Geneticist Links Chronic Fatigue To Mitochondria Dysfunction

[thebigpeatowski]

I'm having good results with Peat AFTER cleaning up my metabolism with a non-Peat approach

I have no idea what this means ("cleaning up metabolism", specifically). Can you explain it (in simpleton terms cuz Dumbelina is sorta slow )...or point me to a link where I can read more. Or maybe list your protocol? Thanks!

 

[whodathunkit]

@thebigpeatowski, I got my metabolism going with these supplements. They reversed my apparent and very real mitochondrial dysfunction. Correcting the nutritional deficiencies by using this supp stack was the only thing I'd ever done that also got rid of my cravings for crap food. It was literally a miracle for me.

I posted a little bit about it in the BL thread we've been chattering in. It's a complex undertaking and can be time-consuming to write about, and I don't have that time right now. Can you go read my post to @SQu in the BL thread? I can answer more questions about it later. I'm not trying to be deliberately vague here, but asking for a quick-n-dirty explanation of this is tantamount to asking for a quick-n-dirty yet thorough explanation of Peat. Really complex.

Plus, honestly, I don't understand completely *how* it worked, or why. But it corrected things in my body that apparently needed correcting, and apparently couldn't be accomplished by any other means. My first methylB12 shot was a revelation for me about how life-sucking severe sub-clinical nutritional deficiencies can be. I say subclinical because my B12 labs were all "normal range", but that first mB12 shot boosted me off like a rocket. But cyanocobalamin, the type of B12 typically dispensed at a doctor's office, never did a thing. I tried those for years. I didn't even know the doctor's office shots weren't the "good" kind of B12 until I hit that other forum.

I'm over here kind in this thread just to hopefully clear up some misunderstandings that most what I call "normals" (that is, people with relatively normal metabolisms) have about ME/CFS. It's not lazy, it's not psychosomatic, and it's often not a matter of applying therapeutic measures like Peat or the supp stack that helped me. A lot of people get side effects from food or supplements that are as debilitating as the illness itself. I was one of the lucky ones and got myself out of it relatively quickly (three years to get where I am today). Some of us have a theory it can take a decade or more of hard work for the really severe cases.

I had some of the same misunderstandings until I learned about the disease and what the really severe patients have to go through. As @Simonsays said, it can be really heartbreaking.

 

[thebigpeatowski]

Okay, I'll go read on the other thread. I had terrible truly awful gut issues for years which caused MAJOR malnutrition. My doc gave me B shots in the *ss once a week because my blood work showed anemic for B12 and iron.

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

 

[whodathunkit]

I still shoot myself up every day. I got a compounded prescription. Saved my life. Ultimate goal is to be able to do without the shots and supps, but I'm unwilling to derail myself by trying to wean myself off them at this point. I have digestive problems/damage, too, that may preclude ever being able to synthesize B12 properly in the gut. So I may always have to have them. IMO totally worth it when considering the alternative.

 

[Such_Saturation]

Oh, REALLY? So you're going to jump inside my head and my body now and say there's no way for my poor pea brain to figure out that the recovery I began to experience at least six months after I quit Peat style was due to the supplements I took rather than my stint with Peat?

You really must be psychic bordering on omnipotent to make these kinds of assumptions. No wonder you seem to think you're qualified to tell sick motherf*ckers what they should do.

Here's basically how it went. For six months I did a fruit/milk/seafood/liver/sugar/coffee/fruit juice diet. (Peat enough for you?) At the end of that six months none of my biomarkers had improved, and I still couldn't go to the gym and work with weight for a half hour without getting PEM for weeks afterwards. Look up PEM if you don't know what it stands for. It's a pretty big indicator of mitochondrial function.

But after six months on the supplements, I could exercise again without getting protracted PEM. Still got PEM, but not as bad. Within two weeks of starting the supplements I started getting the urge to exercise again. I couldn't indulge the urge at that point...no tolerance at two weeks...but to experience the spontaneous urge to move after so many years of never wanting to get up out of the chair was HUGE.

Now, after nearly three years on the supplements, I can work out for 1.5 hours at a time, a couple times per week. On other days I do some HIIT. Other days I do an hour of Pilates. And even with all that activity I can still go to work and have enough energy to do other things.

Accomplished due to the supplements. Not Peat style.


We can agree on that.

And that is what I addressed, very effectively I might add, with the *other* approach I took that was more suitable for me at the time. Now Peat is suitable for me, too. I'm looking forward to being able to get the good out of it this time around.

