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A new do-it-yourself, randomized, double-blind, placebo-controlled, MITOQ trial

Discussion in 'Active Clinical Studies' started by justpat, Oct 22, 2015.

  1. justpat

    justpat

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    Inline with suggestions made following the announcement of their Q10 study (several threads down) Mendus has announced a study looking at the effect of MitoQ on symptoms of ME/CFS and FM. The study is a collaboration between MitoQ Inc, Health Rising and Mendus. A hundred people were offered a 6-week supply of the supplement, for free, along with a 6 week placebo. Anyone interested in joining after the 100 places are filled can join by purchasing heavily discounted MitoQ.

    Let's hope this can lay the ground work for more rigorous trials in the future. Thanks for your continuing efforts Cort and Josh.
     
  2. Farley

    Farley

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    Hi justpat, How would I go about putting myself forward for the trial as I was looking at starting MitoQ, but I just couldn't afford to so this may be my only chance.
    I'm in the UK, would that make a different.
    Many thanks.
     
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  3. justpat

    justpat

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  4. whodathunkit

    whodathunkit Senior Member

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    I really like MitoQ and take it daily because it's supposed to all go into the mitochondria, but I suspect it doesn't really work quite like they thought. Or maybe it works better than they thought or than I expected.

    Anyway, supposedly 95% of MitoQ goes into the mitochondria, whereas only 5-10% of ubiquinol gets there. At the dose they recommend (10mg daily) MitoQ smakes me too speedy even though I'm at least 80% recovered from my problems (maybe closer to 90% recovered, although there are still days), and seems to contribute to some anxiety. Coincidentally, I just tried a 10mg dose today after several months of 5mg/day, just to see what would happen. So that subjective assessment is still current.

    My thought is that maybe we need more CoQ10 in other parts of the cell, too, and MitoQ is so effective on mitochondria we don't get it there. Or maybe I just don't know what I'm talking about. :lol:

    Suffice it to say that ubiquinol is actually a "smoother" energy boost (for me, at least) at doses over 600mg/day. However, unless you're Donald Trump in a non-bankruptcy year :meh:, really high dose ubiquinol is hard to afford because at those doses is somewhat pricier than MitoQ.

    I compromise by taking 5mg MitoQ every day + 200mg ubiquinol. That seems to do me just fine. That's still somewhat pricey, but since I consider largish doses of some form of CoQ10 to be essential, I live with it. And at 5mg/day, MitoQ is a pretty good deal. I may go buy some of the discounted stuff. It's definitely effective, and has been part of my recovery, for sure.
     
    Last edited: Oct 22, 2015
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  5. Farley

    Farley

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    Thank you @justpat for the link, I have asked to take part but all the free place's have been filled. Like you say though I could still take part at a discounted price, I am waiting for some sort of discount code through an email (not arrived yet). Will post any extra info forwarded to me in case this helps anyone else.
    Thanks again.
    PEM is my worst problem, I struggle with trying to keep mobile and within my limits. When its at its worse and if I had to swat for some reason my legs have given way, my arms aren't strong enough to pull myself up or drag myself anywhere. I'm now so scared of overdoing it, have to save all my energy for going to the toilet and eating, that's all I can manage most days. I have been using d-ribose for the last two weeks, but this doesn't seem to be doing anything at all.
    I have never responded to any drug or supplement that is apparently helping other suffers, after nearly 13 years of trying and that coupled with the financial implications of not working for most of this time my options are limited.
     
  6. Mary

    Mary Senior Member

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    @justpat - thanks so much for posting this! My doctor has recommended I try MitoQ, but it is very pricey and CoQ10 has never done anything for me. However, it's possible I've never taken enough of it. In any event, I've just signed up through your links and am waiting for the 50% coupon.

    @Farley - that's too bad about the d-ribose. It's one of the few things that have helped me with energy. How much are you taking? I did notice results within a couple of days with d-ribose so maybe it isn't for you.

