Re: Exciting news! Cohort trying the simplified GD-MCB treatment growing fast

[Guest guest]

We like you, too, Rich. With the exception of a few of the ingredients in the supplements you mentioned that I don't think I've heard of (i.e. Phosphatidyl Serine Complex), I've taken pretty much everything you've listed for extended periods of time. At various points in time, I was taking more than 30 supplements a day based on the research done by a man named , who was quite an expert on supplements, and for a long time touted a nutritional cure for many of our "autoimmune" illnesses. I religiously took most of the ones you've listed below, even molybdemun. I also avoided copper & calcium as you suggest. Some people, hyperthyroids in particular, needed to supplement with copper to slow down their thyroids, so protocols definitely needed to be customized according to the individual. Despite the initial enthusiasm of many people who tried this approach, I can't say that anyone

ever got cured. Yes, some symptoms were reduced in severity, but I can't recall anyone, other than himself, who was cured. And while suffered from many things like MCS, food intolerance & hyperthyroidism, which he overcame, he never actually dealt with the severe fatigue that most pwcs have. Anyway, I'm glad people are giving it a try and I do hope people benefit by seeing a reduction of symptoms. I'd be ecstatic if they're cured, but you'll have to put up with my skepticism for now. Unless perhaps the Phosphatidyl Serine Complex is the magic ingredient, I just don't buy that it's going to cure people. And I kind of hope that if they don't see lasting results within 6 months or so, that they move on. I wasted far too much time & money on supplements, IMO, when I could have actually been addressing my infection. If it works, great, but I'd also be very wary of ecstatic reports in the beginning.

This happens with almost every treatment protocol. The key is to see where these people are a year from now. Thanks for the report, though, and best of luck. I sincerely hope that all of your hard work pays off with some kind of new understanding. penny rvankonynen <richvank@...> wrote: Hi, all.I realise that not everyone here is ecstatic about my approach to treating CFS, but I

like you nevertheless, and I don't want anyone to be left out. So here's the big news:As of this afternoon, the number of PWCs who have notified me that they are trying the new simplified treatment approach based on the glutathione depletion--methylation cycle block hypothesis for CFS has reached twenty-four, and several more have informed me that they are planning to start at various times in the future. This has developed from a standing start in late January, 2007. Most of these people have been on it for only a few weeks or a few days, the longest being a little over three months now. Because the pioneers on this treatment have been posting such good early reports on CFS internet boards (especially the ImmuneSupport FM/CFS board), there appears to be an avalanche effect going on in terms of new people starting it over the past few days. I find it quite exciting! One of the first things

several have noticed is better sleep. There are also reports of memory returning, less pain, more energy, brain fog lifting, improved thyroid function, vulvodynia going away, and more. I think we are finally hitting the root cause in the biochemistry for many PWCs. I don't yet know whether this treatment will work for "pure fibromyalgia." I haven't been pushing it for that, because I don't know how FM develops at the biochemical level. I do think I understand how many cases of CFS develop now, though, and I believe that the science is in place to support this treatment for CFS. I presented it in a poster paper at the IACFS conference in January. As many of you may know, I've been trying to figure out CFS for over ten years. Thanks to the work of others, including Dr. Cheney and the autism people, I think we are finally there, at least for a major subset, and perhaps for the majority of cases.

Is there a downside to this treatment? Yes, it doesn't bring a cure overnight, and there is unavoidable detox to go through, because the body accumulates toxins and infections while a person has CFS. Their detox system and their immune system are not operating properly during this time. And the rates of excretion of toxins from the body are limited. So the more that has accumulated, the longer it will likely take to work off the backlog and clear it all out, so that the person can be healthy again. But I'm convinced that it will happen, if the person hangs in there with the treatment. So far very few who have started this treatment have quit. Several find that they need to take breaks to let the detox settle down to a tolerable level, but because they begin experiencing improvement in CFS symptoms almost immediately, they are motivated to continue. For those interested in the details of this

treatment and its history, here's a reprint of something I posted on the ImmuneSupport board: Simplified Treatment Approach--Current Version 05/22/07 09:58 AM Here is the current version of the simplified treatment approach based on the glutathione depletion--methylation cycle block hypothesis. All the supplements can be obtained from http://www.holisticheal.com, or you can obtain them elsewhere. The cost is a little over $2.00 per day for all the supplements at the dosages suggested below. These supplements and dosages have been selected by Dr. Amy Yasko as part of her complete treatment approach, as described in her book "The Puzzle of Autism." Substitutions or changes in dosages may not have the same effect as the combination of supplements and dosages suggested. It's not wise to raise the dosages, at least for a few weeks, because this can

bring on detox at an intensity that is difficult to tolerate. Please be patient and take it easy! Here are the five supplements: 1. one-quarter tablet (200 micrograms) Folapro (Metagenics) 2. one-quarter tablet Intrinsic B12/folate (Metagenics) 3. (up to) 2 tablets (It's best to start with ¼ tablet and work up as tolerated) Complete Vitamin and Neurological Health Formula (Holistic Health Consultants) 4. one softgel capsule Phosphatidyl Serine Complex 5. one sublingual lozenge Perque B12 The first two supplement tablets can be difficult to break into quarters. An alternative is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife and a flat surface. The powders can be taken orally with water, with or without food, and do not taste bad. Since some questions have been asked about what ingredients are essential, and since some of

the people appear to be taking augmented versions of the simplified GD-MCB treatment approach that I wrote about in my January treatment paper, I want to give you some history and some comments about that to help you with your own choices about what to take. There's nothing proprietary about what I've written. I would just like to see people get healthy. I have been trying to figure out CFS for about 10 years, since a friend of my wife and myself developed it and wasn't given any hope by her doctor. I started studying biochemistry and physiology, joined some CFS internet lists, started using PubMed to study the published literature, went to the conferences, got Dr. Cheney's tapes, etc. In 1999 I picked up on Dr. Cheney's observation that many of his patients were depleted in glutathione. When I learned of all the things that glutathione normally does, and saw that many of these tied in with the symptoms of

CFS, I became convinced that this is a fairly fundamental aspect of the pathophysiology of CFS. So for several years I encouraged PWCs to build their glutathione by various means. This helped quite a few, but it was not a cure for most. It was just a temporary help. Some couldn't tolerate it at all. In the fall of 2004 I reported this at the AACFS conference in Madison, WI. You can find that poster paper at the phoenix-cfs.com site, under research. Then in late 2004, a paper came out by S. Jill et al. on autism. I learned for the first time that glutathione was depleted in autistic kids, and that this was tied to problem earlier in the sulfur metabolism, in the methylation cycle. This was a big BINGO for me. It looked as though the same thing was happening in CFS, and now I knew why PWCs could not build up their glutathione levels on a permanent basis by the methods I had been advocating. I went

to the Long Beach DAN! conference and learned more about autism, and I became more convinced that we were dealing with the same mechanism. I started suggesting some DAN! treatments to the PWCs, using the Pangborn and Baker book, which is an excellent background book on this, by the way, and I recommend it. Well, the people who tried this felt somewhat better at first, but then things turned south for them. Meanwhile, I learned about Amy Yasko's approach in autism, and I decided that I liked it better, because it started at the genetic level, and built the biochemistry on top of that, dealing with people individually based on their genetic variations. So about a year ago I started encouraging PWCs to try Amy's approach. Amy's approach is not simple, easy, quick or cheap, and it has not been easy for PWCs to do it, but the people doing it have experienced benefit and are continuing with it. For the 2007

IACFS conference, I decided to submit another paper, this time giving the rationale for a methylation block in CFS, connected to the glutathione depletion. It was accepted, but again only as a poster paper, so I printed up a lot of copies of it and did a personal sales job on as many people at the conference as I was able. One clinician asked me to write up a description of treatment based on this hypothesis. Later in January I emailed him a treatment writeup, which is what is on the internet (also at www.phoenix-cfs.com, under Research). In writing this, I knew that the full Yasko treatment approach is probably not going to be practical for most clinicians. Amy has written me that she has not been able to interest many in doing what it takes to get up to speed on it and to apply it in individual cases. They just don't have the time, and frankly, many have told me that they do not find biochemistry very easy to

assimilate. So I decided to try including a simpler approach in addition to describing the full Yasko treatment approach. In doing so, I asked Trina in the cfs_yasko internet group for help, since she is very knowledgeable about the Yasko treatment approach and is using it herself. She pointed out some problems with what I had in my draft, and then suggested a better approach, which I adopted substantially. The simplified approach I put in my treatment article is essentilly what Trina suggested, because it made a lot of sense to me. So I must give the credit for this to her. She also suggested including nucleotides, but I left them out because there are some in the complete multi (now called the General multi). O.K., so now what do each of the ingredients do, and how important is each one? FolaPro--This is in there because a lot of PWCs have a SNP in their MTHFR enzyme that affects the

production of 5-methyltetrahydrofolate, which is the same as FolaPro. This form of folate is the one used by the methionine synthase enzyme, and that's the enzyme that appears to be blocked in many or most cases of CFS. If a person had their genetics characterized, as in the full Yasko approach, they would know for sure whether they needed this one, but in the simplified approach we just suggest giving to everyone. Intrinsic B12/folate--This one has 3 forms of folate--FolaPro, folinic acid and folic acid. It also has some cyano-B12 and some intrinsic factor as well as some other things. The folinic is helpful because some people can't use ordinary folic acid well, as a result of genetic issues. Also, this helps to supply forms of folate that will make up for the low tetrahydrofolate resulting from the block in methionine synthase. This enzyme normally converts 5- methytetrahydrofolate to

