Geneticist Links Chronic Fatigue To Mitochondria Dysfunction

[Such_Saturation]

You really should talk to a doctor about this.

Seriously, though...what was up with you coughing blood back then? Did you figure that out?

No, I think just an allergic reaction to hyperventilation and drying of the airways. It is considered a form of asthma. Whatever, there are so many things that I don't get anymore, I've stopped counting them, orthostatic hypotension, lowkey anxiety, blood sounds in my ears, irritable bowel syndrome, etc.

 

[DesertRat]

It's good to hear about people healing from ME or CFS. I've had it since 1987, and can say that while hypothyroidism is often a contributing factor for many individuals, I had a nice case of hyperthyroidism before I got sudden-onset CFS. And it definitely WAS NOT mitochondrial dysfunction. On Friday I pressed 70# freeweights. On Saturday I woke up sick. On Sunday my arms couldn't support two bags of groceries. If the mitochondria get damaged, it's downstream. It starts with some kind of infection or toxin that gets into the CNS. Then everything goes downhill. Even when people get rid of the virus (or encapsulate it, since herpes family viruses hide out for life), there are still neural pathways that keep the pathology active. And medicine won't find the answer anytime soon not just because they have too many other conditions mixed up with ME, but also because they allocate about $1 a patient per year to research on the illness. That why #MEAction is having a big rally in multiple US cities on May 25.

 

[Such_Saturation]

hyperthyroidism

 

[PakPik]

I've seen a lot of contempt in this thread, specially bad the disrespectful name calling when referring to people with M.E. You all are entitled to your own beliefs, you are free to express them, but that doesn't mean it is OK to talk in insulting ways to people who are dying painful deaths, specially the subset of severe M.E like the gentleman the article talks about. Trust me, you don't want to be where he is. If you're today typing a single word on a forum, staring at a screen, producing a single coherent sentence without having a seizure from it, you are like a superman compared to a lot of them. And no, not everything is fixed by thyroid, though I admit I wished it was (there're some complex states in the body where thyroid function is both deliberately and collaterally just shut down, and it doesn't matter much at all if the person supplements even if it's the right T4:T3 ratio, amount, method, etc, and nevermind the mitochondria, not much will happen if the insults keep piling up damage).

I honestly don't feel like contributing anymore if there's going to be outright insulting namecalling towards anyone, specially towards people who are doing a huge deal of endless suffering -and many dying from it- you would never imagine unless you were exactly there.

Thank you
@charlie @tara

 

[tara]

Fix cellular energy per the recommendations of Ray Peat and CFS goes away.

If you mean the recommendation of Peat to eat for a high metabolism, etc, then I guess you are right. But that's pretty vague in terms of how to follow it.

I'm convinced by the idea that cellular energy is central to ME/CFS and many other conditions (and there may be other key mechanisms going on as well, and those mechanisms may not be the same for everyone either). I think once things have gone sufficiently awry it is often not simple to figure out how to fix it again. Some damage/dysfunction is really difficult to repair. The human body is so amazingly complex, and can malfunction in so many different ways, even if cellular energy is a key part of the picture. Peat has described some general principles that seem to make a lot of sense, and may work well for most healthy people and many sick ones. He has described a few biochemical pathways in significant detail. But he hasn't published detailed protocols to resolve every imbalance that can occur. It's not straightforward for many of us to figure out which and how to use Peat's ideas, for CFS or other issues.

 

[tara]

Further point is that not everything works for everybody. And sometimes things work at one time but not another. For various reasons.

I agree.

 

[mangoes]

No, I think just an allergic reaction to hyperventilation and drying of the airways. It is considered a form of asthma. Whatever, there are so many things that I don't get anymore, I've stopped counting them, orthostatic hypotension, lowkey anxiety, blood sounds in my ears, irritable bowel syndrome, etc.

Do you attribute anything in particular to the resolution of the blood sounds in your ear & orthostatic hypotension? I have both of these.

 

[Such_Saturation]

Do you attribute anything in particular to the resolution of the blood sounds in your ear & orthostatic hypotension? I have both of these.

