D-Ribose and the failure of the scientific community.

[paulie]

I have just started supplementing with d-ribose along with coq10 ( ubiquinol), l-carnitine and niacinamide.

I have in the past tried supplementing with b12/d3/k2/magnesium/kelp/coq10 (ubiquinone) and multivitamins/b-complex.

The reasoning behind these new supplements I am trying make sense in terms of mitochondria support. However it seems to me there is a failure within medicine to investigate these drugs properly. D-ribose is a drug that *seems* to help a lot of people. There are many comments across the web where people with chronic fatigue say it has proven to be really important in helping them. My question is why is there so little scientific research into ribose as a supplement for chronic fatigue sufferers? It seems we are still relying on only a couple of not very reliable research papers from many years ago. (Unless there are others I have missed). One of the research papers involved just one individual. The other was paid for by a manufacturer of d-ribose and had no control placebo element.

Is it unfair to say there is a big problem with the scientific community and government bodies in terms of lack of research? Is it any wonder that (often desperate) people turn to dubious sources for help in finding relief? Is there not a duty for government scientific bodies to research the claims made by supplement manufacturers when the anecdotal evidence seems to strongly support the claims?

Or is it the case that a supplement like d-ribose is just one of hundreds or thousands of chemicals with questionable claims attached and thus it takes no precedence over any other claims in terms of allocating research spending?

Considering the long term impact on society long term illnesses like cfs shouldn't the more plausible claims be researched (I.e the ones where patients are clearly saying the supplements are working)?

Of course there is the issue with pharmaceutical companies not necessarily wanting to find cures so I can see why research wouldn't come from their. But government and university research bodies should be looking into these things surely?

Maybe I am reading to much into all those positive comments. Who knows if they are genuine? Difficult to tell.

 

[panckage]

You are preaching to the choir. There has been little funding for CFS so the studies tend to be few and far between and rarely followed up on

 

[Dolphin]

Considering the long term impact on society long term illnesses like cfs shouldn't the more plausible claims be researched (I.e the ones where patients are clearly saying the supplements are working)?

Of course there is the issue with pharmaceutical companies not necessarily wanting to find cures so I can see why research wouldn't come from their. But government and university research bodies should be looking into these things surely?

A problem with supplements is there is usually no patent so it's not financially worthwhile for companies to invest in trials.

However I don't see that the problem is simply with governments and the like. I don't think the ME/CFS community historically has raised enough either, especially considering the large numbers affected. This has improved to some extent in recent years with online appeals. But there is still relatively little on the ground fundraising for research except in the UK. There is a little in a few other countries but not that much. There are big countries where there seems to be virtually no fundraising for research. Government bodies only fund a percentage of grant applications: the other ones will go unfunded without private money. Also researchers won't stay in the field unless there is money.

 

[Justin30]

@paulie

The Failure of the Scientific community around ME is over 50 yrs old.....

A pathetic shameful act on the part of huminaty and the people that ignored severe patients as mentally ill.....

 

[M Paine]

Personally if someone gave me a million dollars, and gave me free reign to design a study, it would unlikely be on one of the many supplements and how effective they are. I would be more interested in trying to understand and tease out the root cause of this disease.

 

[Jenny TipsforME]

The thing with supplements is we can buy them ourselves and do our own studies. www.Mendus.org is coincidentally doing this with D-ribose. I took part and tried to use stevia as a placebo (it looks the same). Unfortunately the blind placebo didn't work - the equivalent dose of stevia is way too much and I had side effects from that. This meant my results weren't amazingly useful but it did show less pain on D-ribose . (more recently Mendus has accessed proper placebo tablets from the manufacturer for a mitoq coQ10 study)

Supplements that can't be patented but have benefit are really useful for us to investigate because they are likely to stay affordable.

Something that may be worth a Mendus study could be combinations of supplements for mitochondria support. Eg start with D-ribose, what happens when you add in acetyl l-carnitine, what happens add CoQ10, what happens when add B12 etc but randomise the order people add in the supplements.

Jarrod Younger is doing something a bit like this with Gulf War patients, testing 9 supplements which are easily available.

 

[Seven7]

My mito cocktail if it helps anybody, got mine on a OI/POTs presentation slides.

ALA+ALC = 200mg/500mg twice a day (early and mid day ) if not cant sleep. All comes in one pill.
CoQ10 = 200mg recommended (400 mg to start then lower to 200mg) I do 800mg (can up as much as $$ permits).
D-Ribose = 15mg a day (5mg+5mg+5mg thought out the day).
NAC = 1,000mg (I don't always do this one).

