Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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D-ribose Teitelbaum study on 257 CFS/FM patients

Discussion in 'Latest ME/CFS Research' started by Sasha, Jul 5, 2012.

  1. Sasha

    Sasha Fine, thank you

    Just came across details of this study on the MEA website.

    Rather uninformative - not clear whether all patients had a diagnosis of both FM and CFS.

    Presumably they're using a broad definition of CFS to have a population prevalence of 2-4%.

    And no control condition.

    Still, does anybody have views on D-ribose? I happen to have some in the cupboard that I've never used
    MeSci likes this.
  2. Dolphin

    Dolphin Senior Member

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  3. Nielk


    I have tried D-Ribose when Dr.Teitlebaum first came out with it that it helps with CFS - about 5-6 years ago.
    It did nothing for me personally.
    MeSci likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    if ribose didnt help u once before maybe its because other issues need to be sorted first eg infections, good sleep, other mito supps like q10, acl carnitine etc. Im not saying this is the answer but i think it comes down to timing when to use these supps, when on top of other infections and issues then one could get benenfits from ribose. Just a thought, as its now helping me recover from activity quicker where previously got minimal from it. Sorting out other abnormalities out has helped me alot.

  5. Nielk


    Hi heapsreal,

    Yes, you are right. I should try it again and see if it would help me now. No harm in trying.

  6. John Mac

    John Mac Senior Member

    Liverpool UK
    I haven't read the full article so I don't know if it is explained further on but 257 people started this 3 week treatment and only 203 completed it. That's more than 20% of the trial that we have no results for. We have no way of knowing whether they improved or not, but I'm guessing they didn't improve otherwise if it was me I'd want to be telling everyone about it. I can imagine people being recruited on the basis of a potential improvement and just giving up after a couple of weeks when no improvement arrives. If those 20% didn't improve that could have a significant effect on the resuts.
    As a general rule shouldn't the study be required to explain what happened to the missing patients. If i remember correctly nearly 800 patients were missing from the final results of the Pace study.
    Helen, MeSci and catly like this.
  7. Chris

    Chris Senior Member

    Victoria, BC
    I do recall that Dan Peterson said somewhere that he did not believe it helped, though he like Q10 and, I think, acetyl-l-carnitine. Chris
  8. sianrecovery

    sianrecovery Senior Member

    Manchester UK
    Sometimes it seems to help me, sometimes not - I suspect placebo at work. Also, tends to be made from corn, which some people cant tolerate.
  9. K2 for Hope

    K2 for Hope ALways Hoping

    Jacksonville, FL 32258
    In 2008 - 2009 I used Corvalen along with multiple supplements and prescriptions such as anti-virals, antibiotics, pain killers, duragesics, sleep meds, multiple supplement combinations as prescribed etc. I had an excel spreadsheet full of scripts and another one full of supps as I adhered to the protocol via one of his clinics. I also went monthly for a full day of infusions and shots for almost 1 1/2 yrs.

    I had about 60% improvement within 4-6 months, then a considerable relapse/decline after that. To the point, they advised me to see a heart specialist, gastro-enterologist, sleep specialist, pain specialist, etc.

    In other words, although I spent a fortune, used all the advised supplements and prescriptions (to take care of latent viruses and any pathogens).... and I still relapsed.... There were several patients in the clinic who seemed to have improved considerably. But I noticed that they all seemed to do well for about 4 - 6 months. I never seemed to find anyone who stayed as long as I did. It could have been the cost as the following year (2010), the cost went to $10,000 for a year's commitment. (And my money was all gone by then.)

    I still receive their newsletter and do believe that some of the items they sell may be of quite good benefit. I can only relate personal experience. The supps usually cost me around $300/month.That did not include the scripts, the Dr's appts or the infusions.
    MeSci likes this.
  10. biophile

    biophile Places I'd rather be.

    It is difficult to take non-randomized non-blinded trials all that seriously, especially since Teitelbaum already did a pilot open-label study years ago IIRC?

    Last year I tried 3 x 5g of d-ribose per day with fruit juice for about 2 to 3 weeks. I suspected that it may have mild benefits for muscles including the heart, but it was not what I hoped for and also seemed to increase dizziness and brainfog-like symptoms. I later read that d-ribose does not actually enter the brain and competes with other sugars for uptake into the liver. I gave the rest away but I still kept enough for several days worth in case I want to do a confirmation test.