It's primarily about a deficiency of salt for me (and consequent intolerance to salt).

 

[lindsay]

That article is SO sad. I feel like someone should write to this Ronald and tell him to give his son some T3. Who knows - maybe I will. But I realize it's not that simple and everyone is different. I, for one, could take a slew of supplements and if I am not getting adequate thyroid, they don't do crap. Start taking thyroid and it's like I can function again. The question for me is always, will I ever be able to live without thyroid? Especially considering it's so hard to get hands on?

I do agree that diet won't cure a huge host of issues - supplements are definitely needed. And thyroid to support their absorption - at least that's been my experience.

That being said, if I hadn't discovered RP, I've no idea where I would be at.

 

[lindsay]

I declined the iron shots, but my-oh-my those B shots (though kinda painful) are Heaven on Earth.

Hi BigP! I'd love to hear more about your experience with B-shots. I've had borderline low B12 for years. It might be fine now that I take thyroid (I need new blood tests), but if I find out it is still low, I'd be willing to investigate B-shots if I heard positive things about them. Thank you :)

 

[Such_Saturation]

write to this Ronald and tell him to give his son some T3

How dare you suggest that

 

[whodathunkit]

I'm convinced by the idea that cellular energy is central to ME/CFS and many other conditions (and there may be other key mechanisms going on as well, and those mechanisms may not be the same for everyone either). I think once things have gone sufficiently awry it is often not simple to figure out how to fix it again. Some damage/dysfunction is really difficult to repair. The human body is so amazingly complex, and can malfunction in so many different ways, even if cellular energy is a key part of the picture. Peat has described some general principles that seem to make a lot of sense, and may work well for most healthy people and many sick ones. He has described a few biochemical pathways in significant detail. But he hasn't published detailed protocols to resolve every imbalance that can occur. It's not straightforward for many of us to figure out which and how to use Peat's ideas, for CFS or other issues.

One thing a lot of healthy or only marginally unhealthy people don't seem to understand (and I honestly don't understand it either, except to know it's a real phenomenon) is that ramping up cellular processes by whatever means (supplements, Peat, etc.) seems to provoke a type of detox reaction. It's like the mitochondria get revved up again and start kicking out old garbage into circulation so they can start doing their jobs again, but the body is still sick so it can't cope with the extra garbage load. So IME getting metabolism going usually means getting sicker before you get better. And the sicker you are to begin with, the sicker you can get when you start something that could potentially do you a whole lot of good. For people who are already battered and debilitated by a slew of symptoms that make them feel bad all the time anyway, getting sicker in response to something can be very, very scary. They're not willing to risk it maybe making them worse. People who can do the work usually make progress, but it's really hard to take that leap of faith to continue on in the face of apparently worsening symptoms.

O'course the getting sick in response to a beneficial therapeutic is mainly about the liver. If your liver's not up to snuff then it can't dispose of that load of old cellular debris. But then comes again with the snake eating its tail analogy, because if most of us had good livers, we wouldn't be sick in the first place.

 

[whodathunkit]

Hi BigP! I'd love to hear more about your experience with B-shots. I've had borderline low B12 for years. It might be fine now that I take thyroid (I need new blood tests), but if I find out it is still low, I'd be willing to investigate B-shots if I heard positive things about them. Thank you :)

Not "Big P" but since you want to hear good things about B12 shots I thought I'd chime in.

Daily shots of methylcobalamin (methyl form of B12, from a compounding pharmacy) are still part of my daily regimen. They were the first thing that truly gave me hope that I could beat my problems. My first shot of mB12 was a revelation. An epiphany about the fact that I was probably severely deficient in some key micronutrients. It was like instant "Zoom". I LOVED the stuff. Still do.

I had gotten cyanocobalamin shots from the doctor's offices off and on for years, and they never had any effect at all. Come to find out that cyanocobalamin is actually cobalamin (B12) bound to a cyanide molecule to stabilize it in the bottle (methlyB12 is highly reactive to light, degrades into less potency very quickly) and give it longer shelf life. If your liver isn't functioning properly it can't split the cyanide molecule off from the B12, so for those people (I am one), the typical B12 shots you get at the doctor's offices do nothing. The cyanocoblamin passes through the body unused.

