T
Terri
Guest
Where can I find this? I tried to follow a link on Rich's article on the Phoenix Rising website but the link would not work.
Thanks!
Terri
Thanks!
Terri
K
_Kim_
Guest
Hi Terri,
Rich recently posted this on the B12 Thread.
Current version of the Simplified Protocol
Hope that helps,
Kim
Rich recently posted this on the B12 Thread.
Current version of the Simplified Protocol
Hope that helps,
Kim
Thanks, Kim. I didn't know where to start.
T
Terri
Guest
Thanks Kim. I looked everywhere and couldn't find it.
To Terri
Hi, Terri.
I appreciate your interest in the Simplified Treatment Approach, and thanks to Kim for steering you to my recent post about it.
If you want more information about the theoretical basis for this treatment approach and the experiences of others who have tried it, my papers and articles can be found in the files section of the Yahoo cfs_yasko group's website. Several of them are also posted on Cort's phoenix-cfs site.
The most recent of the papers is about a treatment study that was carried out on 30 women in Dr. Neil Nathan's medical practice. It worked out pretty well. We reported it at the most recent IACFS/ME conference in Reno last March.
Best regards,
Rich
Hi, Terri.
I appreciate your interest in the Simplified Treatment Approach, and thanks to Kim for steering you to my recent post about it.
If you want more information about the theoretical basis for this treatment approach and the experiences of others who have tried it, my papers and articles can be found in the files section of the Yahoo cfs_yasko group's website. Several of them are also posted on Cort's phoenix-cfs site.
The most recent of the papers is about a treatment study that was carried out on 30 women in Dr. Neil Nathan's medical practice. It worked out pretty well. We reported it at the most recent IACFS/ME conference in Reno last March.
Best regards,
Rich
T
Terri
Guest
Thanks Rich, I'll check that out. I'm still trying to understand it all but the Methylation Cycle and correcting the deficiencies seems to make a lot of sense to me.
I have a lot to learn!
Terri
I have a lot to learn!
Terri
S
Suzy
Guest
Rich, your study
Hi Rich,
I just had another look at your study. The increases in GSH are impressive.
I have been wondering if this treatment would have impact onother antioxidants. It seems someof them are quite specific, for example, coQ10 is fat soluble and important in the mitochondria. Do you feel it's equally important to test and treat that oen , for example.
Also, SOD depends on zinc,copper,manganese so would it be just as important to test its function ?
Suzy
Hi Rich,
I just had another look at your study. The increases in GSH are impressive.
I have been wondering if this treatment would have impact onother antioxidants. It seems someof them are quite specific, for example, coQ10 is fat soluble and important in the mitochondria. Do you feel it's equally important to test and treat that oen , for example.
Also, SOD depends on zinc,copper,manganese so would it be just as important to test its function ?
Suzy
To dsdmom re: folate forms
Hi, dsdmom.
They both do contain 5-methyl THF. Actifolate also contains some folinic acid and some folic acid.
Originally, the protocol included Intrinsi/B12/folate, which contained this same range of folates. This treatment was extracted from Amy Yasko's full treatment program, and I just adopted what she was using. That's what Dr. Nathan and I used in the clinical treatment study. Then Metagenics changed the formulation of Intrinsi/B12/folate, so that it no longer contains folinic acid. That's the reason I revised the protocol to use Actifolate instead of Intrinsi/B12/folate. I wanted to keep the protocol similar in terms of the folates so that people starting the protocol could still rely on the treatment study.
If I were totally starting over at this point, I would probably use a pure folinic acid supplement in place of Actifolate, to eliminate the folic acid, which some people have difficulty chemically reducing to the active folates. Then the protocol would contain only 5-methyl THF and folinic in terms of folate forms. I think this would still perform as well as the original protocol, and maybe better, but it would be a bigger departure from the protocol we tested, so it was a compromise.
I think there is value in including folinic acid in addition to 5-methyl THF, because it can be converted to other forms of folates, which do other jobs. Until the methylation cycle comes up, 5-methyl THF may not convert to THF very rapidly, and that could limit the other uses of folate. So I favor using folinic in addition. I might note that the DAN! project uses folinic acid for treating autism (which I believe has the same biochemical core issue as CFS). I haven't followed them for the past couple of years, but they weren't using 5-methyl THF three years ago, when I proposed the protocol for CFS, while Amy Yasko was. It made sense to me to use both active forms of folate.
Best regards,
Rich
Hi, dsdmom.
They both do contain 5-methyl THF. Actifolate also contains some folinic acid and some folic acid.
