Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Hi Patti & All, I've included below a short summary of Dr. Simpson's lecture in Berkeley, CA by a nurse who attended. Also, you can get his interview with Dr. Mazlen at Mazlen's radio transcript website. Dr. Simpson recommends the EFAMOL brand of EPO, and he says to try it for 6 wks. If no improvement, he recommends the drug Trental to help blood flow in the sluggish CFIDS system. I recently sent a red blood cell sample to him in NZ, & he will be sending me an electron microscope photo of my red blood cell structure. Steve in Northern California <>< Here is the summary: : Bobbie Sellers <bliss@...> Subject: Doctor in New Zealand etc. Hi Lance, You may have the best doctor(s) in the world in New Zealand for Myalgic Encephalomyopathy which is a better name for the problem that we face. The doctor is L.O. Simpson usually refered to as Les Simpson and he is currently lecturing in the USA. You can find out who is taking care of his practice while he is spreading the good word. Dr. Simpson points out that CFIDS is a poor name for the problem and believes that the CDC picked the name with no investigation of the literature. He gives lots of references to the literature about nearly every aspect of M.E. He advocates high doses of Oil of Evening Primrose Seeds, hydroxocobalimin(sic) aka B-12 injections, and Ginko Biloba, especially the Ginkoba brand. Myself and a very small group of people with CFS or maybe cfs concerns got to hear his lecture and slide show in Berkeley on Saturday May 8, 1999 in the University of California's Dwinelle Hall. I must say it was very enlightening. He used slides to show some statistics about M.E. sufferers and some with electron microscope pictures of fresh red blood cells and casts of capillaries supporting muscle tissue and the hypothalmus. The theory is that RBCs become more rigid and therefore less able to slip thru capillary wall to feed and oxygenate the tissue. The shape show that when certain forms are present in statically significant percentages that the flexibility of the RBC has been lost. Previously I had read on this list that Simpson ideas had to do with blood cell shape but that is a peripheral matter to the fact that, in M.E. blood cells, in response to fatigue products become less flexible and therefore less able to change shape to move thru the capillary walls. Very importantly it has been shown that standard blood buffering solution and anti-coagulants cannot perserve the shapes seen in fresh blood. This is because the anti-coagulants and buffers cause the cells to assume what has been long considered to be normal RBC shapes, i.e. discoid with a clear, depressed center. Simpson uses some other method of preserving RBC shapes in his attempts to diagnose M.E. by RBC shape distribution. Capillary diameter plays a large part in the ability of the RBCs to penetrate into the tissues of the body. (This may offer an explanation as to why atheletes can be suffering with CFIDS/M.E. and still be able to compete. In case you are unaware capillary size and number may respond positively to the proper exercises. In any event atheletes generally have larger capacity capillaries.) The B-12 injections have worked by experience in many cases. Same goes for the ginko biloba and EPO. I.E. both the symptoms get reduced in intensity and the blood cells become more flexible and the capillary walls more permeable. Administration of Oxygen does not help these problems though hyperbaric(high air pressure) chambers may help momentarily. One matter remains to be mentioned and that is that first and foremost you must have a through workup to make sure you don't have some other chronic illness with similar symptoms. Of course you could start the nutritional supplements of biloba and epo and maybe persuade a GP to give you the B-12 injections or a script for them so that you could give yourself the injections every 10 to 14 days depending on your personal response. If you were to get your physician to give you a B-12 shot [and only the hydroxycobalimin (sic) works which hard to find in the USA but much easier in your part of the world] and see what response you have. With either M.E. or pernicious anemia you should feel better very quickly. The EPO though will not be cheap because you need to take 8-12 capsules a day to get enough of the needed ingredient. Dr.Simpson feels that Neurally Mediated Hypotension is not really CFIDS or ME but a separate complaint. Of course one might well be able to have both I would suppose. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Steve Thanks so much for posting about the Kiwi from down under. I cannot help but think he is full of it but I am open minded to anything. I have been trying a couple of other brand but I will get the one he recommends as soon as I can. What is the charge to get blood tested? How do you send it? I have heard Kutapressing helps produce more red blood cells. Is this approach similar to the HEMEX/heparin approach. It would be interesting to see if there was a certain CFS profile that respond to this treatment. I have not even had the opportunity to hear from any that has used heparin. So even though I do not think but about out Kiwi friend -- I am a big fan of the NZ all blacks rugby team-- I will continue to give it a try. Thanks Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Steve & All, I forgot to mention that people are supposed to work up slowly to the dosage of EFAMOL & salmon oil (or cod liver oil). I was able to get the EFAMOL on sale at Sea coast Vitamins. It costs for $26.50 to get your red blood cells analyzed and they send a vial with a fixative. This is an objective test to show abnormalities in blood flow, which Dr. Simpson has been studying for least fifteen years. He has an article in Byron Hyde's book, " The Clinical & Scientific Basis of Myalgic Encephalomyelitis " . I don't know about the relationship to heparin treatment, but I think this whole area would have a relationship with Dr. Bell's investigation of low circulating blood volume in CFIDS patients. Steve in Northern California <>< wrote in part: Thanks so much for posting about the Kiwi from down under. I cannot help but think he is full of it but I am open minded to anything. I have been trying a couple of other brand but I will get the one he recommends as soon as I can. What is the charge to get blood tested? How do you send it? I have heard Kutapressing helps produce more red blood cells. Is this approach similar to the HEMEX/heparin approach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 That is very reasonable. I think I will give it a try. thanks Steve > Re: Simpson's protocol > > From: " Du Pre " <dupre@...> > > Steve & All, > I forgot to mention that people are supposed to work up slowly > to the dosage of EFAMOL & salmon oil (or cod liver oil). I was able > to get the EFAMOL on sale at Sea coast Vitamins. > It costs for $26.50 to get your red blood cells analyzed and they > send > a vial with a fixative. This is an objective test to show abnormalities > in > blood flow, which Dr. Simpson has been studying for least fifteen years. > He has an article in Byron Hyde's book, " The Clinical & Scientific Basis > of Myalgic Encephalomyelitis " . > I don't know about the relationship to heparin treatment, but I think > this whole area would have a relationship with Dr. Bell's investigation > of low circulating blood volume in CFIDS patients. > Steve in Northern California <>< > > wrote in part: > > Thanks so much for posting about the Kiwi from down under. I cannot help > but > think he is full of it but I am open minded to anything. I have been > trying > a couple of other brand but I will get the one he recommends as soon as I > can. What is the charge to get blood tested? How do you send it? I have > heard Kutapressing helps produce more red blood cells. Is this approach > similar to the HEMEX/heparin approach. > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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