IME lab tests for B12 say absolutely nothing about what your cells are actually able to do with the B12 in your blood. All my B12 labs have always been "normal", showing no deficiency, and yet I took off like a balloon suddenly plumped up with helium after that first mB12 shot. Worth noting is that in addition to a bad liver I also had/have a bad gut, which can impede B12 synthesis from food in the intestine, and I also have some mutations that could mean my cells have a harder time making use of available B12.

My $0.02: B12 injections can be rewarding and a very valuable adjunct to recovering health. Because they are so benign in the first place, if a deficiency (whether overt according to labs or subclinical by symptoms) is suspected, they're worth trying.

 

[Such_Saturation]

Not "Big P" but since you want to hear good things about B12 shots I thought I'd chime in.

Daily shots of methylcobalamin (methyl form of B12, from a compounding pharmacy) are still part of my daily regimen. They were the first thing that truly gave me hope that I could beat my problems. My first shot of mB12 was a revelation. An epiphany about the fact that I was probably severely deficient in some key micronutrients. It was like instant "Zoom". I LOVED the stuff. Still do.

I had gotten cyanocobalamin shots from the doctor's offices off and on for years, and they never had any effect at all. Come to find out that cyanocobalamin is actually cobalamin (B12) bound to a cyanide molecule to stabilize it in the bottle (methlyB12 is highly reactive to light, degrades into less potency very quickly) and give it longer shelf life. If your liver isn't functioning properly it can't split the cyanide molecule off from the B12, so for those people (I am one), the typical B12 shots you get at the doctor's offices do nothing. The cyanocoblamin passes through the body unused.

IME lab tests for B12 say absolutely nothing about what your cells are actually able to do with the B12 in your blood. All my B12 labs have always been "normal", showing no deficiency, and yet I took off like a balloon suddenly plumped up with helium after that first mB12 shot. Worth noting is that in addition to a bad liver I also had/have a bad gut, which can impede B12 synthesis from food in the intestine, and I also have some mutations that could mean my cells have a harder time making use of available B12.

My $0.02: B12 injections can be rewarding and a very valuable adjunct to recovering health. Because they are so benign in the first place, if a deficiency (whether overt according to labs or subclinical by symptoms) is suspected, they're worth trying.

Could it be the methyl group giving you benefit?

 

[whodathunkit]

Could it be the methyl group giving you benefit?

Actually, the entire stack I was taking was put together to increase methylation and build mitochondria. But I didn't want to get into that whole can of worms, because while I can apparently apply these things in real life to good effect, and I have a good rapport with my own physiology and can intuit things that are good for me, etc., when someone asks me *why* it worked or to explain the processes, I'm like "Um, whut?"

Seriously, one downside to all this is that my cognition has worsened since all these experiments with my metabolism. So far not really getting better with Peat, although maybe marginally. But the dramatic improvement in physical energy makes the decrease in cognition an entirely reasonable trade-off, at least right now. Increasing metabolism while decreasing cognition seems to be a fairly common problem, at least among a subset of people who had or have symptoms like mine. Only time will tell if it can be better. Cognition isn't *that* bad, anyway, but the lack of retention of complex information really gets me down sometimes, especially when considering I used to retain it quite well. At least lately I seem to be comprehending what I read better in the moment, even if I forget it five minutes later.

From what I've read and tried to research the cognition problems may have something to do with deranged ACh synthesis/metabolism and the gut (which I've also been having problems with that are slowly resolving), but I don't really know. It seems to be an overwhelmingly complex problem so right now I'm just trying to symptomatically manage the cognition decline as best I can, while hoping to get to the root of the problem with some therapeutic measure or other, and eventually banish it for good.

