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Re: Lipid replacement therapy in CFS

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RIch and all

Again, I got lucky. For two years I took 10 grams of fish oil and 3 T

flaxseedoil/yoghurt combo daily..... and benefited from it. I suspect I do not

have the enzyme necessary to convert the flaxseed oil as I had been on it for a

year (2001) prior to adding the fish oil and got a huge boost when the fish

oil was added.

mjh

In a message dated 2/28/06 1:11:48 P.M. Eastern Standard Time,

richvank@... writes:

It is well established that the lipids, as are found in the inner

and outer mitochondrial phospholipid membranes, bear the brunt of

the attack by the reactive oxygen species. In particular, the

unsaturated fatty acids (omega-3 and omega-6) which are an integral

part of these phospholipids, sustain most of the attack, because

fatty acids are highly reduced chemically and are the most

chemically reactive of the fatty acids. This has been discussed in

papers by Prof. Pall and by Dr. Kenny de Meirleir and

associates, among others. Several studies have shown that PWCs are

particularly depleted in these essential unsaturated fatty acids,

including a recent one by Dr. Maes as well as several earlier ones.

Some studies have shown that PWCs benefit from supplementing with

lipids containing these fatty acids. It is very important to have

sufficient unsaturated fatty acids as part of the phospholipids that

form the membranes in order to maintain the fluidity of the

membranes, which is necessary for proper operation of the protein

transporters that carry substances in and out of the mitochondria,

and part of the mitochondrial dysfunction in PWCs is undoubtedly due

to depletion of these fatty acids. These unsaturated fatty acids

are also important for the formation of eicosanoids, such as

prostaglandins, which act as local hormones and exert control on

variety of processes, including inflammation. The flexibility of

red blood cells also depends on unsaturated fatty acids in their

membranes, and they need to be flexible to squeeze through the

capillaries, which have smaller inside diameters than the size of

the undistorted red blood cells. You may recall that Dr. Les

Simpson of New Zealand emphasized the supplementation of essential

fatty acids in CFS (ME) for this reason.

However, if a person takes flax oil or fish oil or evening primrose

oil, for examples, the body must convert the unsaturated fatty acids

in these supplements to phospholipids if they are to be used in

mitochondrial and other cellular membranes. If the mitochondria are

not in good condition, it is likely that this process will not

proceed at a normal rate.

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Rich,

I tried NT Factor last year. I was hesitant to try it after reading that

alpha lipoic acid, one of my nemeses, was one of its ingredients. When I

brought up my concerns to the developer of the product, he reassured me that

the ALA in it was naturally occurring and only a very small amount. I

decided to take a risk, but I ended up reacting badly to it -- had a bout of

depression -- and stopped after about a week of less than the full dose, so

I never got to see if it increased my energy level.

Ellen

>I'd be interested to

> know if anyone on the list has tried Propax or NT Factor, and if so,

> what your experience has been.

>

> Rich

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Hi Rich,

Great review! I am sure you would agree that I have problems with my

mitochondria and oxidative stress.

Which product did you order?

Thanks, Sue T

So I have ordered some NT Factor to try myself. As you know, I

don't have CFS, but I'm sure my mitochondria can use some help.

Reportedly, it has been found that NT Factor can bring mitochondrial

function in an older animal or person back to that of one half his

or her age, and it also restores some hearing loss. I have some

hearing loss as well, so this will be an interesting experiment.

I'll let you know how it comes out. If it works well on me, I will

probably suggest that people with CFS give it a try. Incidentally,

I have no financial interest in this product. I'd be interested to

know if anyone on the list has tried Propax or NT Factor, and if so,

what your experience has been.

Rich

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Hi, Rich.

" rvankonynen " <richvank@...> wrote:

product. I'd be interested to

> know if anyone on the list has tried Propax or NT Factor, and if so,

> what your experience has been.

>

> Rich

***I've tried many methods for to address the phospholipid issue within the last

few years to no avail symptomatically. I even got to a point where one test

said I should back off omega 3 fish oil intake for a while, levels were well

above normal.

***I haven't tried propax or NT factor specifically for this so I think I'll

give at least one of these a whirl. I think the " stiff brain " feeling I and I

know Katrina on this list have as a troublesome CFS symptom seems to correspond

to what one might imagine could happen with long term exposure and low defenses

to oxidative stress.

***I hope this is reversable.

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Hi Rich.

I have been taking NT Factor for a few months now. I have not noticed

any improvement that I can attribute to it. I feel that I have a huge

still unknown problem at the root of my CFIDS that overshadows many

small improvements that therapies like NT Factor may provide.

Tom

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Hi, Tom.

Thanks for the information. Sorry that this stuff has not helped

you. I think you're right about there being an unknown root problem.

As you know, I'm big on the genetic stuff now. There may be one or

more genetic variations at the root of your illness. I was thinking

of NT Factor as a means of repairing residual damage after the root

cause was dealt with. I'm thinking that the autism approaches will

get at the root cause for quite a few PWCs, and then the NT Factor

could come along later and repair damage. If the damage mechanism is

still operating, I think the benefits of NT Factor might be a lot less.

Rich

>

> Hi Rich.

>

> I have been taking NT Factor for a few months now. I have not

noticed

> any improvement that I can attribute to it. I feel that I have a

huge

> still unknown problem at the root of my CFIDS that overshadows many

> small improvements that therapies like NT Factor may provide.

>

> Tom

>

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Hi, Ellen.

Thanks for the information. Sorry it didn't work for you.

Rich

>

> Rich,

>

> I tried NT Factor last year. I was hesitant to try it after

reading that

> alpha lipoic acid, one of my nemeses, was one of its ingredients.

When I

> brought up my concerns to the developer of the product, he

reassured me that

> the ALA in it was naturally occurring and only a very small

amount. I

> decided to take a risk, but I ended up reacting badly to it -- had

a bout of

> depression -- and stopped after about a week of less than the full

dose, so

> I never got to see if it increased my energy level.

>

> Ellen

>

> >I'd be interested to

> > know if anyone on the list has tried Propax or NT Factor, and if

so,

> > what your experience has been.

> >

> > Rich

>

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In a message dated 3/3/06 10:34:05 A.M. Eastern Standard Time,

ellenelle@... writes:

Rich,

I'd be interested in finding a " home-made " way to replace lipids. Any ideas?

Thanks,

Ellen

Fish oil. I take about 9 grams a day.

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Rich,

I'd be interested in finding a " home-made " way to replace lipids. Any ideas?

Thanks,

Ellen

> Hi, Ellen.

>

> Thanks for the information. Sorry it didn't work for you.

>

> Rich

>

>

>>

>> Rich,

>>

>> I tried NT Factor last year. I ended up reacting badly to it -- had

> a bout of

>> depression -- and stopped after about a week of less than the full

> dose, so

>> I never got to see if it increased my energy level.

>>

>> Ellen

>>

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MJH,

I can't tolerate this at all. Wish I could. I can't tolerate the enzymes or

bile supplements that would help, either. It's the phosphorylization(?) I'm

wondering about here.

Ellen

>

> Rich,

>

> I'd be interested in finding a " home-made " way to replace lipids. Any

> ideas?

>

> Thanks,

> Ellen

>

>

>

>

> Fish oil. I take about 9 grams a day.

>

>

>

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Ellen,

I don't know if I " m off track here. When you speak of

phosphorylization.....are yu talking about the method in which the

lipids are made to become more bio-available?

Tammy

>

> MJH,

>

> I can't tolerate this at all. Wish I could. I can't tolerate the

enzymes or

> bile supplements that would help, either. It's the

phosphorylization(?) I'm

> wondering about here.

>

> Ellen

>

> >

> > Rich,

> >

> > I'd be interested in finding a " home-made " way to replace

lipids. Any

> > ideas?

> >

> > Thanks,

> > Ellen

> >

> >

> >

> >

> > Fish oil. I take about 9 grams a day.

> >

> >

> >

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Tammy,

Yes, in a sense. I mean the way they are processed to become a part of the

cell's lipid membrane, if I understand correctly.

Ellen

Re: Lipid replacement therapy in CFS

> Ellen,

>

> I don't know if I " m off track here. When you speak of

> phosphorylization.....are yu talking about the method in which the

> lipids are made to become more bio-available?

