Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 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 >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 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. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 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. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 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. >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 I would email the guys at Eye Q - they know quite alot in this field. Regards CS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 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. Quote Link to comment Share on other sites More sharing options...
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