tetrahydrofolate, which is needed in other reactions. This supplement also has some intrinsic factor and some ordinary B12 supplement to help those who have a type of pernicious anemia that results from low production of intrinsic factor in the stomach and which prevents them from absorbing B12 in the gut. B12 is also needed by methionine synthase, in the form of methylcobalamin, but this supplement has cyanocobalamin, which must be converted in the body by glutathione and SAMe to form methylcobalamin. As glutathione and SAMe come up, this should become more effective. Complete vitamin and ultra-antioxidant (now called the General Vitamin and Neurological Health Formula)--This is Amy Yasko's basic high- potency general nutritional supplement. This is kind of a foundation for the biochemistry in general. However, I think it's better for PWCs than other general supplements, because it has particular things

needed for dealing with a methylation cycle block, including some TMG and sulfur metabolism supplements as well as nucleotides. It is also high on magnesium and low on calcium, and has no iron or copper. So I don't think other general supplements do everything this one does, and I think it's important in the treatment. The TMG helps to get the shortcut pathway in the methylation cycle going, and that helps to build SAMe, which is needed to get the methionine synthase reaction going. The nucleotides will help to supply RNA and DNA for new cells until the folate cycle is working right again. Phosphatidylserine complex--This has various phosphatidyls in it, which will help repair damaged membranes, including those in cells of the brain and nervous system. It also has some choline, which can be converted to TMG (betaine) in the body, to help start the shortcut pathway. Perque B12--This is a hefty dose of

sublingual hydroxocobalamin. As I said above, B12 is needed to get methionine synthase going. Methylcobalamin is actually the form needed, but some people cannot tolerate it for genetic reasons, and I'm also concerned that people with high body burdens of mercury could move mercury into the brain if they take too much methylcobalamin. Methylcobalamin is the only substance in biological systems that can methylate mercury, and methylmercury can cross the blood-brain barrier. This supplement is sublingual to compensate for poor B12 absorption in the gut of many people. There are also two others that were in the earlier version of the simplified approach: SAMe--This is normally part of the methylation cycle. Depending on genetic variations (SNPs or polymorphisms) some people can't tolerate much of this, and some need more. The dosage is a compromise. If people can't tolerate this, they should leave it out,

because stimulating the shortcut pathway, using TMG and choline in the other supplements) will probably make enough for them. Methylation Support Nutriswitch Formula--This is a mixture of RNAs that is designed to help the methylation cycle. It is somewhat expensive, and is not essential, but is helpful and worthwhile if people can afford it. I do think that the forms of folate and B12 are probably essential, because they go after the basic problem in CFS, in my opinion. I think the General supplement is important, and, and I think that some way to stimulate the shortcut is important, also. SAMe will help some people but perhaps not be tolerated by others, and if not, can be left out. The Methylation Support formula is helpful, but could be left out. Adding glutathione support will help some people, as will adding molybdenum. As more things are added, though, we are moving toward the full Yasko

approach, which is fine, but it is more complicated and expensive, too. Maybe we should view this simplified approach as the front door to the full Yasko approach. It might work fine by itself for some people, but for others, maybe they should look at The Puzzle of Autism, sold on www.Amazon.com, to see what else there might help them. If the simplified approach seems to help to some degree, and it catches your attention for that reason, but it still doesn't do the whole job for you, then you could look further at the the full Yasko treatment. At least then you would have some reason to dig into it. Otherwise, it looks pretty daunting to a lot of PWCs. Rich

[Guest guest]

Hi, Penny.

Thank you!

I think there is some " magic " in taking this set of supplements

together, since they complement each other in encouraging the

methylation cycle to get going again. The particular forms of folate

and B12 seem to be important, because genetic problems prevent some

people from using the garden variety folic acid and cyanocobalamin.

And Amy Yasko's multi has some special things in it for this

application, too. I know that these supplements sound pretty

mundane, but the essence seems to be in the combination and the

details.

I agree that it is too early to reach big conclusions, but I am very

hopeful, both because the biochemistry is in place to point toward

the root issue, which these supplements address, and because of the

reports coming from these people about how the various CFS symptoms

are falling away. I think you might be amazed to read some of their

reports. They're on the ImmuneSupport FM/CFS board. Anyway, time

will tell, and I'm glad you like me.(:-)

Rich

> Hi, all.

>

> I realise that not everyone here is ecstatic about my approach to

> treating CFS, but I like you nevertheless, and I don't want anyone

to

> be left out. So here's the big news:

>

> As of this afternoon, the number of PWCs who have notified me that

> they are trying the new simplified treatment approach based on the

> glutathione depletion--methylation cycle block hypothesis for CFS

has

> reached twenty-four, and several more have informed me that they

are

> planning to start at various times in the future.

>

> This has developed from a standing start in late January, 2007.

Most

> of these people

> have been on it for only a few weeks or a few days, the longest

being

> a little over three months now. Because the pioneers on this

> treatment have been posting such good early reports on CFS internet

> boards (especially the ImmuneSupport FM/CFS board), there appears

to

> be an avalanche effect going on in terms of new people starting it

> over

> the past few days. I find it quite exciting!

>

> One of the first things several have noticed is better sleep. There

> are also reports of memory returning, less pain, more energy, brain

> fog lifting, improved thyroid function, vulvodynia going away, and

> more. I think we are finally hitting the root cause in the

> biochemistry for many PWCs.

>

> I don't yet know whether this treatment will work for " pure

> fibromyalgia. " I haven't been pushing it for that, because I don't

> know how FM develops at the biochemical level. I do think I

> understand how many cases of CFS develop now, though, and I believe

> that the science is in place to support this treatment for CFS. I

> presented

> it in a poster paper at the IACFS conference in January.

>

> As many of you may know, I've been trying to figure out CFS for

over

> ten

> years. Thanks to the work of others, including Dr. Cheney and the

> autism people, I think we are finally there, at least for a major

> subset, and perhaps for the majority of cases.

>

> Is there a downside to this treatment? Yes, it doesn't bring a cure

> overnight, and there is unavoidable detox to go through, because

the

> body accumulates toxins and infections while a person has CFS.

Their

> detox system and their immune system are not operating properly

> during

> this time. And the rates of excretion of toxins from the body are

> limited. So

> the more that has accumulated, the longer it will likely take to

work

> off the backlog and clear it all out, so that the person can be

> healthy again. But I'm convinced that it will happen, if the person

> hangs in there with the treatment.

>

> So far very few who have started this treatment have quit. Several

> find that they need to take breaks to let the detox settle down to

a

> tolerable level, but because they begin experiencing improvement in

> CFS

> symptoms almost immediately, they are motivated to continue.

>

> For those interested in the details of this treatment and its

> history, here's a reprint of something I posted on the

ImmuneSupport

> board:

>

> Simplified Treatment Approach--Current Version 05/22/07 09:58 AM

>

> Here is the current version of the simplified treatment approach

> based on the glutathione depletion--methylation cycle block

> hypothesis.

>

> All the supplements can be obtained from

http://www.holisticheal.com,

> or you can obtain them elsewhere. The cost is a little over $2.00

> per day for all the supplements at the dosages suggested below.

>

> These supplements and dosages have been selected by Dr. Amy Yasko

as

> part of her complete treatment approach, as described in her

> book " The Puzzle of Autism. " Substitutions or changes in dosages

may

> not have the same effect as the combination of supplements and

> dosages suggested. It's not wise to raise the dosages, at least for

> a few weeks, because this can bring on detox at an intensity that

is

> difficult to tolerate. Please be patient and take it easy!

>

> Here are the five supplements:

>

> 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

>

> 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

>

> 3. (up to) 2 tablets (It's best to start with ¼ tablet and work up

as

> tolerated) Complete Vitamin and Neurological Health Formula

(Holistic

> Health Consultants)

>

> 4. one softgel capsule Phosphatidyl Serine Complex

>

> 5. one sublingual lozenge Perque B12

>

> The first two supplement tablets can be difficult to break into

> quarters. An alternative is to crush them into powders, mix the

> powders together, and divide the powders into quarters using a

knife

> and a flat surface. The powders can be taken orally with water,

with

> or without food, and do not taste bad.

>

> Since some questions have been asked about what ingredients are

> essential, and since some of the people appear to be taking

> augmented versions of the simplified GD-MCB treatment approach that

I

> wrote about in my January treatment paper, I want to give you some

> history and some comments about that to help you with your own

> choices about what to take. There's nothing proprietary about what

> I've written. I would just like to see people get healthy.

>

> I have been trying to figure out CFS for about 10 years, since a

> friend of my wife and myself developed it and wasn't given any hope

> by

> her doctor. I started studying biochemistry and physiology, joined

> some CFS internet lists, started using PubMed to study the

published

> literature, went to the conferences, got Dr. Cheney's tapes, etc.

In

> 1999 I picked up on Dr. Cheney's observation that many of his

> patients were depleted in glutathione. When I learned of all the

> things that glutathione normally does, and saw that many of these

> tied in with the symptoms of CFS, I became convinced that this is a

> fairly fundamental aspect of the pathophysiology of CFS. So for

> several years I encouraged PWCs to build their glutathione by

various

> means. This helped quite a few, but it was not a cure for most. It

> was just a temporary help. Some couldn't tolerate it at all. In the

> fall of 2004 I reported this at the AACFS conference in Madison,

WI.

> You can find that poster paper at the phoenix-cfs.com site, under

> research.

>

> Then in late 2004, a paper came out by S. Jill et al. on

> autism. I learned for the first time that glutathione was depleted

in

> autistic kids, and that this was tied to problem earlier in the

> sulfur metabolism, in the methylation cycle. This was a big BINGO

for

> me. It looked as though the same thing was happening in CFS, and

now

> I knew why PWCs could not build up their glutathione levels on a

> permanent basis by the methods I had been advocating.

