RiboGen for ME/CFS

[Unduki]

I've been taking RiboGen for almost a week and haven't noticed any changes - which is good for now. It means no side effects. I'm very sensitive and usually get side effects right away. The only change I've noted was a decrease in cluster headaches, but that's most likely from a recent change in blood pressure medication. (I'm so hoping this is the case. I can't take much more of these headaches.)

Still reading (as much as my brain will allow) and watching for interactions, etc... I really don't like using myself as a guinea pig... Hopefully, I'll keep up the RiboGen journal I started. If it works, I probably will... LOL

 

[LiddleBethy]

Just finished my first bottle of Ribogen, which means I am beginning my second month. Nothing to report just yet, but I am very hopeful. The best part about taking Ribogen for me so far is that I have had no side effects!! I am so sensitive to so many supplements, even natural ones, and have had to stop so many therapies because I couldn't tolerate them. It is a great feeling to actually be able to take a supplement that I tolerate!
May this cure from nature (no surprising, right?) be a great help for us all!!!!

 

[Undisclosed]

METHODS:
Robuvit® is a new proprietary and exclusive extract of oak wood with important antoxidant actions. The dosage of the supplementation was 200 mg/day for at least 6 months. The CFS questionnaire and the Brief Mood Introspection Scale (BMIS) questionnaire were used to evaluate mood variations associated with CFS patients. The CFS form includes an analogue scale to record the variations of single symptoms with a score range of 0-10. At inclusion into the registry study, at least 5 symptoms were present. All subjects (age range 35-44; BMI range 24-26) with CFS were tested for oxidative stress: 61 out of 91 subjects had an increased value of oxidative stress. The BMIS scale evaluating mood changes in time was also used. The evaluation was repeated at 3 and 6 months.

Psychiatric measurements -- mood variations? How did they measure oxidative stress?

METHODS:
The registry included 38 CFS subjects and 42 comparable controls. There were no dropouts in the 4 weeks of follow up; the subjects were evaluated for a further period of 6 months. The management plan included: improved/increased sleep; reduction/abolition in smoking and alcohol or any other agent that may have affected them; control of diet, increase in dietary proteins; good hydration; rest (1/2-1 hr/day) and exercise (at least 30 min/day); planned relaxation time; increased time in open spaces. In the Robuvit supplementation group - 300 mg/day of Robuvit was used.

How does this translate into symptom decrease. It seems to me that these studies are focused on unhealthy mood disordered patients.

 

[Undisclosed]

It says on a RiboGen website:

An effective solution to general fatigue must originate at the cellular level. RiboGen™ French Oak Wood Extract may meet this essential need.

This is not something for ME as we don't suffer from general fatigue.

 

[LiddleBethy]

It says on a RiboGen website:



This is not something for ME as we don't suffer from general fatigue.

Kina, From what I have read, it was tested on CFS/ME patients. "Others" benefit from it as well, however.

 

[Undisclosed]

Kina, From what I have read, it was tested on CFS/ME patients. "Others" benefit from it as well, however.

Where is this and what kind of cohort were they using because I see no research that says this helpful for ME patients. Just trying to figure it out. I am very particular what I spend my lack of money on.

 

[LiddleBethy]

Kina, Life Extension's December 2014 issue has an article on it. Title of the article on page 22 of that issue, "New Option for Chronic Fatigue Syndrome."

 

[Undisclosed]

@LiddleBethy Are there any independent studies that have tested this product with a proper cohort of patients with ME, not just fatigue patients. This is important.

From your information:

These weren’t all of the changes, though. On a standardized mood scale, supplemented subjects had significant increases in their scores on positive items including feeling active, happy, peppy, caring, calm, and loving, along with significant reductions in negative items such as feeling gloomy, fed-up, grouchy, sad, or tired. In fact, the overall mood evaluation score in supplemented subjects rose from an average of -6.93 at baseline to +4.32 at six months. For controls, the average score at baseline was -6.5 and rose only to -3.4 at six months.3

In those with chronic fatigue syndrome, scientists have found that oxidative stress levels are usually elevated.3 At the start of this study, 65% of supplemented and 70% of control patients showed elevated oxidative stress on blood tests. Following the supplementation period, control patients showed no decrease in oxidative stress, but supplemented subjects had 8 and 10% reductions at three and six months, respectively.3

I do NOT want a supplement that makes me feel active, happy, peppy, caring, calm and loving. I can do that all on my own. It seems they are saying people improved in depressive symptoms. How are they measuring oxidative stress levels and how does this connect with mood and then to CFS. It's not showing anything except that yet another supplement company drumming up business using psychobabble and no real research to prey on desperate patients. Since it's Christmas, I say bah humbug.

 

[LiddleBethy]

@LiddleBethy Are there any independent studies that have tested this product with a proper cohort of patients with ME, not just fatigue patients. This is important.

From your information:



For pete's sake, I do NOT want a supplement that makes me feel active, happy, peppy, caring, calm and loving. I can do that all on my own. It seems they are saying people improved in depressive symptoms. How are they measuring oxidative stress levels and how does this connect with mood and then to CFS. It's not showing anything except that yet another supplement company drumming up business using psychobabble and no real research to prey on desperate patients. Since it's Christmas, I say bah humbug.

