100mg per day. Fucoidan has been largely untried by the M.E., CFS patient community hence appropriate doses are hard to establish.
Germanium A 1988 paper reported that Dr. Greenberg found 25% of his M.E., CFS patients showing “substantial clinical improvement” as a result of taking 300mg of Germanium a day. Dr. Maslin in the same paper found 150mg-300mg daily was sufficient to provide significant relief from M.E., CFS symptoms in the majority of his patients and found 20% of patients to be non-responders. Dr. Anderson found half of his patients responding favourably to Germanium with doses for some patients needing to be as high as 1 gram.
If patients are keen to take high doses of Germanium, they should have regular tests to monitor kidney function. It may be wise for M.E., CFS patients to start Germanium at a low dosage and gradually build up to 300mg per day. As the above specialists’ reports indicate, some patients may need high doses, up to 1 gram a day to experience the effects of this treatment. The safer, medicinal form of Germanium is known as organic Germanium-132, the inorganic form is not recommended for supplemental use.
Hawthorn Dr. Cheney has been an advocate of Hawthorn and did recommend its use in tandem with the prescription injectable, Nexavir. Hawthorn may improve the heart’s ability to pump blood around the body. Dr. Cheney trialled it on some of his patient and noted that it improved their cardiac output.
In low doses, Hawthorn is non-toxic. Side effects are fairly uncommon but may include; nausea, headaches and palpitations. Doses used generally fall between 200mg-1000mg.
Inosine The supplement, Inosine, is the active ingredient in prescription medication ‘Isoprinosine.’ A study on the prescription version of this treatment found benefits in 6 out of 10 M.E., CFS patients. Dr. De Meirleir believes the supplement Inosine is as effective as the prescription formulation. Inosine is antiviral and an immunomodulator. Dr. Sharp has labelled its prescription cousin as “One of the safest, most cost effective and helpful drugs at our (ME/CFS doctors’) disposal.”
Inosine is fairly low in side effects although some patients have experienced insomnia and headaches. Inosine can raise uric acid levels so shouldn’t be taken by those with gout. M.E., CFS patients commonly take inosine at a dosage of 500mg three times a day but only on five days of the week. The treatment isn’t taken on 2 consecutive days each week such as the weekend. A pulsing dosing structure of this treatment is recommended so the patient doesn’t build up a tolerance to the Inosine.
IP-6 (Inositol Hexaphosphate) The main mechanism of this supplement is to increase natural killer cell activity which is inevitably low in M.E., CFS patients. Dr. Conley reports that he has used IP-6 to increase natural killer cell function in dozens of cases of M.E., CFS. He notes one patient who went from being unable to work to working a 32-40 hour a week job as a result of taking IP-6. A related treatment that some patients use is Inositol. Inositol may be useful against insomnia and depression.
IP-6 is generally low in side effects with the most common being gastrointestinal. It is recommended that this supplement be taken on an empty stomach and twice a day. Some M.E., CFS patients start with a lower dose of IP-6 such as 500mg and gradually increase this dosage to a total daily dose between 2-8 grams. The dose is taken at two separate occasions each day.
L-Carnitine This amino acid could potentially benefit M.E., CFS patients due to improving mitochondrial function. Acetyl-L-Carnitine may be better absorbed by the body than standard L-Carnitine. When taken in tandem with Coenzyme Q10, the positive effects may be magnified. A research centre found that out of 150 M.E., CFS patients taking L-Carnitine, 69% noted an improvement in symptoms. A study found 12 out of 18 M.E., CFS patients noting a statistically significant reduction in fatigue as a result of taking L-Carnitine. Another study found that 59% of M.E., CFS patients taking Acetyl-L-Carnitine improved, 63% taking Propionyl-L-Carnitine improved but only 37% taking both treatments improved. The study noted that Acetyl-L-Carnitine mainly reduced mental fatigue while Propionyl-L-Carnitine was more likely to lower general fatigue. Studies have found M.E., CFS patients low in cellular acylcarnitine levels. Deficiency of acylcarnitine can produce symptoms similar to M.E., CFS. A study also found that as acylcarnitine levels improved in M.E., CFS patients, symptoms improved.
L-Carnitine should be avoided by those M.E., CFS patients with low thyroid. If side effects do occur, they may be of a gastrointestinal nature. L-Carnitine should be taken with food and recommended dosages range from 1000mg to 2000mg per day. Patients often start off with a lower dose before increasing the dosage if no side effects occur.