>

> I went to the Long Beach DAN! conference and learned more about

> autism, and I became more convinced that we were dealing with the

> same mechanism.

>

> I started suggesting some DAN! treatments to the PWCs, using the

> Pangborn and Baker book, which is an excellent background book on

> this, by the way, and I recommend it. Well, the people who

> tried this felt somewhat better at first, but then things turned

> south for them. Meanwhile, I learned about Amy Yasko's approach in

> autism, and I decided that I liked it better, because it started at

> the genetic level, and built the biochemistry on top of that,

dealing

> with people individually based on their genetic variations. So

about

> a year ago I started encouraging PWCs to try Amy's approach.

>

> Amy's approach is not simple, easy, quick or cheap, and it has not

> been easy for PWCs to do it, but the people doing it have

experienced

> benefit and are continuing with it.

>

> For the 2007 IACFS conference, I decided to submit another paper,

> this time giving the rationale for a methylation block in CFS,

> connected to the glutathione depletion. It was accepted, but again

> only as a poster paper, so I printed up a lot of copies of it and

did

> a personal sales job on as many people at the conference as I was

> able. One clinician asked me to write up a

> description of treatment based on this hypothesis. Later in January

I

> emailed him a treatment writeup, which is what is on the internet

> (also at www.phoenix-cfs.com, under Research). In

> writing this, I knew that the full Yasko treatment approach is

> probably not going to be practical for most clinicians. Amy has

> written me that she has not been able to interest many in doing

what

> it takes to get up to speed on it and to apply it in individual

> cases. They just don't have the time, and frankly,

> many have told me that they do not find biochemistry very easy to

> assimilate.

>

> So I decided to try including a simpler approach in addition to

> describing the full Yasko treatment approach. In doing so, I asked

> Trina in the cfs_yasko internet group for help, since she is very

> knowledgeable about the Yasko treatment approach and is using it

> herself. She pointed out some problems with what I had in my draft,

> and then

> suggested a better approach, which I adopted substantially. The

> simplified approach I put in my treatment article is essentilly

what

> Trina suggested, because it made a lot of sense to me. So I must

give

> the credit for this to her. She also suggested including

nucleotides,

> but I left them out because there are some in the complete multi

(now

> called the General multi).

>

> O.K., so now what do each of the ingredients do, and how important

is

> each one?

>

> FolaPro--This is in there because a lot of PWCs have a SNP in their

> MTHFR enzyme that affects the production of 5-

methyltetrahydrofolate,

> which is the same as FolaPro. This form of folate is the one used

by

> the methionine synthase enzyme, and that's the enzyme that appears

to

> be blocked in many or most cases of CFS. If a person had their

> genetics characterized, as in the full Yasko approach, they would

> know for sure whether they needed this one, but in the simplified

> approach we just suggest giving to everyone.

>

> Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

> folinic acid and folic acid. It also has some cyano-B12 and some

> intrinsic factor as well as some other things. The folinic is

helpful

> because some people can't use ordinary folic acid well, as a result

> of genetic issues. Also, this helps to supply forms of folate that

> will make up for the low tetrahydrofolate resulting from the block

in

> methionine synthase. This enzyme normally converts 5-

> methytetrahydrofolate to tetrahydrofolate, which is needed in other

> reactions. This supplement also has some intrinsic factor and some

> ordinary B12 supplement to help those who have a type of pernicious

> anemia that results from low production of intrinsic factor in the

> stomach and which prevents them from absorbing B12 in the gut. B12

is

> also needed by methionine synthase, in the form of methylcobalamin,

> but this supplement has cyanocobalamin, which must be converted in

> the body by glutathione and SAMe to form methylcobalamin. As

> glutathione and SAMe come up, this should become more effective.

>

> Complete vitamin and ultra-antioxidant (now called the General

> Vitamin and Neurological Health Formula)--This is Amy Yasko's basic

> high-

> potency general nutritional supplement. This is kind of a

foundation

> for the biochemistry in general. However, I think it's better for

> PWCs than other general supplements, because it has particular

things

> needed for dealing with a methylation cycle block, including some

TMG

> and sulfur metabolism supplements as well as nucleotides. It is

also

> high on magnesium and low on calcium, and has no iron or copper. So

I

> don't think other general supplements do everything this one does,

> and I think it's important in the treatment.

> The TMG helps to get the shortcut pathway in the methylation cycle

> going, and that helps to build SAMe, which is needed to get the

> methionine synthase reaction going. The nucleotides will help to

> supply RNA and DNA for new cells until the folate cycle is working

> right again.

>

> Phosphatidylserine complex--This has various phosphatidyls in it,

> which will help repair damaged membranes, including those in cells

of

> the brain and nervous system. It also has some choline, which can

be

> converted to TMG (betaine) in the body, to help start the shortcut

> pathway.

>

> Perque B12--This is a hefty dose of sublingual hydroxocobalamin. As

I

> said above, B12 is needed to get methionine synthase going.

> Methylcobalamin is actually the form needed, but some people cannot

> tolerate it for genetic reasons, and I'm also concerned that people

> with high body burdens of mercury could move mercury into the brain

> if they take too much methylcobalamin. Methylcobalamin is the only

> substance in biological systems that can methylate mercury, and

> methylmercury can cross the blood-brain barrier. This supplement is

> sublingual to compensate for poor B12 absorption in the gut of many

> people.

>

> There are also two others that were in the earlier version of the

> simplified approach:

>

> SAMe--This is normally part of the methylation cycle. Depending on

> genetic variations (SNPs or polymorphisms) some people can't

tolerate

> much of this, and some need more. The dosage is a compromise. If

> people can't tolerate this, they should leave it out, because

> stimulating the shortcut pathway, using TMG and choline in the

other

> supplements) will probably make enough for them.

>

> Methylation Support Nutriswitch Formula--This is a mixture of RNAs

> that is designed to help the methylation cycle. It is somewhat

> expensive, and is not essential, but is helpful and worthwhile if

> people can afford it.

>

> I do think that the forms of

> folate and B12 are probably essential, because they go after the

> basic problem in CFS, in my opinion. I think the General supplement

> is important, and, and I think that some way to stimulate the

> shortcut is important, also. SAMe will help some people but perhaps

> not be tolerated by others, and if not, can be left out. The

> Methylation Support formula is helpful, but could be left out.

>

> Adding glutathione support will help some people, as will adding

> molybdenum. As more things are added, though, we are moving toward

> the full Yasko approach, which is fine, but it is more complicated

> and expensive, too. Maybe we should view this simplified approach

as

> the front door to the full Yasko approach. It might work fine by

> itself for some people, but for others, maybe they should look at

The

> Puzzle of Autism, sold on www.Amazon.com, to see what else there

> might

> help them. If the simplified approach seems to help to some degree,

> and it catches your attention for that reason, but it still doesn't

> do the whole job for you, then you could look further at the the

full

> Yasko treatment. At least then you would have some reason to dig

into

> it. Otherwise, it looks pretty daunting to a lot of PWCs.

>

> Rich

>

[Guest guest]

Dear Rich

We love you , even if it is only because you use a spellchecker :-)

But the issue for some of us who have reached the end of out tether with grossly elevated folate and B12 despite minimal B group supplementation, that this looks awfully like another blind alley.

Regards

Windsor

[infections] Re: Exciting news! Cohort trying the simplified GD-MCB treatment growing fast