But the thing is, to pull this back around to the actual topic of the thread, is that unless you've walked a mile in the shoes of someone with an illness as baffling and debilitating as ME/CFS, you really shouldn't make assumptions about what's good for them and how they can recover. It doesn't work the same way for everyone...the path to healing from serious illness is always convoluted. You sound pretty young, but all I'm really saying is just try to understand that, and respect the fact that there are other perspectives than yours, and things going on with complex illness that you and even RP might not understand. Consequently, cutesy remarks about what sick motherf*ckers should do aren't really cute at all. Unless you've got no other perspective than the myopia of youthful exuberant health. In which case, you're excused.

Well I was reiterating a sort of meme with Peat instead of jesus. But what I meant was more the approach than actually giving the guy milk and oranges. But I do would have enjoyed crashing in my middle age instead of shedding hair at 15 and coughing up blood after jogging for a mile I did make it to 24 though. I have tried to read up on what you have attempted. Is it common for sufferers to have no benefit from diet changes of any kind? Did you attempt using thyroid on your first run?

 

[whodathunkit]

Well I was reiterating a sort of meme with Peat instead of jesus.

would have enjoyed crashing in my middle age instead of shedding hair at 15 and coughing up blood after jogging for a mile

That sounds truly ugly and very scary. I'm really sorry to hear that happened to you. Aside from the bloody cough, which I don't know anything about, I can say from experience that losing hair is a highly underrated "life change stressor"...I reacted as badly to my hair loss as I did to the termination of the biggest love affair of my life. Worse, even. I cried five times per day for several years about my hair. Every once in a while I still choke up about it. Only cried a couple times per day about the man. And I don't think about him all that much anymore. I imagine for a teenage boy losing hair is as traumatic as it can be for a woman.

BUT...I will also say the younger you are when you catch metabolic dysfunction, the easier it will probably be to reverse it or at least halt it. Not in every case, but generally speaking. I wish when I was your age that I had had the resources (internet, discussion boards, knowledge of Peat, etc.) you have now. Things could have been so much different. I was searching for miracles even back then, but the only info we had widely available at the time were books based on flawed interpretations of mid- and late-20th century science. Or books based on science generated by industry looking to boost its market share. Etc. It's still a lot that way now, but at least now it's easy to find alternatives in this day and age. Back then most of us had to take what we were offered on the bookstore shelves. People exposed to avante garde thinkers like Peat were usually in academia or regionally exposed.

Regardless, good for you for jumping on and sticking with something that works for you. Some people can't do it, especially at such a young age. I take it (hope) you're no longer coughing and can run farther than a mile without folding up...?

Is it common for sufferers to have no benefit from diet changes of any kind?

Can't really say about that, because what is most common is for CFS sufferers just not to be able to tolerate a lot of foods, so they can't eat a healthy diet long enough to see if it will do them any good. Immune system seems to be haywire, and it can change frequently as to what foods cause a reaction. There's a lot of intolerance to dairy, for instance, that has to do with mast cell reaction rather than lactose intolerance. Lot of intolerance to fruits. Gelatin is a big trigger of inflammation for a lot of the CFS cohort. Some people are limited to eating the same couple/few foods for a long while. Most of what Peat recommends seem to be trigger foods for a lot of people with more severe CFS.

I never had food intolerance, although I did have other symptoms of inflammation. So again, I was one of the lucky ones. Food intolerance complicates everything.

Or their livers aren't up to snuff (because PUFA or snps or both) and so they can't process sugar properly. All the carbs do bad things to them, and since they're already energy depleted and brain fogged from the disease anyway, they can't see their way out. Can't stick with it.

I also think that genetic mutations have a lot to do with complex illnesses like CFS. Getting my snps analyzed was eye-opening for me, and explained a lot about some of the things I'd wondered about my whole life. Caffeine intolerance, for example. I'd jitter and jive on the same amount of coffee that barely waked up some of my friends. Always wondered about that. Turns out I have snps that affect phase I detox in the liver, which is where caffeine is metabolized. Now maybe that snp doesn't have any impact if the liver is clean and PUFA free, but who in the general population has a clean, PUFA-free liver these days? I sure didn't. Now that my liver is a lot cleaner and functioning better, I'm tolerating caffeine much better. Peat style eating and therapeutics also seem to be helping with that.

That's just one example. I also have a whole bunch of other mutations that could explain some other things...a few that explain my fabulous reaction to mB12 even in the face of normal blood levels of it. And most people with CFS have many more snps than me, including mutations like MTHFR that are known to be players in a number of disease states. A preponderance of mutations and a crappy diet just could be a recipe for disaster.

The sickest ones get like the kid in the article. It's just...so very sad. And nobody knows exactly what to do about it because what works for one won't work for another.

