The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.
  1. otterjack

    otterjack

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    Just started taking d ribose and I think....possibly...maybe....I have a tad more energy. Maybe. I'm obviously hesitant to trust this, keep considering all the other things it could be, but I do seem to be able to do more. And my mind is a bit clearer. Mmmmm.

    Anyone else taken d ribose? What was your experience?
     
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  2. perchance dreamer

    perchance dreamer Senior Member

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    I take Jarrow D-Ribose, but can only take 1/8 of a tsp. It does give me energy, but also insomnia in any dose higher than that. Wish I could take more!
     
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  3. otterjack

    otterjack

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    Gosh, that's interesting, Perchance Dreamer, ope it doesn't result in more insomnia for me - I've only just addressed that with Melatonin! How long have you been taking it?
     
  4. perchance dreamer

    perchance dreamer Senior Member

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    I've been taking it a long time. I have such a sensitive system that I used to only be able to take 1/64 tsp. without getting insomnia.

    I think insomnia is extremely uncommon with ribose, judging from internet searches I did at the time. D-Ribose seems to be well tolerated.
     
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  5. Mary

    Mary Moderator

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    @otterjack - I've been taking d-ribose for 10 years and would not be without it. I take around 15 grams a day, 1/2 in the morning with my coffee and the rest after lunch. It does make a difference. Sarah Myhill recommends taking it with coffee or some type of caffeine, which is supposed to potentiate its effect.

    Several months ago I tried cutting back on my dose, but my energy correspondingly went downhill.

    That's too bad it causes insomnia for you, @perchance dreamer! I've had tons of experience with insomnia, but never due to d-ribose.
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I strongly suspect that it is generally better for men than for women. This was partly confirmed by BBC Inside Science this evening, where they picked up on the fact that drugs work differently in males than in females. (Unfortunately they didn't seem to have overcome their obsession with testing in animals though.)

    Ron Davis/his colleague (can't remember the name, sorry) has also found big genetic differences between men and women.

    I can't tolerate d-ribose. It was awful, and messed up my guts. This has also been found by other scientists - about a third of people can't tolerate it.
     
  7. Ravn

    Ravn Senior Member

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    Have been experimenting with D-ribose (different doses, timings, combinations with other supplements) for about 2 years.

    For me, a combination of a total of 10g D-ribose in 3 split doses plus 500mg Acetyl-L-Carnitine in the morning helps enormously with brain fog - but sadly with absolutely nothing else.

    Higher doses don't increase this effect for me, plus they upset my stomach a little.

    Taking only one or the other doesn't work for me, it has to be the combo.
     
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  8. otterjack

    otterjack

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    I've actually been adding the d-ribose to my mid afternoon coffee, without knowing that caffeine assists it's effect. I'll continue with that. I'm so hoping this isn't short lived - so many other supplements have been and gone with no effect whatsoever.

    It's good to hear that it has been helpful for other people too.
     
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  9. perchance dreamer

    perchance dreamer Senior Member

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    I had forgotten that some people don't do well with d-ribose.

    @otterjack, I wish I could have coffee in the mid afternoon! It would give me sleep problems.
     
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  10. Murph

    Murph :)

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    I take d-ribose along with whey protein. The combo has done really amazing things for me - i truly believe for some people the amino acids can be used as energy and really make a huge difference to symptoms. Perhaps the ribose is the important part of it but I'm enjoying the effect too much to do an experiment and find out what specifically is helping. I literally just jogged round the block this morning. admittedly it's a small block - maybe 600 metres - but still!! :) I'm in a condition I haven't been in for years.

    tl;dr I recommend d-ribose. consider combining with whey.
     
  11. sue la-la

    sue la-la

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    i take d-ribose in a milkshake - with whey protein (incl cysteine), rice milk, cocoa powder & a dash of pink salt.

    it's especially useful when my muscles are exhausted after a minor activity - it gets them back to non-painful within a few days, instead of a few weeks.
     
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  12. otterjack

    otterjack

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    @Murph - I have why protein too, though only a couple of times a week. Might up the amount and see how things go when combined with the d-ribose.