L-Serine L-Serine is an amino acid that former M.E., CFS specialist Dr. Buttfield believes should help 60% of CFS patients significantly. Dr. Vallings found that 5/6 M.E., CFS patients benefited from L-Serine supplementation. A study found that M.E., CFS patients had “significantly reduced” levels of L-Serine in their urine when compared to healthy controls. The study continued on to note that those M.E., CFS patients with low urinary L-Serine levels had mainly neurological symptoms and high levels of pain.
L-Serine side effects are fairly rare but may consist of sleep disturbance or gastrointestinal symptoms. Dr. Buttfield’s protocol consisted of beginning patients on 500mg of L-Serine in the morning and increasing this dosage to 2 grams per day.
Magnesium The majority of M.E., CFS specialists incorporate either oral magnesium or magnesium injections into their treatment protocol. Dr. Cheney believes magnesium can benefit M.E., CFS patients due to; enhancing energy, improving sleep and lowering muscle pain. He advocates oral magnesium glycinate due to its ability to cross the blood-brain barrier and also be absorbed into cells. Other M.E., CFS specialists prefer magnesium citrate due to its possible higher levels of bodily absorption.
Another facet of Dr. Cheney’s advocacy of magnesium glycinate is that this treatment is less likely to cause gastrointestinal symptoms. Other forms of magnesium are more likely to cause diarrhea. Magnesium should be taken with food and dosages should begin at low levels before increasing to the 200mg-400mg range.
NADH This treatment is a form of coenzyme 1. A study found that 31% of M.E., CFS patients improved while taking NADH in comparison to 8% of the control group improving. 18 out of 25 (72%) of M.E., CFS patients enrolled in the longer follow up version of this study noted improvements. There is some evidence that it may take up to 6 months before certain M.E., CFS patients respond to this treatment.
Side effects tend to be rare but mild overstimulation is possible. NADH should be taken on an empty stomach, before breakfast. Recommended dosages range from 5mg up to 20mg per day.
Naphazoline HCL Dr. Goldstein, who was an M.E., CFS specialist, always tried Naphazoline HCL 0.1% eye drops as an initial treatment when a patient stepped into his office. He claimed that 20% of patients benefited from this treatment and in those patient who benefited, the benefits were remarkable and immediate. He theorised that those patients in the cohort of having severe anxiety were the most likely to respond. In some countries such as Australia, Naphazoline HCL is available over-the-counter.
The delivery process of this treatment involves placing a drop in each eye. Due to the nature of Naphazoline HCL, any benefits will be felt almost instantaneously. One of the most common side effects is local irritation. The occurrence of more serious side effects from this treatment is unlikely but may include; dizziness, headache or nausea. The dosage of the Naphazoline HCL eye drops used should be 0.1% and not 0.01%.
NeuroProtek NeuroProtek contains a number of eclectic supplements; luteolin, quercetin and rutin in tandem with the antioxidant, olive kernel oil. Anecdotally, many M.E., CFS patients have reported a reduction in cognitive impairment as a result of taking NeuroProtek. A drawback is that often the cognitive impairment returns when the patient ceases taking the treatment. Neuroprotek may be able to normalise mast cell function.
Side effects of NeuroProtek are rare however caution is advised if the patient is concurrently taking drugs that are metabolised by the liver as NeuroProtek may alter the blood levels of these substances. The dosage of NeuroProtek is dependent on the patient’s weight, with a daily dose being 2 capsules taken per 20kg (44lbs) of body weight. The maximum dose, regardless of body weight is 8 capsules per day. Capsules should be taken with food and the dosage spread out across the day.
Nicotine Gum Former M.E., CFS specialist, Dr. Goldstein wrote fondly of Nicotine Gum as a treatment for M.E., CFS. He noted that patients experienced an improvement in energy, cognition and mood as a result of this treatment although did caution that some patients may get worse. It potentially benefits M.E., CFS patients due to inhibiting brain inflammation. Several patients have noted an improvement in cognition and increase in energy as a result of this treatment.
Nicotine Gum can be detrimental to those with Crohn’s disease. Dr. Goldstein stipulates that occasional patients will have a worsening of M.E., CFS symptoms as a result of taking this treatment. If a patient does improve on this treatment, benefit will be noted soon after taking the gum. One M.E., CFS patient took a week before experience more energy. Nicotine may increase blood pressure which may be detrimental if an M.E., CFS patient has high blood pressure. Longer term use of nicotine is also conducive to health problems such as addiction, periodontal problems and hair loss. If this treatment is trialled, a low starting dose is imperative.