Hi, Penny.Thank you!I think there is some "magic" in taking this set of supplements together, since they complement each other in encouraging the methylation cycle to get going again. The particular forms of folate and B12 seem to be important, because genetic problems prevent some people from using the garden variety folic acid and cyanocobalamin. And Amy Yasko's multi has some special things in it for this application, too. I know that these supplements sound pretty mundane, but the essence seems to be in the combination and the details.I agree that it is too early to reach big conclusions, but I am very hopeful, both because the biochemistry is in place to point toward the root issue, which these supplements address, and because of the reports coming from these people about how the various CFS symptoms are falling away. I think you might be amazed to read some of their reports. They're on the ImmuneSupport FM/CFS board. Anyway, time will tell, and I'm glad you like me.(:-)Rich> Hi, all.> > I realise that not everyone here is ecstatic about my approach to > treating CFS, but I like you nevertheless, and I don't want anyone to > be left out. So here's the big news:> > As of this afternoon, the number of PWCs who have notified me that > they are trying the new simplified treatment approach based on the > glutathione depletion--methylation cycle block hypothesis for CFS has > reached twenty-four, and several more have informed me that they are > planning to start at various times in the future. > > This has developed from a standing start in late January, 2007. Most > of these people > have been on it for only a few weeks or a few days, the longest being > a little over three months now. Because the pioneers on this > treatment have been posting such good early reports on CFS internet > boards (especially the ImmuneSupport FM/CFS board), there appears to > be an avalanche effect going on in terms of new people starting it > over > the past few days. I find it quite exciting! > > One of the first things several have noticed is better sleep. There > are also reports of memory returning, less pain, more energy, brain > fog lifting, improved thyroid function, vulvodynia going away, and > more. I think we are finally hitting the root cause in the > biochemistry for many PWCs. > > I don't yet know whether this treatment will work for "pure > fibromyalgia." I haven't been pushing it for that, because I don't > know how FM develops at the biochemical level. I do think I > understand how many cases of CFS develop now, though, and I believe > that the science is in place to support this treatment for CFS. I > presented > it in a poster paper at the IACFS conference in January. > > As many of you may know, I've been trying to figure out CFS for over > ten > years. Thanks to the work of others, including Dr. Cheney and the > autism people, I think we are finally there, at least for a major > subset, and perhaps for the majority of cases. > > Is there a downside to this treatment? Yes, it doesn't bring a cure > overnight, and there is unavoidable detox to go through, because the > body accumulates toxins and infections while a person has CFS. Their > detox system and their immune system are not operating properly > during > this time. And the rates of excretion of toxins from the body are > limited. So > the more that has accumulated, the longer it will likely take to work > off the backlog and clear it all out, so that the person can be > healthy again. But I'm convinced that it will happen, if the person > hangs in there with the treatment. > > So far very few who have started this treatment have quit. Several > find that they need to take breaks to let the detox settle down to a > tolerable level, but because they begin experiencing improvement in > CFS > symptoms almost immediately, they are motivated to continue. > > For those interested in the details of this treatment and its > history, here's a reprint of something I posted on the ImmuneSupport > board: > > Simplified Treatment Approach--Current Version 05/22/07 09:58 AM > > Here is the current version of the simplified treatment approach > based on the glutathione depletion--methylation cycle block > hypothesis. > > All the supplements can be obtained from http://www.holisticheal.com, > or you can obtain them elsewhere. The cost is a little over $2.00 > per day for all the supplements at the dosages suggested below. > > These supplements and dosages have been selected by Dr. Amy Yasko as > part of her complete treatment approach, as described in her > book "The Puzzle of Autism." Substitutions or changes in dosages may > not have the same effect as the combination of supplements and > dosages suggested. It's not wise to raise the dosages, at least for > a few weeks, because this can bring on detox at an intensity that is > difficult to tolerate. Please be patient and take it easy! > > Here are the five supplements: > > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics) > > 2. one-quarter tablet Intrinsic B12/folate (Metagenics) > > 3. (up to) 2 tablets (It's best to start with ¼ tablet and work up as > tolerated) Complete Vitamin and Neurological Health Formula (Holistic > Health Consultants) > > 4. one softgel capsule Phosphatidyl Serine Complex > > 5. one sublingual lozenge Perque B12 > > The first two supplement tablets can be difficult to break into > quarters. An alternative is to crush them into powders, mix the > powders together, and divide the powders into quarters using a knife > and a flat surface. The powders can be taken orally with water, with > or without food, and do not taste bad. > > Since some questions have been asked about what ingredients are > essential, and since some of the people appear to be taking > augmented versions of the simplified GD-MCB treatment approach that I > wrote about in my January treatment paper, I want to give you some > history and some comments about that to help you with your own > choices about what to take. There's nothing proprietary about what > I've written. I would just like to see people get healthy. > > I have been trying to figure out CFS for about 10 years, since a > friend of my wife and myself developed it and wasn't given any hope > by > her doctor. I started studying biochemistry and physiology, joined > some CFS internet lists, started using PubMed to study the published > literature, went to the conferences, got Dr. Cheney's tapes, etc. In > 1999 I picked up on Dr. Cheney's observation that many of his > patients were depleted in glutathione. When I learned of all the > things that glutathione normally does, and saw that many of these > tied in with the symptoms of CFS, I became convinced that this is a > fairly fundamental aspect of the pathophysiology of CFS. So for > several years I encouraged PWCs to build their glutathione by various > means. This helped quite a few, but it was not a cure for most. It > was just a temporary help. Some couldn't tolerate it at all. In the > fall of 2004 I reported this at the AACFS conference in Madison, WI. > You can find that poster paper at the phoenix-cfs.com site, under > research. > > Then in late 2004, a paper came out by S. Jill et al. on > autism. I learned for the first time that glutathione was depleted in > autistic kids, and that this was tied to problem earlier in the > sulfur metabolism, in the methylation cycle. This was a big BINGO for > me. It looked as though the same thing was happening in CFS, and now > I knew why PWCs could not build up their glutathione levels on a > permanent basis by the methods I had been advocating. > > I went to the Long Beach DAN! conference and learned more about > autism, and I became more convinced that we were dealing with the > same mechanism. > > I started suggesting some DAN! treatments to the PWCs, using the > Pangborn and Baker book, which is an excellent background book on > this, by the way, and I recommend it. Well, the people who > tried this felt somewhat better at first, but then things turned > south for them. Meanwhile, I learned about Amy Yasko's approach in > autism, and I decided that I liked it better, because it started at > the genetic level, and built the biochemistry on top of that, dealing > with people individually based on their genetic variations. So about > a year ago I started encouraging PWCs to try Amy's approach. > > Amy's approach is not simple, easy, quick or cheap, and it has not > been easy for PWCs to do it, but the people doing it have experienced > benefit and are continuing with it. > > For the 2007 IACFS conference, I decided to submit another paper, > this time giving the rationale for a methylation block in CFS, > connected to the glutathione depletion. It was accepted, but again > only as a poster paper, so I printed up a lot of copies of it and did > a personal sales job on as many people at the conference as I was > able. One clinician asked me to write up a > description of treatment based on this hypothesis. Later in January I > emailed him a treatment writeup, which is what is on the internet > (also at www.phoenix-cfs.com, under Research). In > writing this, I knew that the full Yasko treatment approach is > probably not going to be practical for most clinicians. Amy has > written me that she has not been able to interest many in doing what > it takes to get up to speed on it and to apply it in individual > cases. They just don't have the time, and frankly, > many have told me that they do not find biochemistry very easy to > assimilate. > > So I decided to try including a simpler approach in addition to > describing the full Yasko treatment approach. In doing so, I asked > Trina in the cfs_yasko internet group for help, since she is very > knowledgeable about the Yasko treatment approach and is using it > herself. She pointed out some problems with what I had in my draft, > and then > suggested a better approach, which I adopted substantially. The > simplified approach I put in my treatment article is essentilly what > Trina suggested, because it made a lot of sense to me. So I must give > the credit for this to her. She also suggested including nucleotides, > but I left them out because there are some in the complete multi (now > called the General multi). > > O.K., so now what do each of the ingredients do, and how important is > each one? > > FolaPro--This is in there because a lot of PWCs have a SNP in their > MTHFR enzyme that affects the production of 5-methyltetrahydrofolate, > which is the same as FolaPro. This form of folate is the one used by > the methionine synthase enzyme, and that's the enzyme that appears to > be blocked in many or most cases of CFS. If a person had their > genetics characterized, as in the full Yasko approach, they would > know for sure whether they needed this one, but in the simplified > approach we just suggest giving to everyone. > > Intrinsic B12/folate--This one has 3 forms of folate--FolaPro, > folinic acid and folic acid. It also has some cyano-B12 and some > intrinsic factor as well as some other things. The folinic is helpful > because some people can't use ordinary folic acid well, as a result > of genetic issues. Also, this helps to supply forms of folate that > will make up for the low tetrahydrofolate resulting from the block in > methionine synthase. This enzyme normally converts 5- > methytetrahydrofolate to tetrahydrofolate, which is needed in other > reactions. This supplement also has some intrinsic factor and some > ordinary B12 supplement to help those who have a type of pernicious > anemia that results from low production of intrinsic factor in the > stomach and which prevents them from absorbing B12 in the gut. B12 is > also needed by methionine synthase, in the form of methylcobalamin, > but this supplement has cyanocobalamin, which must be converted in > the body by glutathione and SAMe to form methylcobalamin. As > glutathione and SAMe come up, this should become more effective. > > Complete vitamin and ultra-antioxidant (now called the General > Vitamin and Neurological Health Formula)--This is Amy Yasko's basic > high- > potency general nutritional supplement. This is kind of a foundation > for the biochemistry in general. However, I think it's better for > PWCs than other general supplements, because it has particular things > needed for dealing with a methylation cycle block, including some TMG > and sulfur metabolism supplements as well as nucleotides. It is also > high on magnesium and low on calcium, and has no iron or copper. So I > don't think other general supplements do everything this one does, > and I think it's important in the treatment. > The TMG helps to get the shortcut pathway in the methylation cycle > going, and that helps to build SAMe, which is needed to get the > methionine synthase reaction going. The nucleotides will help to > supply RNA and DNA for new cells until the folate cycle is working > right again. > > Phosphatidylserine complex--This has various phosphatidyls in it, > which will help repair damaged membranes, including those in cells of > the brain and nervous system. It also has some choline, which can be > converted to TMG (betaine) in the body, to help start the shortcut > pathway. > > Perque B12--This is a hefty dose of sublingual hydroxocobalamin. As I > said above, B12 is needed to get methionine synthase going. > Methylcobalamin is actually the form needed, but some people cannot > tolerate it for genetic reasons, and I'm also concerned that people > with high body burdens of mercury could move mercury into the brain > if they take too much methylcobalamin. Methylcobalamin is the only > substance in biological systems that can methylate mercury, and > methylmercury can cross the blood-brain barrier. This supplement is > sublingual to compensate for poor B12 absorption in the gut of many > people. > > There are also two others that were in the earlier version of the > simplified approach: > > SAMe--This is normally part of the methylation cycle. Depending on > genetic variations (SNPs or polymorphisms) some people can't tolerate > much of this, and some need more. The dosage is a compromise. If > people can't tolerate this, they should leave it out, because > stimulating the shortcut pathway, using TMG and choline in the other > supplements) will probably make enough for them. > > Methylation Support Nutriswitch Formula--This is a mixture of RNAs > that is designed to help the methylation cycle. It is somewhat > expensive, and is not essential, but is helpful and worthwhile if > people can afford it. > > I do think that the forms of > folate and B12 are probably essential, because they go after the > basic problem in CFS, in my opinion. I think the General supplement > is important, and, and I think that some way to stimulate the > shortcut is important, also. SAMe will help some people but perhaps > not be tolerated by others, and if not, can be left out. The > Methylation Support formula is helpful, but could be left out. > > Adding glutathione support will help some people, as will adding > molybdenum. As more things are added, though, we are moving toward > the full Yasko approach, which is fine, but it is more complicated > and expensive, too. Maybe we should view this simplified approach as > the front door to the full Yasko approach. It might work fine by > itself for some people, but for others, maybe they should look at The > Puzzle of Autism, sold on www.Amazon.com, to see what else there > might > help them. If the simplified approach seems to help to some degree, > and it catches your attention for that reason, but it still doesn't > do the whole job for you, then you could look further at the the full > Yasko treatment. At least then you would have some reason to dig into > it. Otherwise, it looks pretty daunting to a lot of PWCs. > > Rich>

[Guest guest]

Rich

Can you stop using the words genetic problems, because I'm ready to

throw prophanities at you!!!!!!!!!!!