Kina, The article mentions studies of people with chronic fatigue syndrome, not simply people with chronic fatigue. I suggest you get a hold of the Dec. 2014 issue and make a determination for yourself. Take care....

 

[Undisclosed]

Kina, The article mentions studies of people with chronic fatigue syndrome, not simply people with chronic fatigue. I suggest you get a hold of the Dec. 2014 issue and make a determination for yourself. Take care....

I did look at the article. No blinding of participants. No mention of PEM, Seems to be a fatigue supplement. One study that says a decrease in oxidative stress helps cfs patients with certain symptoms. All seems to related to selling a supplement. I am not convinced.

 

[JanP]

I came across this site while looking for reviews of RiboGen. I am about 2 weeks into my first bottle and am tolerating it well but haven't seen any positive effects yet. I purchased mine at iherb.com for $22 ($5 off with coupon code xan252 and free shipping for order over $20). Hopefully some reviews will show up on their site after a few people try it. I've had CFS for 26 years and usually don't tolerate many supplements for long periods of time. I look forward to your results and will post mine.

 

[Little Bluestem]

The management plan included:
improved/increased sleep;
reduction/abolition in smoking
and alcohol or any other agent that may have affected them;
control of diet, increase in dietary proteins;
good hydration;
rest (1/2-1 hr/day)
and exercise (at least 30 min/day);
planned relaxation time;
increased time in open spaces.
In the Robuvit supplementation group - 300 mg/day of Robuvit was used.

Good grief! With that many interventions, how are they going to determine which is responsible for any effects, good or bad?

 

[minkeygirl]

And I'm curious about @CFS_for_19_years comment about wanting to eat. Did it increase your appetite to the point where you wanted to eat all the time? Weight gain? I look at a Lyrica capsule and I eat non-stop.

 

[CFS_for_19_years]

And I'm curious about @CFS_for_19_years comment about wanting to eat. Did it increase your appetite to the point where you wanted to eat all the time? Weight gain? I look at a Lyrica capsule and I eat non-stop.

My appetite didn't increase, it just changed the types of food I wanted to eat. I don't feel like eating junk food. I now prefer to eat real meals (protein, vegetables, fruit).

I take Lyrica too and understand your concern. I believe it has made me gain weight.

 

[sickntired771]

The article in LE Magazine sounds so promising but it sounds too good to be true. I think that I would like to hear more testimonials from people rather than a magazine before I would give it a try.

 

[Tulipa]

My daughter has had ME/CFS SEID or whatever for 14 years, she is now 28. Started on the extract in November 2014. Her changes have been subtle, and we did not relate it to the French Wood extract. Over the three months, looking in hindsight, I remember comments that she has made. "I feel hungry at the strangest times" (she is underweight) and she has gastroparesis, which means small meals and moving afterwards, so no she has not put on weight.

She is sleeping less, last week was sitting on her balcony at 7 in the morning having tea and watching hot air balloons. I said welcome to the world of mornings, are they not beautiful! (She did return to bed afterwards) She is sleeping less during the day. The penny dropped for her when she received blood test results, for the first time in years she is not anemic. Her comments, the only difference is the French Oak extract.

She is under the care of a highly trained and experienced naturopath who works in conjunction with her doctor. She takes supplements when required but takes no prescription medicines at all. The only reason we tried the extract is because there was a scientific study. I also notice that her moods are more stable.

 

[CFS_for_19_years]

@Tulipa, I'd like to welcome you and your daughter to the forum.

Thank you for sharing your daughter's improvement on Ribogen with us. I think needing less sleep is a reliable sign that something has been working in your daughter's favor. Is there any chance she was taking any products containing iron during that period? Taking iron could explain an improvement in anemia and some gains in energy. I'm not being skeptical of your results, but I'm hoping to cover all the bases.

I haven't been as fortunate while taking Ribogen (and I took it for 3 months), but then again, I'm over 60. As far as I know, this is the only thread on this forum that has discussed Ribogen and I think many people balked at the price. I also think yours is the first testimonial I have read, positive or negative. I hope there will be reports from others who took the plunge.

Please keep us posted on your daughter's progress.

 

[JanP]

I recently finished my third bottle of RiboGen with no noticeable improvement. With the third bottle I took two on many days. I had no negative effects and tolerated it quite well. I have not reordered but am debating whether to continue on to six months. Due to the cost I think not.

 

[Tulipa]

@Tulipa, I'd like to welcome you and your daughter to the forum.

Thank you for sharing your daughter's improvement on Ribogen with us. I think needing less sleep is a reliable sign that something has been working in your daughter's favor. Is there any chance she was taking any products containing iron during that period? Taking iron could explain an improvement in anemia and some gains in energy. I'm not being skeptical of your results, but I'm hoping to cover all the bases.

I haven't been as fortunate while taking Ribogen (and I took it for 3 months), but then again, I'm over 60. As far as I know, this is the only thread on this forum that has discussed Ribogen and I think many people balked at the price. I also think yours is the first testimonial I have read, positive or negative. I hope there will be reports from others who took the plunge.

Please keep us posted on your daughter's progress.

She has been taking iron supplements for the past 14 years, but blood tests have always shown problems.

 

[sickntired771]

It sounds like most haven't found much difference within a few short weeks. I was considering purchasing this because of the LE article but it sounds like hype.