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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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supplements made no difference to me!

Discussion in 'General Treatment' started by Alesh, Dec 18, 2009.

  1. Alesh

    Alesh Senior Member

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    Supplements will probably never cure ME/CFS

    The reason why nutritional supplements are obtainable without prescription is the fact that they do not have any significant physiological effect on human body. I don't know how FDA decides what drug will be prescription only but I know that similar administration in my country, i.e., SUKL, decides by assessing of how significant physiological effect a drug has on the human body. If a drug significantly interferes with human physiology than it will probably be prescription only. If a drug has only small or no effect on human physiology than it will probably be over the counter. And since ME/CFS seems to be a particular case of marked physiological dysfunction probably only those drugs capable of marked interference with human physiology can cure it.

    But of course only "The He, who isn't there" is omniscient and I can be mistaken in that some unusual dosage of these supplements or some unusual combinations of these ones can indeed cure CFS.

    But if some "Universally Redemptive Protocol" of some "CFS specialist" consists only of supplements and if further "Extra Ecclesiam nulla salus" it is highly suspicious to me. ;)
     
  2. Carter Burke

    Carter Burke Guest

    That's very skeptical of you!

    It's quite dangerous to believe that supplements - vitamin, mineral, animo acid, herbal, etc. - don't have an effect on physiology. Almost anything has an effect, and they can even be far more potent than synthetic drugs.

    e.g. Pyridoxal-5-Phosphate (the active form of vitamin B6) has been found to be as effective as synthetic drugs for controlling blood pressure - but less dangerous and cheaper to obtain. So drugs companies *want* to reclassify is as a drug and stop it being sold as a supplement.

    They're really just nature's pharmaceuticals.

    With CFS you've got two reasons for supplementing: to treat deficiencies (caused by increased demands and/or poor absorption) and in other cases to have a more dose-dependent effect on physiology and support or improve things like energy production or immune function.

    There's a lot of money in the supplements industry, which can lead to false claims and unsubstantiated evidence, but there's also a LOT of money in drugs, and a lot of people who'd rather you weren't buying unpatented nutritional supplements to treat conditions.

    (Supplements and pacing are getting me better. I don't think I could've pulled myself out of it easily with ongoing deficiencies.)
     
  3. _Kim_

    _Kim_ Guest

    What Carter Burke said.

    And there are many prescription drugs that were formerly only available by prescription, yet are now available over the counter because their patent expired. Guaifenisen (Mucinex) and loratidine (Claritin) are two that come to mind.

     
  4. Freddd

    Freddd Senior Member

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    You repeat some popular misconceptions. You need to tell all those people having huge reactions/reponses to active b12s that it is all in their imagination. I guess I have a good imagination to thank for my healing and not finding a cause that could be corrected.

    only those drugs capable of marked interference with human physiology can cure it.

    And this statement is ridiculous in that the supplements are not interferring with human physiology and forcing it to do something but rather allowing it to heal and normalize and working with physiology.
     
  5. ramakentesh

    ramakentesh Senior Member

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    Treat what?

    Since the pathophysiological mechanisms are unknown and nearly all conjectural its impossible to really determine what is helpful and what isnt. Without a mechanism, its impossible to clearly say whether one treatment faculty will be more successful than any other.

    Many of the supplements used by CFS patients in the states are restricted in Australia because they have significant and potent side effects. As an example nitric oxide donors like L-arginine are potent and the side effects of an increased nitric oxide state are significant. L-arginine is THE most potent nitric oxide donor and its a supplement - angiotensin II inhibators also increased nitric oxide bioavailability but probably not by as much.

    So with that example its pretty clear that supplements can be just as effective or even more effective at doing certain things as FDA approved medications.

    Secondly, many herbs act in the SAME way as FDA approved medications. There are herbs that mimic the actions of cholerinaste inhibators, NSAIDS, vasoconstrictors and some of these herbs have been demonstrated to be MORE effective than the FDA approved medication.

    I guess what Im saying is that while I agree that blind use of supplements based on flimsy research is in many cases a waste of cash and time, if a proper mechanism could be found and agreed on, supplements may be available that are as good or better than the FDA approved medications that have been subjected to randomized trials.
     
  6. Jenny

    Jenny Senior Member

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    Alesh - If you look in PUBMED you will find scores of published studies describing the positive effects of supplements in humans. Just yesterday I was looking at studies about omega 3 oils, St. John's Wort, curcumin and olive leaf extract.

    Jenny
     
  7. Alesh

    Alesh Senior Member

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    It depends on how you define the word "supplement". I have another example of what is at least in the USA sold over the counter as a supplement, but in EU it is used only in experimental settings for the increase of cyclic adenosine monophosphate. It is forskolin.
     
  8. coxy

    coxy Senior Member

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    hi everyone,
    after going through a bad patch whilst taking all my various supplements, i decided to come off all but the enada & st johns wort & melatonin for sleep. Apart from the cost of all these various supplements ( i was trying dr sarah myhills regime), i felt that they couldn't be helping at all. So last week i decided to cut out COQ10, DRIBOSE,L CARNITINE, OMEGA 3/6, B VITS, large quantity of vit c(which i cut down slowly). i can honestly say i feel a bit stronger.

    After seeing what various treatments all of you are trying on here, there seems so many, listening to various doctors who all seem to have a different opinion of what might work, what might make things worse etc, i decided it's probably safer to not take anything much. My daughter who's been ill for 7 yrs with ME has always refused to take anything apart from amytriptiline when she was a lot younger is doing really well, also a friend who recovered (she was ill, as a teenager)didn't take a thing.

    I wonder if we could all save ourselves a lot of money by letting nature take it's course & heal us slowly until a proper drug comes along that could be of real help to us.
     
  9. Kati

    Kati Patient in training

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    Coxy, I concur, I haven't tried many supplements but I'd rather have evidence that indeed it's working on a large number of PWC before spending my check on it. Right now, I am on B-12, B complex and D.
     
  10. Esther12

    Esther12 Senior Member

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    It's easy to get into a habit of thinking 'It won't do any harm, and might help' and end up popping twenty pills a day.

    I take a multi-vitamin, fish oil, and vitamin D if I've not been able to get outside for a long time. I've not really noticed any sustained change from any of the things I've tried over the years - but everyone's different. I'm able to cook and eat healthily, so maybe others who are less able would benefit from more.
     
  11. caledonia

    caledonia

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    You get what you pay for with supplements. If they are of the cheaper variety, there could be fillers in them which are bothering you. Or they could be made from ingredients which don't absorb well.

    Or you're having gut problems with absorption which you don't realize and no matter what quality of supplements you're taking, they won't absorb well. In which case, betaine hydrochloride would be the solution. We often have low stomach acid and betaine would increase it.
     
  12. Frank

    Frank Senior Member

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    All supplements i used, except for a few for gut improvement, didn't help me much.
     
  13. andreamarie

    andreamarie Senior Member

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    The supplements I take are ones I'd be taking even if I didn't have CFS. They were all prescribed by traditional docs.
     

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