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Do we know enough about mitochondrial problems in ME/CFS now to assess likely benefits from CoQ10?

Discussion in 'General Treatment' started by Sasha, Oct 29, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Lots at the IACFS/ME conference about mitochondria and I'm wondering what the implications are, if any, for the use of CoQ10. I tried this years ago to no effect but now am wondering if higher doses are indicated.

    @ZeroGravitas kindly produced this summary of part of Nancy Klimas's talk at the conference:

    Useful info from Cort's blog:

    From this 2009 paper on the treatment of mitochondrial disease:

    Does anyone have info about the Klimas study (actually, I'm not sure if it's her study or just one she was mentioning)?

    Wondering whether to try this and if so, what product/dose/schedule, how long to give it, etc.

    I'd been going to do this a couple of months ago and got sidetracked onto something else. :cool:

    Wondering if our state of knowledge has now improved about the role of mitochondria in ME/CFS to inform consideration of this.
     
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  2. GhostGum

    GhostGum Senior Member

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    I believe there is an old discussion about this somewhere where some say that high doses was effective for reducing most symptoms, if I recall 600mg+. I use 200mg Ubiquinol I take with copious amounts of cod liver oil at night and find it does help, I just need to start taking it in the morning as well.

    What amazes me about this 'supplement' is I think Japan approved it for use in heart disease decades ago, and its used by quite a high percentage of the general population.

    Only problem of course is its expensive and maybe of little benefit to people with a complicated situation. Its a staple for me though, as is resveratrol.
     
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  3. Sasha

    Sasha Fine, thank you

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    Just read it's a vasodilator, which may not be good news for those of us with OI - but on the other hand, our OI comes from something, and if CoQ10 addresses that something, maybe it could be good on balance... who knows?
     
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  4. Jan

    Jan Senior Member

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    Taking doses at those levels would be ridiculously expensive. I'm paying about £30 per month to take 200mg daily.
     
  5. Mary

    Mary Senior Member

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  6. Mary

    Mary Senior Member

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    I just saw Amazon has the Solgar 400 mg. CoQ10, 60 softgels, for $39.99, vs. $69.60 at iherb - still expensive but a huge savings -
     
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  7. cman89

    cman89 Senior Member

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    I was going to start a separate post about this, but ill insert it in here anyways, since I think it holds good value. This is from a blog regarding the ketogenic diet which I am experimenting with, and it shows some cool evidential pictures of mitochondrial up regulation with a Ketogenic diet approach. This could be something to try along with the scope of supplements. http://caloriesproper.com/ketoadaptation/mito-1/
     
  8. anciendaze

    anciendaze Senior Member

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    I've been taking 400 mg. CoQ10 per day for years, but not for common reasons. I tried an experiment, then stopped it, and found I had problems with leg cramps while lying down. This has happened more than once when I ran out. I have seen more benefit from ubiquinol than ubiquinone, but not the 3x others claim, more like 1.5x. Absorption may not be my main problem. I do not recommend powdered formulations.
     
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  9. Sasha

    Sasha Fine, thank you

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    Thanks for mentioning this. I see you've got a thread on it now:

    http://forums.phoenixrising.me/inde...-keto-diet-can-help-with-mito-function.47631/

    Can I suggest that people go to that thread if they want to discuss the ketogenic diet and mitochondria, and that we keep this thread for CoQ10?
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I would be interested to know what studies Dr Klimas was referring to. I looked on PubMed and only found one really relevant study from Barcelona. There seemed to be a slight reduction in heart rate after maximal exercise after 8 weeks treatment but it did not seem to be any different in the placebo group. (I.e. I am not sure there was any evidence of benefit.) In addition blood pressure seemed to go up in the treated group. Whether that matters I have no idea but it might be a worry.

    As far as I know we do not yet have enough information of mitochondrial function in ME/CFS to indicate whether CoQ10 is a good idea or not. If ME/CFS turns out to involve a problem with mitochondria it might be more likely that CoQ10 might make things worse rather than better (rather than being unimportant). It might even make things worse while at the same time improving symptoms in the short term. I think we really have no idea. We need some properly controlled trials. Maybe they are going on. I would love to know if they are.
     
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  11. Sasha

    Sasha Fine, thank you

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    I think that the trial might be on GWI, @Jonathan Edwards, but I was struggling to hear what she was saying because of the poor sound quality. (She considers GWI to be clinically indistinguishable from ME.) I was really hoping that someone here on the forum would have picked up what she was talking about.

    (I don't know if you can ask her, @Geoffrey Hallmann! We're wondering what CoQ10 studies Nancy Klimas was talking about in her panel presentation yesterday).
     