>

> Tammy

>

>

>

>

>

>>

>> MJH,

>>

>> I can't tolerate this at all. Wish I could. I can't tolerate the

> enzymes or

>> bile supplements that would help, either. It's the

> phosphorylization(?) I'm

>> wondering about here.

>>

>> Ellen

>>

>> >

>> > Rich,

>> >

>> > I'd be interested in finding a " home-made " way to replace

> lipids. Any

>> > ideas?

>> >

>> > Thanks,

>> > Ellen

>> >

>> >

>> >

>> >

>> > Fish oil. I take about 9 grams a day.

>> >

>> >

>> >

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  • 1 month later...
Guest guest

Hello Rich

I have just caught up with this message about lipids. In the Autumn

I tried vegEPA a fatty acid supplement recommended by Prof Basant

Puri. In his book Chronic Fatigue Syndrome: a natural way to treat

ME (details below) he makes the case for using high doses of a

combination of EPA and evening primrose oil without any DHA present -

ie vegEPA. He claims, in smallish studies, that after 3 months 85%

of subjects showed improvement. I took the supplement for 3 months

and then stopped as I felt no difference but have since been in

contact with people who took it for much longer before feeling

anything and then inproved. One of them told me that Prof Puri spoke

at a meeting a few weeks ago and said that somebody took it for 14

months before suddenly feeling better.

That obviously raises the question of whether it was something else

that was responsible for the change after all that time but

nonetheless I am considering trying it again for a longer period. I

would simply go ahead and do that if cost were not an issue. However

he mentions a RBC fatty acid test and I suspect that the one he

refers to is by Biolab as the reference ranges are identical so I

may have that done first. The link for UK people is

www.biolab.co.uk/repefas.html

Some of what he says it at odds with what I have read in the

Pangborn and Baker book. They, for instance, specifically mention

the need for DHA. Also Prof Puri talks about the choline/creatine

ratio in the brain as if creatine is a constant and the choline too

high. Pand B suggest choline is too low.

Below is a precis of the book, posted here with writer's permission,

which outlines his ideas. I don't know how the table will reproduce,

probably not well.VegEPA is available from Igennus Ltd tel 0044 845

1300 424. I can't locate the web address (I lost that info when I

had to reset computer recently) but I think it might be

www.vegepa.co.uk

Best wishes

Chronic Fatigue Syndrome a natural way to treat M.E.

A Review and Summary of the book by Professor Basant K. Puri

Hammersmith Press Ltd, 2005.

Summary by Jacqui Footman for

South Molton M.E. Support Group (Tel 01769 572738/572207)

Professor Puri is Consultant/Professor, MRI Unit, Imaging Sciences

Department, MRC Clinical Sciences Centre, Hammersmith Hospital and

Head of the Lipid Neuroscience Group, Imperial College, London.

In the introductory chapter of this book, Professor Puri describes

what he terms a breakthrough in the treatment of ME/CFS following

his conclusion that a key component needed for treatment was a

combination of ultra-pure EPA (completely free of any DHA) and

virgin evening primrose oil. Such a product first became available

in April 2004 and within 3 months he was seeing 80% of his ME/CFS

patients who followed his recommendation to use this product making

clinical improvements, some of which were striking.

He continues in chapters 2 and 3 by first giving an excellent

background history and summary about ME/CFS, dismissing very

effectively any remaining notion that it be a condition of

psychological origin, and surmises that there is a great deal of

evidence from a consideration of viral infections, changes in the

immune system, blood fatty acid levels and brain biochemistry that

persons experiencing the clinical features of M.E, as for example

those involved in the Royal Free Hospital outbreak in 1955, are

experiencing physical (organic) illness. He concludes that ¡§the

best explanation for the pattern of results seen in ME/CFS, with

reduced NK cell activity, reduced Th 1 cell activity, increased Th 2

cell activity and increased Tc cell activity, is that there is a pre-

existing long-term viral infection, to which the immune system is

reacting.¡¨ page 30.

Throughout these two chapters, Professor Puri explains in

straightforward terms the evidence he is using and why it is

significant. He refers in some detail to studies which provide

evidence of statistically significant lower values of both omega-3

and omega-6 fatty acids in red blood cells and that these would be

representative of levels in brain cells. He also describes two

Magnetic Resonance Spectroscopy (Neurospectroscopy) studies, which

revealed statistically significant high ratios of choline/creatine

and how several experts agree that this reflects a change in the

turnover of fatty acids in cell membranes. All the blood, brain

biochemistry and immune system findings described in Chapter 3 could

be consistently brought together in one model, which provides a

strong pointer to natural treatment with fatty acids.

In Chapter 4, Professor Puri explains some of the functions of omega-

3 and omega-6 fatty acids in the body, and how the body normally

would obtain these fatty acids.

„X These fatty acids have extremely important roles in

maintaining the correct structure of cell membranes throughout the

body. Without sufficient AA and DHA, cell membranes become more

rigid and the reduced flexibility is reflected in poorer or abnormal

functioning of receptors that lie in the membranes, which in turn

means that communication between cells, including brain cells, is

impaired.

„X AA, DGLA and EPA act as the starting point for the

manufacture by the body of eicosanoids. Eicosanoids are special

types of hormones, such as, to give but one example,

prostaglandins. They are involved in many processes that are

important in maintaining the health and well-being of the body and

in fighting disease, including: blood-clotting, regulating blood

pressure, the response to disease or trauma ¡V including inflammation

responses, pain and fever, the secretion of acid by the stomach.

„X When sufficient EPA is available to the body it can be

converted into natural sleep mediators.

„X EPA has a particularly important role in helping the body to

combat viral infections. Professor Puri describes the ways in which

EPA is both directly and indirectly viricidal.

The body normally obtains omega-3 and omega-6 fatty acids from food

and subsequent synthesis within the body. The following diagram is

crucial to understanding how.

OMEGA-6 FATTY ACIDS OMEGA-3 FATTY ACIDS

linoleic acid

alpha-linolenic acid

GLA

DGLA

AA

EPA

DHA

At the top of each chain respectively, linoleic acid and alpha-

linolenic acid have to be obtained from food; they cannot be

manufactured in the body and therefore are known as Essential Fatty

Acids, EFAs. As you go down each chain, GLA, DGLA and AA and EPA

and DHA are manufactured in the body from the preceding fatty acid

in the chain with the help of special enzymes. Delta-6-desaturase

is the enzyme that catalyses the chemical reaction that produces

both GLA and EPA. Without this enzyme the body is short of all the

other fatty acids. Professor Puri goes on to explain how an

invading virus can block delta-6-desaturase from working properly,

hence blocking adequate production of GLA and EPA. The virus does

this for self preservation, because EPA has anti-viral properties.

With reduced EPA and eicosanoids, defences are weakened and the

virus is free to reproduce rapidly. ¡§Viruses are able to fuse their

cell membranes with those of the host (human) cells they are

invading. Once complete fusion is achieved, the viral contents,

including viral genetic information (in the form of DNA or RNA), can

readily be passed into the host cell. The infected cell is not

necessarily killed; it can be parasitized by the virus so that it

remains alive but its functions are altered to suit the virus.¡¨ page

23.

Professor Puri lists the many other effects of this viral strategy

of blocking the enzyme delta-6-desaturase. ¡§Unable to make

sufficient quantities of EPA, the human body is no longer able to

manufacture sufficient quantities of the EPA-based natural sleep

mediators. As a result, the body does not get enough deep

refreshing sleep and ends up tired and even less able to resist the

viruses. The lack of DGLA, AA and EPA also means that the body

cannot produce enough eicosanoids, and so the general health and

well-being of the body suffers. The body cannot mount proper immune

response measures against the invader, and has to endure long bouts

of painful sore throats, and enlarged and tender lymph glands. EPA

and certain eicosanoids normally help to keep our joints working

properly and ¡¥well-oiled¡¦; their disappearance means that the body

has to endure pains in many different joints.¡¨

¡§If these consequences were not bad enough, there is even worse to

come. Blocking that first enzyme (delta-6-desaturase) also means

that cell membranes cannot get enough AA and DHA so that they become

more rigid and lose their normal flexibility. The effects on the

protein receptor molecules that lie in the cell membranes are

profound; the size and shape of these receptors change so that they

no longer accept and pass on signals in the right way.

Communication between cells is impaired. It would be like an enemy

hitting our satellite and radar communications during war. The

results of this in the human brain are cognitive defects, such as

problems with short-term memory and with concentration.¡¨

¡§These results will sound familiar to any reader who is suffering

from chronic fatigue syndrome. They constitute key symptoms and

signs of this disease.¡¨ pages 54-55.

