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Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
DONE! (Whew!)

Aerobic Respiration in ME

@Mary, @SOC, I hope this causes it all to make more sense. Please feel free to ask questions in the section of the blog for comments. <3

Thanks again, @Gondwanaland , for helping me find the full text!

This article, if it's correct, really is a game-changer, especially considering Newton's article. Thanks to @Bob for turning me on to that, which helped me understand this paper far better.


-J
 

Vasha

Senior Member
Messages
119
Brilliant- thanks so much @JaimeS! After reading the paper again after some sleep, I decided that, if they are right, it WOULD suggest a ketogenic diet or similar - over to your post to see if you agree....

Vasha
 

SOC

Senior Member
Messages
7,849
DONE! (Whew!)

Aerobic Respiration in ME

@Mary, @SOC, I hope this causes it all to make more sense. Please feel free to ask questions in the section of the blog for comments. <3

Thanks again, @Gondwanaland , for helping me find the full text!

This article, if it's correct, really is a game-changer, especially considering Newton's article. Thanks to @Bob for turning me on to that, which helped me understand this paper far better.


-J
Thanks, Jaime, that was very informative! I suspect you are an excellent TA. :) It will take me quite some time to digest it all, but I believe it's going to be very relevant to my ME experience.

Coincidentally, my specialist called today, concerned that both daughter's and my blood glucose and urine creatinine are highish. While it certainly bears watching for other reasons, your blog post makes me wonder if it isn't more a question of metabolism since we've both been more active over the past 6 months or so. Looks like I have a lot to think about. :)
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@SOC, what timing! The article would say that makes you and your daughter 'typical', metabolites-wise...

I keep tweaking the article, lol. I keep stumbling on a section I think could read better.

Thanks re: TAing. It really is fun to explain stuff, at least to me. :redface:

-J
 

Vasha

Senior Member
Messages
119
I commented over on the blog post, but wow @JaimeS that is a tour de force! The drawings are especially brilliant. You must be an excellent TA. Here is the well-deserved star I failed to give you in the blog post comment because my coding was not up to snuff :star::thumbsup:

Also, my glucose was always, always low before I got sick, but last time (it's not checked much because it was always low before), it was borderline high. One more anecdote.

I really think this line of inquiry has a lot of promise. Thank you for translating!

Vasha

(Oh, and I'm very pleased about the ketogenic/Paleo indication (but for the future loss of cookies, of course). It makes some sense, though there is much, much more work to be done before we would know whether all of this is right.)
 
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SOC

Senior Member
Messages
7,849
Just thinking aloud~
I can see ketogenic diet might be helpful, but it seems too demanding when you add in dairy-free (which is a big one for me). Paleo or near-paleo is probably easier.
 

Vasha

Senior Member
Messages
119
Yes @SOC, that has definitely been a bit of a conundrum for me, too; I'm intolerant to dairy (butter seems maybe ok), and almost all therapeutic ketogenic models use dairy pretty heavily. (However, it is almost all, not all-there is an MCT-heavy model, which uses relatively large proportions of MCT oil and coconut oil along with other medium-chain triglycerides. That one is touted (not sure how established this is) as maintaining ketosis more easily than the other models, even if more vegetables, etc are consumed.)

HOWEVER, either way, this paper does not necessarily suggest a purely ketogenic diet, as I understand it--it suggests trying to use both the protein-dependent and the fat-dependent pathways to supplement or circumvent the glucose-dependent glycolysis pathway. So Paleo would seem as plausible as ketogenic, based just on this paper. And then individual preferences and characteristics would of course inform any choices.

I have a lot of neurological issues that lead me towards trying a ketogenic diet for myself, but that may well not be true for everyone . . . tagging @jeff_w since he has tried a ketogenic diet and may be interested in this thread and/or the paper and/or @JaimeS's most excellent blog post.

Oh, and this is all IF the idea holds up, of course. :) And also thinking out loud...

Vasha
 

Gondwanaland

Senior Member
Messages
5,094
I decided that, if they are right, it WOULD suggest a ketogenic diet or similar - over to your post to see if you agree....
Many here, including me, have been to the other side of keto diets: carb intolerance due to gut flora starving, and oxalate overload from eating "safe" starches... Not so simple... A diet must be very well planned ahed to avoid these traps...
 

SOC

Senior Member
Messages
7,849
I suppose the truth of the matter is that IF the idea holds up (as @Vasha says) then we really need our own diet. Not keto, not Paleo, but a diet that meets our own unique needs. That might include supplementation along the lines @JaimeS suggested to support our "anomolous" energy metabolism.

Can anyone hypothesize whether the higher inflammation we experience might be related to our energy metabolism problems or whether it's more likely an entirely different issue?