    Well done on your jog round the block!
     
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  13. Murph

    Murph :)

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    fyi I megadose the whey. 100-150g/day. it seems very effective.
     
  14. mgk

    mgk Senior Member

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    You're one of the few people I've come across who has the insomnia problem as well. I recently started experimenting with ribose and noticed that even a gram (about 1/4 tsp) seems to cause insomnia for me. That's taking it in the morning by the way. I'm trying 1/16 tsp now.

    I'm usually not this sensitive to supplements... I wonder if it has something to do with my G6PD deficiency since ribose is one of the products of the pentose phosphate pathway where the G6PD enzyme plays a critical role.

    I should mention that I want to keep taking ribose because I do notice an important benefit from it: much more mental stamina. In my usual state, I have about 2-3 hours in the morning where I can read something and understand it; after that, it's like the words don't translate into concepts in my mind. I keep reading the same sentence over and over and it just passes through. I can still consume other forms of content like video or audio, but even then I have to rewind several times.

    When taking ribose -- even a relatively small dose like 2 grams -- I can read and understand what I'm reading all day, it's incredible. I've experimented with most of the other mito supps but never experienced a dramatic difference like this.
     
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  15. Pyrrhus

    Pyrrhus As seen in the “Pyrrhus & Sisyphus Comedy Hour”

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    I also have sleep disruption with any dose higher than 3 grams per day.

    The interesting thing about my ribose sleep problem is that it is delayed. The poor sleep didn’t become obvious until after I’d been taking it for 3-4 weeks. I blamed the poor sleep on so many other things before I realized it was actually due to the ribose!

    I wonder how many other people may be taking high-dose ribose and blaming their poor sleep on something else?

    I now take 2 grams a day, without any sleep distortion.
     
    Last edited: Nov 28, 2018
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  16. perchance dreamer

    perchance dreamer Senior Member

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    @mgk, I did take just 1/64 of a tsp. of ribose for a long time. At some point, my doctor suggested beta glucan to help with my immunity, and then I started slowly increasing the ribose up to 1/8 of a tsp. I think I was able to go up because of the beta glucan because I was able to increase dosage on some other supplements I had been having trouble with, too.

    Beta glucan is supposed to improve the T2/T3 balance, if I'm remembering correctly. Why that would improve my tolerance to certain supplements I don't know.
     
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  17. mgk

    mgk Senior Member

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    @perchance dreamer - Very interesting. I'll look into that, thank you.

    Out of curiosity, have you ever tried creatine? People who benefit from ribose report that creatine potentiates the effects of the ribose, which would make sense based on the biochemistry. Theoretically, having a larger pool of creatine phosphate should cause less ribose to be lost from the cell during times of greater than usual energy demand.
     
  18. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    I take it and does add some energy. @mgk I want to research creatine to add, Just all this supplements add up $$$ so frustrating.
     
  19. mgk

    mgk Senior Member

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    Yeah, I feel you. I used to go through phases of saying f!@# it all and stopping all my supplements, realizing how much they were helping, then adding them back in. I've come to realize that at least for me, this was a side effect of not knowing which ones were really helping and which ones were just a waste of money.

    I've become much more methodical about my experiments over time. I add one supplement at a time, take it for a while, then go off of it, repeat a few times, etc. until I know exactly what it does for me. If I don't notice a benefit, I don't take it. There are so many potentially helpful supplements out there that if you don't do this, your supplement list will quickly grow out of control. It's a painstaking and slow process but pays off in the end when you have a handful of reliable supplements that actually help. It's much easier to justify the cost then, plus the cost is a lot less anyway since you eliminated all the useless ones.

    Sorry if this is presumptuous; I have no idea if this is even close to your situation. I just thought I'd share my experience because what you said reminded me of it.
     
  20. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    @mgk No, it is so funny I use the same method!!! I try everything 3 times and stop and start again.
    I also do one at the time and add and remove accedingly. Funny enough I recorded a video a few days ago to that effect! Thinking the same thing, maybe helping save money to somebody by giving the strategy! So tx for the thgouht!
     
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