If you have followed thus far, you can now see that the logical

treatment to compensate for the virus blocking delta-6-desaturase is

to supply the body with adequate GLA and EPA. This is the basis of

Professor Puri¡¦s recommended treatment and the product that he

recommends is VegEPA. He makes it clear that he has no financial

connection with the manufacturer but recommends it on the basis of

its quality and that at the time of writing the book it was the only

product available providing this particular combination of fatty

acids.

The GLA is provided in the form of virgin evening primrose oil. The

importance of using virgin oil is explained in the book ¡V vital

components of the oil can be compromised in the manufacturing

process so not all evening primrose or starflower oils are equal.

The EPA is derived from fish oil, purified to remove all

contaminants and the DHA. Bad news for vegetarians who thought they

could get their Omega-3 from flax seed oil ¡V flax seed oil provides

alpha-linolenic acid, which is no use to the body if delta-6-

desaturase is blocked. Professor Puri explains that if GLA and EPA

are supplemented as well as reducing dietary intake of linoleic acid

(which competes with EPA for delta-6-desaturase) there should be

sufficient delta-6-desaturase available to synthesise DHA from EPA

(see diagram above). Once GLA is provided, there is no problem with

the synthesis to DGLA and AA because different enzymes are used

which are not blocked.

Professor Puri explains at length why it is important NOT to include

DHA in the Omega-3 supplement (most other Omega-3 supplements

contain DHA and this is recommended in some quarters). Many

ordinary fish oil supplements containing EPA and DHA also contain

heavy metal and other contaminants absorbed by fish at the top of

the marine food chain from polluted water. People with M.E. can be

extra sensitive to such contaminants. Leading researchers in the

field have come to the conclusion that the type of DHA that comes in

supplements tends to inhibit many of the beneficial actions of EPA.

Studies using different ratios of EPA and DHA are quoted and a

recent study in Iceland found a positive correlation between levels

of DHA and linoleic acid with DNA breaks in certain white blood

cells linked to a risk of cell reprogramming and cancer. If,

because you have read papers saying that you need DHA, you are

worried about taking a DHA-free supplement, Professor Puri reassures

you that the DHA you need for the structure of cell membranes will

be synthesised from EPA in your body, provided your intake of

linoleic acid is sufficiently low (see below). This is a better

source of DHA than that found in most omega-3 supplements.

Dose: the recommended dose of VegEPA capsules for the treatment of

ME/CFS is 7 or 8 capsules daily, 4 in the morning and 3 or 4 in the

evening. In Professor Puri¡¦s first trial of 20 patients with

intractable ME/CFS, at the time of writing still to be written up

for a medical journal, the first 4 patients took 4 capsules daily.

Only one of these improved. The next 16 patients took 7 or 8

capsules. All 16 improved. For children aged 8-14 the adult dose

should be halved.

Cofactors: there are many enzyme-mediated conversions take place in

the body in the processing of fatty acids. In order for these to

take place, small amounts of certain vitamins and minerals are

essential. The most important cofactors are Folic acid, vitamin

B12, vitamin B6, Niacin, Biotin, Vitamin C, Zinc, Selenium and

Magnesium. Professor Puri recommends you get these from a diet rich

in sources of these vitamins and minerals, as detailed in the book,

but says that taking them in supplement form if there are problems

with the dietary approach is better than missing out on them

altogether.

The intake of linoleic acid in the Western diet has increased

exponentially over the past half century. Since this fatty acid

competes with EPA for delta-6-desaturase it is important to reduce

intake. Virtually all oils contain high amounts (details given on

page 118) with two of the worst being sunflower and safflower oils,

which we commonly use for cooking. Change to pure virgin olive oil,

which has the lowest linoleic acid content, only 9%. Avoid fried

food if possible, and if you must fry use olive oil. Another fat it

is very important to avoid is trans fat, found in margarine and

anything that has ¡¥hydrogenated vegetable oil¡¦ on the label, such as

most pastries, biscuits, cakes, pies, sachets of drinking

chocolate. Trans fats not only inhibit the action of delta-6-

desaturase, but also are incorporated by body cells into their

membranes, making them inflexible and causing problems with signals

passing between cells, including brain cells. It is better to use

butter than margarine, particularly a brand such as Anchor, produced

from grass-fed cows, which means the butter is more likely to

contain some EPA.

Long-running stress levels, anxiety or fear can raise the levels of

stress hormones such as cortisol, which in turn inhibit the proper

functioning of the enzyme delta-6-desaturase. It is important to

reduce stress levels, even making major lifestyle changes if

necessary. Excess consumption of caffeine and alcohol, as well as

any smoking equally can have inhibitory effects on the enzyme.

Other forms of stress that can cause increases in cortisol are

listed: pain, infection, low blood sugar levels, starvation,

haemorrhage (bleeding). Wherever possible, these are to be

avoided. Suggested therapies to help reduce stress include CBT,

exercise (if you are up to it ¡V Professor Puri suggests walking,

slow cycling or swimming), Massage therapy, Aromatherapy,

Reflexology, Daoyin Tao and The Technique. Not mentioned

in the book, but worth mentioning here because members of South

Molton ME Support Group have found it of great benefit in this

respect, is EFT (Emotional Freedom Techniques).

Within the context of the whole treatment protocol, Professor Puri

also warns against and explains the deleterious effects of refined

sugar consumption and suggests alternatives. One of the ways sugar

can cause harm is the way in which it effects energy levels. ¡§After

the immediate rush that occurs following a meal or drink that

contains added sugar, your energy levels may actually feel as if

they have diminished, as your body tries hard to mop up all the

extra sugar by pouring out insulin into your blood stream. In order

to cope with the feeling of tiredness that this process engenders,

you may have another sugar-containing ¡¥food¡¦ or drink. And so the

cycle repeats itself day after day through endless cups of sweet tea

and coffee and large numbers of chocolate bars, sweets and biscuits

(laden with harmful trans fats)¡¨ page 121. Professor Puri strongly

recommends three square meals daily and if snacks are necessary,

provides suggestions for alternatives that are free from refined

sugar and trans fats.

Other benefits: Professor Puri has written similar books about the

treatment of both ADHD and depression using fatty acid supplements.

Aside from these two other conditions, some further benefits are

mentioned. It is explained how taking this combination of evening

primrose oil and EPA improves sleep, energy levels, concentration

and thinking, the cardiovascular system (there is special mention of

help with atrial fibrillation), body weight, skin, hair and nails.

The only side effect that might be considered adverse is a possible

slight loosening of the bowel contents. Actually though, this is

also a beneficial effect since toxins can be cleared more quickly

and have less time to be absorbed. Omega-3 fatty acids also have a

thinning effect on the blood, again beneficial in that it reduces

risk of DVT, heart attack and stroke, but if you are already taking

a blood-thinning drug such as warfarin or heparin, you must consult

your doctor before starting omega-3 supplementation so the doctor

can make any necessary adjustments to your drug prescription.

Full names for the fatty acids mentioned in abbreviated form

throughout

AA arachidonic acid, vitally important as a building block for

eicosanoids

DGLA dihomo-gamma-linolenic acid, vitally important as a building

block for eicosanoids

GLA gamma-linoleic acid

EPA eicosapentaenoic acid, vitally important as a building block

for eicosanoids, sleep mediators, interferons

DHA docosahexaenoic acid, important in maintaining the correct

structure of cell membranes

I hope you have found this synopsis helpful. I found the book

fascinating. Professor Puri clearly has great insight and

understanding for this illness and the people who live with it. He

does an outstanding job of explaining complex scientific matters in

a way that everyone can follow, which greatly added to my enjoyment

of the book and allowed me to feel confident writing this summary.

I cannot make a strong enough recommendation that you read this book

to discover all the detail that is missing here.

Jacqui Footman, South Molton ME Support Group,

jacquiftmn@...

February 2006

The printing of this summary for SWAME (South Western Alliance for

ME) groups is sponsored by Jacqui Footman, EFT Practitioner at

Molford House Surgery, 27 South Street, South Molton, North Devon,

EX36 4AA, www.MolfordHouseSurgery.co.uk 01769 574830

Jacqui would like to thank both Popplewell, DO, Proprietor

of Molford House Surgery, and Dr Westcott, of East Street

Surgery, South Molton, for all their help and support, firstly when

Jacqui¡¦s ME/CFS was diagnosed in 2003 and subsequently for the help

and encouragement that has enabled Jacqui over time not only to

discover the benefits of EFT treatment herself and to live well with

ME/CFS but also to complete her full practitioner training, to share

those benefits with others and to work part-time at Molford House.

