Surveys on Supplements

In my last post, I gave a Cookbook based on PubMed articles and some surveys on this site.  CFS patients often ask on support groups — what to take, and the quality of recommendations vary greatly! The ideal response or guidance for any supplement, probiotics or anti-infection agents would be:

  • Probability of improvement
    • Degree of improvement is often very subjective
  • Probability of problems / deterioration
  • Quantity taken (many pubmed studies have no effect seen until a certain dosage was reached)

IN this post I will list survey sites that I found and list items that were not included in the Cookbook or the Surveys. Items need at least 10 responses in the survey to be included

  • ME Association of UK 2010 Survey:
    • CORTICOSTEROID eg HYDROCORTISONE: Better 33% Worst 21.6%
    • THYROXINE: Better 41% Worst 10.8%
    • MODAFINIL/PROVIGIL: Better 37% Worst  29.6%
    • EICOSAPENTAENOIC AID (EPA) OMEGA 3 OIL: Better 36.3%  Worst 4%
    • L CARNITINE: Better 30.8% Worst 6.3%
    • INOSINE PRANOBEX/ IMUNOVIR: Better 25.8% Worst 24.2%
    • Enada/NADH: Better  19.9% Worst 16.8%
    • EVENING PRIMROSE OIL: Better  28.4%  Worst 5.4%
  • https://beta.groups.yahoo.com/neo/groups/CFSFMExperimental/polls/close
    • EDTA (thylenediaminetetraacetic acid): 32.5% improved 12% worst
    • my experience with getting a saline drip has been (short term): Better 72% Worst 0%
    • low dosage naltrexone www.lowdosenaltrexone.org): Better 26%  Worst 26%
    • ImmunoPro (non-denatured whey): Better:  47%  Worst 24%
    • Alfred Blasi protocol (http://health.groups.yahoo.com/group/Al fredblasiprotocolFMSCFS/ ): Better: 46%  Worst: 11%
    • Salt/C Protocol (http: www.lymephotos.com):  Better 36%  Worst: 12%
    • Gookinaid: Better: 54%   Worst: 46%
    • the Hemex Protocol (anticoagulants, ISAC panel Mocha Panel): Better: 48%   Worst:  27%
    • Cholestyramine: Better: 58%   Worst: 8%
  • http://www.storiesoutloud.co.uk/supplements/pollresultsall.py
    • Coconut Oil: Better: 81% Worst: 6%
    • Probiotics (not specific): Better: 69% Worst: 0%
    • Vitamins
      • B Vitamins: Better: 69% Worst 0%
        • B12: Better 59%, Worst 5%
        • Folic Acid or Methylfolate: Better 40%  Worst 15%
        • NADH: Better  27%, Worst 9%
      • Vitamin C: Better: 66%  Worst 0%
      • Vitamin D: Better  54%, Worst 14%
    • Minerals
      • Magnesium (Not Epsom Salts): Better: 74%  Worst 6%
      • Epsom Salts (Magnesium Sulfate):   Better: 92% Worst 0%
      • Calcium: Better  25%, Worst 17%
      • Sea Salt: Better: 83% Worst 0%
      • Selenium: Better 60%,Worst 10%
      • Zinc: Better 56%, Worst 6%
    • Digestive Enzymes: Better: 55% Worst 6%
    • Garlic: Better: 50%, Worst 0%
    • Turmeric/Curcumin: Better 60%, Worst 7%
    • Dehydroepiandrosterone (DHEA): Better 60% ,Worst 10%
    • Omega 3 (No Particular Oil): Better 47%, Worst 0%
    • N-Acetyl-L-Cysteine (NAC): Better  60%, Worst 13%
    • Spirulina: Better 40% , Worst 0%
    • Co-enzyme Q10 or Ubiquinol: Better 55%, Worst 19%
    •  Melatonin:  Better  56%, Worst 20%
    • Acetyl-L-Carnitine (ALC): Better  48%,Worst 9%
    • D-Ribose: Better 51% , Worst 18%
    • Evening Primrose Oil: Better 38%, Worst 8%
    • Ginkgo: Better 45% , Worst 18%
    • Milk Thistle: Better 46% , Worst 23%
    • Valerian:  Better 64% , Worst 29%
    • Chocolate or Cocoa:  Better 48% , Worst 24%
    • Ginseng (American or Asian/Korean/Panax or Siberian): Better  25%, Worst 8%
    • 5-HTP: Better 33% , Worst 40%
    • Echinacea:  Better  6%, Worst 25%
  • http://curetogether.com/Chronic-Fatigue-Syndrome/survey/treatments/ (Associated with 23andMe.com — DNA). The details are not available so we cannot get the same odds ratio as above easily, I did items on the top of the list for effectiveness
    • Low-Dose Naltrexone: Better 62% Worst 11%
    • Recuperation (Mineral-rehydration supplement): Better 53% Worst 7%
    • B12 Injections: Better 47% Worst 8%
    • Far Infrared Heat (Migun Bed): Better 53%   Worst 10%
    • Thyroid hormone: Better  47% , Worst 10%
    • Probiotics (not specific): Better 42% , Worst  6%
    • Magnesium (Oral): Better 40%  Worst  5%
    • Chelation Treatments: Better 46%   Worst 6%
    • Eat more vegetables and fruits (Increase natural fiber): Better 34%  Worst 4%
    • Chonazepan  (Klonopin, Rivotril): Better  51%  Worst 19%
    • Diflucan (Antifungal): Better 33% Worst 3%
  • example

Bottom Line

If you know of additional surveys/polls please pass their URL along.

A lot of items are sitting around 50% for helping…   so the first choice should be items with a low percentage of harming (i.e. 10% or less…) and at least a  50% for helping.. This gives a 5:1 risk factor. The top picks from above are:

  • Zero risk of worst
    • Saline Drip – usually not practical
    • Sea Salt
    • Magnesium Sulfate
    • Probiotics (any)
    • Vitamin C
  • High benefit to risk ratio ( with > 50% of being better)
    • 13.5 Coconut Oil
    • 12  B12
    • 8.6 Turmeric/Curcumin:
    • 7.25 Cholestyramine:
    • 7 Zinc
    • 6 Selenium
    • 6 Dehydroepiandrosterone (DHEA):

Dosages?  Most of the surveys do not say anything about dosages. I know a few dosages from studies, cited in this post. My rule of thumb is that the dosage on bottles are not-therapeutic dosages, and do not consider mal-absorption seen in CFS/FM/IBS. Take vitamin B1 (thiamine) as an example: This 2013 study found no improvement below 1500 mg/day and then a major improvement. The typical B1 dosage is:

  • “For adults with somewhat low levels of thiamine in their body (mild thiamine deficiency): the usual dose of thiamine is 5-30 mg daily in either a single dose or divided doses for one month. The typical dose for severe deficiency can be up to 300 mg per day.”  [MedLinePlus.Gov]

IMHO, malabsorption is a major major factor — resulting in effective dosages being much higher than is normally accepted.