Mitochondrial dysfunction - mainstream view in CFS or not?

[Mij]

You read so much about too much omega-6 fat being bad for you. It is interesting to see that you can also have too little.

Does anyone know if it is possible to test your omega fat balance.

I had an RBC fatty acid test done years ago. The report is 4 pages long(!). Analysis shows very low values in the Omega 3 EPA range (3%), DHA range (13%) and decent values in the Omega 6 range.
"supplementation should be considered, alternation between flax, borage and fish oil in higher doses is recommended with higher emphasis on fish oil".

My antioxidant status was VERY low too.

Inflammation, oxidative stress , low antioxidant status can decrease Omega 3.
http://www.ncbi.nlm.nih.gov/pubmed/20038921

 

[brenda]

I have been looking into healthy/unhealthy fats and found this site where it says :

"The proteolytic enzymes are an essential part of innate immunity, and the highly unsaturated fatty acid, EPA, which is the most immunosuppressive of the fats, strongly inhibits proteolysis in some cells. The natural killer (NK) cells and phagocytic cells are two types of cell that are suppressed by PUFA, and they are involved in many kinds of physiological events, not just the killing of tumor cells and virus infected cells.
The immunosuppressive effects of PUFA are very general. Many metabolites that are known to have harmful effects on the immune system are increased by the PUFA (histamine [Masini, et al., 1990], serotonin, lactate, nitric oxide [Omura, et al., 2001]). These substances are also involved in tumor development."

The writer says that most research on fats was conducted at a time when agricultural interests dominated, and has since been discredited. He says that PUFA`s work because they suppress the immune system and therefore reduce inflamation. They also increase the risk of cancer. Things we don`t want with ME.

http://raypeat.com/articles/articles/unsuitablefats.shtml

 

[Michael]

Very recently, I increased my CoQ10 supplementation (from 100mg to 300mg/day). I've been astounded that I've woken up not feeling totally exhausted and having reduced pain and stiffness. This has been only three days so far. I'm hoping the improvement is real and not a placebo effect.

I've had Fibro for over 20 years and have had horrific stiffness and pain in my hips and lower back.. I have tried many things over the past years (stretching, massage, myofascial release, cranio-sacral therapy, etc). Every morning every day, the stiffness and pain has been horrible....until the last few mornings.

I've been able to walk better and actually do things I have not been able to do for quite a while. I'm continuing to learn details on mitochondrial function etc but I can only do it when I'm not tired. I've done much more than usual so it is time for bed for me.
Hi, I am curious as to how your stiffness is NOW, and do you think the higher doses of CoQ10 is the main helping factor? thanks

 

[Michael]

This looks like a really good book... Too bad it costs $167.20. It specifically mentions CFS and Fibro in Chapters 7 and 8.
https://play.google.com/store/books/details?id=aMT-cST490AC

Acquired Mitochondropathy – A New Paradigm in Western Medicine explaining Chronic Diseases
By Enno Freye

PUBLISHED: October 2011
PUBLISHER: Springer
PAGES: 392

The book on Acquired Mitochondropathy offers a new perspective on the understanding and the treatment of chronic ailments. Addressing a new paradigm deemed necessary, since in one of every four adults in the western world chronic ailments are on the rise. Resulting from energy dysfunction of cellular organelles, the mitochondria, the most of the common symptoms the physician faces during medical consultation are presented. An increasing focus on chronic disabilities presents difficulties for the busy practitioner, since patients typically describe a complex pattern of discomfort, disability, and distress, with pain affecting physical, social, and psychological functioning, which have to be put in the proper perspective. Since clinicians must efficiently condense widely varied symptomatic descriptions into characteristic patterns to permit accurate diagnosis and implement effective treatment, this book serves as a useful educational resource for the healthcare provider.

Based on these reviews I think I would NOT buy it! although I am curious to see it. Many cities have libraries that have a lending library service to get a book from another location... that may help some folks get the book.
http://www.amazon.com/Acquired-Mito...dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

 

[peggy-sue]

I take a high dose of EPA daily. It helps everything. When I went without it for a couple of months, I went downhill rapidly - and improved just as dramatically on restoring my intake, within a week.
I tried taking the (expensive) easily absorbed form of Co-q-10 and went rapidly downhill. I did persevere for 3 months, but just got worse and worse. I lost a whole summer of semi-health to it.