For further information about EFT see

www.MolfordHouseSurgery.co.uk/eft1.htm and www.emofree.com.

For EFT practitioner registers see www.emofree.com and

www.MeridianTherapy.org (the AAMET website)

Please contact Jacqui 01769 572207 for information regarding

discounts available to members of SWAME Groups on purchases of

VegEPA.

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Hi ,

Further to my recent posts with CS re VegEPA (which I am currently

trying) did you in your first endeavour with this product have any

unpleasant side effects? Have you tried the other products - Efamol

Marine and Eye Q - both of which I have tried without success? I would

be very interested in your experiences.

Also, Rich - if you look at this post... are you able to throw any light

on why I might feel considerably less well having (so far) taken this

product for just a little over a week. CS suggests that my immune

system is over revved - would you concur? Any input gratefully received

:-).

BW

Rosie

Hello Rich

I have just caught up with this message about lipids. In the Autumn

I tried vegEPA a fatty acid supplement recommended by Prof Basant

Puri. In his book Chronic Fatigue Syndrome: a natural way to treat

ME (details below) he makes the case for using high doses of a

combination of EPA and evening primrose oil without any DHA present -

ie vegEPA. He claims, in smallish studies, that after 3 months 85%

of subjects showed improvement. I took the supplement for 3 months

and then stopped as I felt no difference but have since been in

contact with people who took it for much longer before feeling

anything and then inproved. One of them told me that Prof Puri spoke

at a meeting a few weeks ago and said that somebody took it for 14

months before suddenly feeling better.

That obviously raises the question of whether it was something else

that was responsible for the change after all that time but

nonetheless I am considering trying it again for a longer period. I

would simply go ahead and do that if cost were not an issue. However

he mentions a RBC fatty acid test and I suspect that the one he

refers to is by Biolab as the reference ranges are identical so I

may have that done first. The link for UK people is

www.biolab.co.uk/repefas.html

Some of what he says it at odds with what I have read in the

Pangborn and Baker book. They, for instance, specifically mention

the need for DHA. Also Prof Puri talks about the choline/creatine

ratio in the brain as if creatine is a constant and the choline too

high. Pand B suggest choline is too low.

Below is a precis of the book, posted here with writer's permission,

which outlines his ideas. I don't know how the table will reproduce,

probably not well.VegEPA is available from Igennus Ltd tel 0044 845

1300 424. I can't locate the web address (I lost that info when I

had to reset computer recently) but I think it might be

www.vegepa.co.uk

Best wishes

Chronic Fatigue Syndrome a natural way to treat M.E.

A Review and Summary of the book by Professor Basant K. Puri

Hammersmith Press Ltd, 2005.

Summary by Jacqui Footman for

South Molton M.E. Support Group (Tel 01769 572738/572207)

Professor Puri is Consultant/Professor, MRI Unit, Imaging Sciences

Department, MRC Clinical Sciences Centre, Hammersmith Hospital and

Head of the Lipid Neuroscience Group, Imperial College, London.

In the introductory chapter of this book, Professor Puri describes

what he terms a breakthrough in the treatment of ME/CFS following

his conclusion that a key component needed for treatment was a

combination of ultra-pure EPA (completely free of any DHA) and

virgin evening primrose oil. Such a product first became available

in April 2004 and within 3 months he was seeing 80% of his ME/CFS

patients who followed his recommendation to use this product making

clinical improvements, some of which were striking.

He continues in chapters 2 and 3 by first giving an excellent

background history and summary about ME/CFS, dismissing very

effectively any remaining notion that it be a condition of

psychological origin, and surmises that there is a great deal of

evidence from a consideration of viral infections, changes in the

immune system, blood fatty acid levels and brain biochemistry that

persons experiencing the clinical features of M.E, as for example

those involved in the Royal Free Hospital outbreak in 1955, are

experiencing physical (organic) illness. He concludes that ¡§the

best explanation for the pattern of results seen in ME/CFS, with

reduced NK cell activity, reduced Th 1 cell activity, increased Th 2

cell activity and increased Tc cell activity, is that there is a pre-

existing long-term viral infection, to which the immune system is

reacting.¡¨ page 30.

Throughout these two chapters, Professor Puri explains in

straightforward terms the evidence he is using and why it is

significant. He refers in some detail to studies which provide

evidence of statistically significant lower values of both omega-3

and omega-6 fatty acids in red blood cells and that these would be

representative of levels in brain cells. He also describes two

Magnetic Resonance Spectroscopy (Neurospectroscopy) studies, which

revealed statistically significant high ratios of choline/creatine

and how several experts agree that this reflects a change in the

turnover of fatty acids in cell membranes. All the blood, brain

biochemistry and immune system findings described in Chapter 3 could

be consistently brought together in one model, which provides a

strong pointer to natural treatment with fatty acids.

In Chapter 4, Professor Puri explains some of the functions of omega-

3 and omega-6 fatty acids in the body, and how the body normally

would obtain these fatty acids.

„X These fatty acids have extremely important roles in

maintaining the correct structure of cell membranes throughout the

body. Without sufficient AA and DHA, cell membranes become more

rigid and the reduced flexibility is reflected in poorer or abnormal

functioning of receptors that lie in the membranes, which in turn

means that communication between cells, including brain cells, is

impaired.

„X AA, DGLA and EPA act as the starting point for the

manufacture by the body of eicosanoids. Eicosanoids are special

types of hormones, such as, to give but one example,

prostaglandins. They are involved in many processes that are

important in maintaining the health and well-being of the body and

in fighting disease, including: blood-clotting, regulating blood

pressure, the response to disease or trauma ¡V including inflammation

responses, pain and fever, the secretion of acid by the stomach.

„X When sufficient EPA is available to the body it can be

converted into natural sleep mediators.

„X EPA has a particularly important role in helping the body to

combat viral infections. Professor Puri describes the ways in which

EPA is both directly and indirectly viricidal.

The body normally obtains omega-3 and omega-6 fatty acids from food

and subsequent synthesis within the body. The following diagram is

crucial to understanding how.

OMEGA-6 FATTY ACIDS OMEGA-3 FATTY ACIDS

linoleic acid

alpha-linolenic acid

GLA

DGLA

AA

EPA

DHA

At the top of each chain respectively, linoleic acid and alpha-

linolenic acid have to be obtained from food; they cannot be

manufactured in the body and therefore are known as Essential Fatty

Acids, EFAs. As you go down each chain, GLA, DGLA and AA and EPA

and DHA are manufactured in the body from the preceding fatty acid

in the chain with the help of special enzymes. Delta-6-desaturase

is the enzyme that catalyses the chemical reaction that produces

both GLA and EPA. Without this enzyme the body is short of all the

other fatty acids. Professor Puri goes on to explain how an

invading virus can block delta-6-desaturase from working properly,

hence blocking adequate production of GLA and EPA. The virus does

this for self preservation, because EPA has anti-viral properties.

With reduced EPA and eicosanoids, defences are weakened and the

virus is free to reproduce rapidly. ¡§Viruses are able to fuse their

cell membranes with those of the host (human) cells they are

invading. Once complete fusion is achieved, the viral contents,

including viral genetic information (in the form of DNA or RNA), can

readily be passed into the host cell. The infected cell is not

necessarily killed; it can be parasitized by the virus so that it

remains alive but its functions are altered to suit the virus.¡¨ page

23.

Professor Puri lists the many other effects of this viral strategy

of blocking the enzyme delta-6-desaturase. ¡§Unable to make

sufficient quantities of EPA, the human body is no longer able to

manufacture sufficient quantities of the EPA-based natural sleep

mediators. As a result, the body does not get enough deep

refreshing sleep and ends up tired and even less able to resist the

viruses. The lack of DGLA, AA and EPA also means that the body

cannot produce enough eicosanoids, and so the general health and

well-being of the body suffers. The body cannot mount proper immune

response measures against the invader, and has to endure long bouts

of painful sore throats, and enlarged and tender lymph glands. EPA

and certain eicosanoids normally help to keep our joints working

properly and ¡¥well-oiled¡¦; their disappearance means that the body

has to endure pains in many different joints.¡¨

¡§If these consequences were not bad enough, there is even worse to

come. Blocking that first enzyme (delta-6-desaturase) also means

that cell membranes cannot get enough AA and DHA so that they become

more rigid and lose their normal flexibility. The effects on the

protein receptor molecules that lie in the cell membranes are

profound; the size and shape of these receptors change so that they

no longer accept and pass on signals in the right way.