I do think with some sufferers there can be a certain resistance to change after being debilitated for so long, in that maybe some people who probably have the wherewithal to try a little harder don't try as hard as they could to make beneficial changes that could reap results with time. It's a type of learned helplessness. The nervous systems and neurotransmitters of the CFS cohort are pretty much always royally screwed. It takes time and determination to tease that kind of problem out, and if you've been beat up by mainstream medicine don't feel much hope and have no energy, anyway, it's easy to throw up the hands and go WGAF? See how that can go? The snake just keeps eating its tail.

Anyway. That's all about that.

Did you attempt using thyroid on your first run?

I didn't, for two reasons.

As I said earlier to @charlie, I tried NDT years before I tried Peat, and had a bad response to it. I realize now I wasn't using it properly, but can't do anything about it now. I never reacted well to progesterone, either, which I tried several times over the years. I even bought Progest-E before I had any idea who Ray Peat was. I just heard it was a good product and thought I'd give it a try.

I didn't try thyroid when I gave Peat an actual go because I couldn't get my hands on any. I couldn't face going through the rigmarole with my doctor of getting a prescription (no energy for that) and I couldn't find the place I used to get it from India. With things being the way they can be getting stuff like that from overseas I just decided not to fool with it. And that's kind of the same dilemma that a lot of people with CFS have...if they want to try something like full-on Peat, for example, any roadblock (like the hassle of getting thyroid) can become a huge psychological barrier because of the lack of energy, lack of resources (good doctors or whatever) and screwed up neurotransmitters/learned helplessness.

I do acknowledge that if I'd tried thyroid during my first stint with Peat, things *might* have gone differently. But maybe not. My mitos and nervous system were simply not up to a lot of extra stimulation at that time. The only reason I was able to get through the overstimulation and side effects I had with my supplement stack is that there was an innovative thinker much smarter than me who'd already been through it and said that things would probably get worse before they got better. So when I crashed with the stack (five times total the first year, first time within two weeks of starting the stack) I wasn't unprepared for the reaction. But if I'd crashed on Peat and thyroid, I wouldn't have had that guidance, and so probably wouldn't have persevered. I might have decided it was bad for me instead of it just didn't work for me at the time.

The way I look at things now is I'm where I'm supposed to be in any given moment. I always intended to circle back around to Peat because his ideas have such merit, and here I am. Loving it so far, I might add. Thyroid, progesterone, pregnenolone, gelatin, caffeine, and all. I am so thankful for what I've been able to accomplish so far and am not terribly concerned about the "correctness" of the methods used to achieve success. The journey has been transformative, and that's always a gift, no matter what road is traveled. Right? :)

 

[CarbAppreciator]

Do you have any correlation with gulf war vets?

 

[Agent207]

@thebigpeatowski, I got my metabolism going with these supplements. They reversed my apparent and very real mitochondrial dysfunction. Correcting the nutritional deficiencies by using this supp stack was the only thing I'd ever done that also got rid of my cravings for crap food. It was literally a miracle for me.

You mention a lot about those supplements or stack.. could you elaborate which ones?

 

[whodathunkit]

Do you have any correlation with gulf war vets?

I've seen it mentioned. But correlation that "proves" CFS is a co-morbidity with Gulf War Syndrome? Haven't.

There is a very very smart guy working on correlating post-finasteride syndrome (PFS) with the CFS symptom spectrum, though. PFS apparently has a very similar manifestation to CFS. Very interesting stuff.

 

[whodathunkit]

You mention a lot about those supplements or stack.. could you elaborate which ones?

I'm not trying to be vague here, but the stack and how to manage it is a huge topic that would be prohibitively time-consuming for me to delineate right now. I debated on even mentioning it because I knew people would want to know about it. It's been so important to me, but at the same time I hope you understand what I'm saying. Trying to elucidate stuff like this with precision takes up a huge amount of time.

So what I will tell you is to go to this thread

"Biggest Loser" Contestants Regained Weight. Peat Perspective

And read post #147. Go from there. Reams has already been written on the topic of the stack I used, and by people much more knowledgeable than me. If you want to try it, what's already been written should be consumed and digested before attempting. Just if you go over to that other forum, please remember that it's set up for a specific purpose just like this board is. Lotta people over there are trying to resolve complex, seemingly intractable health problems. It's not about general health, and sometimes they can get a little [understandably] perturbed if people just looking to improve general health go and start asking time-consuming questions without reading up first. Be considerate and mindful, is I guess what I'm trying to say. And if you get something out of what you find there, maybe make a donation.

 

[Blossom]

It would be interesting if someone would study people who are recovered from CFS/ME to see if blood work or other measures are different from people currently disabled with symptoms.