 

[Michael]

I take a high dose of EPA daily. It helps everything. When I went without it for a couple of months, I went downhill rapidly - and improved just as dramatically on restoring my intake, within a week.
I tried taking the (expensive) easily absorbed form of Co-q-10 and went rapidly downhill. I did persevere for 3 months, but just got worse and worse. I lost a whole summer of semi-health to it.

Hi, Peggy-Sue,
Can you give us more details of your use of EPA? brand, amount taken, number of times per day, etc? anything will be helpful. AND let us know WHAT improved! Thanks, and happy, healthy New Year!

 

[peggy-sue]

The one I take is the one recommended for ME by Prof. Basant Puri. It's made by a company called Igennus, the product is Vegepa (it is not vegetarian - the EPA is purified to pharmaceutical grade and comes from anchovies. The capsules also contains Evening primrose oil.)
I take 8 capsules a day.

It helps with brain-fog (massively) it helps to reduce the excessive gravity we appear to be subjected to, (I think some folk refer to that bit as "fatigue") so moving is easier. Basically, it reduces all symptoms. It's not any form of cure, it just makes everything a lot easier.

The company have/had a scheme for ME sufferers to get it a bit cheaper and raise funds for MEResearchUK (a brilliant organisation who fund scientific research, such as that going on in Dundee by Dr. Faisel Khan and Professor Jill Belch at the moment.)
I get mine through Lynne Kersh and have done for years. I know she personally bought an enormous stock using her own savings, (and spare bedroom!) so that she could continue to supply her ME-ers with it cheaply. The company itself seems to have changed the formula a tiny bit, given it a new name and put the price up.
The company and info can be found here.
http://igennus-hn.com/health-benefits/mechronic-fatigue-syndrome/

 

[Michael]

hi, Peggy-Sue,
Thanks for the info!
Is it possible for you and/or Lynne to email me details and prices of Vegepa as getting it cheaper is always good? Also, I am in Texas. Has it helped you with pain and stiffness?? My neck and shoulders are SO sore 24/7 and so far nothing has helped! thanks, Michael email: color2468@gmail.com

 

[peggy-sue]

Your head is obviously too heavy to hold up. Can you find a way of supporting the load?
(It's not silly, Heads are very, very heavy - a big load of bone and water. I get that myself sometimes - along with the bit about having to remember to force myself to breathe.)

I can't really say what exact symptoms it's helped with - my symptoms have changed over the years and I've been taking it since 2003.
All I do know is that when I went without it, I suffered for it. When I took it again, I got better again, rapidly.
I think it's recommended you take it for 3 months before you will notice a difference - you need to saturate your body with it. I suspect my rapid response must have been related to my body having not really been completely depleted.

Prof. Puri likens the stuff to the oil you put into your car - it just helps everything run more smoothly.
The particular type of fat it contains is the kind you want in your cell membranes - having the best sort of unsaturated fats there means easy movement and transfer of chemicals in to and out from cells - your body working at its most efficient.
Taking EPA increases the white matter volume of the brain - that's GOOD - the white matter supports the grey's functioning.

I started taking it with not many expectations. I knew of the research and physiology into fish oils which made it all perfectly logical, I'm quite well educated about cell physiology and membrane functioning!
I simply reckoned the stuuf would help make me the best I could be with ME.
I'm also aware it will reduce my chances of dementia; reduce my bad cholesterol levels and increase the good ones.

I need to contact Lynne soon anyway - I'll get back to you!

 

[dannybex]

I have been looking into healthy/unhealthy fats and found this site where it says :

"The proteolytic enzymes are an essential part of innate immunity, and the highly unsaturated fatty acid, EPA, which is the most immunosuppressive of the fats, strongly inhibits proteolysis in some cells. The natural killer (NK) cells and phagocytic cells are two types of cell that are suppressed by PUFA, and they are involved in many kinds of physiological events, not just the killing of tumor cells and virus infected cells.
The immunosuppressive effects of PUFA are very general. Many metabolites that are known to have harmful effects on the immune system are increased by the PUFA (histamine [Masini, et al., 1990], serotonin, lactate, nitric oxide [Omura, et al., 2001]). These substances are also involved in tumor development."

The writer says that most research on fats was conducted at a time when agricultural interests dominated, and has since been discredited. He says that PUFA`s work because they suppress the immune system and therefore reduce inflamation. They also increase the risk of cancer. Things we don`t want with ME.

http://raypeat.com/articles/articles/unsuitablefats.shtml

Hi Brenda,

I think Ray Peat has some good things to say, and definitely has a different take on almost all issues, which is always good so we can get other viewpoints. That being said, he's also criticized for basing a lot of his conclusions almost solely on rat studies, w/almost no human studies on his site. He's definitely out there on a ledge, insisting that there are no such thing as essential fatty acids!