    Two other things that have helped me with energy are potassium and methylfolate. It seems I had a chronic potassium deficiency for a long time, even though my blood tests were always in the normal range, though on the low side. And low potassium can cause severe fatigue and weakness. I only discovered my potassium problem when I started taking methylfolate (had already been taking MB12). The methylfolate increased my need for potassium very quickly, inducing a deficiency - most notable symptoms were severe fatigue and weakness - which went away rather quickly once I started taking potassium. I'd had those symptoms prior to starting methylfolate, but never knew they were due to low potassium until that time.

    Right now I take about 1000 mg. potassium gluconate daily in divided doses and luckily it's one of the cheap supplements. Yes, ideally I'd get enough in my food, but it takes effort and also sometimes a lot of calories to get enough that way. So this is something you might want to check out, if you haven't done so already.

    I still get PEM, but am able to do more before crashing with these supps.

    I'm curious to see if the MitoQ will make any difference --
     
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  7. Mary

    Mary Senior Member

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    @whodathunkit - what do you credit with your 80 - 90% recovery? (if it's possible to say)
     
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Farley

    I've taken d-ribose 5 mg twice daily since Dec 2012. About 2 weeks ago I bought another brand, Corvalen, on the advice of my m.e. ND - she said that some of her patients (not all) would respond to Corvalen brand but not other brands - she also warned me it was more expensive:
    http://www.amazon.com/Douglas-Labs-Corvalen-Ribose-Ounces/dp/B004ZG48IA

    I have been feeling a bit better each day BUT I also stopped oreganum and started synthroid at the same time. PEM is my biggest challenge too.

    I'm in the MitoQ study so am curious to see effects when the product arrives.
     
  9. whodathunkit

    whodathunkit Senior Member

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    @Mary: ubiquinol never did anything for me until I began to recover a little bit using Freddd's protocol, even when I high dosed it. But after I had gotten a bit better, I got some response at 600mg or above of ubiquinol. Still high dose, but the response was very nice, and somewhat "enlightening", in that it's one of those things where, when I finally experienced it, I went "Oh, so this is what people talk about!"

    Perhaps there is some mitochondrial function threshold under which it can't do much good. Or maybe if we're in really bad shape it take almost prohibitively high doses. Regardless, the point is that I never responded to it until I got in better shape.

    @Farley: Sorry to hear you're in such bad shape. I wasn't, but d-ribose was another one of those things that didn't do me any good when I was in my worst shape.

    Have you tried L-carnitine fumarate (LCF)? It's very potent, and can cause sides ranging from anxiety to insomnia in the beginning, so I hesitate to recommend it to you as sick as you are, but maybe you could do some reading on it and decide if it's something you might want to look into. It's supposed to promote formation of new mitochondria and enhance the functioning of existing ones. I think it's one of the things that has helped me the most.
     
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  10. whodathunkit

    whodathunkit Senior Member

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    It's possible. I think about it all the time. It's like a little miracle. :)

    Please remember that I've never had a diagnosis of CFS or ME. But subjectively, after what I've learned since I hit PR, I realize that's probably for lack of trying. I don't like to go to doctors (who does? but, to give you an example, I went over 20 years without an annual physical, and would only go to specialists if I was having extreme symptoms or wanted to confirm a self-diagnosis), and I thought my symptoms were just because I wasn't aging well. I figured I just had to suck it up and live with them until I got to the point where I had an obvious, acute disease and went down for the count. But now I know I did fit the criteria for CFS, even if what I experienced was not as severe as some.

    Anyway, what I credit for making me better:
    • iodine therapy
    • Freddd's methylation protocol
    • Gut rehab (tons of pre- and probiotics, large variety of stuff)
    • Intermittent fasting (I probably couldn't have tolerated this if I'd tried to start off with it as an initial therapy)
    • Diet (PHD-style, very low omega-6/high saturated fat, starchy carbs, grass-fed or wild-caught protein, etc.)