Communication between cells is impaired. It would be like an enemy

hitting our satellite and radar communications during war. The

results of this in the human brain are cognitive defects, such as

problems with short-term memory and with concentration.¡¨

¡§These results will sound familiar to any reader who is suffering

from chronic fatigue syndrome. They constitute key symptoms and

signs of this disease.¡¨ pages 54-55.

If you have followed thus far, you can now see that the logical

treatment to compensate for the virus blocking delta-6-desaturase is

to supply the body with adequate GLA and EPA. This is the basis of

Professor Puri¡¦s recommended treatment and the product that he

recommends is VegEPA. He makes it clear that he has no financial

connection with the manufacturer but recommends it on the basis of

its quality and that at the time of writing the book it was the only

product available providing this particular combination of fatty

acids.

The GLA is provided in the form of virgin evening primrose oil. The

importance of using virgin oil is explained in the book ¡V vital

components of the oil can be compromised in the manufacturing

process so not all evening primrose or starflower oils are equal.

The EPA is derived from fish oil, purified to remove all

contaminants and the DHA. Bad news for vegetarians who thought they

could get their Omega-3 from flax seed oil ¡V flax seed oil provides

alpha-linolenic acid, which is no use to the body if delta-6-

desaturase is blocked. Professor Puri explains that if GLA and EPA

are supplemented as well as reducing dietary intake of linoleic acid

(which competes with EPA for delta-6-desaturase) there should be

sufficient delta-6-desaturase available to synthesise DHA from EPA

(see diagram above). Once GLA is provided, there is no problem with

the synthesis to DGLA and AA because different enzymes are used

which are not blocked.

Professor Puri explains at length why it is important NOT to include

DHA in the Omega-3 supplement (most other Omega-3 supplements

contain DHA and this is recommended in some quarters). Many

ordinary fish oil supplements containing EPA and DHA also contain

heavy metal and other contaminants absorbed by fish at the top of

the marine food chain from polluted water. People with M.E. can be

extra sensitive to such contaminants. Leading researchers in the

field have come to the conclusion that the type of DHA that comes in

supplements tends to inhibit many of the beneficial actions of EPA.

Studies using different ratios of EPA and DHA are quoted and a

recent study in Iceland found a positive correlation between levels

of DHA and linoleic acid with DNA breaks in certain white blood

cells linked to a risk of cell reprogramming and cancer. If,

because you have read papers saying that you need DHA, you are

worried about taking a DHA-free supplement, Professor Puri reassures

you that the DHA you need for the structure of cell membranes will

be synthesised from EPA in your body, provided your intake of

linoleic acid is sufficiently low (see below). This is a better

source of DHA than that found in most omega-3 supplements.

Dose: the recommended dose of VegEPA capsules for the treatment of

ME/CFS is 7 or 8 capsules daily, 4 in the morning and 3 or 4 in the

evening. In Professor Puri¡¦s first trial of 20 patients with

intractable ME/CFS, at the time of writing still to be written up

for a medical journal, the first 4 patients took 4 capsules daily.

Only one of these improved. The next 16 patients took 7 or 8

capsules. All 16 improved. For children aged 8-14 the adult dose

should be halved.

Cofactors: there are many enzyme-mediated conversions take place in

the body in the processing of fatty acids. In order for these to

take place, small amounts of certain vitamins and minerals are

essential. The most important cofactors are Folic acid, vitamin

B12, vitamin B6, Niacin, Biotin, Vitamin C, Zinc, Selenium and

Magnesium. Professor Puri recommends you get these from a diet rich

in sources of these vitamins and minerals, as detailed in the book,

but says that taking them in supplement form if there are problems

with the dietary approach is better than missing out on them

altogether.

The intake of linoleic acid in the Western diet has increased

exponentially over the past half century. Since this fatty acid

competes with EPA for delta-6-desaturase it is important to reduce

intake. Virtually all oils contain high amounts (details given on

page 118) with two of the worst being sunflower and safflower oils,

which we commonly use for cooking. Change to pure virgin olive oil,

which has the lowest linoleic acid content, only 9%. Avoid fried

food if possible, and if you must fry use olive oil. Another fat it

is very important to avoid is trans fat, found in margarine and

anything that has ¡¥hydrogenated vegetable oil¡¦ on the label, such as

most pastries, biscuits, cakes, pies, sachets of drinking

chocolate. Trans fats not only inhibit the action of delta-6-

desaturase, but also are incorporated by body cells into their

membranes, making them inflexible and causing problems with signals

passing between cells, including brain cells. It is better to use

butter than margarine, particularly a brand such as Anchor, produced

from grass-fed cows, which means the butter is more likely to

contain some EPA.

Long-running stress levels, anxiety or fear can raise the levels of

stress hormones such as cortisol, which in turn inhibit the proper

functioning of the enzyme delta-6-desaturase. It is important to

reduce stress levels, even making major lifestyle changes if

necessary. Excess consumption of caffeine and alcohol, as well as

any smoking equally can have inhibitory effects on the enzyme.

Other forms of stress that can cause increases in cortisol are

listed: pain, infection, low blood sugar levels, starvation,

haemorrhage (bleeding). Wherever possible, these are to be

avoided. Suggested therapies to help reduce stress include CBT,

exercise (if you are up to it ¡V Professor Puri suggests walking,

slow cycling or swimming), Massage therapy, Aromatherapy,

Reflexology, Daoyin Tao and The Technique. Not mentioned

in the book, but worth mentioning here because members of South

Molton ME Support Group have found it of great benefit in this

respect, is EFT (Emotional Freedom Techniques).

Within the context of the whole treatment protocol, Professor Puri

also warns against and explains the deleterious effects of refined

sugar consumption and suggests alternatives. One of the ways sugar

can cause harm is the way in which it effects energy levels. ¡§After

the immediate rush that occurs following a meal or drink that

contains added sugar, your energy levels may actually feel as if

they have diminished, as your body tries hard to mop up all the

extra sugar by pouring out insulin into your blood stream. In order

to cope with the feeling of tiredness that this process engenders,

you may have another sugar-containing ¡¥food¡¦ or drink. And so the

cycle repeats itself day after day through endless cups of sweet tea

and coffee and large numbers of chocolate bars, sweets and biscuits

(laden with harmful trans fats)¡¨ page 121. Professor Puri strongly

recommends three square meals daily and if snacks are necessary,

provides suggestions for alternatives that are free from refined

sugar and trans fats.

Other benefits: Professor Puri has written similar books about the

treatment of both ADHD and depression using fatty acid supplements.

Aside from these two other conditions, some further benefits are

mentioned. It is explained how taking this combination of evening

primrose oil and EPA improves sleep, energy levels, concentration

and thinking, the cardiovascular system (there is special mention of

help with atrial fibrillation), body weight, skin, hair and nails.

The only side effect that might be considered adverse is a possible

slight loosening of the bowel contents. Actually though, this is

also a beneficial effect since toxins can be cleared more quickly

and have less time to be absorbed. Omega-3 fatty acids also have a

thinning effect on the blood, again beneficial in that it reduces

risk of DVT, heart attack and stroke, but if you are already taking

a blood-thinning drug such as warfarin or heparin, you must consult

your doctor before starting omega-3 supplementation so the doctor

can make any necessary adjustments to your drug prescription.

Full names for the fatty acids mentioned in abbreviated form

throughout

AA arachidonic acid, vitally important as a building block for

eicosanoids

DGLA dihomo-gamma-linolenic acid, vitally important as a building

block for eicosanoids

GLA gamma-linoleic acid

EPA eicosapentaenoic acid, vitally important as a building block

for eicosanoids, sleep mediators, interferons

DHA docosahexaenoic acid, important in maintaining the correct

structure of cell membranes

I hope you have found this synopsis helpful. I found the book

fascinating. Professor Puri clearly has great insight and

understanding for this illness and the people who live with it. He

does an outstanding job of explaining complex scientific matters in

a way that everyone can follow, which greatly added to my enjoyment

of the book and allowed me to feel confident writing this summary.

