Is simple and cheap relief from ME/CFS and FM possible? If the experience of one blogger is representative it may be. National Fibromyalgia Association founder and ProHealth blogger Karen Lee Richards had fibromyalgia for almost 25 years before she stumbled on a simple and cheap remedy that worked for her.
A very small Italian fibromyalgia ‘study’ caught caught her eye. Three fibromyalgia patients reported decreases in fatigue and reductions in pain after taking high-dose thiamine (vitamin B-1). Karen contacted the Italian authors of the report, did some research on her own, and followed up on the small study with her own personal trial.
In a ProHealth blog two days ago this two-decade-plus fibromyalgia patient reported that by the seventh day of her high-dose B-1 trial she had so much energy that she “almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?” Pain reductions were modest, but her energy level was better than it had been in decades.
That’s HIGH-DOSE Thiamine Therapy
This is high-dose vitamin B-1 therapy. According to Medline the recommended daily thiamine dose for healthy people is 1-2mgs and 300mgs for people with ‘severe’ thiamine deficiency. The Italian group gave their patients (with normal thiamine blood levels) from 600 to 1,500 mgs of thiamine per day (depending on their body weight). The doctors observed an ‘all or nothing’ response, with no response being shown until the correct dose was found.
Side effects consisted of tachycardia and insomnia in a few patients which disappeared when the dose was lowered. The Mayo Clinic reports that thiamine is generally considered safe and relatively nontoxic, even at high doses. Dermatitis or more serious hypersensitivity reactions occur rarely. Large doses may cause drowsiness or muscle relaxation. Click here for more on side effects from the Mayo Clinic.
B-1 tablets are not always found in health food stores but inexpensive sources can readily be found online. Prohealth, for instance, sells enough B-1 for a month at the highest dose recommended, for $12.49 (500 mg/100 tablets). ( The level of B1 in B-complex mixtures is far too low to suffice. )
Antacids, diuretics, barbiturates, tobacco, alcohol and large amounts of coffee and tea (> 1 liter/day) can reduce thiamine absorption.
The Italian Connection
“Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.” Constantini et. al. 2013
Two Italian practitioners, Constantini and Pala, had noticed dramatic decreases in fatigue and other symptoms in their ulcerative colitis patients treated with high-dose B-1. (Thiamine is used to treat ulcerative colitis and other gastrointestinal disorders).
Check out these symptoms from one 51 year old patient with ulcerative colitis for 23 years: fatigue upon wakening, sleep disorders, anxiety, depression, mood fragility, memory loss, attention problems, stress intolerance, episodes of tachycardia, migraine, nausea, muscle weakness and cramps, burning foot pain, intolerance to cold, and dry skin. Her tachycardia, nerve pain and central nervous system symptoms suggested that thiamine deficiency might be present. She received 50 mgs of intramuscular thiamine for three days and 600 mgs of oral thiamine thereafter. After a couple of days her fatigue and other symptoms waned; after 20 days she was well.
After this happened with two more patients they felt they were onto something. A subsequent study of 12 ulcerative colitis and Crohn’s disease patients found high reductions in the low to moderate fatigue levels they were experiencing. (Only a few patients had fatigue similar to that typically experienced in ME/CFS.) Those results suggested to them that ‘mild’ thiamine deficiencies could be contributing to the pain and fatigue of a number of inflammatory and autoimmune disorders, and they moved on to fibromyalgia.
The three patient FM cohort found dramatic reductions in fatigue and pain occurred quickly (within a couple of days) after the correct dosage was found.
The Chronic Fatigue Syndrome/Fibromyalgia Connection
Early ME/CFS/FM studies suggest B-1 supplementation might be helpful. Reduced levels of three B-cell dependent enzymes including thiamine dependent transketolase in ME/CFS patients vs healthy controls prompted the authors of one study (including Simon Wessely) to report that “the data are consistent with functional efficiencies of pyridoxine, riboflavin and thiamine.”
