Supplements

Linda

Can anyone tell me if they have Benefited taking
D-Ribose and CoQ10 for ME/CFS?

Are there any other supplements someone can suggest.

Daffy_Dave

Hi @Linda, and welcome to the forum Just so you know, I've moved your post to the "Management Lounge" section of the forum, which is the place to talk about things like supplements.

In terms of my personal supplement use, I take 300mg of Ubiquinol daily, and have found when I've gone off it (to test usefulness) I'm not as well-functioning as I am when on it. It's on the expensive side, but helpful.

The two most beneficial things I take are low-dose naltrexone (LDN - a prescription medicine rather than a supplement) and B1 - both are in the earlier stages of the research supporting their use, but their is some support. There were two articles on Health Rising about B1 which is what lead to me giving it a try - the second (which links to the first) is https://www.healthrising.org/blog/2021/06/02/fibromyalgia-chronic-fatigue-syndrome-benefit-high-dose-thiamine/ - but please note that it's possible to cause health problems by taking too much.

For LDN, that's been around a bit longer, and will probably require a prescription from a compounding chemist. The scientific support for this is stronger, but it's a medication that can interact with others (particularly pain meds), so gain caution is warranted - a recent study on it in relation to ME/CFS is https://www.frontiersin.org/articles/10.3389/fimmu.2021.687806/full

Note in both cases (and with Ubiquinol) experience varies across the ME/CFS community - what helps some people doesn't help others.

As always, it's important to discuss medicines and supplements with a treating doctor, as what might work for someone might not for someone else, and some supplements can interact with each other/with prescription medications.

river

@Linda I used to take these when my ME/CFS was only moderate. I found that either of them on their own did nothing, but together they reduced the time it took for me to recover from PEM, by a couple of days. That was pretty much the only effect.

I took 300mg ubiquinol (a more bioavailable form of CoQ10) and 2-3 tsp of ribose a day.
I really hated taking the ribose as it's a sugar which has to be eaten or mixed in fluids and drunk, which I struggle with due to nausea, the energy required to do it, and aversion to the sweet taste. Some people may love it, it just tastes like sugar.

I stopped taking these supplements because I hated taking the ribose and the ubiquinol was so expensive, it didn't seem worth it for the minor reduction in PEM duration. Sometimes I still try taking them just during a crash. I'm not sure if it helps or not.

A supplement I've had a bit more success with is branch chain amino acids. I got a sports nutrition supplement called Alpha Amino which has a very high concentration of BCAAs and I found that if I'm not already in a crash, it seems to significantly boost my energy and help with brain fog and exertion intolerance for some hours after. Actually the first time I took it I thought I was cured haha (not the case, of course I immediately overdid it and crashed).
Unfortunately, like ribose, this is a powder you mix into a drink and not only is it extremely sweet, it also has strong flavoring and tastes like a soft drink. Some people might love this, I absolutely hate it and it makes it hard for me to drink, so I've kinda stopped using it unless I'm desperate. You can get BCAAs as capsules as well but only in a much lower dose which I found didn't do much for me.