I cannot make a strong enough recommendation that you read this book

to discover all the detail that is missing here.

Jacqui Footman, South Molton ME Support Group,

jacquiftmn@...

February 2006

The printing of this summary for SWAME (South Western Alliance for

ME) groups is sponsored by Jacqui Footman, EFT Practitioner at

Molford House Surgery, 27 South Street, South Molton, North Devon,

EX36 4AA, www.MolfordHouseSurgery.co.uk 01769 574830

Jacqui would like to thank both Popplewell, DO, Proprietor

of Molford House Surgery, and Dr Westcott, of East Street

Surgery, South Molton, for all their help and support, firstly when

Jacqui¡¦s ME/CFS was diagnosed in 2003 and subsequently for the help

and encouragement that has enabled Jacqui over time not only to

discover the benefits of EFT treatment herself and to live well with

ME/CFS but also to complete her full practitioner training, to share

those benefits with others and to work part-time at Molford House.

For further information about EFT see

www.MolfordHouseSurgery.co.uk/eft1.htm and www.emofree.com.

For EFT practitioner registers see www.emofree.com and

www.MeridianTherapy.org (the AAMET website)

Please contact Jacqui 01769 572207 for information regarding

discounts available to members of SWAME Groups on purchases of

VegEPA.

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

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Hi ,

Another thought.. do you have any address (e-mail or otherwise) that I

could perhaps put my questions to Prof Puri (I am in the UK). I find it

very confusing that I am getting such an unpleasant response from

something one would assume to be so benign.

Rosie

Subject: Re: Lipid replacement therapy in CFS

Hello Rich

I have just caught up with this message about lipids. In the Autumn

I tried vegEPA a fatty acid supplement recommended by Prof Basant

Puri. In his book Chronic Fatigue Syndrome: a natural way to treat

ME (details below) he makes the case for using high doses of a

combination of EPA and evening primrose oil without any DHA present -

ie vegEPA. He claims, in smallish studies, that after 3 months 85%

of subjects showed improvement. I took the supplement for 3 months

and then stopped as I felt no difference but have since been in

contact with people who took it for much longer before feeling

anything and then inproved. One of them told me that Prof Puri spoke

at a meeting a few weeks ago and said that somebody took it for 14

months before suddenly feeling better.

That obviously raises the question of whether it was something else

that was responsible for the change after all that time but

nonetheless I am considering trying it again for a longer period. I

would simply go ahead and do that if cost were not an issue. However

he mentions a RBC fatty acid test and I suspect that the one he

refers to is by Biolab as the reference ranges are identical so I

may have that done first. The link for UK people is

www.biolab.co.uk/repefas.html

Some of what he says it at odds with what I have read in the

Pangborn and Baker book. They, for instance, specifically mention

the need for DHA. Also Prof Puri talks about the choline/creatine

ratio in the brain as if creatine is a constant and the choline too

high. Pand B suggest choline is too low.

Below is a precis of the book, posted here with writer's permission,

which outlines his ideas. I don't know how the table will reproduce,

probably not well.VegEPA is available from Igennus Ltd tel 0044 845

1300 424. I can't locate the web address (I lost that info when I

had to reset computer recently) but I think it might be

www.vegepa.co.uk

Best wishes

Chronic Fatigue Syndrome a natural way to treat M.E.

A Review and Summary of the book by Professor Basant K. Puri

Hammersmith Press Ltd, 2005.

Summary by Jacqui Footman for

South Molton M.E. Support Group (Tel 01769 572738/572207)

Professor Puri is Consultant/Professor, MRI Unit, Imaging Sciences

Department, MRC Clinical Sciences Centre, Hammersmith Hospital and

Head of the Lipid Neuroscience Group, Imperial College, London.

In the introductory chapter of this book, Professor Puri describes

what he terms a breakthrough in the treatment of ME/CFS following

his conclusion that a key component needed for treatment was a

combination of ultra-pure EPA (completely free of any DHA) and

virgin evening primrose oil. Such a product first became available

in April 2004 and within 3 months he was seeing 80% of his ME/CFS

patients who followed his recommendation to use this product making

clinical improvements, some of which were striking.

He continues in chapters 2 and 3 by first giving an excellent

background history and summary about ME/CFS, dismissing very

effectively any remaining notion that it be a condition of

psychological origin, and surmises that there is a great deal of

evidence from a consideration of viral infections, changes in the

immune system, blood fatty acid levels and brain biochemistry that

persons experiencing the clinical features of M.E, as for example

those involved in the Royal Free Hospital outbreak in 1955, are

experiencing physical (organic) illness. He concludes that ¡§the

best explanation for the pattern of results seen in ME/CFS, with

reduced NK cell activity, reduced Th 1 cell activity, increased Th 2

cell activity and increased Tc cell activity, is that there is a pre-

existing long-term viral infection, to which the immune system is

reacting.¡¨ page 30.

Throughout these two chapters, Professor Puri explains in

straightforward terms the evidence he is using and why it is

significant. He refers in some detail to studies which provide

evidence of statistically significant lower values of both omega-3

and omega-6 fatty acids in red blood cells and that these would be

representative of levels in brain cells. He also describes two

Magnetic Resonance Spectroscopy (Neurospectroscopy) studies, which

revealed statistically significant high ratios of choline/creatine

and how several experts agree that this reflects a change in the

turnover of fatty acids in cell membranes. All the blood, brain

biochemistry and immune system findings described in Chapter 3 could

be consistently brought together in one model, which provides a

strong pointer to natural treatment with fatty acids.

In Chapter 4, Professor Puri explains some of the functions of omega-

3 and omega-6 fatty acids in the body, and how the body normally

would obtain these fatty acids.

„X These fatty acids have extremely important roles in

maintaining the correct structure of cell membranes throughout the

body. Without sufficient AA and DHA, cell membranes become more

rigid and the reduced flexibility is reflected in poorer or abnormal

functioning of receptors that lie in the membranes, which in turn

means that communication between cells, including brain cells, is

impaired.

„X AA, DGLA and EPA act as the starting point for the

manufacture by the body of eicosanoids. Eicosanoids are special

types of hormones, such as, to give but one example,

prostaglandins. They are involved in many processes that are

important in maintaining the health and well-being of the body and

in fighting disease, including: blood-clotting, regulating blood

pressure, the response to disease or trauma ¡V including inflammation

responses, pain and fever, the secretion of acid by the stomach.

„X When sufficient EPA is available to the body it can be

converted into natural sleep mediators.

„X EPA has a particularly important role in helping the body to

combat viral infections. Professor Puri describes the ways in which

EPA is both directly and indirectly viricidal.

The body normally obtains omega-3 and omega-6 fatty acids from food

and subsequent synthesis within the body. The following diagram is

crucial to understanding how.

OMEGA-6 FATTY ACIDS OMEGA-3 FATTY ACIDS

linoleic acid

alpha-linolenic acid

GLA

DGLA

AA

EPA

DHA

At the top of each chain respectively, linoleic acid and alpha-

linolenic acid have to be obtained from food; they cannot be

manufactured in the body and therefore are known as Essential Fatty

Acids, EFAs. As you go down each chain, GLA, DGLA and AA and EPA

and DHA are manufactured in the body from the preceding fatty acid

in the chain with the help of special enzymes. Delta-6-desaturase

is the enzyme that catalyses the chemical reaction that produces

both GLA and EPA. Without this enzyme the body is short of all the

other fatty acids. Professor Puri goes on to explain how an

invading virus can block delta-6-desaturase from working properly,

hence blocking adequate production of GLA and EPA. The virus does

this for self preservation, because EPA has anti-viral properties.

With reduced EPA and eicosanoids, defences are weakened and the

virus is free to reproduce rapidly. ¡§Viruses are able to fuse their

cell membranes with those of the host (human) cells they are

invading. Once complete fusion is achieved, the viral contents,

including viral genetic information (in the form of DNA or RNA), can

readily be passed into the host cell. The infected cell is not

necessarily killed; it can be parasitized by the virus so that it

remains alive but its functions are altered to suit the virus.¡¨ page

23.