Since dietary studies suggested poor diet could not be the cause, the authors suggested excessive vitamin loss, catabolism or high B requirements were probably responsible. They concluded that “More detailed studies of functional vitamin status in relation to clinical features of CFS (particularly central nervous system signs such as depression and memory impairment) are clearly indicated.”
The French Connection
Across the channel, studies done in the early 1990s by J. B. Eisinger, a French researcher, concluded that thiamine metabolism was impaired in fibromyalgia. Citing the irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome, and sleep disturbances, Eisinger published at least six studies on thiamine and fibromyalgia and/or chronic pain (most of which are not available electronically) in the early to mid 1990’s.
He concluded that the thiamine-dependent enzyme abnormalities he found in fibromyalgia were similar to those found in Wernicke-Korsakoff syndrome, a thiamine deficiency disorder associated with alcoholism. Thiamine deficiency is also found in Alzheimer’s and diabetes, and it can affect memory function.
Eisinger proposed that ‘complex thiamine abnormalities’ in FM could account for the “reduced nitric oxide (and impaired muscle relaxation and microcirculation) or glutathione (and muscle soreness), impaired glycolysis (and muscle fatigue), or even serotonin depletion (and decreased pain threshold) observed in FM.
Recently a review article suggested that undiagnosed thiamine deficiency is commonly misdiagnosed and primarily affects the central nervous system.
The Autonomic Nervous System Connection
The panoply of autonomic nervous system symptoms associated with thiamine deficiency (tachycardia, unstable pulse pressure, attention deficit, mitral valve prolapse, etc. ) is intriguing given the prominent role the ANS plays in chronic fatigue syndrome.
Thiamine and Pain
Thiamine and benfotiamine (BT) are inexpensive and readily available over-the-counter, yet these compounds are not routinely used to treat chronic pain. Hurt et. al.
Some evidence also suggests thiamine may be an effective analgesic. High-dose thiamine and benfotiamine (S-benzoylthiamine O-monophosphate, BT) administration reduces pain in animal models of inflammatory and neuropathic pain. In the laboratory, thiamine also reduces nerve-injury-induced hyperexcitability. How either of these compounds inhibit pain, however, is unknown.
Interestingly, thiamine is also involved in the synthesis of gamma-aminobutyric acid (GABA). A recent Gulf War Syndrome study suggested glutamate/glutamine imbalances could contribute to the cognitive dysfunction found in some GWS patients. Marco reports that “the brain lesions in Wernicke’s encephalopathy are exactly the same as those associated with glutamate excitotoxicity.
In Wernicke’s encephalopathy, thiamine deficiency and glutamate promote excitotoxicity with thiamine deficiency resulting in a downregulation of the GLAST glutamate transporter thus impairing glutamate clearance from astrocytes The results are “lactic acidosis, brain edema, oxidative stress, inflammation, and white matter damage””
- Check out Marco’s blog on glutamate/glutamine imbalance in ME/CFS and other neuroinflammatory disorders here. Check out his Neuroinflammatory series here.
Thiamine deficiency can also cause peripheral neuropathy (tingling, numbness, etc., or sensory loss) which is common in both ME/CFS and FM.
The Magnesium Connection
Since magnesium binds thiamine to thiamine THIAMINE TO THIAMINE?? using enzymes, low magnesium levels could impair thiamine activation. Eisinger concluded that the reduced magnesium levels he found in FM suggested thiamine deficiency was present. Magnesium levels were moderately low in one ME/CFS study.
A Masked Deficiency
Malabsorption is a possibility, but normal blood B-1 levels suggest the B-1 is getting from the gut to the blood. Constantini and Pala believe B-1 transport from the blood to the mitochondria is being interrupted by transporter or enzyme problems.
The reports are preliminary and mostly anecdotal, but the Italian report and Karen Lee Richards’s experience suggest high-dose Thiamine (B-1) supplementation could reduce the fatigue and pain in some ME/CFS/FM patients. With few side effects reported, this low-cost approach to ME/CFS/FM appears to be well worth trying.
In a couple of days we’ll start a survey to get an idea of how effective this supplement is.
- Check out Karen Lee Richards blog here.