Oxymatrine (Equilibrant) Equilibrant is Dr Chia’s own formulation of Oxymatrine that also contains; Astragalus, Olive Leaf, Liquorice and Shiitake Mushroom. Oxymatrine, derived from the Sophora plant, is thought to be effective against enteroviruses. Dr. Chia has trialled Oxymatrine on 500 M.E., CFS patients and has found approximately 52% of his patients improve as a result of taking this treatment.
Common side effects of Oxymatrine can include headache, fatigue or an increase in M.E., CFS symptoms. Oxymatrine should be avoided by those with autoimmune tendencies or seizure disorders. A low starting dose of Oxymatrine is essential for M.E., CFS patients and the dosage should only be titrated upwards after a week. The maximum dosage of this treatment is in the realm of 200mg taken in the morning and 200mg taken in the afternoon. Dr. Chia’s Equilibrant doesn’t list the amount of Oxymatrine in the product however the recommended initial dosages of this product is 1 tablet per day for 1-2 weeks. This is followed by a gradual increase of dose, with patients taking up to a maximum of 6 tablets per day.
Piracetam Piracetam is a supplement that specifically targets enhancing cognition. It may also benefit M.E., CFS patients due to increasing blood circulation. A study that gave fatigued patients (not necessarily those with M.E., CFS) Piracetam and Cinnarizine (an antihistamine) found that patients’ physical fatigue significantly reduced. There exist several similar products to Piracetam that may also benefit M.E., CFS patients and these are classed as nootropics.
In non-ME/CFS studies, Piracetam has rarely caused side effects. One study ascertained that 12% of subjects experienced sleep disturbances while taking this treatment. If a headache does occur while a patient is taking Piracetam, Choline may be a beneficial tandem treatment. Anecdotally some M.E., CFS patients have stated that they can only tolerate a small dose of Piracetam- in the 100mg range. Other patients even find this dose too stimulating. Starting at the normally recommended dosage is not recommended for those with M.E., CFS. The dosage of Piracetam used for other indications can be up to 20 grams per day. M.E., CFS patients generally require much smaller dosages in the 0.8-4.8 gram range. This dosage is spread out across the day and taken at three different occasions at 8 hour intervals. Different countries have various classifications on Piracetam pertaining to its over-the-counter or prescription status.
Post-Exertional Malaise Treatments
This debilitating and central symptom of M.E., CFS is often overlooked by doctors. There exists a range of treatment worth trying that I’ve written about in the attached link that benefit patients to varying degrees once in a ‘crashed’ state. These include; Hydralyte iceblocks, liquorice, D-Ribose, electrolyte solutions, leg elevation, massage, meditation, warm baths or cold baths.
ProBoost Also known as thymic protein A, a study found 16 out of 23 M.E., CFS patients experienced a normalisation of immune function as a result of taking this treatment. There was a corresponding improvement in the clinical M.E., CFS symptoms of patients in this study. Another study examined the use of thymic protein A in 6 M.E., CFS patients with high EBV titre levels. Patients experienced an increase in energy and required less sleep to function. There exist several reports online of patients greatly benefiting from ProBoost. Many M.E., CFS patients who feel run down or on the precipice of a virus take ProBoost.
Side effects as a result of taking ProBoost are rare with occasional patients reporting mild, flu like symptoms when they start this treatment. The dosage used varies depending on whether the patient is taking it as a maintenance dosage- 1 packet a day or are fighting off an acute infection- 3 packets
Propax with NT Factor This product contains a number of treatments all in the one formulation. Many of these lone treatments are individually used by M.E., CFS patients including; quercetin, L-Glutathione, NAC, grape seed extract, various B supplement and NT factor. A study that was ominously run by the company that produces this product found that those with the symptom of severe fatigue (not necessarily M.E., CFS) experienced a reduction in fatigue by on average 40%. Another study found Propax with NT Factor reduced the fatigue experienced by cancer patients. Propax with NT Factor is potentially a form of ‘lipid replacement therapy’. This entails repairing damage to a patient’s mitochondrial membranes. A study examined lipid replacement therapy’s efficacy on ‘moderately fatigued patients.’ As subjects mitochondrial function improved while taking lipid replacement therapy, their fatigue proportionally reduced.
Propax with NT Factor is considered to be a safe product with gastrointestinal symptoms rare but possible. It is recommended that the packet be consumed 2-3 times a day. The tablets in the formulation can be taken with or without food and the soft gel capsule that contains omega-3, EPA and DHA should be taken with food.