    It is not the first time that so-called mitochondria supplements (eg acetyl-l-carnitine) and antioxidants (eg ubiquinol) have given me unexpected adverse effects which seem to resemble brain-PEM.

    A few dozen maybe, you may be thinking of the patients excluded for not meeting Oxford criteria for CFS.
    Jennifer J and MeSci like this.
  11. jeffrez

    jeffrez Senior Member

    Gives transient help, in my experience. A couple hours of 1 or 2 percent improvement in muscle energy. Then it wears off and you're back to square one again. Don't think it's the miracle cure Teitelbaum touts it as.
    MeSci and meandthecat like this.
  12. Jenny

    Jenny Senior Member

    I took this for 6 months at 15gm a day, along with other mito supplements. No improvement.

    MeSci likes this.
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    It has been excellent along with my other supplements. Great for ATP, the heart muscle, skeletal muscle, energy after activity. I take it twice a day. I have for a long time. All of my supplements work together and are taken long term. My CFS has not been a problem for a while now.
  14. Patrick*

    Patrick* Formerly PWCalvin

    I view D-ribose as a sort of masking agent. It certainly improves my energy on a daily basis, but I doubt it's doing anything beneficial for my health in the long run. It's a temporary boost, like coffee only less severe.

    I agree, it's not the wonder-cure that Teitelbaum seems to think it is, but I can definitely tell the difference between when I take it and when I don't as I explained in a recent blog post. I won't repost the whole thing here, but if you're interested in my full take on D-Ribose, here it is.
    MeSci, rosie26, jeffrez and 3 others like this.
  15. Anne P

    Anne P

    D-ribose is very helpful to me. I've been severely ill for 30 years and then 6 years ago became bedridden 23.5 hrs a day. A year ago I began taking d-ribose 2 teaspoons daily and after 2 weeks I was able to be out of bed many hours more a up to 6 hrs a day out of bed. Its the only mitochondrial energy supplement I can tolerate and I would hate to do without it!
    Helen, rosie26, Adlyfrost and 3 others like this.
  16. Rolo

    Rolo Too ill to twist

    Antwerp, Belgium
    For some it's working for other it is not. It seams there's a clear correlation with the intake of other supplements. What are the other supplements you are taking and do you have any idea which are the synergetic ones: Maybe Q10, Mg, L-Carnitine, ??

    Nice to hear you are doing well.
    Adlyfrost likes this.
  17. Adlyfrost

    Adlyfrost Senior Member

    If mitochondrial dysfunction is a symptom of a viral infection and d-ribose is treating that symptom it would explain the masking effect.

    It is interesting that like caffeine, some PWME thrive on it and some can't tolerate it at. I am just starting it for PEM. I excited because I can at least tolerate some exercise, and I can tolerate small amounts of caffeine too, such as in chocolate or green tea. But this wasn't always the case: before I started an anti-viral, gut healing regimen on a strict chicken broth based diet I couldn't tolerate any caffeine at all. It would give me panic attacks and tachycardia.

    I wonder if people who can't tolerate d-ribose can't also tolerate caffeine? Would be an interesting poll.
    MeSci likes this.
  18. A.B.

    A.B. Senior Member

    Did nothing for me.
  19. catly

    catly Senior Member

    outside of NYC
    Didn't help me one bit.
    MeSci likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    HORRIBLE effects on me. Felt like there was a war going on inside me, and my insides felt on fire while my skin was cold and covered in goosebumps. Jittery and shaky and fearing a little for my sanity. And my dermatitis came back, after I had abolished it with a leaky-gut diet and supplements after suffering with it for years.

    A friend with ME said that her thrush came back after she started it.

    An acquaintance with ME said that he felt like disembowelling himself with a kitchen knife after taking it.

    Erica Verrillo says in her e-book that Dr Cheney found that about a third of his patients cannot tolerate it.

    I looked for some studies recently and all I could find in the literature was the one cited at the start of this thread, and thought that it was a very weak piece of research, conducted by someone who sells the stuff.

    I agree with @Patrick* that it may be a masking agent - a sticking-plaster approach that may treat a symptom for some people but perhaps have adverse consequences for real improvement. If it provides energy, this is IMO likely to be energy that the body doesn't have the resources to spare. Someone said this in another thread about d-ribose (or was it this one - haven't read it all yet!)

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