 

[ukxmrv]

Supplements are a hard one to assess because no one approach seems to fit all. If D-Ribose was a cure for ME or CFS we would all know about it. It's discussed often enough.

If it was a cure then we wouldn't need research or a paper published. We would all know about it as it is common.

I wouldn't personally want limited and research funds spent on something that at the best gives some people like me a little extra strength or energy. The priority for me is finding a cure for this disease before I die.

I'm taking a combo of similar supplements myself and relieved that I can afford to buy them at the moment.

One advantage IF there was a good research paper would be that the NHS and NICE could possibly fund this for me one day if it was proved effective as a treatment. However, these supplements aren't saving my life or making a huge difference.

People who are being helped by D-Ribose (as in cured and back to work) can I assume, keep buying the supplement. I'm guessing that this will be very few with ME or CFS (not oxford criteria).

 

[Jenny TipsforME]

Very unlikely that D-ribose is a cure! Quite likely it could ease symptoms somewhat in people who have some mitochondria dysfunction, possibly in combination with other medication and supplements. It might be chasing the 5% improvement but they add up.

 

[paulie]

A problem with supplements is there is usually no patent so it's not financially worthwhile for companies to invest in trials.

However I don't see that the problem is simply with governments and the like. I don't think the ME/CFS community historically has raised enough either, especially considering the large numbers affected. This has improved to some extent in recent years with online appeals. But there is still relatively little on the ground fundraising for research except in the UK. There is a little in a few other countries but not that much. There are big countries where there seems to be virtually no fundraising for research. Government bodies only fund a percentage of grant applications: the other ones will go unfunded without private money. Also researchers won't stay in the field unless there is money.

Fair point about the cfs community not raising enough either

I understand that governments have limited resources and so can only grant certain research projects funding. Given the long term strain on resources cfs must have though I would have thought it might get some funding. Guess other things may place more of a strain (e.g. smoking/obesity).

 

[paulie]

Personally if someone gave me a million dollars, and gave me free reign to design a study, it would unlikely be on one of the many supplements and how effective they are. I would be more interested in trying to understand and tease out the root cause of this disease.

Yes I agree that would make sense. If ribose does help people then there should be some underlying issue where not enough ribose is being made by the bodies cells or something like that.

Having said that if ribose was confirmed as being significantly helpful then it may be accepted generally as being prescribable and thus presumably become much cheaper for patients.

 

[paulie]

The thing with supplements is we can buy them ourselves and do our own studies. www.Mendus.org is coincidentally doing this with D-ribose. I took part and tried to use stevia as a placebo (it looks the same). Unfortunately the blind placebo didn't work - the equivalent dose of stevia is way too much and I had side effects from that. This meant my results weren't amazingly useful but it did show less pain on D-ribose . (more recently Mendus has accessed proper placebo tablets from the manufacturer for a mitoq coQ10 study)

Supplements that can't be patented but have benefit are really useful for us to investigate because they are likely to stay affordable.

Something that may be worth a Mendus study could be combinations of supplements for mitochondria support. Eg start with D-ribose, what happens when you add in acetyl l-carnitine, what happens add CoQ10, what happens when add B12 etc but randomise the order people add in the supplements.

Jarrod Younger is doing something a bit like this with Gulf War patients, testing 9 supplements which are easily available.

Will check out the mendus site. Thanks for the link. I would have thought community based research projects would be problematic. Isn't insurance a high cost in scientific research involving real patients? Also would mendus send pills out to people? Is that how normal research of this kind is done? I have no idea about these things really.

 

[M Paine]

If ribose does help people then there should be some underlying issue where not enough ribose is being made by the bodies cells or something like that.

Another reason that this is difficult to study, is the lack of biomarkers.

An analogy might be, in a type 1 diabetic, you could easily measure the severity of illness via a blood sample. Measuring blood glucose, or insulin levels to track disease severity.

Currently it might require self questionnaires to evaluate symptom severity, exercise tests (which are detrimental to a patient). There is no simple way to evaluate the efficacy of treatment. Add to this the broad scope of patients, who likely include multiple different illnesses broadly categorized as CFS/ME, then teasing out effective treatment becomes difficult.

We've seen many studies which have shown positive results for a range of therapy, from antiviral to graded exercise therapy, but when you look closely at the data, generally speaking it's possible, and unfortunately common, that studies (intentionally or not) scewe the results.

Without adequate biomarkers, research is hamstrung.

 

[Jenny TipsforME]

@paulie I think mendus is more informal than you're imagining. It's like group sourcing research. Generally we buy pills ourselves. Mitoq was an exception as active pill and placebo sent out by manufacturer for free to limited number of participants.