    Individual supplements that have had the most profound and lasting effect:
    • methylcobalamin
    • methylfolate
    • adenosylcobalamin
    • LCF
    • high-dose CoQ10
    • iodine
    • clostridium butyricum (probiotic)
    • Bifido bacterium (various strains)
    • Other variety of probiotics, rotated
    Those are the heavy hitters. I take a bunch of other stuff that I know has helped (like K2 as MK4, and various minerals), but those are the biggies that I wouldn't drop unless I couldn't get them for some reason. Also there have been some things like liposomal vitamin C that had a quite beneficial effect, but I can't really afford to take them regularly and don't necessarily consider them essential. But they'd be staples if I win the Lotto. :D

    Chelation has also been beneficial, but that's very episodic. I'm actually in the middle of experimenting with a niacin detox (so far so good, guess I'm over my problems with niacin), and plan to do another few rounds of Cutler after the holidays are over.

    It's a few steps forwards and a step or two back, but it's progress.

    That help?
     
    Last edited: Oct 22, 2015
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  11. bsw

    bsw w/r/t

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    While I think it's awesome that someone is doing this, I'm skeptical of their claims about the efficacy of the product. I couldn't find anything telling me what they put into it. I'm confident it will produce positive results, but I just hope they don't try and push their product too heavily onto CFS sufferers once done.
     
  12. Mary

    Mary Senior Member

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    @whodathunkit - thanks for your detailed reply! Actually, I've done most of that except high-dose CoQ10, and not as much gut rehab. I am taking something my chiro gave me for my gut ($64! ouch!) but it seems to be helping with an intractable problem. I've only ever taken 200 - 300 mg. CoQ10 a day - so it will be interesting to see if the higher dose does anything for me.

    I wonder what the difference is between all of us, because d-ribose makes a noticeable difference in my energy. I've been taking it since 2005. I actually stopped it 2-3 months ago, thinking I maybe didn't need it any more, trying to save money - and finally realized 3 days ago that I had not felt well for awhile, could not get my energy back to where it had been several months ago, and finally a lightbulb went on - I'd forgotten all about the di-ribose I had stopped - so I ordered some and sure enough, today started to feel human again.

    As far as getting an official diagnosis, it's next to impossible and also generally expensive to find a doctor who knows anything about CFS and who can make an accurate diagnosis - I'm sure you know more about it (we all do!) than 99% of the doctors out there. And based on what has helped you, it sure sounds a lot like CFS - the only difference is you've made such large gains. It definitely sounds like progress to me! :thumbsup:
     
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  13. whodathunkit

    whodathunkit Senior Member

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    To be clear, d-ribose did benefit me. But it was one of those things like CoQ10 that I got benefit from only after I'd improved from baseline on Freddd's protocol. I don't take it regularly becuase of my blood sugar issues, as I've read it can exacerbate hyperglycemia in some people. It did get me over the hump when I started exercising more, though...very, very useful for muscle soreness. Which, thankfully, I don't have too much of an issue with any more. And even though I don't use it any more I still have some and might circle back in the future if need seems to call for it. It's good stuff. I found it a very useful symptom reliever, kind of like TMG and SAMe were for me for a while. But like those things, I just didn't need it long term.

    Incidentally, what you describe as happening to you with d-ribose is exactly what happened to me with LCF. It was after I forgot it for a while, felt like crap, and then felt so much better after I re-started that it became an essential for me.

    Let us know what the high-dose CoQ10 does for you! :)
     
  14. Mary

    Mary Senior Member

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    @whodathunkit - I'm still waiting to hear back from that company for the 50% discount coupon for the MitoQ - will see if it ever comes!

    Re ubiquinol vs. ubiquinone - here's a brief article from Dr. Stephen Sinatra and his patients' experience with these two different forms of CoQ10 - I think it's sort of surprising - see what you think:
    http://www.drsinatra.com/is-ubuquin...none-surprising-results-from-my-own-research/

    Here's something I've been taking at 200 mg. a day, and recently upped to 300 mg. Will see how that goes and then up it some more: http://www.iherb.com/MRM-CoQ-10-100-mg-60-Softgels/22808

    I am doing better back on the d-ribose, hopefully the higher coq10 will help too though I am going slow with it - have reacted badly to too many things I've started too quickly! :confused: Will keep you posted --
     
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  15. whodathunkit

    whodathunkit Senior Member

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    Hey, this is a great article! I've been parroting what I've heard about ubiquinol v. ubiquinone, but maybe we can use the cheaper stuff! That would be great. I may stop the ubiquinol and MitoQ and switch to ubiquinone for a while to see if it works. Of course I'd still take a big dose but it is much cheaper so that would still be beneficial.

