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Vegepa (Omega 3 & 6) - good idea or not?

Sasha

Fine, thank you
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UK
I've just had my first Perrin Technique (lymph drainage, basically) session and the therapist (as does Perrin himself) strongly recommends the use of Vegepa, which is a DHA-free formula of Omega 3 & 6. Each tablet contains 560mg of EPA and 200mg of Evening Primrose Oil.

I used to take supermarket Omega 3 & 6 capsules but then read something on the forums (I think) about it maybe not being a good idea for PWC.

Vegepa is sold by the ME Association, I think, and in the past, I think research indicated that this stuff was good for us.

Am I mistaken in thinking that there was some hint about us avoiding Omega 3 and/or 6? I think you are to take them in combination so as not to have an imbalance, so either one ruled out would be an issue.
 

justy

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Hi Sasha, Dr Myhill also recommends VEGEPA and it is expensive. I have been taking it for a good few months now, i dont know if it helps me or not but im sure i could probably do with it.

I think that it has been discussed by Dr Puri and others that the full dose of 8 a day is needed to get the maximum benefit and it has been reported anecdotaly that some didnt feel any effect until they took 8 a day (i think for 3 months and then reduce to a maintenance dose of 2-4 a day)

But for me i have never been able to take more than 2 or 3 a day as they give me terrible fishy stomach. I would be interested to hear from others about it as well.
Take care x
 

Sasha

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Thanks, justy - I'm sure Dr Myhill must keep up with the research so that's reassuring. I'm sorry you haven't been able to take the desired dose. It's certainly an expensive business!
 

justy

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Yes it is! even at only 2 a day it still seems to cost a lot. I mainly decided to stick with this brand because of the purity of it.
 
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Am I mistaken in thinking that there was some hint about us avoiding Omega 3 and/or 6? I think you are to take them in combination so as not to have an imbalance, so either one ruled out would be an issue.

From what I've read, both are beneficial and essential (we can only get them from external sources), but CFS patients usually have abnormally low omega 3 levels and abnormally high omega 6 values. Having too much omega 6 in proportion to omega 3 is apparently a bad thing. So it sounds like we usually don't need omega 6 supplementation at all, and it might even cause further problems unless you know you're deficient in it.
 

Sasha

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UK
From what I've read, both are beneficial and essential (we can only get them from external sources), but CFS patients usually have abnormally low omega 3 levels and abnormally high omega 6 values. Having too much omega 6 in proportion to omega 3 is apparently a bad thing. So it sounds like we usually don't need omega 6 supplementation at all, and it might even cause further problems unless you know you're deficient in it.

Thanks, Valentijn - do you (or anyone else reading this) have a reference for the finding of omega 6 levels being too high in CFS patients?
 

ukme

Senior Member
Messages
169
Each tablet contains 560mg of EPA and 200mg of Evening Primrose Oil.
That's per 2 tablets I think :)
My daughter has been taking these for years but I do remain sceptical about their benefits over similar less expensive products.
 

Sasha

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UK
That's per 2 tablets I think :)
My daughter has been taking these for years but I do remain sceptical about their benefits over similar less expensive products.

Oops! Yes, you're right - thanks!
 

Jenny

Senior Member
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1,388
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Dorset
One of the docs I see recommended a high dose of borage oil (4000mg) as well as high doses of EPA/DHA. Borage oil is rich in omega 6. After a week I got incredibly depressed.

It may have had nothing to do with the borage oil but some say borage oil can increase depression (though others say the opposite!).

Anyway, I've stopped it for now.

Jenny
 

jace

Off the fence
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856
Location
England
I don't think it is necessary to spend the money on VegEPA, though I did too, to start with. Now I just use a quality Omega 3 fish oil supplement. Tons cheaper, and my cognition is so much better since taking 3 grams a day. We get 6 and 9 in our diet. 6 and 9 are in nuts and nut butters, and in sunflower, olive and other common oils, soya and fat meats like bacon salami and hotdogs. It's the 3 our diets are deficient in.

Beware! there be people after your limited funds!
 

richvank

Senior Member
Messages
2,732
Hi, Sasha and the group.

I would like to give my views on supplementation of essential fatty acids in ME/CFS.

First, some of the main roles of omega 3 and 6 fatty acids in the body are to be part of cell membranes (including mitochondrial membranes) to raise their fluidity and thus to assist the cell receptors and channels in the membranes to operate properly, to help to build the myelin (white matter) in the brain, and to serve as substrates for making eicosanoids (signalling molecules, such as prostaglandins).

In ME/CFS, it is well established that there is a state of oxidative stress, and this is particularly important in the mitochondria.

It is known that the unsaturated (essential) fatty acids are the most vulnerable molecules in the cells to oxidative damage.