Originally, the protocol included Intrinsi/B12/folate, which contained this same range of folates. This treatment was extracted from Amy Yasko's full treatment program, and I just adopted what she was using. That's what Dr. Nathan and I used in the clinical treatment study. Then Metagenics changed the formulation of Intrinsi/B12/folate, so that it no longer contains folinic acid. That's the reason I revised the protocol to use Actifolate instead of Intrinsi/B12/folate. I wanted to keep the protocol similar in terms of the folates so that people starting the protocol could still rely on the treatment study.
If I were totally starting over at this point, I would probably use a pure folinic acid supplement in place of Actifolate, to eliminate the folic acid, which some people have difficulty chemically reducing to the active folates. Then the protocol would contain only 5-methyl THF and folinic in terms of folate forms. I think this would still perform as well as the original protocol, and maybe better, but it would be a bigger departure from the protocol we tested, so it was a compromise.
I think there is value in including folinic acid in addition to 5-methyl THF, because it can be converted to other forms of folates, which do other jobs. Until the methylation cycle comes up, 5-methyl THF may not convert to THF very rapidly, and that could limit the other uses of folate. So I favor using folinic in addition. I might note that the DAN! project uses folinic acid for treating autism (which I believe has the same biochemical core issue as CFS). I haven't followed them for the past couple of years, but they weren't using 5-methyl THF three years ago, when I proposed the protocol for CFS, while Amy Yasko was. It made sense to me to use both active forms of folate.
Best regards,
Rich
To Suzy re: Co Q10 and SOD
Hi, Suzy.
Yes, this treatment will impact other antioxidants. The multi that is part of the protocol supplies several antioxidants directly. Also, glutathione is at the basis of the body's antioxidant enzyme system and is part of what Prof. Lester Packer has called the "antioxidant network." As such, it recycles some of the other antioxidants, including vitamins C and E. So when the treatment brings glutathione up, it also helps the other antioxidants.
Co Q10 is low in PWCs, and I think the reason is that methylation is required for its synthesis (that's known). As the methylation cycle function is improved, the body should be able to make more Co Q10.
Dr. Myhill does recommend supplementing with Co Q10 if there is mito dysfunction, which I think is present in all PWCs, based on quite a few lab tests I've seen as well as on the biochemical theory associated with my hypothesis for the pathogenesis of CFS. On the other hand, Dr. Cheney is now recommending against supplementing Co Q10. So I guess that's a little controversial at this point. But it should come up automatically when the methylation improves.
There is some controversy over whether downstream deficiencies should be treated initially, or whether only the root issue should be treated, and the body should be allowed to correct the downstream deficiencies more naturally. The logic for the latter is that perhaps the body is set up to lower some of these downstream substances for good reasons, and if they are artificially raised before the root issue is corrected, it could do more harm than good. This is Dr. Cheney's position, and I share some of his thinking on this, though he and I have not yet agreed upon what the root issue is.
Probably Dr. Teitelbaum most epitomizes the other view on this, as he advocates treating a number of downstream issues. He does agree with me that the methylation issue needs to be dealt with, though. I think he sees it as one more thing that should be added to his treatment of the downstream issues.
Dr. Myhill has also added methylation treatment to her protocol. I don't think she and Dr. Howard have accepted my hypothesis that the methylation cycle block and glutathione depletion are what initially cause the mito dysfunction, but they do measure glutathione, and she does treat the methylation cycle as part of her overall protocol.
There are a few other physicians to my knowledge who have added methylation treatment to their protocols, and they have told me that they think it is an important component.
Some PWCs are deficient in the minerals needed by the SOD enzymes. I do think it's a good idea to test for the mineral levels. I think a blood test is best, though Dr. Yasko uses a urine test, I think because she primarily works with small children who have autism, and spot urine tests can be run easily by a parent at home. Dr. Howard at Acumen Lab offers an SOD enzyme activity test, and I think that's a good test, too, although if the activity is O.K., that suggests that the mineral levels are O.K., but if not, you won't know which mineral is deficient. Note that there is no copper in the multi that comes from Amy Yasko, so it will have to be supplemented separately if it is low. She has left it out over concern that it can promote oxidative stress if there is too much. I'm not convinced that this is true, but that was her reasoning for leaving it out.
Best regards,
Rich
Hi, Suzy.
Yes, this treatment will impact other antioxidants. The multi that is part of the protocol supplies several antioxidants directly. Also, glutathione is at the basis of the body's antioxidant enzyme system and is part of what Prof. Lester Packer has called the "antioxidant network." As such, it recycles some of the other antioxidants, including vitamins C and E. So when the treatment brings glutathione up, it also helps the other antioxidants.
Co Q10 is low in PWCs, and I think the reason is that methylation is required for its synthesis (that's known). As the methylation cycle function is improved, the body should be able to make more Co Q10.