Myself, alongside many smnart scientists, are not comfortanble that

genetic problems all of a sudden multiplied a thousand fold to give

you fukwits a platform to throw that at us ill folk.

cheers tony

> > Hi, all.

> >

> > I realise that not everyone here is ecstatic about my approach to

> > treating CFS, but I like you nevertheless, and I don't want

anyone

> to

> > be left out. So here's the big news:

> >

> > As of this afternoon, the number of PWCs who have notified me

that

> > they are trying the new simplified treatment approach based on

the

> > glutathione depletion--methylation cycle block hypothesis for CFS

> has

> > reached twenty-four, and several more have informed me that they

> are

> > planning to start at various times in the future.

> >

> > This has developed from a standing start in late January, 2007.

> Most

> > of these people

> > have been on it for only a few weeks or a few days, the longest

> being

> > a little over three months now. Because the pioneers on this

> > treatment have been posting such good early reports on CFS

internet

> > boards (especially the ImmuneSupport FM/CFS board), there appears

> to

> > be an avalanche effect going on in terms of new people starting

it

> > over

> > the past few days. I find it quite exciting!

> >

> > One of the first things several have noticed is better sleep.

There

> > are also reports of memory returning, less pain, more energy,

brain

> > fog lifting, improved thyroid function, vulvodynia going away,

and

> > more. I think we are finally hitting the root cause in the

> > biochemistry for many PWCs.

> >

> > I don't yet know whether this treatment will work for " pure

> > fibromyalgia. " I haven't been pushing it for that, because I

don't

> > know how FM develops at the biochemical level. I do think I

> > understand how many cases of CFS develop now, though, and I

believe

> > that the science is in place to support this treatment for CFS. I

> > presented

> > it in a poster paper at the IACFS conference in January.

> >

> > As many of you may know, I've been trying to figure out CFS for

> over

> > ten

> > years. Thanks to the work of others, including Dr. Cheney and the

> > autism people, I think we are finally there, at least for a major

> > subset, and perhaps for the majority of cases.

> >

> > Is there a downside to this treatment? Yes, it doesn't bring a

cure

> > overnight, and there is unavoidable detox to go through, because

> the

> > body accumulates toxins and infections while a person has CFS.

> Their

> > detox system and their immune system are not operating properly

> > during

> > this time. And the rates of excretion of toxins from the body are

> > limited. So

> > the more that has accumulated, the longer it will likely take to

> work

> > off the backlog and clear it all out, so that the person can be

> > healthy again. But I'm convinced that it will happen, if the

person

> > hangs in there with the treatment.

> >

> > So far very few who have started this treatment have quit.

Several

> > find that they need to take breaks to let the detox settle down

to

> a

> > tolerable level, but because they begin experiencing improvement

in

> > CFS

> > symptoms almost immediately, they are motivated to continue.

> >

> > For those interested in the details of this treatment and its

> > history, here's a reprint of something I posted on the

> ImmuneSupport

> > board:

> >

> > Simplified Treatment Approach--Current Version 05/22/07 09:58 AM

> >

> > Here is the current version of the simplified treatment approach

> > based on the glutathione depletion--methylation cycle block

> > hypothesis.

> >

> > All the supplements can be obtained from

> http://www.holisticheal.com,

> > or you can obtain them elsewhere. The cost is a little over $2.00

> > per day for all the supplements at the dosages suggested below.

> >

> > These supplements and dosages have been selected by Dr. Amy Yasko

> as

> > part of her complete treatment approach, as described in her

> > book " The Puzzle of Autism. " Substitutions or changes in dosages

> may

> > not have the same effect as the combination of supplements and

> > dosages suggested. It's not wise to raise the dosages, at least

for

> > a few weeks, because this can bring on detox at an intensity that

> is

> > difficult to tolerate. Please be patient and take it easy!

> >

> > Here are the five supplements:

> >

> > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

> >

> > 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

> >

> > 3. (up to) 2 tablets (It's best to start with ¼ tablet and work

up

> as

> > tolerated) Complete Vitamin and Neurological Health Formula

> (Holistic

> > Health Consultants)

> >

> > 4. one softgel capsule Phosphatidyl Serine Complex

> >

> > 5. one sublingual lozenge Perque B12

> >

> > The first two supplement tablets can be difficult to break into

> > quarters. An alternative is to crush them into powders, mix the

> > powders together, and divide the powders into quarters using a

> knife

> > and a flat surface. The powders can be taken orally with water,

> with

> > or without food, and do not taste bad.

> >

> > Since some questions have been asked about what ingredients are

> > essential, and since some of the people appear to be taking

> > augmented versions of the simplified GD-MCB treatment approach

that

> I

> > wrote about in my January treatment paper, I want to give you

some

> > history and some comments about that to help you with your own

> > choices about what to take. There's nothing proprietary about

what

> > I've written. I would just like to see people get healthy.

> >

> > I have been trying to figure out CFS for about 10 years, since a

> > friend of my wife and myself developed it and wasn't given any

hope

> > by

> > her doctor. I started studying biochemistry and physiology,

joined

> > some CFS internet lists, started using PubMed to study the

> published

> > literature, went to the conferences, got Dr. Cheney's tapes, etc.

> In

> > 1999 I picked up on Dr. Cheney's observation that many of his

> > patients were depleted in glutathione. When I learned of all the

> > things that glutathione normally does, and saw that many of these

> > tied in with the symptoms of CFS, I became convinced that this is

a

> > fairly fundamental aspect of the pathophysiology of CFS. So for

> > several years I encouraged PWCs to build their glutathione by

> various

> > means. This helped quite a few, but it was not a cure for most.

It

> > was just a temporary help. Some couldn't tolerate it at all. In

the

> > fall of 2004 I reported this at the AACFS conference in Madison,

> WI.

> > You can find that poster paper at the phoenix-cfs.com site, under

> > research.

> >

> > Then in late 2004, a paper came out by S. Jill et al. on

> > autism. I learned for the first time that glutathione was

depleted

> in

> > autistic kids, and that this was tied to problem earlier in the

> > sulfur metabolism, in the methylation cycle. This was a big BINGO

> for

> > me. It looked as though the same thing was happening in CFS, and

> now

> > I knew why PWCs could not build up their glutathione levels on a

> > permanent basis by the methods I had been advocating.

> >

> > I went to the Long Beach DAN! conference and learned more about

> > autism, and I became more convinced that we were dealing with the

> > same mechanism.

> >

> > I started suggesting some DAN! treatments to the PWCs, using the

> > Pangborn and Baker book, which is an excellent background book on

> > this, by the way, and I recommend it. Well, the people who

> > tried this felt somewhat better at first, but then things turned

> > south for them. Meanwhile, I learned about Amy Yasko's approach

in

> > autism, and I decided that I liked it better, because it started

at

> > the genetic level, and built the biochemistry on top of that,

> dealing

> > with people individually based on their genetic variations. So

> about

> > a year ago I started encouraging PWCs to try Amy's approach.

> >

> > Amy's approach is not simple, easy, quick or cheap, and it has

not

> > been easy for PWCs to do it, but the people doing it have

> experienced

> > benefit and are continuing with it.

> >

> > For the 2007 IACFS conference, I decided to submit another paper,

> > this time giving the rationale for a methylation block in CFS,

> > connected to the glutathione depletion. It was accepted, but

again

> > only as a poster paper, so I printed up a lot of copies of it and

> did

> > a personal sales job on as many people at the conference as I was

> > able. One clinician asked me to write up a

> > description of treatment based on this hypothesis. Later in

January

> I

> > emailed him a treatment writeup, which is what is on the internet

> > (also at www.phoenix-cfs.com, under Research). In

> > writing this, I knew that the full Yasko treatment approach is

> > probably not going to be practical for most clinicians. Amy has

> > written me that she has not been able to interest many in doing

> what

> > it takes to get up to speed on it and to apply it in individual

> > cases. They just don't have the time, and frankly,

> > many have told me that they do not find biochemistry very easy to

> > assimilate.

> >

> > So I decided to try including a simpler approach in addition to

> > describing the full Yasko treatment approach. In doing so, I

asked

> > Trina in the cfs_yasko internet group for help, since she is very

> > knowledgeable about the Yasko treatment approach and is using it

> > herself. She pointed out some problems with what I had in my

draft,

> > and then

> > suggested a better approach, which I adopted substantially. The

> > simplified approach I put in my treatment article is essentilly

> what

> > Trina suggested, because it made a lot of sense to me. So I must

> give

> > the credit for this to her. She also suggested including

> nucleotides,

> > but I left them out because there are some in the complete multi

> (now

> > called the General multi).

> >

> > O.K., so now what do each of the ingredients do, and how

important

> is

> > each one?

> >

> > FolaPro--This is in there because a lot of PWCs have a SNP in

their

> > MTHFR enzyme that affects the production of 5-

> methyltetrahydrofolate,

> > which is the same as FolaPro. This form of folate is the one used

> by

> > the methionine synthase enzyme, and that's the enzyme that

appears

> to

> > be blocked in many or most cases of CFS. If a person had their

> > genetics characterized, as in the full Yasko approach, they would

> > know for sure whether they needed this one, but in the simplified

> > approach we just suggest giving to everyone.