Ranitidine Ranitidine is a treatment that former M.E., CFS specialist Dr. Goldstein found benefited those with infectious mononucleosis. He then began using this treatment on M.E., CFS patients with some success. If Ranitidine is not available over the counter in a country, often the alternative Cimetidine is. Dr. Goldstein has found that about 90% of mononucleosis cases respond to Cimetidine. When an M.E., CFS patient does respond to one of these drugs, Dr. Goldstein notes that the recovery is remarkable. Approximately 20% of Dr. Goldstein’s M.E., CFS patients respond to this type of drug.
Stimulation and headaches are two of the most common side effects of Ranitidine treatment. Dr. Goldstein recommends that 150mg of Ranitidine be taken twice a day. The alternative, Cimetidine, should be taken at 300-400mg. Dr. Goldstein has written that it may take from one hour to one week before a patient notices whether this treatment is working for them.
Selenium (high dose) Numerous patients online have noted great benefit from this treatment. The symptoms that have generally improved in these patients are cognitive ability and energy. High dose Selenium may benefit M.E., CFS patients due to its antiviral and strong antioxidant properties.
Taking high dose Selenium for more than several months is not recommended as it may increase the chance of toxicity, although Selenium toxicity generally occurs at higher doses (the 2400-3000mcg range). Overdosing on Selenium can cause numerous symptoms. The recommended dosage of the high dose Selenium protocol is between 400-800mcg a day. Some M.E., CFS patients have noted side effects if they increase the dosage past 400mcg. The Selenium should be taken on an empty stomach to increase absorption. Yeast-free selenomethionine is thought to be the best form of Selenium to take although other forms may benefit certain patients more effectively.
In this link I present various M.E., CFS experts’ opinions on sleep aids including many over-the-counter formulations.
Sulforaphane This compound may benefit M.E., CFS patients due to shifting the immune system from Th2 dominant to Th1 dominant. Sulforaphane is also an antioxidant, neuroprotective, defensive against oxidative stress and may improve mitochondrial function. It has been studied in autism and benefited those who took it through a mechanism the authors suspected may be due to inducing a “fever effect.”
In the aforementioned autism study, those taking Sulforaphane experienced a tiny increase in their liver enzymes. There is quite some conjecture about the amount of Sulforaphane the body absorbs. This is partly due to the possible discrepancy between the specific forms of Sulforaphane ingested. It is therefore difficult to pinpoint a commonly used dosage.
Thiamine (high dose) Anecdotally, some M.E., CFS patients have reported benefits from taking high doses of thiamine (vitamin B1). A small study of Fibromyalgia patients found all 3 patients benefiting from high dose thiamine treatment. Thiamine deficiency (which can be caused by a defective enzyme system) can produce similar symptoms to M.E., CFS. A study found that fatigue associated with ulcerative colitis and Crohn’s disease can be caused by a thiamine deficiency and that high doses of thiamine resolved this fatigue. Despite this, across multiple studies examining various disease state, patients have normal blood thiamine levels yet improve significantly when taking high dose thiamine. A study has speculated that this may be due to low cellular thiamine transportation or enzymatic problems.
The three Fibromyalgia patients studied experienced no side effects as a result of high dose thiamine. Patients with other disease states taking high dose thiamine have reported insomnia and tachycardia. In the Fibromyalgia- high dose thiamine study, patients started at 600mg of thiamine a day and gradually increased this dose. Abrupt improvement was seen when patients reached 1800mg a day. Anecdotally, M.E., CFS patients that have responded to high dose thiamine seem to have an optimal dose that varies from patient to patient. The challenge is to find this optimal dose without exceeding it and experiencing any side effects. If a patient doesn’t respond to thiamine, they may benefit from Benfotiamine or Allithiamine, which may be better absorbed.
Vagus Nerve Stimulation
Dr. VanElzakker has theorised that the vagus nerve being infected could explain many of the features of M.E., CFS. The vagus nerve has been implicated in several other illnesses such as epilepsy, with stimulation of the nerve proving beneficial. A study implanted Fibromyalgia patients with a vagus nerve stimulation device with the authors concluding that it was a “useful adjunct treatment.” A less invasive measure to stimulate the vagus nerve involves attaching a TENS machine’s electrode pads to the tragus part of the ear.
Vitamin D and D3
Vitamin D deficiency can often be a secondary problem that arises when M.E., CFS patients are unable to get proper supplementation from sunlight. A retroactive study of 221 M.E., CFS patients found that Vitamin D levels were “moderately to severely suboptimal in CFS patients.” Numerous patients online have benefited to some degree from Vitamin D supplementation. Dr. Lapp recommends Vitamin D3 to almost all of his M.E., CFS patients.