  12. bertiedog

    bertiedog Senior Member

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    I have been taking Co Q 10 at doses of 60 - 100 mg for nearly 10 years. When I come off it I notice lower energy. I would love to be able to take more but it gives me insomnia at doses over 100 mg, has happened every time I take a higher dose.

    Also I would have to be careful because of the vasodilation effect as I have POTS pretty much under control but I cannot say the same for the almost daily headaches/migraines I get.

    I haven't tried the unoxidised form, might get that next time.

    I find all this information about problems in the mitochondria fascinating but feel I knew about this 10 years ago when Rich Van K brought it to our attention and was subsequently followed up by Dr Myhill.

    Pam
     
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  13. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I take 400 minimum, often 600mg. It has made a big difference in terms of waking up the following morning without the usual toxic symptoms (it was a VERY noticeable change and I wasn't taking any other supplements or medication), but it's not a magic bullet by any means. I take L-Carnitine for better cognitive functioning, plus D3 at higher amounts. And turmeric tea. My family have helpfully bought me bottles of CoQ10 and LC, so that has cut the cost for me. I've experimented with a few things this year, so it's been costly, but my family noticed the benefits of CoQ10 and LC on me, so decided to help out. I tried MitoQ, but honestly did not find it better. I ended up taking two tablets just to get some kind of benefit, which meant I went through the bottle in a month. Would not do that again since it's over forty pounds. I've taken 1200mg of CoQ10 - which produced a bit of a feel-good rush after a few hours, but I haven't had any reason to take doses at the level otherwise. I currently use 200mg tablets from Swanson, so I'll take either two or three.

    I take CoQ10 at breakfast. Effects mostly noticeable in better refreshed sleep by next morning. So I wouldn't normally take it close to sleep/at night.

    EDIT: Just to add, I also tried d-ribose, but have mixed feelings about that one. Not sure what I think of it, whereas LC had noticeable effects on speech (less problems with pronunciation which had been getting worse) and better mental clarity.
     
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  14. voner

    voner Senior Member

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    @Jonathan Edwards, dr. Klimas was referring to a study done on gulf war illness. my guess is that this is the publication:

    https://www.ncbi.nlm.nih.gov/pubmed/25149705

    she made mention that as a clinician, she cannot differentiate between gulf war illness and ME/CFS in a patient presentation. I think she does a lot of her work in gulf war illness – partially because she can get funded for that.
     
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  15. voner

    voner Senior Member

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    @Sasha, thanks for starting this thread. I was so impressed with Nancy Klimas's "overview" talk on the mitochondrial panel! She is such a good communicator. I highly recommend watching her short talk... I haven't finished watching the whole video... she starts about 15 minutes in.

    https://www.facebook.com/OpenMedicineFoundation/videos/?ref=page_internal

    hopefully this link works... if not, go to the open medicine foundation's Facebook page and look at the videos and there's a video of with a pic of Dr. Ron Davis (by himself) against a tan background... the length of the video is 57:05...
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member

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    That study looks almost as weak. The punch line for me is: 'GSRH showed no significant benefit in the combined-sex sample.' You cannot decide to stratify because your original analysis is null or you did not match arms for primary outcome measure. It is published in a journal called Neural Computation which sounds like where you publish if you cannot get into a standard clinical journal. And although GWI may look exactly the same as ME/CFS presumably it is not since it was caused by being in a war zone.

    I don't want to sound wingeing but we desperately need the research to be of solid standard. I am not impressed by the evidence here so far.
     
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  17. TigerLilea

    TigerLilea Senior Member

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    @GhostGum You need to be careful with cod liver oil. It has Vitamin A in it and you run the risk of Vitamin A Toxicity if you take too much. High levels of Vitamin A can lead to osteoporosis. Also recent research has shown that people who supplement with Vitamin A (including cod liver oil) have an 18% increased risk of death. I read somewhere a few years ago that cod liver oil should be taken occasionally, not every day.
     
  18. Sasha

    Sasha Fine, thank you

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    Pity it's not possible to get the full paper. Ah well.


    OTOH, I think that the toxic exposures in the Gulf War are supposed to be good candidates as a cause for GWI, and I thought that lots of different precipitating causes could lead to ME/CFS (viruses, physical trauma, etc. etc.). Maybe GWI are just the subset with a known cause of onset.
     
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  19. erin

    erin Senior Member

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    CoQ10 gave me terrible rash years ago, it took me 3 years to get rid of it. When I say rash I mean my skin was peeling, wounded, bleeding. I don't even want to remember that period. I had to hide my legs for years. Covering them on the other hand made them itchier.
     
  20. Jan

    Jan Senior Member

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    Wasn't it also due to the vaccinations the troops had to have?
     

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