> >

> > Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

> > folinic acid and folic acid. It also has some cyano-B12 and some

> > intrinsic factor as well as some other things. The folinic is

> helpful

> > because some people can't use ordinary folic acid well, as a

result

> > of genetic issues. Also, this helps to supply forms of folate

that

> > will make up for the low tetrahydrofolate resulting from the

block

> in

> > methionine synthase. This enzyme normally converts 5-

> > methytetrahydrofolate to tetrahydrofolate, which is needed in

other

> > reactions. This supplement also has some intrinsic factor and

some

> > ordinary B12 supplement to help those who have a type of

pernicious

> > anemia that results from low production of intrinsic factor in

the

> > stomach and which prevents them from absorbing B12 in the gut.

B12

> is

> > also needed by methionine synthase, in the form of

methylcobalamin,

> > but this supplement has cyanocobalamin, which must be converted

in

> > the body by glutathione and SAMe to form methylcobalamin. As

> > glutathione and SAMe come up, this should become more effective.

> >

> > Complete vitamin and ultra-antioxidant (now called the General

> > Vitamin and Neurological Health Formula)--This is Amy Yasko's

basic

> > high-

> > potency general nutritional supplement. This is kind of a

> foundation

> > for the biochemistry in general. However, I think it's better for

> > PWCs than other general supplements, because it has particular

> things

> > needed for dealing with a methylation cycle block, including some

> TMG

> > and sulfur metabolism supplements as well as nucleotides. It is

> also

> > high on magnesium and low on calcium, and has no iron or copper.

So

> I

> > don't think other general supplements do everything this one

does,

> > and I think it's important in the treatment.

> > The TMG helps to get the shortcut pathway in the methylation

cycle

> > going, and that helps to build SAMe, which is needed to get the

> > methionine synthase reaction going. The nucleotides will help to

> > supply RNA and DNA for new cells until the folate cycle is

working

> > right again.

> >

> > Phosphatidylserine complex--This has various phosphatidyls in it,

> > which will help repair damaged membranes, including those in

cells

> of

> > the brain and nervous system. It also has some choline, which can

> be

> > converted to TMG (betaine) in the body, to help start the

shortcut

> > pathway.

> >

> > Perque B12--This is a hefty dose of sublingual hydroxocobalamin.

As

> I

> > said above, B12 is needed to get methionine synthase going.

> > Methylcobalamin is actually the form needed, but some people

cannot

> > tolerate it for genetic reasons, and I'm also concerned that

people

> > with high body burdens of mercury could move mercury into the

brain

> > if they take too much methylcobalamin. Methylcobalamin is the

only

> > substance in biological systems that can methylate mercury, and

> > methylmercury can cross the blood-brain barrier. This supplement

is

> > sublingual to compensate for poor B12 absorption in the gut of

many

> > people.

> >

> > There are also two others that were in the earlier version of the

> > simplified approach:

> >

> > SAMe--This is normally part of the methylation cycle. Depending

on

> > genetic variations (SNPs or polymorphisms) some people can't

> tolerate

> > much of this, and some need more. The dosage is a compromise. If

> > people can't tolerate this, they should leave it out, because

> > stimulating the shortcut pathway, using TMG and choline in the

> other

> > supplements) will probably make enough for them.

> >

> > Methylation Support Nutriswitch Formula--This is a mixture of

RNAs

> > that is designed to help the methylation cycle. It is somewhat

> > expensive, and is not essential, but is helpful and worthwhile if

> > people can afford it.

> >

> > I do think that the forms of

> > folate and B12 are probably essential, because they go after the

> > basic problem in CFS, in my opinion. I think the General

supplement

> > is important, and, and I think that some way to stimulate the

> > shortcut is important, also. SAMe will help some people but

perhaps

> > not be tolerated by others, and if not, can be left out. The

> > Methylation Support formula is helpful, but could be left out.

> >

> > Adding glutathione support will help some people, as will adding

> > molybdenum. As more things are added, though, we are moving

toward

> > the full Yasko approach, which is fine, but it is more

complicated

> > and expensive, too. Maybe we should view this simplified approach

> as

> > the front door to the full Yasko approach. It might work fine by

> > itself for some people, but for others, maybe they should look at

> The

> > Puzzle of Autism, sold on www.Amazon.com, to see what else there

> > might

> > help them. If the simplified approach seems to help to some

degree,

> > and it catches your attention for that reason, but it still

doesn't

> > do the whole job for you, then you could look further at the the

> full

> > Yasko treatment. At least then you would have some reason to dig

> into

> > it. Otherwise, it looks pretty daunting to a lot of PWCs.

> >

> > Rich

> >

>

[Guest guest]

Rich, for us Christians this translates into the following:

Please do not use the concept that these diseases are caused by

genetic defects, because it is upsetting to our sensibilities. These

gene " problems " are not actually problems since they probably involve

a huge percentage of the world's human population, created by God.

It makes us sick folks depressed when you blame our genes. Our genes

clearly contain original sin just like Tony's. We just don't happen

to use the word, " fukwit " to describe you when you routinely limit

reference to the mutual infections we all seem to have - not the

mutual genes we all seem to have due to being human.

Sincerely,

a Carnes

>

> Rich

> Can you stop using the words genetic problems, because I'm ready to

> throw prophanities at you!!!!!!!!!!!

> Myself, alongside many smnart scientists, are not comfortanble

that

> genetic problems all of a sudden multiplied a thousand fold to give

> you fukwits a platform to throw that at us ill folk.

> cheers tony

>

>

>

>

>

> > > Hi, all.

> > >

> > > I realise that not everyone here is ecstatic about my approach

to

> > > treating CFS, but I like you nevertheless, and I don't want

> anyone

> > to

> > > be left out. So here's the big news:

> > >

> > > As of this afternoon, the number of PWCs who have notified me

> that

> > > they are trying the new simplified treatment approach based on

> the

> > > glutathione depletion--methylation cycle block hypothesis for

CFS

> > has

> > > reached twenty-four, and several more have informed me that

they

> > are

> > > planning to start at various times in the future.

> > >

> > > This has developed from a standing start in late January, 2007.

> > Most

> > > of these people

> > > have been on it for only a few weeks or a few days, the longest

> > being

> > > a little over three months now. Because the pioneers on this

> > > treatment have been posting such good early reports on CFS

> internet

> > > boards (especially the ImmuneSupport FM/CFS board), there

appears

> > to

> > > be an avalanche effect going on in terms of new people starting

> it

> > > over

> > > the past few days. I find it quite exciting!

> > >

> > > One of the first things several have noticed is better sleep.

> There

> > > are also reports of memory returning, less pain, more energy,

> brain

> > > fog lifting, improved thyroid function, vulvodynia going away,

> and

> > > more. I think we are finally hitting the root cause in the

> > > biochemistry for many PWCs.

> > >

> > > I don't yet know whether this treatment will work for " pure

> > > fibromyalgia. " I haven't been pushing it for that, because I

> don't

> > > know how FM develops at the biochemical level. I do think I

> > > understand how many cases of CFS develop now, though, and I

> believe

> > > that the science is in place to support this treatment for CFS.

I

> > > presented

> > > it in a poster paper at the IACFS conference in January.

> > >

> > > As many of you may know, I've been trying to figure out CFS for

> > over

> > > ten

> > > years. Thanks to the work of others, including Dr. Cheney and

the

> > > autism people, I think we are finally there, at least for a

major

> > > subset, and perhaps for the majority of cases.

> > >

> > > Is there a downside to this treatment? Yes, it doesn't bring a

> cure

> > > overnight, and there is unavoidable detox to go through,

because

> > the

> > > body accumulates toxins and infections while a person has CFS.

> > Their

> > > detox system and their immune system are not operating properly

> > > during

> > > this time. And the rates of excretion of toxins from the body

are

> > > limited. So

> > > the more that has accumulated, the longer it will likely take

to

> > work

> > > off the backlog and clear it all out, so that the person can be

> > > healthy again. But I'm convinced that it will happen, if the

> person

> > > hangs in there with the treatment.

> > >

> > > So far very few who have started this treatment have quit.

> Several

> > > find that they need to take breaks to let the detox settle down

> to

> > a

> > > tolerable level, but because they begin experiencing

improvement

> in

> > > CFS

> > > symptoms almost immediately, they are motivated to continue.

> > >

> > > For those interested in the details of this treatment and its

> > > history, here's a reprint of something I posted on the

> > ImmuneSupport

> > > board:

> > >

> > > Simplified Treatment Approach--Current Version 05/22/07 09:58

AM

> > >

> > > Here is the current version of the simplified treatment

approach

> > > based on the glutathione depletion--methylation cycle block

> > > hypothesis.

> > >

> > > All the supplements can be obtained from

> > http://www.holisticheal.com,

> > > or you can obtain them elsewhere. The cost is a little over

$2.00

> > > per day for all the supplements at the dosages suggested below.

> > >

> > > These supplements and dosages have been selected by Dr. Amy

Yasko

> > as

> > > part of her complete treatment approach, as described in her

> > > book " The Puzzle of Autism. " Substitutions or changes in

dosages

> > may

> > > not have the same effect as the combination of supplements and

> > > dosages suggested. It's not wise to raise the dosages, at least

> for

> > > a few weeks, because this can bring on detox at an intensity

that

> > is

> > > difficult to tolerate. Please be patient and take it easy!