Vitamin D side effects are rare at normal doses yet high Vitamin D may cause weakness, headaches or gastrointestinal symptoms. Some patients gain Vitamin D from sunlight or through daily lower level supplementation in the 1000-2000IU range that is available over-the-counter. To definitively raise Vitamin D levels, a single or once a month for several months prescription dose may be required. This may on occasions be as high as 100,000IU. Blood tests can monitor Vitamin D levels yet there is some conjecture about what levels are considered suboptimal. Studies have suggested that those with any form of chronic illness should try and maintain higher vitamin D levels than the healthy population
Factors Contributing to Chronic Fatigue After Traumatic Brain Injury https://pubmed.ncbi.nlm.nih.gov/22190008
Rapid correction of serum 25-OHD levels can be easily achieved with oral administration of high-dose cholecalciferol
Additional nutritional supplements for consideration
Alpha Ketoglutarate (AKG)
Alpha Lipoic Acid
Carnitine, Glutamine, Lysine, Taurine
Grape seed extract, Pycnogenol, Quercetin
Butyric Acid (Butyrate)
CoQ10 (ubiquinone, ubiquinol)
Pregnenolone sulfate to help with symptoms
I was reading about how Pregnenolone sulfate, which is an over the counter supplement, was being used in a ME/CFS study and it's reaction upon or in conjunction with Natural Killer cells. To be honest the study was far beyond my comprehension and the researchers did more than administer the Pregnenolone sulfate by itself. But the article made me curious if anyone has tried Pregnenolone Sulfate for their fatigue?
According to verywellmind.com:
"Pregnenolone is a steroid hormone that plays a key role in the production of other steroid hormones, including progesterone, DHEA, and estrogen. The substance is found naturally in the body, but some people also take it in supplement form to help
keep memory sharp through the years."
Many years ago when I started with an Integrative MD the first test he did was to test DHEA levels, I was about 60 at the time....they were LOW and this is true as we age, we decline/deplete DHEA. So I've been taking DHEA for over 20 yrs and it's changed my life and kept me VITAL and too too bad every doc doesn't go there with their patients... Pregnenolone is a precursor to DHEA...so I'm guessing you are low in DHEA so why not start taking say 10mg day, it's OTC and go from there...eventually get your DHEA level tested.
Allopathic MD's really short change Everyone in getting to the root of issues.
I knew I posted about DHEA, it's a favorite topic of mine...it's another supplement that has been life changing.
Reminder: DHEA Restoration Therapy
I know there are smatterings of DHEA info around here but here is a reminder: I know supplementing with this DHEA for about 20 yrs has kept this 81 yr body younger and healthier. https://www.lifeextension.com/protocols/metabolic-health/dhea-restoration
I agree, we have been short changed and forced to be our own advocate. Hard to do when you feel like #$@! Thank goodness for groups like this. I see my primary dr in a few months. It would probably be a good idea to get tested. What changed for you when you added the DHEA? Did you have any side effects from taking it? I am prone to anxiety so don't like to rock the boat too much once I get it under control.
Read the benefits of getting DHEA levels optimal
Essential Fatty Acids
Fish Oil, Flaxseed Oil, Evening Primrose Oil, Borage Seed Oil
GABA (gamma aminobutyric acid)
Aloe vera, Astragalus, Chamomile, Echinacea, Garlic, Ginger, Gingko, Ginseng, Goldenseal, Gotu kola, Kava,
Licorice, Lomatium, Milk Thistle, St. John's Wort, Uva ursi, Valerian
Calcium, Magnesium, Selenium, Colloidal Silver, Zinc
LEM (shiitake), Maitake, Cordyceps
NAC (N-acetylcysteine )
SAMe (S-Adenosyl methionine)
Vitamin A, Beta-Carotene, Vitamin B12, Vitamin B6, Vitamin B Complex, Vitamin C, Vitamin D, Vitamin E and
Colostrom, Undenatured Whey, Probioplex
download chart below as pdf
Lithium may treat all 3 conditions. Lithium side effects can include fatigue. In some patients it has shown to combat fatigue. There are two types of medicinal Lithium Lithium is prescription and Lithium is otc. It may help CFS (page 3), TBIcf alttherapy (59) and OCD (68)
page 8 CFS > SUPPLEMENTS and NUTRITION
Click to save and explore large version of chart below
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Testing Laboratories, Treatment Centers, Specialists and Clinics
Testing for amount and kind of brain cells by evaluating R2t* signal from MRI scan
Hormone Replacement Therapy (HRT)
Disruption in Blood Brain Barrier and (mast cell or astrocyte) production cytokine