It is also known from the microscopic examinations done by Dr. John McLaren Howard at Acumen Lab in the UK that the mitochondria membranes are damaged in ME/CFS. The positive tests using Dr. Hokama's ciguatoxin test (which cross-reacts with cardiolipin, which is found almost exclusively in mito membranes in humans) is also evidence of damage to the mito membranes in ME/CFS, as is the work of Dr. Garth Nicolson using fluorescent indicators.

There is also increasing evidence of white matter deficits in ME/CFS from magnetic resonance brain scanning.

In view of all this evidence, it seems reasonable to believe that supplementing the essential fatty acids should be helpful in ME/CFS. However, there are some things to be aware of:

One is that so long as the state of oxidative stress is present, there will continue to be damage to the unsaturated fatty acids. Furthermore, the formation of lipid peroxides from these fatty acids is a chain reaction process, which feeds on itself. Therefore, while it should be beneficial to supplement these fatty acids, there needs to be a parallel effort to stop the oxidative stress. Otherwise, the situation might actually become worse from the supplementation.

In my view, treating to lift the methylation cycle block is the way to raise glutathione automatically and lower the oxidative stress. The simplified protocol for doing so includes a phospholipids supplement that contains the essential fatty acids.

Another thing to note is that people differ in their fatty acids status, in terms of the ratio of omega 3 to omega 6, depending on their diets and past supplementation. It's true that the average population (at least in the U.S., and I don't know about the UK) gets most of their unsaturated fatty acids from vegetable oils, which are high in omega-6. However, those who consume a lot of fish may be higher in omega-3. The status can be determined from a fatty acids panel, and it's important to run it on the red blood cell membranes, not the serum, in order to reflect to body content.

DHA is particularly important for the myelin in the brain. I don't agree that it should be avoided in ME/CFS.

There are different ways to supplement the essential fatty acids. As I noted, the simplified treatment uses phospholipids, as does Patricia Kane's approach. This has the advantage of also supplying choline, which is in short supply in ME/CFS because of the partial methylation cycle block. NT Factor also uses phospholipid (phosphatidylcholine) but in a liposomal form for better transport. It is also possible to use oils containing omega-3 and omega-6 fatty acids, and rely on the cells to convert them to the phospholipid forms, but this may be limited by the choline shortage.

I realize that my views differ from those of Prof. Puri, but in my opinion, he has misinterpreted the results of his and others' magnetic resonance spectroscopy measurements, in that he has assumed that creatine levels are normal in ME/CFS, so that the high ratio of choline to creatinine observed in brain scanning has been interpreted to mean that choline is high in ME/CFS.

However, both creatine and choline require methylation for their synthesis in the body, and thus, both are low. Creatine drops more than choline in ME/CFS, since its synthesis is normally the main user of methylation in the body, and this is what produces the elevation in the ratio of choline to creatine, but this is deceiving, because both are decreased. Additional evidence comes from 24-hour urine measurements of creatinine excretion, which are often found to be low in ME/CFS. Creatinine is the breakdown product of creatine. The low creatinine excretion may be mistakenly attributed to low lean body mass, but it is actually due to low creatine production because of the methylation deficit, in my view. We need absolute measurements of both creatine and choline in the brain in ME/CFS, and I hope this will be done soon. It is much easier to measure ratios with magnetic resonance spectroscopy, so that is what has commonly been done, but absolute measurements can be made with more effort, and this needs to be done.


Best regards,

Rich
 

Sasha

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UK
Hi Rich - thanks for a very considered reply to what I hadn't realised was such a complex topic! There's clearly a lot to this.

I haven't start on the methylation programme because of your warning not to do it without medical supervision. I don't understand biochemistry and would need guidance to do it. Would you say that it is something that an ordinary primary care physician would recognise as orthodox? Here in the UK I would have to get my GP to cooperate and he is unlikely to do that with something he is not familiar with.

In the absence of tests (which I don't know how to get here) and without doing the methylation programme, do you think it is likely to be safe to use the Vegepa supplement?
 

richvank

Senior Member
Messages
2,732
Hi Rich - thanks for a very considered reply to what I hadn't realised was such a complex topic! There's clearly a lot to this.

I haven't start on the methylation programme because of your warning not to do it without medical supervision. I don't understand biochemistry and would need guidance to do it. Would you say that it is something that an ordinary primary care physician would recognise as orthodox? Here in the UK I would have to get my GP to cooperate and he is unlikely to do that with something he is not familiar with.

In the absence of tests (which I don't know how to get here) and without doing the methylation programme, do you think it is likely to be safe to use the Vegepa supplement?

Hi, Sasha.