Any diet/nutrition gurus out there willing to suggest a diet plan (in a bit more detail than we've discussed so far in this thread) that takes into consideration the information in this article? I think @Gondwanaland points out some important points to consider. We also have some other fairly common issues among us -- inflammation being one -- that might be moderated with an appropriate diet.

Just to be clear -- I'm not suggesting diet and supplements alone will cure ME/CFS. :) I'm thinking more along the lines of making the most we can from our limited energy metabolism and lightening the burden on our bodies.
 

Gondwanaland

Senior Member
Messages
5,094
When healthy people start doing poorly on keto / lowcarb diets, they introduce 1x weekly what they call "carb nite", or carb backloading, when they eat "junk" food only. It apparently helps microbiome diversity, and their health stays optimal (my info comes from reading blogs and forums testimonials). So why don't I do just that? :confused:
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Vasha - thanks so much for your kind words, first of all!

there is much, much more work to be done before we would know whether all of this is right.)

@alex3619 informed me that this idea is a pretty old one, actually, and it's been poked and prodded-at for awhile:

I am familiar with Henry Butt's work going waaaay back. Indeed I started reading about this kind of thing about 1993....in the late 90s I put out my own (now debunked) paper on this stuff.

He recommended alanine for CFS.

Just because it's an 'older' idea doesn't make it more/less valid, just commenting that it's been around for awhile as a thought. :)

-J
 
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JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Can someone explain to me the difference between a ketogenic diet and a paleo diet? I know ketogenic diets are meant to induce ketosis, but I am not sure what that entails, practically speaking.

Cutting out the things that bother me has meant cutting out wheat and dairy, but it wasn't long before I realized that the nature of the grain didn't matter - if I ate too many grains of ANY kind, I felt sick. Blood sugar dysregulation may in part explain this. My mom has some GF bread she gave me last night and I was shocked at my altered perception of its taste - it tasted like it had been sprinkled with cane sugar!

I have a 'bread' recipe that is entirely composed of seeds and nuts that I will blog about later. I've been wanting to do recipes for ages, but I keep getting distracted by Science. ;)

I understand the worry about losing the ability to digest certain things and losing good gut microflora. These are reasonable concerns. But last time I ate something really bready (a scone from Panera) the results were disastrous. Neurologic manifestations like breaking out into a cold sweat, dizziness and that cortisol flush (hair on arms prickling, a wash of cold) that told me my body was in Assume Crash Positions mode. There were also stabby gut pains that came and went in waves, waayyy before that food should have been anywhere near the gut, so some kind of reflex GET IT AWAY FROM ME reaction. Geez. It was so dramatic that I felt a little foolish, honestly, like...

"What's wrong with you?"
"I ATE A SCONE."

Ugh.

In any case, I also have some recipes where I've swapped out some of the grains for seeds/nuts but there are still some flours. But I'm not going to touch wheat with a ten-foot pole!

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Any diet/nutrition gurus out there willing to suggest a diet plan (in a bit more detail than we've discussed so far in this thread) that takes into consideration the information in this article?

Seconded!

The sad thing is, all my students are in the Nutrition program... I'm teaching them chemistry, I need them to teach me nutrition!

-J
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Can someone explain to me the difference between a ketogenic diet and a paleo diet? I know ketogenic diets are meant to induce ketosis, but I am not sure what that entails, practically speaking.

The ketogenic diet involves balancing intake of protein, fats and carbohydrates in specific proportions. I believe it was originally formulated for epileptics? And is recommended for a few specific conditions. As to whether it addresses the specific metabolic dysfunction these articles propose for ME, I have no idea, but it sounds like a few people have found it helpful.

The Paleo diet is more based on a philosophy, and on eliminating specific groups of foods. (As opposed to balancing categories). It is basically suggesting a diet based on (presumed) eating patterns from human history. I personally find this approach a bit...dubious. Eg. Coconut sugar is fine, but white sugar is bad. I think sugar is sugar no matter which plant it comes from, and has the same effect on your body. But of course if this diet works for someone, have at it!

I don't personally think any diet is going to "cure" ME (or likely someone would have stumbled on it already). But maybe there is a specific approach that could be tailored to best manage metabolic dysfunction.
I suspect with the prevalence of MCAS, allergies, NCGI, Celiac etc that any diet would involve a bit of personal trial and error to find what works best for an individual.

@JaimeS , I have Celiac and I'm happy to share some gluten free / no flour recipes if you are interested.
 
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brenda

Senior Member
Messages
2,270
Location
UK
Its in Step two, building health. There is a long list of testimonies including those who had ME. I am not on the diet but looking at it. I don't fancy 3 tbsps of coconut oil a day :)