This study alone suggests that omega-3's (which he deplores) helps thyroid function:

http://www.wellnessresources.com/studies/fish_oil_boosts_t3_function_within_cells

I appreciate his take on how our modern diets provide too much 'stimulating' methionine (because we eat almost exclusively muscle meats, and throw away the rest of the animal, which contains other important (and calming) amino acids like glycine, proline, etc., -- amino acids that help build cartilage, joints, and skin.

But for the life of me, the rest of his diet and other recommendations are quite bizarre: Sugar, in quite large amounts too, potato juice, lots of milk, orange juice, raw carrots, never cooked, along with aspirin and thyroid supplements several times a day.

???

 

[brenda]

Yes agreed Dan that many of his ideas are bizarre. His followers eat Gummie Bears for sugar and gelatin. Having said that however, many of them make huge claims for improved health and performance in the case of athletes. They are drinking like two quarts of skinned milk a day and the same in orange juice .

He is not the only one saying that PUFA`s are bad when they are in the form of oils rather than from a natural source like grass fed cattle. Oils are not a natural foodstuff. And maybe the natural anti-nutrients present in nuts and seeds, concentrate in the oils, I don`t know I have not researched this yet..

I have cut out all oils and only use saturated fat and have felt a difference that is hard to explain, and more importantly, have now been able to start on methylation supplements albeit in small doses, whereas last time I did this, I reacted very badly. I think now that some people have such poor integrity of the cell wall that any rancidity at all will be very harmfull and unsaturated oils start to go rancid as soon as they are manufactured.

Btw the study you quoted was performed on rats.

I don`t know, perhaps there is an initial boost to T3 due to an immune response because of the anti-nutrients and natural pesticides, then the immune system slows. I feel that my adrenals may be more stressed since stopping PUFA perhaps by improved thyroid function. I am not due to a thyroid check for a while.

I like people who think outside of the box and Peat certainly does this.

Brenda

 

[golden]

Thanks, Rich, that's an extremely helpful reply and you're very kind to give the time for such a detailed response.

I've been flailing around lately trying to find a CFS practitioner whose treatment protocol I might be able to follow even if I don't have access to them (and in the UK, I don't have access to any) and what strikes me about them is the disparity in their approaches. As you say, each has their own speciality and their treatments seem to reflect this. We desperately need a joined-up theory, which requires a joined-up research effort. It's as though everyone has a piece of the puzzle but no-one is putting it together to make a picture.

It sounds as though I had better not tackle my GP with this but rather just get stuck into Dr Myhill's protocol without any testing (a copy of which she would be obliged to send to my GP).

I am almost certain that if you agree beforehand that only you are to receive your medical data and declare that no discussion either written or verbal is to take place without your permission , then Dr. Myhill must by law, respect that, and no correspondence with be sent to your G.P.

 

[dannybex]

Yes agreed Dan that many of his ideas are bizarre. His followers eat Gummie Bears for sugar and gelatin. Having said that however, many of them make huge claims for improved health and performance in the case of athletes. They are drinking like two quarts of skinned milk a day and the same in orange juice .

He is not the only one saying that PUFA`s are bad when they are in the form of oils rather than from a natural source like grass fed cattle. Oils are not a natural foodstuff. And maybe the natural anti-nutrients present in nuts and seeds, concentrate in the oils, I don`t know I have not researched this yet..

I have cut out all oils and only use saturated fat and have felt a difference that is hard to explain, and more importantly, have now been able to start on methylation supplements albeit in small doses, whereas last time I did this, I reacted very badly. I think now that some people have such poor integrity of the cell wall that any rancidity at all will be very harmfull and unsaturated oils start to go rancid as soon as they are manufactured.

Btw the study you quoted was performed on rats.

I don`t know, perhaps there is an initial boost to T3 due to an immune response because of the anti-nutrients and natural pesticides, then the immune system slows. I feel that my adrenals may be more stressed since stopping PUFA perhaps by improved thyroid function. I am not due to a thyroid check for a while.

I like people who think outside of the box and Peat certainly does this.