> > >

> > > Here are the five supplements:

> > >

> > > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

> > >

> > > 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

> > >

> > > 3. (up to) 2 tablets (It's best to start with ¼ tablet and work

> up

> > as

> > > tolerated) Complete Vitamin and Neurological Health Formula

> > (Holistic

> > > Health Consultants)

> > >

> > > 4. one softgel capsule Phosphatidyl Serine Complex

> > >

> > > 5. one sublingual lozenge Perque B12

> > >

> > > The first two supplement tablets can be difficult to break into

> > > quarters. An alternative is to crush them into powders, mix the

> > > powders together, and divide the powders into quarters using a

> > knife

> > > and a flat surface. The powders can be taken orally with water,

> > with

> > > or without food, and do not taste bad.

> > >

> > > Since some questions have been asked about what ingredients are

> > > essential, and since some of the people appear to be taking

> > > augmented versions of the simplified GD-MCB treatment approach

> that

> > I

> > > wrote about in my January treatment paper, I want to give you

> some

> > > history and some comments about that to help you with your own

> > > choices about what to take. There's nothing proprietary about

> what

> > > I've written. I would just like to see people get healthy.

> > >

> > > I have been trying to figure out CFS for about 10 years, since

a

> > > friend of my wife and myself developed it and wasn't given any

> hope

> > > by

> > > her doctor. I started studying biochemistry and physiology,

> joined

> > > some CFS internet lists, started using PubMed to study the

> > published

> > > literature, went to the conferences, got Dr. Cheney's tapes,

etc.

> > In

> > > 1999 I picked up on Dr. Cheney's observation that many of his

> > > patients were depleted in glutathione. When I learned of all

the

> > > things that glutathione normally does, and saw that many of

these

> > > tied in with the symptoms of CFS, I became convinced that this

is

> a

> > > fairly fundamental aspect of the pathophysiology of CFS. So for

> > > several years I encouraged PWCs to build their glutathione by

> > various

> > > means. This helped quite a few, but it was not a cure for most.

> It

> > > was just a temporary help. Some couldn't tolerate it at all. In

> the

> > > fall of 2004 I reported this at the AACFS conference in

Madison,

> > WI.

> > > You can find that poster paper at the phoenix-cfs.com site,

under

> > > research.

> > >

> > > Then in late 2004, a paper came out by S. Jill et al. on

> > > autism. I learned for the first time that glutathione was

> depleted

> > in

> > > autistic kids, and that this was tied to problem earlier in the

> > > sulfur metabolism, in the methylation cycle. This was a big

BINGO

> > for

> > > me. It looked as though the same thing was happening in CFS,

and

> > now

> > > I knew why PWCs could not build up their glutathione levels on

a

> > > permanent basis by the methods I had been advocating.

> > >

> > > I went to the Long Beach DAN! conference and learned more about

> > > autism, and I became more convinced that we were dealing with

the

> > > same mechanism.

> > >

> > > I started suggesting some DAN! treatments to the PWCs, using

the

> > > Pangborn and Baker book, which is an excellent background book

on

> > > this, by the way, and I recommend it. Well, the people who

> > > tried this felt somewhat better at first, but then things

turned

> > > south for them. Meanwhile, I learned about Amy Yasko's approach

> in

> > > autism, and I decided that I liked it better, because it

started

> at

> > > the genetic level, and built the biochemistry on top of that,

> > dealing

> > > with people individually based on their genetic variations. So

> > about

> > > a year ago I started encouraging PWCs to try Amy's approach.

> > >

> > > Amy's approach is not simple, easy, quick or cheap, and it has

> not

> > > been easy for PWCs to do it, but the people doing it have

> > experienced

> > > benefit and are continuing with it.

> > >

> > > For the 2007 IACFS conference, I decided to submit another

paper,

> > > this time giving the rationale for a methylation block in CFS,

> > > connected to the glutathione depletion. It was accepted, but

> again

> > > only as a poster paper, so I printed up a lot of copies of it

and

> > did

> > > a personal sales job on as many people at the conference as I

was

> > > able. One clinician asked me to write up a

> > > description of treatment based on this hypothesis. Later in

> January

> > I

> > > emailed him a treatment writeup, which is what is on the

internet

> > > (also at www.phoenix-cfs.com, under Research). In

> > > writing this, I knew that the full Yasko treatment approach is

> > > probably not going to be practical for most clinicians. Amy has

> > > written me that she has not been able to interest many in doing

> > what

> > > it takes to get up to speed on it and to apply it in individual

> > > cases. They just don't have the time, and frankly,

> > > many have told me that they do not find biochemistry very easy

to

> > > assimilate.

> > >

> > > So I decided to try including a simpler approach in addition to

> > > describing the full Yasko treatment approach. In doing so, I

> asked

> > > Trina in the cfs_yasko internet group for help, since she is

very

> > > knowledgeable about the Yasko treatment approach and is using

it

> > > herself. She pointed out some problems with what I had in my

> draft,

> > > and then

> > > suggested a better approach, which I adopted substantially. The

> > > simplified approach I put in my treatment article is essentilly

> > what

> > > Trina suggested, because it made a lot of sense to me. So I

must

> > give

> > > the credit for this to her. She also suggested including

> > nucleotides,

> > > but I left them out because there are some in the complete

multi

> > (now

> > > called the General multi).

> > >

> > > O.K., so now what do each of the ingredients do, and how

> important

> > is

> > > each one?

> > >

> > > FolaPro--This is in there because a lot of PWCs have a SNP in

> their

> > > MTHFR enzyme that affects the production of 5-

> > methyltetrahydrofolate,

> > > which is the same as FolaPro. This form of folate is the one

used

> > by

> > > the methionine synthase enzyme, and that's the enzyme that

> appears

> > to

> > > be blocked in many or most cases of CFS. If a person had their

> > > genetics characterized, as in the full Yasko approach, they

would

> > > know for sure whether they needed this one, but in the

simplified

> > > approach we just suggest giving to everyone.

> > >

> > > Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

> > > folinic acid and folic acid. It also has some cyano-B12 and

some

> > > intrinsic factor as well as some other things. The folinic is

> > helpful

> > > because some people can't use ordinary folic acid well, as a

> result

> > > of genetic issues. Also, this helps to supply forms of folate

> that

> > > will make up for the low tetrahydrofolate resulting from the

> block

> > in

> > > methionine synthase. This enzyme normally converts 5-

> > > methytetrahydrofolate to tetrahydrofolate, which is needed in

> other

> > > reactions. This supplement also has some intrinsic factor and

> some

> > > ordinary B12 supplement to help those who have a type of

> pernicious

> > > anemia that results from low production of intrinsic factor in

> the

> > > stomach and which prevents them from absorbing B12 in the gut.

> B12

> > is

> > > also needed by methionine synthase, in the form of

> methylcobalamin,

> > > but this supplement has cyanocobalamin, which must be converted

> in

> > > the body by glutathione and SAMe to form methylcobalamin. As

> > > glutathione and SAMe come up, this should become more

effective.

> > >

> > > Complete vitamin and ultra-antioxidant (now called the General

> > > Vitamin and Neurological Health Formula)--This is Amy Yasko's

> basic

> > > high-

> > > potency general nutritional supplement. This is kind of a

> > foundation

> > > for the biochemistry in general. However, I think it's better

for

> > > PWCs than other general supplements, because it has particular

> > things

> > > needed for dealing with a methylation cycle block, including

some

> > TMG

> > > and sulfur metabolism supplements as well as nucleotides. It is

> > also

> > > high on magnesium and low on calcium, and has no iron or

copper.

> So

> > I

> > > don't think other general supplements do everything this one

> does,

> > > and I think it's important in the treatment.

> > > The TMG helps to get the shortcut pathway in the methylation

> cycle

> > > going, and that helps to build SAMe, which is needed to get the

> > > methionine synthase reaction going. The nucleotides will help

to

> > > supply RNA and DNA for new cells until the folate cycle is

> working

> > > right again.

> > >

> > > Phosphatidylserine complex--This has various phosphatidyls in

it,

> > > which will help repair damaged membranes, including those in

> cells

> > of

> > > the brain and nervous system. It also has some choline, which

can

> > be

> > > converted to TMG (betaine) in the body, to help start the

> shortcut

> > > pathway.

> > >

> > > Perque B12--This is a hefty dose of sublingual

hydroxocobalamin.

> As

> > I

> > > said above, B12 is needed to get methionine synthase going.

> > > Methylcobalamin is actually the form needed, but some people

> cannot

> > > tolerate it for genetic reasons, and I'm also concerned that

> people

> > > with high body burdens of mercury could move mercury into the

> brain

> > > if they take too much methylcobalamin. Methylcobalamin is the

> only

> > > substance in biological systems that can methylate mercury, and

> > > methylmercury can cross the blood-brain barrier. This

supplement

> is

> > > sublingual to compensate for poor B12 absorption in the gut of

> many

> > > people.

> > >

> > > There are also two others that were in the earlier version of

the

> > > simplified approach:

> > >

> > > SAMe--This is normally part of the methylation cycle. Depending

> on

> > > genetic variations (SNPs or polymorphisms) some people can't

> > tolerate

> > > much of this, and some need more. The dosage is a compromise.

If

> > > people can't tolerate this, they should leave it out, because

> > > stimulating the shortcut pathway, using TMG and choline in the

> > other

> > > supplements) will probably make enough for them.

> > >

> > > Methylation Support Nutriswitch Formula--This is a mixture of

> RNAs

> > > that is designed to help the methylation cycle. It is somewhat

> > > expensive, and is not essential, but is helpful and worthwhile

if

> > > people can afford it.

> > >

> > > I do think that the forms of

> > > folate and B12 are probably essential, because they go after

the

> > > basic problem in CFS, in my opinion. I think the General

> supplement

> > > is important, and, and I think that some way to stimulate the

> > > shortcut is important, also. SAMe will help some people but

> perhaps

> > > not be tolerated by others, and if not, can be left out. The

> > > Methylation Support formula is helpful, but could be left out.

