Ribose: Why might it work for ME/CFS patients

Learner1

Senior Member
Messages
5,889
Likes
10,660
Location
Pacific Northwest
Agreed. If ones immune system isn't perky, infections, which sap energy can thrive. Amino acids are used for various things - BCAAs (leucine, isoleucine, and valine) Are used directly in the mitochondria, and may be needed. Glycine, glutamine, and cysteine are used to make glutathione, which helps ameliorate oxidative stress, which is known to be high in PwME. Tyrosine is used to make dopamine which is needed for motivation and completing tasks. Methionine can be used up and is needed in methylation, on the way to making glutathione. Lysine is helpful in keeping herpes viruses in check. And arginine, citrulline and ornithine are helpful in reducing ammonia which can cause fatigue and brain fog and making nitric oxide which can help reduce peroxynitrites which impair complex I of the mitochondria and damage mitochondrial membranes, as well as doing many other good things on the body - low NO is found in many disease states.

Several ME/CFS researchers have found that amino acids tend to run low in PwME. I found mine tend to track with a patterns found, and that supplementing has greatly helped, Either individual aminos, or just upping by total protein intake to as much as 1.8 grams per kilogram of body weight a day.
 
Messages
220
Likes
545
I read about this on health rising blog and it seemed interesting, looked it up on a shopping site and I found out that theres a study that said it causes problems for mice, I don't know whether its a case of only applies to mice not people though. So I am feeling scared off even though there are many positive reports. At the moment I only do the BCAA and sometimes probiotic.
 

Learner1

Senior Member
Messages
5,889
Likes
10,660
Location
Pacific Northwest
I read about this on health rising blog and it seemed interesting, looked it up on a shopping site and I found out that theres a study that said it causes problems for mice, I don't know whether its a case of only applies to mice not people though. So I am feeling scared off even though there are many positive reports. At the moment I only do the BCAA and sometimes probiotic.
What causes what problems in nice?
 

Iknovate

Senior Member
Messages
117
Likes
155
I would like to throw a little wrench in the works here. Feel free to skip over this post if you find it too technical.

When ATP is degraded during intense muscle contractions, the result is Inosine, which is then lost from the muscle.

When talking about resynthesis of ATP, there are actually three metabolic pathways that can be used
Mind blown.
1. How the hell did anyone figure all that out with any certainty it's correct?
2. If we can figure that much out how come we can't figure out what's going wrong?
3. If we can figure out what's going wrong why can't we figure out how to fix it, or at least bush fix it?

If I knew enough to figure that much out I'd surely expect I could figure out the rest. Which leads me to conclude that it seems nearly hopeless - like finding one specific grain of sand on a beach hopeless.
 

Iknovate

Senior Member
Messages
117
Likes
155
My contact in Stanford said "there’s no one theory fits em all"... there seem to be subgroups even with PEM. Hormones and nutrients are in check, but amino acids and immune system not
Seems like the same applies to finding a practitioner who is going to look at and evaluate all of it :(
 

Pyrrhus

Senior Member
Messages
2,913
Likes
8,511
Location
U.S., Earth
How the hell did anyone figure all that out with any certainty it's correct?
A lot of hard work by many different biochemists over very many years. Biochemists have been working out cellular pathways since the early 20th century, and the human genome project at the turn of this century has helped to identify some of the pathways that have been missed. Still a lot of work to do, though.

If we can figure that much out how come we can't figure out what's going wrong?
Figuring out what is going inside a single cell is an in vitro experiment which is much easier and cheaper than an in vivo experiment, which requires experimental testing on a living being. There are many more experimental techniques that can be done in vitro, than can be done in vivo.
 

gbells

Improved ME from 2 to 6
Messages
1,433
Likes
1,764
Location
Eastern NC USA
I find that energy wise licorice helps a lot to reduce energy drain. I think this is by reducing the viral mitochondrial fragmentation trigger so the mitochondria have less fragmentation. This would make NAD supplements more effective.
 