Dr. Myhill does recommend supplementing with Co Q10 if there is mito dysfunction, which I think is present in all PWCs, based on quite a few lab tests I've seen as well as on the biochemical theory associated with my hypothesis for the pathogenesis of CFS. On the other hand, Dr. Cheney is now recommending against supplementing Co Q10. So I guess that's a little controversial at this point. But it should come up automatically when the methylation improves.
There is some controversy over whether downstream deficiencies should be treated initially, or whether only the root issue should be treated, and the body should be allowed to correct the downstream deficiencies more naturally. The logic for the latter is that perhaps the body is set up to lower some of these downstream substances for good reasons, and if they are artificially raised before the root issue is corrected, it could do more harm than good. This is Dr. Cheney's position, and I share some of his thinking on this, though he and I have not yet agreed upon what the root issue is.
Probably Dr. Teitelbaum most epitomizes the other view on this, as he advocates treating a number of downstream issues. He does agree with me that the methylation issue needs to be dealt with, though. I think he sees it as one more thing that should be added to his treatment of the downstream issues.
Dr. Myhill has also added methylation treatment to her protocol. I don't think she and Dr. Howard have accepted my hypothesis that the methylation cycle block and glutathione depletion are what initially cause the mito dysfunction, but they do measure glutathione, and she does treat the methylation cycle as part of her overall protocol.
There are a few other physicians to my knowledge who have added methylation treatment to their protocols, and they have told me that they think it is an important component.
Some PWCs are deficient in the minerals needed by the SOD enzymes. I do think it's a good idea to test for the mineral levels. I think a blood test is best, though Dr. Yasko uses a urine test, I think because she primarily works with small children who have autism, and spot urine tests can be run easily by a parent at home. Dr. Howard at Acumen Lab offers an SOD enzyme activity test, and I think that's a good test, too, although if the activity is O.K., that suggests that the mineral levels are O.K., but if not, you won't know which mineral is deficient. Note that there is no copper in the multi that comes from Amy Yasko, so it will have to be supplemented separately if it is low. She has left it out over concern that it can promote oxidative stress if there is too much. I'm not convinced that this is true, but that was her reasoning for leaving it out.
Best regards,
Rich
Marylib
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Marylib
Senior Member
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Hello. I am new here and don't really know much about many of the discussion topics! I just discovered this board and it's fantastic. Anyway I do try to keep up in some way with treatments/advice etc but it's hard to take it all in. I am on Dr Myhill's protocol and have been on it for about 4 months now, with quite dramatic good effects! But now I worry that I might be treating the symptoms but not the cause, with Q10 supplementation etc (my levels tested VERY low and that supplement has definitely helped a lot) - I take L-Glutathione. Is this good or bad? Is there anything else I should be doing? Myhill has not talked about the methylation cycle to me yet but I have seen her handout about it. I think she only tries that stuff in her patients who are not getting better...? That is what it seemed like to me. I just started thyroxine too and that seems to be helping. I have been ill for 2 years (although I was first diagnosed with a mild case after viral infection almost 10 years ago - it almost completely went away so I thought I was fine until I became severely ill 2 years ago). I was getting worse and worse until I got Myhill as a doctor - was almost bedbound. Now I have a wheelchair, I hardly get chest pain or headaches anymore, I can read again in small amounts and watch TV... my life has changed and it's only been 2 or 3 months since I started daily B12 and magnesium injections. Anyway I just wonder whether Rich thinks this protocol is OK. Thanks in advance for any help!! 
Mia
Mia
Sunday
Senior Member
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- 733
Thanks Rich for helping me understand more about CoQ10, folinic acid v. folic acid, and the methylation cycle in general. This is complicated stuff for those of us with little science background; it helps to get it in bite-size chunks. I also appreciate your views on "downstream" vs. "upstream" treatments, and the ideas behind them. I always learn something when I read your posts.
Hi, all.
In case anyone here is interested in reading the report on the clinical study of the simplified treatment approach that was conducted in Dr. Neil Nathan's practice, here is the link for it:
http://aboutmecfs.org/Trt/TrtMethylStudy09.pdf
This study showed significant improvements both in the lab parameters that were tracked and in the self-evaluation of symptoms by the people in the study.
Best regards,
Rich
In case anyone here is interested in reading the report on the clinical study of the simplified treatment approach that was conducted in Dr. Neil Nathan's practice, here is the link for it:
http://aboutmecfs.org/Trt/TrtMethylStudy09.pdf
This study showed significant improvements both in the lab parameters that were tracked and in the self-evaluation of symptoms by the people in the study.