I understand your situation, and am afraid that I don't have a good solution to it. Mainstream physicians in the U.S., and I presume in the UK as well, are trained primarily to treat chronic disease with patented drugs that mainly block symptoms and do not address root causes. My impression is that the medical system may be even more tightly controlled in the UK than it is in the U.S. in this respect. In the U.S., we have some so-called alternative or complementary physicians, naturopaths, osteopaths and even chiropracters who use non-drug treatments for chronic illnesses, and while they have to keep looking over their shoulders to avoid trouble and keep their licenses, many are able to do so. Some regularly trained M.D.'s realize that their medical school training was very limited, and they go on to study on their own to try to understand root causes and treat them. In my view, these are the best physicians, but they are also subject to the most persecution from the "system."

As you know, I am not a physician, and I must take care not to give individual treatment advice unless a physician is on board to evaluate my suggestions. I realize that there are people who do methylation treatment on their own, without monitoring by a physician. However, I cannot advocate that. For one thing, although most people who do this type of treatment do not experience serious adverse effects, a few people who had other comorbidities experienced some severe adverse effects on this type of treatment early on, so it's important that a physician who is familiar with the individual case be able to evaluate whether this treatment is appropriate in that case, and to monitor for adverse effects and deal with them promptly and properly if they appear. For another thing, I need to stay out of legal trouble for the sake of myself and my family.

With regard to supplementing essential unsaturated fatty acids in ME/CFS without treating to lower the oxidative stress, I do have concerns, as I discussed in my earlier post.

Best regards,

Rich
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, Rich - yes, I think doctors in the UK are limited in their ability to go off the beaten track exactly as you say. Still, it is useful information to know that the methylation treatment isn't regarded as mainstream - at least it gives me a context in which to try to decide what to do next. Thanks again!
 

Biarritz13

Senior Member
Messages
699
Location
France
In ME/CFS, it is well established that there is a state of oxidative stress, and this is particularly important in the mitochondria.

In view of all this evidence, it seems reasonable to believe that supplementing the essential fatty acids should be helpful in ME/CFS. However, there are some things to be aware of:

One is that so long as the state of oxidative stress is present, there will continue to be damage to the unsaturated fatty acids. Furthermore, the formation of lipid peroxides from these fatty acids is a chain reaction process, which feeds on itself. Therefore, while it should be beneficial to supplement these fatty acids, there needs to be a parallel effort to stop the oxidative stress. Otherwise, the situation might actually become worse from the supplementation.

In my view, treating to lift the methylation cycle block is the way to raise glutathione automatically and lower the oxidative stress. The simplified protocol for doing so includes a phospholipids supplement that contains the essential fatty acids.

DHA is particularly important for the myelin in the brain. I don't agree that it should be avoided in ME/CFS.

I realize that my views differ from those of Prof. Puri, but in my opinion, he has misinterpreted the results of his and others' magnetic resonance spectroscopy measurements, in that he has assumed that creatine levels are normal in ME/CFS, so that the high ratio of choline to creatinine observed in brain scanning has been interpreted to mean that choline is high in ME/CFS.

However, both creatine and choline require methylation for their synthesis in the body, and thus, both are low. Creatine drops more than choline in ME/CFS, since its synthesis is normally the main user of methylation in the body, and this is what produces the elevation in the ratio of choline to creatine, but this is deceiving, because both are decreased. Additional evidence comes from 24-hour urine measurements of creatinine excretion, which are often found to be low in ME/CFS. Creatinine is the breakdown product of creatine. The low creatinine excretion may be mistakenly attributed to low lean body mass, but it is actually due to low creatine production because of the methylation deficit, in my view. We need absolute measurements of both creatine and choline in the brain in ME/CFS, and I hope this will be done soon. It is much easier to measure ratios with magnetic resonance spectroscopy, so that is what has commonly been done, but absolute measurements can be made with more effort, and this needs to be done.

Rich

I am sorry to bump this old thread.

I just ran accros what Rich said about Omega 3 and that it's better to lower the oxidative stress by methylation before supplementing with these.

I don't know if it's my poor english but does it make sense to someone here that the supplementation without treating oxidative stress can become worse for us?

Thank you.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I am sorry to bump this old thread.

I just ran accros what Rich said about Omega 3 and that it's better to lower the oxidative stress by methylation before supplementing with these.

I don't know if it's my poor english but does it make sense to someone here that the supplementation without treating oxidative stress can become worse for us?

Thank you.

That's the way I understand it. Rich says in his post above: "In my view, treating to lift the methylation cycle block is the way to raise glutathione automatically and lower the oxidative stress. The simplified protocol for doing so includes a phospholipids supplement that contains the essential fatty acids."

Here is the phospholipids supplement on his protocol: Phosphatidyl Serine Complex

I've already done Rich's protocol and now take omega 3s and antioxidants. One thing I take is Krill Oil, it has astaxanthin which is an antioxidant.