Supplements for ME/CFS…

Revised and updated January 25, 2014.

Many people have their own favourite mix of vitamins and other supplements that help them cope with their ME/CFS, as do I. Over the years, many supplements have come and gone, failing the placebo effect test. Those that remain actually are beneficial.

I always take 2 month’s worth of a new supplement. The first month I see what happens, and note any beneficial effects. Then I wait a month, before buying more. If this second batch doesn’t repeat the success of the first (always assuming the first did anything at all), then I assume that the first batch just triggered a placebo response and don’t buy any more.

The following list has been arrived at, and expanded, over 30–odd years and has been thoroughly tested – I was taking ginseng and vitamin E back in the seventies. I always feel bad when I run out or forget to take them**, and better when I get more; QED –  they work. Or, at least, they work for me. No guarantees – sorry.

** Feeling bad when I run out could be psychological (but it’s not), but feeling bad when I forget to take them is clearly a physiological reaction.

500mg Siberian Ginseng.

400 i.u. Vitamin E

30mg Zinc

1,000mg soluble Vitamin C

Multivitamin and Mineral supplement (if taking this, reduce zinc to 15mg)

600mg Power Health Magnesium

In addition to those, which are specifically for ME, I also take the following:-

Potassium, 200mg (not with some heart drugs – be sure to check)

Vitamin B6, 100 or 200mg depending on how depressed I feel (see footnote)

Vitamin B12, 1000mcg

Vitamin D3, 5,000iu

My COPD meds cause deficiency, which I’ve covered elsewhere ( Phyllocontin causes B6 deficiency, which messes with serotonin levels, and my Angitil impairs B12 uptake; several drugs cause potassium deficiency), and Vitamin D3 is because I get almost no sunlight, and because it’s supposed to be generally beneficial as, indeed, it does seem to be, having passed the Placebo Effect test. Pretty sure it benefits my ME too, as well as being a much-advertised flue preventative (a claim which, in my case, appears to be justified).

(Note: some sources say you can take many thousands of units of D3 per day without coming to harm – treat such claims with considerable caution. D3 is the version with maximum bio-availablity; it’s also the version created by the effects of sunlight on your skin.)

I mostly get my supplements (but see next para), online from–soul/ who market the Power Health brand, which is what I mostly buy.** Good prices. Good people, too.

**Potassium is Solgar, and Ginseng is Lamberts.

Lately, I’m sorry to say, postal charges have ramped up costs, so I am increasingly sourcing the basic stuff, multivitamin & mineral,  zinc, and vitamin E, from  Tesco and Sainsbury’s to save on postage. There is no discernible difference in quality.

A tip for vitamin C: get a 250ml empty water bottle, fill with diluted squash and drop in a C tablet. Screw down the cap once it’s dissolved and keep handy. Vitamin C uptake by the body is based on need – take more than your body can use at one time, and most will be promptly excreted. Sipping from your bottle through the day will get around this, and is way cheaper than buying sustained–release products. You’ll need a bottle-brush to keep it clean, as soluble Vit C leaves a greasy deposit behind. I assume this is a buffering agent, as using Ascorbic acid powder (Vit C is ascorbic acid), in squash doesn’t do that. However, if you have a sensitive stomach, or a history of ulcers, stick with the soluble tablets.

Magnesium was suggested by Dr. John Briffa, who used to write in the Observer magazine, as a remedy for bladder urge incontinence (unfortunately still with me – If you gotta go, go now, or else it’s down yer leg, to paraphrase Mr. Zimmerman). However, it’s also supposed to improve muscle function too, and is very effective against nocturnal cramp.

NB: it’s been said that Ginseng can cause liver damage (but bear in mind that the Chinese and Japanese take this stuff in huge quantities). All I can say is that after taking it for over 40 years, my liver is fine (as far back as the early seventies I took ginseng and vitamin E on backpacking trips). And yes, my liver has been checked out. All supplements are capable of causing some sort of damage if abused. Taken in sensible doses, as above, there are unlikely to be any problems.

Even though the Power Health prices are pretty good, you can still buy cheaper supplements online, but those I’ve tried have been nowhere near as effective (supermarket products have proven OK, at about the same price). Conversely, buying ferociously expensive products just isn’t worthwhile in my experience – more expensive, in this field, only rarely means better performance.

Depression:  As I said, Phyllocontin Continus causes B6 deficiency. This messes with the serotonin re-uptake mechanism, causing often severe depression. Taking B6 reverses this. It’s essential for me as I can’t take antidepressants. Tricyclics do shut down depression, but they also shut down my brain too, which is unacceptable as it’s one of my few parts that still works. SSRIs are positively dangerous, as they cause me to cough so hard and uncontrollably that my lungs haemorrhage.

And no, I haven’t told my GP as whenever I report adverse drug reactions (like statins, which tip me into rhabdomyolysis within 48 hours), it’s never the drug, but always me not “giving it a chance”. Fuckwit! As if I’m going to hang around, in agony, while my muscles dissolve, or coughing blood, in the hope that either might, by some magical means, go away. Always assuming it doesn’t cripple or kill me first.