Best regards,
Rich
Hello. I am new here and don't really know much about many of the discussion topics! I just discovered this board and it's fantastic. Anyway I do try to keep up in some way with treatments/advice etc but it's hard to take it all in. I am on Dr Myhill's protocol and have been on it for about 4 months now, with quite dramatic good effects! But now I worry that I might be treating the symptoms but not the cause, with Q10 supplementation etc (my levels tested VERY low and that supplement has definitely helped a lot) - I take L-Glutathione. Is this good or bad? Is there anything else I should be doing? Myhill has not talked about the methylation cycle to me yet but I have seen her handout about it. I think she only tries that stuff in her patients who are not getting better...? That is what it seemed like to me. I just started thyroxine too and that seems to be helping. I have been ill for 2 years (although I was first diagnosed with a mild case after viral infection almost 10 years ago - it almost completely went away so I thought I was fine until I became severely ill 2 years ago). I was getting worse and worse until I got Myhill as a doctor - was almost bedbound. Now I have a wheelchair, I hardly get chest pain or headaches anymore, I can read again in small amounts and watch TV... my life has changed and it's only been 2 or 3 months since I started daily B12 and magnesium injections. Anyway I just wonder whether Rich thinks this protocol is OK. Thanks in advance for any help!!
Hi, Mia.
I'm glad to hear that Dr. Myhill's treatment has been helping you so much. I have interacted with her for several years by email, and we have collaborated on reviewing evidence for mitochondrial dysfunction in CFS. Together with Dr. Howard at Acumen, Prof. Martin Pall, and Dr. Paul Cheney, we have championed the importance of mito dysfunction in CFS for quite a few years.
I am a researcher, not a licensed physician, and I defer to the physicians in matters related to individual treatment. Dr. Myhill has reported considerable success with her treatments, and I have heard the same from quite a few of her patients. Some patients respond well to supplementation with coenzyme Q-10, glutathione, and/or thyroxine, while others do not. I'm not yet able to predict which patients will respond which way to these supplements. I do believe that the partial methylation cycle block is fundamental to most cases of CFS, and I advocate testing for it and treating it if it is found to be present. I realize that Dr. Myhill's approach to treatment of the methylation cycle is to use it as an auxiliary treatment, depending on the case, and I respect her decision on this, but based on the evidence I've seen as well as biochemical theory, I think that the partial methylation cycle block is nearly universal in CFS patients, and I favor treatment of it as a mainstay of overall CFS treatment protocols. Hopefully as more experience is gained, we will be able to clarify this issue further.
Best regards,
Rich
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Hi Rich - thanks for your response. That is very helpful. I am definitely doing much better on the Q10 + glutathione etc and I just started thyroxine and think it's helping even more. My life really has totally changed in 4 months. I do try to understand everything I am taking but I confess not to understanding much about the methylation cycle! Is it that I should be taking extra stuff? Is there something quite simple I can take in addition or is it a whole different protocol? I have a phone appointment with Dr Myhill in a few days' time and I could ask her for some extra medications/supplements. I know I am probably being dense - brain fog! What things should I be taking in addition?
Anyway thanks so much for your help. Your research is very interesting! I am doing so well with every new thing I add (I built up the supplements + elements of the protocol so slowly) that I am now eager to add more things!
Take care.
Anyway thanks so much for your help. Your research is very interesting! I am doing so well with every new thing I add (I built up the supplements + elements of the protocol so slowly) that I am now eager to add more things!
Take care.
Hi Rich - thanks for your response. That is very helpful. I am definitely doing much better on the Q10 + glutathione etc and I just started thyroxine and think it's helping even more. My life really has totally changed in 4 months. I do try to understand everything I am taking but I confess not to understanding much about the methylation cycle! Is it that I should be taking extra stuff? Is there something quite simple I can take in addition or is it a whole different protocol? I have a phone appointment with Dr Myhill in a few days' time and I could ask her for some extra medications/supplements. I know I am probably being dense - brain fog! What things should I be taking in addition?
Anyway thanks so much for your help. Your research is very interesting! I am doing so well with every new thing I add (I built up the supplements + elements of the protocol so slowly) that I am now eager to add more things!
Take care.
Hi, Mia.
Dr. Myhill has a protocol for supporting the methylation cycle. It's a little different from the one I've suggested, but the essence is the same. The most important additional things are forms of folate and vitamin B12 that are readily used by the body. I suggest that you ask her about her methylation protocol. And if you think of it and have the time, please tell her hello from me!
Best regards,
Rich
Sunday
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Rich, earlier on this thread you were talking about copper supplements, and a controversy over whether you can take too much. Can you go into that a little? And are there recognizable symptoms of too much copper? or too little?