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

[Biarritz13]

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 thought GWI was caused by the squalene in the vaccine.

@morse27

 

[cman89]

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?

sure

 

[Hip]

If you look at the list of PEM Buster supplements that various members of this forum have identified, high dose Q10 in the range of 800 mg to 2,000 mg daily seems to have potent anti-PEM effects for some ME/CFS patients. The mechanism of action may in part be Q10's ability to reduce lactate levels produced by exercise (a study found Q10 reduces lactate in myotonic dystrophy), and possibly may also relate to Q10's important role in mitochondrial oxidative phosphorylation.

I am not sure how many other members of this forum have tried to replicate these Q10 anti-PEM effects, to see if it can instantly curtail their own PEM with these high doses. I can't really test this much on myself, because don't get much PEM from physical exercise, mainly just PEM from mental exertion.


There have been two studies on the benefits of Q10 for ME/CFS: one study found Q10 may increase energy in ME/CFS (ref: 1), and another found 150 mg of Q10 daily improves cognitive function and autonomic dysfunction in ME/CFS (ref: 1).

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

You can get some amazingly good prices for Q10 powder on AliExpress.com, typically around $200 for 500 grams of Q10 98% powder. This is where I buy my Q10. This Chinese Q10 powder has this nicest, cleanest taste of any Q10 powder I have tried.


So @Jan, for your jar of 30 x 200 mg Q10 capsules, you are paying £30 for what amounts to a total of 6 grams of Q10.

 

[Mij]

There is a whole list of safety precautions while taking CoQ10.
http://www.mayoclinic.org/drugs-supplements/coenzyme-q10/safety/hrb-20059019

what stuck out to me are these two:

Use cautiously in people who have mitochondrial disorders. CoQ10 may worsen mobility.

CoQ10 may cause low blood pressure. Caution is advised in people taking drugs or herbs and supplements that affect blood pressure.

I took CoQ10 at 200-300mg daily for a couple of years and felt as though it may have been beneficial, it did not prevent PEM but may have given me a little more stamina. I stopped 8 months ago, difficult to explain but I felt my body didn't need it anymore.

 

[slysaint]

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

I think they are also linking it to fluoroquinlone toxicity (ie cipro,levaquin etc anti-biotics).

 

[Mary]

I am not sure how many other members of this forum have tried to replicate these Q10 anti-PEM effects, to see if it can instantly curtail their own PEM with these high doses.

I increased my coq10 dose, regularly 300 mg. a day, to I think 700 mg. one day and 600 the next, trying to alleviate PEM because of reading how this helped JaimeS so much with PEM - she uses even higher doses sometimes. It didn't help, I ended up feeling wired but tired, and then got very very tired afterwards, which nothing would alleviate - and finally figured out it had caused my phosphorus levels to tank, I believe similar to refeeding syndrome, the hallmark of which is hypophosphatemia. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/) I've had this happen before with a different supplement (cannot remember which one). Anyways, I broke a cardinal rule for trying new things - I did not start low and go slow!

So I'm going to retry increasing my coq10 - I still want to see if it can help, but will go slowly, adding in 100 mg. extra a day for a week or so, monitoring my reaction and increasing phosphorus if need be. I've found kefir and sunflower seeds to be very good sources of phosphorus. Also I have a monosodium phosphate supplement from Swanson's which I use occasionally in very small doses.

One thing which helped tip me off about the phosphorus problem was that my pills (of which I take a great quantity daily!) were getting stuck in my throat, or taking a very long time to get down my throat. Ordinarily I have no problem tossing back handfuls of pills. Well, one of the symptoms of hypophosphatemia is dysphagia - difficulty swallowing. And this difficulty with pills went away along with the horrible fatigue, when I added in extra kefir, etc.

 

[Jenny TipsforME]

@Sasha did you read the Mendus Mitoq results(stronger, branded CoQ10)?
http://www.mendus.org/mendus-reports
Bear in mind this is patient-led research not university, peer reviewed

The influence of Mitoq on symptoms and cognition in
fibromyalgia, myalgic encephalomyelitis and chronic fatigue

Cort Johnson and Joshua Grant

Fibromyalgia (FM), myalgic encephalomyelitis (ME) and chronic
fatigue syndrome (CFS) are disorders with similar symptom-
constellations including pain, fatigue, cognitive problems and sleep
disturbance, among others. These multi-system illnesses have many
known abnormalities, few reliable treatment options and unknown
causes. Oxidative stress has been linked to disorder severity,
suggesting anti-oxidants may be of benefit. Coenzyme Q10 (Q10) has
been shown to improve symptoms and biomarkers of FM, and
ME/CFS if taken in combination with another coenzyme. However,
Q10 is poorly absorbed by mitochondria. MitoQ is a mitochondria-
targeted Q10 analog with superior absorption and accumulation by
mitochondria in vivo. The current study tested the effect of 6-weeks
of daily oral MitoQ (20mg) on FM and ME/CFS with two
randomized, blinded, placebo-controlled crossover studies. A third
open label cohort contributed data but did not receive placebo.
Results suggest MitoQ may reduce pain and increase working
memory in FM. Further investigation in a more controlled
environment is warranted.

Basically it worked for those with fibro but not pwme.

I took part and thought Mitoq was the placebo. mind you I thought I had side effects from the placebo tablets (is PEM from perceived benefit possible?) so you may want to disregard my perception of this!

I've previously taken normal CoQ10 and not noticed benefit either. I do get some benefit from d-ribose, b2, and b12. I take l-carnitine too though I haven't been very systematic in measuring that.

Sorry the formatting is odd, copied from pdf file.

 

[Sasha]

Thanks, @Jenny TipsforME. I just tried upping my 50 mg daily dose of ubiquinol to 100 mg and it dropped my BP so low (85/50) that I've abandoned the experiment.

I think this underlines that it's important to keep an eye on BP if you're trying this (I already had low BP, but not that low!).

 

[Jenny TipsforME]

@Sasha I was getting bp that low for a while (not CoQ10 related). horrible sensation.

 

[Sasha]

@Sasha I was getting bp that low for a while (not CoQ10 related). horrible sensation.

I didn't feel much different but didn't feel that it was safe to have it go so low.

 

[Ysabelle-S]

I got no benefit from MitoQ. Or at least, I had to take two pills to match the 400-600mg of CoQ10 I was taking, and the latter is much cheaper than MitoQ, though by no means cheap. Unless MitoQ was a lot cheaper, I wouldn't try it again. If it was cheaper, I might have tried a higher dose.

 

[PatJ]

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?

It lowers my already low blood pressure, so I can't take it. Anyone with low BP who gives it a try should probably start low and increase slowly while watching their BP.