Brenda

I appreciate that too Brenda, and also agree he does make some good points and interesting arguments. I agree (and other docs support) his advocating more carbs (although not necessarily white sugar) for those with adrenal burnout, and also his recommendation of gelatin, which actually has much more calming aminos like glycine and proline compared to muscle meats.

And good call on the study I posted -- !!! -- didn't realize it was on rats too!

I do agree that 0-6 pufas are a huge problem...much worse than I realized...they're so ubiquitous, but I don't think he has sufficient studies, etc., to back up his claims against 0-3's. If you go on youtube, there are a few videos featuring Dr. William (Bill) Lands, who posts charts and studies in his talk showing the dramatic increase in 0-6's in so many, many foods (peanuts are the worst), and how 0-3's are the only thing that can help displace the 0-6's.

But I guess my main issue overall is that the diet stuff that is way out there, that works for him and some of his supporters, may -- may -- be working because he takes a lot of thyroid and also other things like DHEA and pregnenolone -- and aspirin. I just wonder if the gallons of milk and orange juice would work if he weren't taking so many other meds??? And/or if he wouldn't need aspirin (with all it's risks) if he ate some salmon and/or tried some pharmaceutical-grade fish oil.

???

He's definitely an interesting man however, and a very nice one at that. He'll try and help folks out with an email, when most others couldn't be bothered, especially without charging a monstrous fee.

 

[PhoenixDown]

Depression is a serious disorder, resulting from breakdown of biochemical pathways, there is a specific test fro measuring it - the dexamethasone supressor test, Phoenix Down...

What percentage of depression patients have had that test though? Millions of people are diagnosed with it, my point is that it's an idiopathic syndrome like CFS. If a patient was positive on that test, they shouldn't be labelled as having depression since it's blatantly confusing when you take the common usage of the term in to account.

Does the dexamethasone supressor test uniquely define what you call depression or is it in fact an element of many illnesses like abnormal cytokines are?

 

[Ema]

What percentage of depression patients have had that test though? Millions of people are diagnosed with it, my point is that it's an idiopathic syndrome like CFS. If a patient was positive on that test, they shouldn't be labelled as having depression since it's blatantly confusing when you take the common usage of the term in to account.

Does the dexamethasone supressor test uniquely define what you call depression or is it in fact an element of many illnesses like abnormal cytokines are?

The dexamethasone suppression test looks for persistently high levels of cortisol after a suppressing dose of steroid is taken. More likely reasons for this elevation would be Cushing's disease but cortisol can also remain elevated due to alcoholism, kidney disease, obesity and other conditions (including depression).

I don't think it is a very good test for depression as the specificity is not there.

http://www.ncbi.nlm.nih.gov/pubmed/3310667

Ema

 

[brenda]

Dan

He's also criticized for basing a lot of his conclusions almost solely on rat studies, w/almost no human studies on his site. He's definitely out there on a ledge, insisting that there are no such thing as essential fatty acids!

This is not true as I have found the following, and they were references for just one article.

Clin Exp Allergy. 2004 Feb;34(2):194-200. Maternal breast milk long-chain n-3 fatty acids are associated with increased risk of atopy in breastfed infants. Stoney RM, Woods RK, Hosking CS, Hill DJ, Abramson MJ, Thien FC.

Am J Clin Nutr. 2004 Nov;80(5):1167-74. Docosahexaenoic acid concentrations are higher in women than in men because of estrogenic effects. Giltay EJ, Gooren LJ, Toorians AW, Katan MB, Zock PL. "The proportion of DHA was 15 +/- 4% (x +/- SEM; P < 0.0005) higher in the women than in the men. Among the women, those taking oral contraceptives had 10 +/- 4% (P = 0.08) higher DHA concentrations than did those not taking oral contraceptives. Administration of oral ethinyl estradiol, but not transdermal 17beta-estradiol, increased DHA by 42 +/- 8% (P < 0.0005), whereas the antiandrogen cyproterone acetate did not affect DHA. Parenteral testosterone decreased DHA by 22 +/- 4% (P < 0.0005) in female-to-male transsexual subjects. Anastrozole decreased estradiol concentrations significantly and DHA concentrations nonsignificantly (9 +/- 6%; P = 0.09). CONCLUSION: Estrogens cause higher DHA concentrations in women than in men, probably by upregulating synthesis of DHA from vegetable precursors."

Lipids 22(3), 133-6, 1987.. "Effects of parenteral nutrition with high doses of linoleate on the developing human liver and brain," Martinez, M., and A. Ballabriga.