And I know. PUFA dump. Serotonin problems. Estrogen excess. Hypothyroid. Etc. That's why I'm here and what I'm currently addressing. Quite aggressively, I might add. :)

 

[jaguar43]

I've seen a lot of contempt in this thread, specially bad the disrespectful name calling when referring to people with M.E. You all are entitled to your own beliefs, you are free to express them, but that doesn't mean it is OK to talk in insulting ways to people who are dying painful deaths, specially the subset of severe M.E like the gentleman the article talks about. Trust me, you don't want to be where he is. If you're today typing a single word on a forum, staring at a screen, producing a single coherent sentence without having a seizure from it, you are like a superman compared to a lot of them. And no, not everything is fixed by thyroid, though I admit I wished it was (there're some complex states in the body where thyroid function is both deliberately and collaterally just shut down, and it doesn't matter much at all if the person supplements even if it's the right T4:T3 ratio, amount, method, etc, and nevermind the mitochondria, not much will happen if the insults keep piling up damage).

I honestly don't feel like contributing anymore if there's going to be outright insulting namecalling towards anyone, specially towards people who are doing a huge deal of endless suffering -and many dying from it- you would never imagine unless you were exactly there.

Thank you
@charlie @tara

On one hand; this forum shouldn't tolerate name calling and disrespectful post towards people with symptoms and diseases.

On the other hand; being critical of the system and the players ( scientist and doctors) is totally appropriate. Unfortunately the article posted in the OP is extremely biased towards mainstream science institutions. It gives the false image that the patients father a "renowned geneticist" and one of the "greatest living inventors" can't even help his son. Therefore no one who doesn't match his credentials can't possible find solutions to CFS. But no one implies that the whole bias for genetic determinism of Chronic fatigue syndrome ( or any other disease) may be out right wrong. There is never any criticism of the doctors or scientist that provide false information and create treatments based on false theories to begin with.


I suppose it isn't so hard to understand that people can devote their life to studying the genetics of diabetes, even though diabetes has appeared suddenly in one generation of immigrants when their diet was suddenly changed, a massive fact that bluntly contradicts the genetic doctrine. There is something very deep in our culture that loves genetics. - Ray Peat

Genes, Carbon Dioxide and Adaptation.


Ray Peat has said that geneticist are some of the most dogmatic people in science. Looking at the article, one could see this, where they say that there are over 1600 genes that could cause mitochondria dysfunction. As if looking for genes is going to reverse mitochondria dysfunction. The fact that some people have help themselves on this forum and improve substantially proves that the standard mainstream ideas are at best mediocre.

 

[thebigpeatowski]

One thing a lot of healthy or only marginally unhealthy people don't seem to understand (and I honestly don't understand it either, except to know it's a real phenomenon) is that ramping up cellular processes by whatever means (supplements, Peat, etc.) seems to provoke a type of detox reaction. It's like the mitochondria get revved up again and start kicking out old garbage into circulation so they can start doing their jobs again, but the body is still sick so it can't cope with the extra garbage load.

Seriously, one downside to all this is that my cognition has worsened since all these experiments with my metabolism. So far not really getting better with Peat, although maybe marginally. But the dramatic improvement in physical energy makes the decrease in cognition an entirely reasonable trade-off, at least right now.

Yeah that.

 

[thebigpeatowski]

Do you attribute anything in particular to the resolution of the blood sounds in your ear & orthostatic hypotension? I have both of these.

I had both of these, every single time I would stand up I'd get woozy for a bit and I could hear the blood rushing in my ears. I figured it was because I was obese and had hypertension....T3 was the only thing that fixed it for me.....come to think of it, T3 fixed the obesity and hypertension too.

 

[DaveFoster]

My chronic fatigue sorted itself out from eating more calories, lowering estrogen with vitamin E, and cypro. Inflammation and morning nausea can be helped by moderate dosages of aspirin.

 

[mangoes]

It's primarily about a deficiency of salt for me (and consequent intolerance to salt).

I had both of these, every single time I would stand up I'd get woozy for a bit and I could hear the blood rushing in my ears. I figured it was because I was obese and had hypertension....T3 was the only thing that fixed it for me.....come to think of it, T3 fixed the obesity and hypertension too.

Thanks both of you. I'm gonna try getting more salt first and then possibly t3