I started having symptoms in the late 1990's but didn't get the Chronic Fatigue Syndrome diagnosis until 2002. An extremely high titer of Epstein Barr was found in my blood after a body fluid exposure at work in 1999. I had symptoms before that happened but to a lesser degree. I was never able to completely give up and go to bed permanently even though I felt like it because I had a child who was solely dependent on me and I didn't have anyone to hand off that responsibility to as her father wasn't around. I had some really low points where I had to concentrate on just putting on foot in front of the other and being out of bed for only 20 minutes a day was all I could manage.

I feel the CFS mostly ran it's course by 2012 and I can't pinpoint a specific reason why but I do think quitting SSRI's in 2009 and my endeavors to take charge of my own healing helped in my situation. When I stopped putting my faith in medicine and started putting faith in myself to find answers things began to slowly turn around. Despite making numerous mistakes I felt empowered and hopeful for the first time in over a decade. I discovered Peat's work in 2013 and fortunately the CFS hasn't come back. I'm sure that CFS is part of what made me so receptive to Peat's ideas because I could totally relate to the concept of what can happen when energy fails.

 

[whodathunkit]

It would be interesting if someone would study people who are recovered from CFS/ME to see if blood work or other measures are different from people currently disabled with symptoms.

Yep, it would. I'd bet it's completely different.

I actually do happen to agree with @Such_Saturation that many people with CFS would benefit from a Peat style approach to healing. Most if not all of them probably have deranged serotonin levels, estrogen levels, thyroid levels, poor liver function, etc. All the Big Bads. But the side effects involved in getting metabolism revved up again can be so hellacious that it just wouldn't work for many of them. They have to approach the issue from other angles, using other methods.

Good for you on your recovery, BTW. :) You've accomplished what is considered to be impossible by a segment of the CFS community.

 

[Blossom]

Yep, it would. I'd bet it's completely different.

I actually do happen to agree with @Such_Saturation that many people with CFS would benefit from a Peat style approach to healing. Most if not all of them probably have deranged serotonin levels, estrogen levels, thyroid levels, poor liver function, etc. All the Big Bads. But the side effects involved in getting metabolism revved up again can be so hellacious that it just wouldn't work for many of them. They have to approach the issue from other angles, using other methods.

Good for you on your recovery, BTW. :) You've accomplished what is considered to be impossible by a segment of the CFS community.

Thanks @whodathunkit, congratulations to you for beating CFS too.

 

[whodathunkit]

@Blossom, thanks!

FWIW, a difference between me and you was I was never diagnosed. I almost never went to the doctor during those years (poor starving college student, and then conserved money by not taking benefits for a while at my job), and didn't think much of most doctors, anyway. Never have. When I did go to a doc I never talked about what was wrong with me in regards to the fatigue symptoms or transient dizziness, etc., because I thought it was just the natural course of my life. I thought I'd been dealt an unfortunate hand when it came to getting older. So I sucked it up. I did what I could on the days I could and on the days I couldn't, I didn't. I was pretty isolated at the time so I really lacked a normal perspective and nobody really noticed.

But after learning about the disease I realize I totally met the criteria for diagnosis, including PEM, POTS, etc. It took a long time for me to figure it out because I'd see people discussing things like "PEM" or "POTS" without knowing what the acronyms stood for, and I just figured they weren't relevant to me because I didn't really have CFS I just had a few problems so I didn't look them up until I'd already been hanging around for a long time. I had to learn a lot to figure out just how screwed up I really was. After that I never got formally tested for viral loads like EBV or Lyme because by the time I learned I'd met the criteria I was already well on my way to getting better. Seemed a moot point.

But I realize now if I'd pushed for a diagnosis, I could have gotten one. I've also learned that sometimes people really have to push for it. I just never went to the doctor. I simply accepted the decline, at least for a while.

 

[Blossom]

That's probably for the best that you didn't involve doctors @whodathunkit. I think the few treatments I did receive probably just made me worse off.

 

[Such_Saturation]

To be honest I don't have Epstein-Barr

 

[whodathunkit]

To be honest I don't have Epstein-Barr

I'm so glad for you. Really. :p

 

[Such_Saturation]

I'm so glad for you. Really. :p

But I have Citomegalovirus

 

[whodathunkit]

But I have Citomegalovirus

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?

 

[Blossom]

To be honest I don't have Epstein-Barr

I don't think it matters. Some people get opportunistic 'infections' when their immune response is deranged from poor metabolism. They tested me for CMV too but I didn't have that one. It seems like the 'infections' are just one of the symptoms and not the root cause.