Acta Paediatr 1996 Jun;85(6):679-83. Phospholipid fatty acids in cord blood: family history and development of allergy. Yu G, Kjellman NI, Bjorksten B.

I havecome across strong attacks towards him, including misinformation (as usual) coming from the industries which stand to lose most by his views and although I am not a worshipper follower by any means, I really hate to see these underhand methods used to discredit anyone.

0-3's are the only thing that can help displace the 0-6's.

Its only because the 0-6`s are coming from intensively farmed animals and artificial foods that this happens. All of our modern diseases have occured since PUFA`s have been `found` to be essential, before that when naturally reared animals were the source of most peoples fat intake, heart attacks cancer and stroke were little heard of.

The answer is to cut the 0-6`s and the 0-3`s and use 0-9`s not take more 0-3`s. That`s the conclusion I came to.

But I guess my main issue overall is that the diet stuff that is way out there, that works for him and some of his supporters, may -- may -- be working because he takes a lot of thyroid and also other things like DHEA and pregnenolone -- and aspirin. I just wonder if the gallons of milk and orange juice would work if he weren't taking so many other meds??? And/or if he wouldn't need aspirin (with all it's risks) if he ate some salmon and/or tried some pharmaceutical-grade fish oil.

I think the success is down to what they avoid - omega 3`s and 6`s. He does say that sick people need to eat differently to healthy people so not everyone gets to eat the Gummy Bears!

Brenda

 

[dannybex]

Dan

This is not true as I have found the following, and they were references for just one article.

I guess I should've said 'the majority of his citations', but then again, that's true for a lot of research.

I have come across strong attacks towards him, including misinformation (as usual) coming from the industries which stand to lose most by his views and although I am not a worshipper follower by any means, I really hate to see these underhand methods used to discredit anyone.

Me too!

Its only because the 0-6`s are coming from intensively farmed animals and artificial foods that this happens. All of our modern diseases have occured since PUFA`s have been `found` to be essential, before that when naturally reared animals were the source of most peoples fat intake, heart attacks cancer and stroke were little heard of.

The answer is to cut the 0-6`s and the 0-3`s and use 0-9`s not take more 0-3`s. That`s the conclusion I came to.

Well, we'll have to agree to disagree on that one. While 0-9's are important too, I'd suggest that it's the excess of omega-six, and the lack of omega-3's that have caused a great deal of the problem, but I agree that saturated fats are not the bad guys they're made out to be. Note that grass-fed animals have a much higher level of 0-3's than farmed.

Plus there are a lot of other things that have changed -- all the chemicals, the artificial sweetners, the high-fructose corn syrup for the last 35 years, and flavors high in glutamates, artificial colors, the processed foods (like even white rice) that are stripped of their vitamins...going back to the 1930's-1940's...all of these things in addition to the high 0-6 levels may be contributing to our poor health -- as a society we're definitely paying the price.

I think the success is down to what they avoid - omega 3`s and 6`s. He does say that sick people need to eat differently to healthy people so not everyone gets to eat the Gummy Bears!

Brenda

Like I said before, I don't think he's an evil man at all, and some of his advice is excellent...I personally just don't agree with all of it, mainly because he's on these other drugs that allow him to function.

But if you're feeling better with his suggestions, that is fantastic Brenda! Hope to hear more in the future...and perhaps your success will help me change my mind.

 

[brenda]

Thanks Dan I`ll keep you up to date.

 

[MeSci]

While 0-9's are important too, I'd suggest that it's the excess of omega-six, and the lack of omega-3's that have caused a great deal of the problem, but I agree that saturated fats are not the bad guys they're made out to be. Note that grass-fed animals have a much higher level of 0-3's than farmed.

Plus there are a lot of other things that have changed -- all the chemicals, the artificial sweetners, the high-fructose corn syrup for the last 35 years, and flavors high in glutamates, artificial colors, the processed foods (like even white rice) that are stripped of their vitamins...going back to the 1930's-1940's...all of these things in addition to the high 0-6 levels may be contributing to our poor health -- as a society we're definitely paying the price.

You may find this article on edible fats interesting:

http://www.anh-europe.org/ANH-Intl_Feature_Lifting_the_lid_on_edible_fat_fallacies

 

[MeSci]

Just come across this new paper on omega-3s and mortality:

http://annals.org/article.aspx?articleid=1671714

I don't know if it's due to ME-brain but I can't work out what is meant by "Lower risk was largely attributable to fewer cardiovascular than noncardiovascular deaths."