Iknovate

Senior Member
Messages
117
Likes
155
A lot of hard work by many different biochemists over very many years. Biochemists have been working out cellular pathways since the early 20th century, and the human genome project at the turn of this century has helped to identify some of the pathways that have been missed. Still a lot of work to do, though.



Figuring out what is going inside a single cell is an in vitro experiment which is much easier and cheaper than an in vivo experiment, which requires experimental testing on a living being. There are many more experimental techniques that can be done in vitro, than can be done in vivo.
Well thank goodness for you sharing with us! And clarifying...
 

Wishful

Senior Member
Messages
3,972
Likes
7,206
Location
Alberta
2. If we can figure that much out how come we can't figure out what's going wrong?
Time and money? Identifying processes inside cells isn't as easy as checking under the hood of a car. Some of the tasks require very expensive equipment. Research funding is largely profit-driven, so mapping all the factors affecting the processes between complex IV and complex V in mitochondria might be good science, but the funding committee will ask "Will this result in a profitable product, or directly result in a cure for cancer?"

It's a matter of perspective. I think it's amazing what they have discovered. I don't dwell on what they haven't yet discovered.

3. If we can figure out what's going wrong why can't we figure out how to fix it, or at least bush fix it?
So far we haven't figured out what's wrong. Researchers have--fairly recently--found some definite biochemical anomalies in ME, but even those aren't yet proven to be a core part of ME, consistent in all victims. We haven't even figured out where in the body the core dysfunction is: muscles, immune cells, brain cells? So no, we're not yet at the point where we know where to apply a fix.

We don't yet have a clinical test for ME. If we had that, we could eliminate ME-like-but-not-ME subjects from research projects, which would prevent confusing results. Many of us have managed to find treatments for one or more of our symptoms, or identified chemicals that reliably increase the severity of one or more symptoms. If we could clinically prove that they had ME and no longer had that symptom, researchers could focus on how those treatments might have worked. Likewise, they could focus on how some chemical could reliably increase a symptom.

Which leads me to conclude that it seems nearly hopeless - like finding one specific grain of sand on a beach hopeless.
Nowhere near that hopeless. There was close to zero funding for ME research in previous decades, and it wasn't a disease that was likely to be good for a research career. Now it's getting more attention. Also, the technology for studying biological processes has increased amazingly. Another few decades of biotech progress, and figuring out ME might be a high school level challenge, and inventing a treatment for it might be a university homework exercise.

I think part of the delay in understanding ME has been a previous focus on muscles or viruses, and of course, psychiatric disorders. I think ME's core dysfunction is in the brain, and that's much harder to study. Taking tissue/fluid samples from living brains is not as simple or safe as taking a muscle sample. Measuring processes inside brain cells is hampered by the thick skull. Overall, neural research is more expensive and time consuming, and research funding is limited.

So, challenging, but not hopeless. The fact that temporary full remission could be triggered in minutes, by fairly simple, common chemicals, even many years into ME, keeps me positive about the potential for a treatment or cure.


Don't give up hope! :thumbsup:
 

Iknovate

Senior Member
Messages
117
Likes
155
@Wishful Even if we can't figure out the whole, can't we at least address Mitochondrial dysfunction. For that matter, given the vast breadth of possible causes, can't we solve just one?

Ok, even if we can't solve it, can't we at least take the shortcut of classic medicine and find ways to mask or damper down the symptoms - not necessary with drugs but with biological warfare? :)

Taking a slight detour, why the heck can't we unravel the attack of Borrelia spirochetes?

Not expecting answers, just musing/postulating...where the relevant questions can begin in the pursuit of answers.

By the way, is there a discipline that aligns with biological warfare - inside the body as opposed to military assault?

Not discounting your brain theory, my vote is on communication networks of which the brain is not the command station but a critical node. The answers lie in chemical switching.
 