    Thanks, Mary!
     
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  16. nandixon

    nandixon Senior Member

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    My own experience is the same as what Dr. Sinatra found, in some patients. Ubiquinol (reduced form of CoQ10) made my fatigue worse, whereas ubiquinone (oxidized form of CoQ10) gives me more energy. (Some people find that ubiquinol is better for them, though.)

    I looked into possible reasons for this a long time ago, but I think some (theoretical) possibilities are:

    1. Excessive amounts of ubiquinol might drive the electron transport chain in the reverse (wrong) direction and impair mitochondrial energy production (this may include the generation of free radicals).

    2. It appears that both ubiquinol and ubiquinone can affect the expression of many genes, and they can not only affect different genes, but sometimes one may cause an increase while the other a decrease in the same gene's expression.

    I think I'd found some other possibilities, too, like different blood pressure-lowering abilities, immunomodulating effects, etc, but can't remember any details. One of these other possibilities may be more likely than the two I listed above.

    Also in line with Dr. Sinatra's findings is that I was surprised to find that I needed the same identical minimum amount of either ubiquinol or ubiquinone to stop a heart palpitation issue (SVT's), suggesting I might be achieving similar blood levels for both. (I always make sure to take the ubiquinone form with some fat/oil.)

    I'm currently taking 300 mg of ubiquinone, too. I do 200 mg after breakfast and 100 mg after dinner, which works better for me to level the effects out than half at breakfast and half at lunch, for example. (I get too wired with more than the amounts I gave.)
     
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  17. Farley

    Farley

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    @Mary , I'm also still waiting for the 50% discount code, even though I emailed them three times now.
    They were quick to respond telling me that all the free places were taken up, guess they are not so interested in others taking part off their own backs.
    Maybe that the info they gain through this would be considered unreliable as it would not involve the blind placebo aspect.
    For anyone that didn't read the info on the trial, it would involve them sending you two bottles marked A an B or was it 1 and 2 (dam brain) anyhow one would have placebo and other Mitoq. So then they would only know what was in what. So then anyone that was paying would get just the supplement, therefor any results could be blamed on placebo affect.
    I'm really not up to date on trials that are done remotely over the internet, is this how they usually work?
     
  18. Farley

    Farley

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    It just goes to show how desperate this illness can make someone.
    The very fact that I would take a bottle of pill's sent over the internet from god knows were, labbled just A or B.
    It would sound crazy to any well person, but the fact that I would take that risk 'speaks volumes'
     
    Last edited: Oct 27, 2015
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  19. whodathunkit

    whodathunkit Senior Member

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    Not necessarily. Some people just want free stuff...state of wellness isn't an issue. They just want free stuff and will take it any way they can get it. People lie to get free stuff, including health and welfare benefits, every day, which makes it that much harder for people with legitimate problems who actually need the free stuff to get what they need.

    I suspect that's why the MItoQ people limited their enterprise to 100 people...because otherwise it could have gotten really big, really fast, and the bigger it got the harder it would get to ensure your cohort meets the criteria you're shooting for (instead of being healthy wankers lying to get free stuff).

    If you can get some MitoQ for half price, it might be somewhat more economical than you think. I find I only need half the recommended dose, which is two capsules per day. As ill as you are, you might be able to open the caps and take fractions of it and still have it do you good. I picked up quite a few bottles a while back when it was on sale, and it's lasting me an unexpectedly long time.

    Also to consider is trying ubiquinone, which is quite cheap compared to the other forms, and judging from the comments is at least as good as ubiquinol (which I like a lot).
     
    Last edited: Oct 27, 2015
  20. Farley

    Farley

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    I get what you mean about people blagging free stuff, but I was just generalising about the fact that I would take something in an unlabelled bottle, whereas before I was ill I wouldn't take a vitamin C tablet brought over the internet in the fear that it had come from an unreliable source.
    Now it would seem that if I want treatment for myself I have to take that risk.
    I have in the past after seeking alternative treatment, felt like I had be experimented on, and I don't wish to be anyone's 'Ginni Pig'
     

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