Professor Puri lists the many other effects of this viral strategy

of blocking the enzyme delta-6-desaturase. ¡§Unable to make

sufficient quantities of EPA, the human body is no longer able to

manufacture sufficient quantities of the EPA-based natural sleep

mediators. As a result, the body does not get enough deep

refreshing sleep and ends up tired and even less able to resist the

viruses. The lack of DGLA, AA and EPA also means that the body

cannot produce enough eicosanoids, and so the general health and

well-being of the body suffers. The body cannot mount proper immune

response measures against the invader, and has to endure long bouts

of painful sore throats, and enlarged and tender lymph glands. EPA

and certain eicosanoids normally help to keep our joints working

properly and ¡¥well-oiled¡¦; their disappearance means that the body

has to endure pains in many different joints.¡¨

¡§If these consequences were not bad enough, there is even worse to

come. Blocking that first enzyme (delta-6-desaturase) also means

that cell membranes cannot get enough AA and DHA so that they become

more rigid and lose their normal flexibility. The effects on the

protein receptor molecules that lie in the cell membranes are

profound; the size and shape of these receptors change so that they

no longer accept and pass on signals in the right way.

Communication between cells is impaired. It would be like an enemy

hitting our satellite and radar communications during war. The

results of this in the human brain are cognitive defects, such as

problems with short-term memory and with concentration.¡¨

¡§These results will sound familiar to any reader who is suffering

from chronic fatigue syndrome. They constitute key symptoms and

signs of this disease.¡¨ pages 54-55.

If you have followed thus far, you can now see that the logical

treatment to compensate for the virus blocking delta-6-desaturase is

to supply the body with adequate GLA and EPA. This is the basis of

Professor Puri¡¦s recommended treatment and the product that he

recommends is VegEPA. He makes it clear that he has no financial

connection with the manufacturer but recommends it on the basis of

its quality and that at the time of writing the book it was the only

product available providing this particular combination of fatty

acids.

The GLA is provided in the form of virgin evening primrose oil. The

importance of using virgin oil is explained in the book ¡V vital

components of the oil can be compromised in the manufacturing

process so not all evening primrose or starflower oils are equal.

The EPA is derived from fish oil, purified to remove all

contaminants and the DHA. Bad news for vegetarians who thought they

could get their Omega-3 from flax seed oil ¡V flax seed oil provides

alpha-linolenic acid, which is no use to the body if delta-6-

desaturase is blocked. Professor Puri explains that if GLA and EPA

are supplemented as well as reducing dietary intake of linoleic acid

(which competes with EPA for delta-6-desaturase) there should be

sufficient delta-6-desaturase available to synthesise DHA from EPA

(see diagram above). Once GLA is provided, there is no problem with

the synthesis to DGLA and AA because different enzymes are used

which are not blocked.

Professor Puri explains at length why it is important NOT to include

DHA in the Omega-3 supplement (most other Omega-3 supplements

contain DHA and this is recommended in some quarters). Many

ordinary fish oil supplements containing EPA and DHA also contain

heavy metal and other contaminants absorbed by fish at the top of

the marine food chain from polluted water. People with M.E. can be

extra sensitive to such contaminants. Leading researchers in the

field have come to the conclusion that the type of DHA that comes in

supplements tends to inhibit many of the beneficial actions of EPA.

Studies using different ratios of EPA and DHA are quoted and a

recent study in Iceland found a positive correlation between levels

of DHA and linoleic acid with DNA breaks in certain white blood

cells linked to a risk of cell reprogramming and cancer. If,

because you have read papers saying that you need DHA, you are

worried about taking a DHA-free supplement, Professor Puri reassures

you that the DHA you need for the structure of cell membranes will

be synthesised from EPA in your body, provided your intake of

linoleic acid is sufficiently low (see below). This is a better

source of DHA than that found in most omega-3 supplements.

Dose: the recommended dose of VegEPA capsules for the treatment of

ME/CFS is 7 or 8 capsules daily, 4 in the morning and 3 or 4 in the

evening. In Professor Puri¡¦s first trial of 20 patients with

intractable ME/CFS, at the time of writing still to be written up

for a medical journal, the first 4 patients took 4 capsules daily.

Only one of these improved. The next 16 patients took 7 or 8

capsules. All 16 improved. For children aged 8-14 the adult dose

should be halved.

Cofactors: there are many enzyme-mediated conversions take place in

the body in the processing of fatty acids. In order for these to

take place, small amounts of certain vitamins and minerals are

essential. The most important cofactors are Folic acid, vitamin

B12, vitamin B6, Niacin, Biotin, Vitamin C, Zinc, Selenium and

Magnesium. Professor Puri recommends you get these from a diet rich

in sources of these vitamins and minerals, as detailed in the book,

but says that taking them in supplement form if there are problems

with the dietary approach is better than missing out on them

altogether.

The intake of linoleic acid in the Western diet has increased

exponentially over the past half century. Since this fatty acid

competes with EPA for delta-6-desaturase it is important to reduce

intake. Virtually all oils contain high amounts (details given on

page 118) with two of the worst being sunflower and safflower oils,

which we commonly use for cooking. Change to pure virgin olive oil,

which has the lowest linoleic acid content, only 9%. Avoid fried

food if possible, and if you must fry use olive oil. Another fat it

is very important to avoid is trans fat, found in margarine and

anything that has ¡¥hydrogenated vegetable oil¡¦ on the label, such as

most pastries, biscuits, cakes, pies, sachets of drinking

chocolate. Trans fats not only inhibit the action of delta-6-

desaturase, but also are incorporated by body cells into their

membranes, making them inflexible and causing problems with signals

passing between cells, including brain cells. It is better to use

butter than margarine, particularly a brand such as Anchor, produced

from grass-fed cows, which means the butter is more likely to

contain some EPA.

Long-running stress levels, anxiety or fear can raise the levels of

stress hormones such as cortisol, which in turn inhibit the proper

functioning of the enzyme delta-6-desaturase. It is important to

reduce stress levels, even making major lifestyle changes if

necessary. Excess consumption of caffeine and alcohol, as well as

any smoking equally can have inhibitory effects on the enzyme.

Other forms of stress that can cause increases in cortisol are

listed: pain, infection, low blood sugar levels, starvation,

haemorrhage (bleeding). Wherever possible, these are to be

avoided. Suggested therapies to help reduce stress include CBT,

exercise (if you are up to it ¡V Professor Puri suggests walking,

slow cycling or swimming), Massage therapy, Aromatherapy,

Reflexology, Daoyin Tao and The Technique. Not mentioned

in the book, but worth mentioning here because members of South

Molton ME Support Group have found it of great benefit in this

respect, is EFT (Emotional Freedom Techniques).

Within the context of the whole treatment protocol, Professor Puri

also warns against and explains the deleterious effects of refined

sugar consumption and suggests alternatives. One of the ways sugar

can cause harm is the way in which it effects energy levels. ¡§After

the immediate rush that occurs following a meal or drink that

contains added sugar, your energy levels may actually feel as if

they have diminished, as your body tries hard to mop up all the

extra sugar by pouring out insulin into your blood stream. In order

to cope with the feeling of tiredness that this process engenders,

you may have another sugar-containing ¡¥food¡¦ or drink. And so the

cycle repeats itself day after day through endless cups of sweet tea

and coffee and large numbers of chocolate bars, sweets and biscuits

(laden with harmful trans fats)¡¨ page 121. Professor Puri strongly

recommends three square meals daily and if snacks are necessary,

provides suggestions for alternatives that are free from refined

sugar and trans fats.

Other benefits: Professor Puri has written similar books about the

treatment of both ADHD and depression using fatty acid supplements.

Aside from these two other conditions, some further benefits are

mentioned. It is explained how taking this combination of evening

primrose oil and EPA improves sleep, energy levels, concentration

and thinking, the cardiovascular system (there is special mention of

help with atrial fibrillation), body weight, skin, hair and nails.

The only side effect that might be considered adverse is a possible

slight loosening of the bowel contents. Actually though, this is

also a beneficial effect since toxins can be cleared more quickly

and have less time to be absorbed. Omega-3 fatty acids also have a

thinning effect on the blood, again beneficial in that it reduces

risk of DVT, heart attack and stroke, but if you are already taking

a blood-thinning drug such as warfarin or heparin, you must consult

your doctor before starting omega-3 supplementation so the doctor

can make any necessary adjustments to your drug prescription.