Wishful

Senior Member
Messages
3,972
Likes
7,206
Location
Alberta
Even if we can't figure out the whole, can't we at least address Mitochondrial dysfunction.
I expect that it's still difficult to do. There are lots of different processes going on in those tiny packages inside a tiny cell, and some of those processes happen way too fast to observe. If, for example, the level of proline in a mitochondria fluctuates, how the heck do you measure that? What if there's an aberrant protein that gets manufactured in the mitochondria, interferes with some other process, then gets broken down by another process? That protein might only exist for nanoseconds. Furthermore, mitochondria aren't isolated systems. Over time, they've evolved to offload a lot of their protein-building and other sub-functions to the cell itself. Maybe the mitochondria aren't functioning properly, but maybe the problem isn't in the mitochondria. So, it's not simple.

If I was doing the research, I'd treat the whole cell as a black box, and try different chemical inputs to see what happens. Amino acid blockers, antioxidants, pro-oxidants, fatty acids; there are lots of things that might affect mitochondrial function. I've encountered several things that gave me temporary remissions, so it's certainly possible do affect whatever the dysfunction is. I get the impression that there is now equipment that can run these sorts of experiments on very many tiny samples in parallel, so it seems a reasonable approach. If they can find some chemicals that do have an effect on ME cells, that would allow new hypotheses, and eliminate (disprove) others.

not necessary with drugs but with biological warfare?
Biological warfare is chemical warfare; it just uses self-replicating chemical factories.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,103
Likes
5,400
I'm not taking it anymore but i found it helps reduce (but not eliminate PEM) and it helps prevent it slightly.
Its been found to take about 12 hours to produce ATP and thats when i found i noticed its effect and could time taking it to maximize its utility.
If i took it before heavy activity it gave a bit of extra energy.
If taken after activity it helped recover the exhaustion more quickly but not the other PEM symptoms, the cognitive effects or the off feeling. Protein powder seems to help recover those better then Ribose. Combining them helped a bit extra but probably 80-90% could be achieved by a higher end brand of protein powder instead.
 

Ladycreole03

Senior Member
Messages
136
Likes
172
find that energy wise licorice helps a lot to reduce energy drain. I think this is by reducing the viral mitochondrial fragmentation trigger so the mitochondria have less fragmentation. This would make NAD supplements more effective
Thx! Can licorice root tea be used?
 

Ladycreole03

Senior Member
Messages
136
Likes
172
I'm not taking it anymore but i found it helps reduce (but not eliminate PEM) and it helps prevent it slightly.
Its been found to take about 12 hours to produce ATP and thats when i found i noticed its effect and could time taking it to maximize its utility.
If i took it before heavy activity it gave a bit of extra energy.
If taken after activity it helped recover the exhaustion more quickly but not the other PEM symptoms, the cognitive effects or the off feeling. Protein powder seems to help recover those better then Ribose. Combining them helped a bit extra but probably 80-90% could be achieved by a higher end brand of protein powder instead.
Is this dribose your speaking of and what brand protein powder you use if you don't mind?
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,103
Likes
5,400
Is this dribose your speaking of and what brand protein powder you use if you don't mind?
Yeah, i just use shorthand and call it Ribose
I have found the New Zealand whey (regardless of brand) seem to work well. I use some local Canadian brands (Kaha and Perfect Sports).
I suspect its because of the immune factors, immunoglobulins, latcoferrin etc. I find the bargain basement ones which are just cheap whey protein do something but not nearly as much. Soy protein doesn't do much at all.
 

Ladycreole03

Senior Member
Messages
136
Likes
172
Yeah, i just use shorthand and call it Ribose
I have found the New Zealand whey (regardless of brand) seem to work well. I use some local Canadian brands (Kaha and Perfect Sports).
I suspect its because of the immune factors, immunoglobulins, latcoferrin etc. I find the bargain basement ones which are just cheap whey protein do something but not nearly as much. Soy protein doesn't do much at all.
Ok.. I'll order some ribose.. I have a whey powder thats precursers to gluthione. Is that what you use?