Full names for the fatty acids mentioned in abbreviated form

throughout

AA arachidonic acid, vitally important as a building block for

eicosanoids

DGLA dihomo-gamma-linolenic acid, vitally important as a building

block for eicosanoids

GLA gamma-linoleic acid

EPA eicosapentaenoic acid, vitally important as a building block

for eicosanoids, sleep mediators, interferons

DHA docosahexaenoic acid, important in maintaining the correct

structure of cell membranes

I hope you have found this synopsis helpful. I found the book

fascinating. Professor Puri clearly has great insight and

understanding for this illness and the people who live with it. He

does an outstanding job of explaining complex scientific matters in

a way that everyone can follow, which greatly added to my enjoyment

of the book and allowed me to feel confident writing this summary.

I cannot make a strong enough recommendation that you read this book

to discover all the detail that is missing here.

Jacqui Footman, South Molton ME Support Group,

jacquiftmn@...

February 2006

The printing of this summary for SWAME (South Western Alliance for

ME) groups is sponsored by Jacqui Footman, EFT Practitioner at

Molford House Surgery, 27 South Street, South Molton, North Devon,

EX36 4AA, www.MolfordHouseSurgery.co.uk 01769 574830

Jacqui would like to thank both Popplewell, DO, Proprietor

of Molford House Surgery, and Dr Westcott, of East Street

Surgery, South Molton, for all their help and support, firstly when

Jacqui¡¦s ME/CFS was diagnosed in 2003 and subsequently for the help

and encouragement that has enabled Jacqui over time not only to

discover the benefits of EFT treatment herself and to live well with

ME/CFS but also to complete her full practitioner training, to share

those benefits with others and to work part-time at Molford House.

For further information about EFT see

www.MolfordHouseSurgery.co.uk/eft1.htm and www.emofree.com.

For EFT practitioner registers see www.emofree.com and

www.MeridianTherapy.org (the AAMET website)

Please contact Jacqui 01769 572207 for information regarding

discounts available to members of SWAME Groups on purchases of

VegEPA.

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

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Guest guest

Hello Rosie

I can't keep up with all the posts at the moment so didn't know you'd

been discussing vegEPA. Sorry you are having a bad time with it. I

felt no changes either good or bad. The same went for Efamol which I

took for 6 months about 10 years ago; I haven't tried EyeQ. Prof Puri

says that the only side effects might be looser bowel movements or too

much blood thinning if a person was already taking something like

Warfarin but I know someone (with ME) who is very sensitive to all

medication or supplements and he can't take it without feelin the same

effects as when he tried SSRIs, ie hyper followed be a terrible crash.

I think that Prof P ought to know about his adverse effects and yours.

I haven't got an email address for him but he should be contactable

via either The MRI Unit, Imaging Sciences dept, MRC Clinical Sciences

Centre, Hammersmith Hospital, London; or The Lipid and Neuroscience

Group, Imperial College, London.

It is disheartening enough when something doesn't help but even worse

when a supplement that sounds so benign makes you feel bad. The only

encouraging thought that I have is that perhaps its antiviral

properties are causing a die-off type of reaction and that it is a

case of feeling worse before better ( though I bet you are sick of

hearing that one!).

I would be interested to hear what response you get from him. Hope you

feel better soon. Good luck

>

>

>

>

> Hi ,

>

> Another thought.. do you have any address (e-mail or otherwise) that I

> could perhaps put my questions to Prof Puri (I am in the UK). I find it

> very confusing that I am getting such an unpleasant response from

> something one would assume to be so benign.

>

> Rosie

>

>

>

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Guest guest

When you get your Glutathione levels up and you have cleared your candida

via coconut oil youll find the effects of Olive oil are surprising in

combination with OPC's.

Regards

CS

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Guest guest

Hi ,

Many thanks for your post.

I have managed to find an e-mail for Prof Puri and have sent one - but

not holding my breath waiting for a reply.

I think having tried the Eye Q for quite a while and waiting to 'feel

better' I might give a long relationship with the VegEPA a miss unless I

get something positive along those lines from Prof Puri.

It's interesting about your friend having much the same sensations as

using a SSRI - obviously something is going on in the brain, just some

of our brains don't much care for it ;-).

BW

Rosie

Hello Rosie

I can't keep up with all the posts at the moment so didn't know you'd

been discussing vegEPA. Sorry you are having a bad time with it. I

felt no changes either good or bad. The same went for Efamol which I

took for 6 months about 10 years ago; I haven't tried EyeQ. Prof Puri

says that the only side effects might be looser bowel movements or too

much blood thinning if a person was already taking something like

Warfarin but I know someone (with ME) who is very sensitive to all

medication or supplements and he can't take it without feelin the same

effects as when he tried SSRIs, ie hyper followed be a terrible crash.

I think that Prof P ought to know about his adverse effects and yours.

I haven't got an email address for him but he should be contactable

via either The MRI Unit, Imaging Sciences dept, MRC Clinical Sciences

Centre, Hammersmith Hospital, London; or The Lipid and Neuroscience

Group, Imperial College, London.

It is disheartening enough when something doesn't help but even worse

when a supplement that sounds so benign makes you feel bad. The only

encouraging thought that I have is that perhaps its antiviral

properties are causing a die-off type of reaction and that it is a

case of feeling worse before better ( though I bet you are sick of

hearing that one!).

I would be interested to hear what response you get from him. Hope you

feel better soon. Good luck

>

>

>

>

> Hi ,

>

> Another thought.. do you have any address (e-mail or otherwise) that I

> could perhaps put my questions to Prof Puri (I am in the UK). I find

it

> very confusing that I am getting such an unpleasant response from

> something one would assume to be so benign.

>

> Rosie

>

>

>

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

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Guest guest

Hello Rosie

I hope you get somewhere with Prof Puri. I wonder if he will suggest

that you have the RBC fatty acid test, if funds permit. I believe it

costs about £50 and am hoping my doctor will agree to pay for it. If

not I might myself; I am loath to take vegEPA longish term without

some indication that it might help this time but if I give up on it

altogether I might always have it in the back of my mind that it might

have helped eventually. But then so many " ME Treatments " are like that

- and so guilt inducing if we feel we have given up too early (and

there is always someone to tell you that you have).

If I do, and get anything interesting from, the fatty acid test I'll

let you know.

BW

>

>

> Hi ,

>

> Many thanks for your post.

>

> I have managed to find an e-mail for Prof Puri and have sent one - but

> not holding my breath waiting for a reply.

>

> I think having tried the Eye Q for quite a while and waiting to 'feel

> better' I might give a long relationship with the VegEPA a miss unless I

> get something positive along those lines from Prof Puri.

> It's interesting about your friend having much the same sensations as

> using a SSRI - obviously something is going on in the brain, just some

> of our brains don't much care for it ;-).

>

> BW

>

> Rosie

>

>

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Guest guest

Hi ,

Yes, I'd love to hear how you get on with that test, I think it could be

one I might ask Dr Myhill to consider if/when I see her next.

Like you I go through the mental convolutions of wondering whether I

have given a 'treatment' enough time (often in the face of some horrible

side effects)before throwing the towel in. I have had ME for decades,

but in the years since I was diagnosed in 1990, and therefore had some

rationale to try things, I've clocked up more than 60 attempts at

finding something to help. So far only 2 of those have been mildly

helpful (but not remotely curative) and they are acupuncture and

Concentrace drops, but I am well aware that they may do nothing for

another sufferer!

Rosie

Subject: Re: Lipid replacement therapy in CFS

Hello Rosie

I hope you get somewhere with Prof Puri. I wonder if he will suggest

that you have the RBC fatty acid test, if funds permit. I believe it

costs about £50 and am hoping my doctor will agree to pay for it. If

not I might myself; I am loath to take vegEPA longish term without

some indication that it might help this time but if I give up on it

altogether I might always have it in the back of my mind that it might

have helped eventually. But then so many " ME Treatments " are like that

- and so guilt inducing if we feel we have given up too early (and

there is always someone to tell you that you have).

If I do, and get anything interesting from, the fatty acid test I'll

let you know.

BW

>

>

> Hi ,

>

> Many thanks for your post.

>

> I have managed to find an e-mail for Prof Puri and have sent one - but

> not holding my breath waiting for a reply.

>

> I think having tried the Eye Q for quite a while and waiting to 'feel

> better' I might give a long relationship with the VegEPA a miss unless

I

> get something positive along those lines from Prof Puri.

> It's interesting about your friend having much the same sensations as

> using a SSRI - obviously something is going on in the brain, just some

> of our brains don't much care for it ;-).

>

> BW

>

> Rosie

>

>

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

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