> > >

> > > Adding glutathione support will help some people, as will

adding

> > > molybdenum. As more things are added, though, we are moving

> toward

> > > the full Yasko approach, which is fine, but it is more

> complicated

> > > and expensive, too. Maybe we should view this simplified

approach

> > as

> > > the front door to the full Yasko approach. It might work fine

by

> > > itself for some people, but for others, maybe they should look

at

> > The

> > > Puzzle of Autism, sold on www.Amazon.com, to see what else

there

> > > might

> > > help them. If the simplified approach seems to help to some

> degree,

> > > and it catches your attention for that reason, but it still

> doesn't

> > > do the whole job for you, then you could look further at the

the

> > full

> > > Yasko treatment. At least then you would have some reason to

dig

> > into

> > > it. Otherwise, it looks pretty daunting to a lot of PWCs.

> > >

> > > Rich

> > >

> >

>

[Guest guest]

a

You forgot to include the fact that this so called genetic

problem/defect has increased 1000 fold.And if you listen to the

smarter researchers they will run a mile in the opposite direction

whenever anyone claims this genetic crap..

Yet everything else Rich claims I loved. I personally can't see how

though you can jump up and get your lymphatic/detox system working

when it got fried by the toxins he describes, but doesn't focus

on.The effort to research this area and pay attention to what's

really required to get the toxins out should and would be appreciated

by everyone.The newcastle university researchers describe the toxins

that damage membranes and wormhole there way around your body and how

identically they are found in both autism and cfs patients. This goes

back to 1988 and they just gave up on this whole corner of medicine

because as has become obvious the conspiracy theorists seem to

dominate(borrelia/herx/mycoplasma/rickettsia)..The link between the

toxins and the 2 conditions has fallen on deaf ears as was the case

with ulcers and bacteria not that far before.

The other thing that drives these conditions and creates this

havoc, 'the slime'- that's being constantly swallowed and distributed

throughout the body and organs clagging everything up is soooooo

overlooked..

> > > > Hi, all.

> > > >

> > > > I realise that not everyone here is ecstatic about my

approach

> to

> > > > treating CFS, but I like you nevertheless, and I don't want

> > anyone

> > > to

> > > > be left out. So here's the big news:

> > > >

> > > > As of this afternoon, the number of PWCs who have notified me

> > that

> > > > they are trying the new simplified treatment approach based

on

> > the

> > > > glutathione depletion--methylation cycle block hypothesis for

> CFS

> > > has

> > > > reached twenty-four, and several more have informed me that

> they

> > > are

> > > > planning to start at various times in the future.

> > > >

> > > > This has developed from a standing start in late January,

2007.

> > > Most

> > > > of these people

> > > > have been on it for only a few weeks or a few days, the

longest

> > > being

> > > > a little over three months now. Because the pioneers on this

> > > > treatment have been posting such good early reports on CFS

> > internet

> > > > boards (especially the ImmuneSupport FM/CFS board), there

> appears

> > > to

> > > > be an avalanche effect going on in terms of new people

starting

> > it

> > > > over

> > > > the past few days. I find it quite exciting!

> > > >

> > > > One of the first things several have noticed is better sleep.

> > There

> > > > are also reports of memory returning, less pain, more energy,

> > brain

> > > > fog lifting, improved thyroid function, vulvodynia going

away,

> > and

> > > > more. I think we are finally hitting the root cause in the

> > > > biochemistry for many PWCs.

> > > >

> > > > I don't yet know whether this treatment will work for " pure

> > > > fibromyalgia. " I haven't been pushing it for that, because I

> > don't

> > > > know how FM develops at the biochemical level. I do think I

> > > > understand how many cases of CFS develop now, though, and I

> > believe

> > > > that the science is in place to support this treatment for

CFS.

> I

> > > > presented

> > > > it in a poster paper at the IACFS conference in January.

> > > >

> > > > As many of you may know, I've been trying to figure out CFS

for

> > > over

> > > > ten

> > > > years. Thanks to the work of others, including Dr. Cheney and

> the

> > > > autism people, I think we are finally there, at least for a

> major

> > > > subset, and perhaps for the majority of cases.

> > > >

> > > > Is there a downside to this treatment? Yes, it doesn't bring

a

> > cure

> > > > overnight, and there is unavoidable detox to go through,

> because

> > > the

> > > > body accumulates toxins and infections while a person has

CFS.

> > > Their

> > > > detox system and their immune system are not operating

properly

> > > > during

> > > > this time. And the rates of excretion of toxins from the body

> are

> > > > limited. So

> > > > the more that has accumulated, the longer it will likely take

> to

> > > work

> > > > off the backlog and clear it all out, so that the person can

be

> > > > healthy again. But I'm convinced that it will happen, if the

> > person

> > > > hangs in there with the treatment.

> > > >

> > > > So far very few who have started this treatment have quit.

> > Several

> > > > find that they need to take breaks to let the detox settle

down

> > to

> > > a

> > > > tolerable level, but because they begin experiencing

> improvement

> > in

> > > > CFS

> > > > symptoms almost immediately, they are motivated to continue.

> > > >

> > > > For those interested in the details of this treatment and its

> > > > history, here's a reprint of something I posted on the

> > > ImmuneSupport

> > > > board:

> > > >

> > > > Simplified Treatment Approach--Current Version 05/22/07 09:58

> AM

> > > >

> > > > Here is the current version of the simplified treatment

> approach

> > > > based on the glutathione depletion--methylation cycle block

> > > > hypothesis.

> > > >

> > > > All the supplements can be obtained from

> > > http://www.holisticheal.com,

> > > > or you can obtain them elsewhere. The cost is a little over

> $2.00

> > > > per day for all the supplements at the dosages suggested

below.

> > > >

> > > > These supplements and dosages have been selected by Dr. Amy

> Yasko

> > > as

> > > > part of her complete treatment approach, as described in her

> > > > book " The Puzzle of Autism. " Substitutions or changes in

> dosages

> > > may

> > > > not have the same effect as the combination of supplements

and

> > > > dosages suggested. It's not wise to raise the dosages, at

least

> > for

> > > > a few weeks, because this can bring on detox at an intensity

> that

> > > is

> > > > difficult to tolerate. Please be patient and take it easy!

> > > >

> > > > Here are the five supplements:

> > > >

> > > > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

> > > >

> > > > 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

> > > >

> > > > 3. (up to) 2 tablets (It's best to start with ¼ tablet and

work

> > up

> > > as

> > > > tolerated) Complete Vitamin and Neurological Health Formula

> > > (Holistic

> > > > Health Consultants)

> > > >

> > > > 4. one softgel capsule Phosphatidyl Serine Complex

> > > >

> > > > 5. one sublingual lozenge Perque B12

> > > >

> > > > The first two supplement tablets can be difficult to break

into

> > > > quarters. An alternative is to crush them into powders, mix

the

> > > > powders together, and divide the powders into quarters using

a

> > > knife

> > > > and a flat surface. The powders can be taken orally with

water,

> > > with

> > > > or without food, and do not taste bad.

> > > >

> > > > Since some questions have been asked about what ingredients

are

> > > > essential, and since some of the people appear to be taking

> > > > augmented versions of the simplified GD-MCB treatment

approach

> > that

> > > I

> > > > wrote about in my January treatment paper, I want to give you

> > some

> > > > history and some comments about that to help you with your

own

> > > > choices about what to take. There's nothing proprietary about

> > what

> > > > I've written. I would just like to see people get healthy.

> > > >

> > > > I have been trying to figure out CFS for about 10 years,

since

> a

> > > > friend of my wife and myself developed it and wasn't given

any

> > hope

> > > > by

> > > > her doctor. I started studying biochemistry and physiology,

> > joined

> > > > some CFS internet lists, started using PubMed to study the

> > > published

> > > > literature, went to the conferences, got Dr. Cheney's tapes,

> etc.

> > > In

> > > > 1999 I picked up on Dr. Cheney's observation that many of his

> > > > patients were depleted in glutathione. When I learned of all

> the

> > > > things that glutathione normally does, and saw that many of

> these

> > > > tied in with the symptoms of CFS, I became convinced that

this

> is

> > a

> > > > fairly fundamental aspect of the pathophysiology of CFS. So

for

> > > > several years I encouraged PWCs to build their glutathione by

> > > various

> > > > means. This helped quite a few, but it was not a cure for

most.

> > It

> > > > was just a temporary help. Some couldn't tolerate it at all.

In

> > the

> > > > fall of 2004 I reported this at the AACFS conference in

> Madison,

> > > WI.

> > > > You can find that poster paper at the phoenix-cfs.com site,

> under

> > > > research.

> > > >

> > > > Then in late 2004, a paper came out by S. Jill et al.

on

> > > > autism. I learned for the first time that glutathione was

> > depleted

> > > in

> > > > autistic kids, and that this was tied to problem earlier in

the

> > > > sulfur metabolism, in the methylation cycle. This was a big

> BINGO

> > > for

> > > > me. It looked as though the same thing was happening in CFS,

> and

> > > now

> > > > I knew why PWCs could not build up their glutathione levels

on

> a

> > > > permanent basis by the methods I had been advocating.

> > > >

> > > > I went to the Long Beach DAN! conference and learned more

about

> > > > autism, and I became more convinced that we were dealing with

> the

> > > > same mechanism.

> > > >

> > > > I started suggesting some DAN! treatments to the PWCs, using

> the

> > > > Pangborn and Baker book, which is an excellent background

book

> on

> > > > this, by the way, and I recommend it. Well, the people who

> > > > tried this felt somewhat better at first, but then things

> turned

> > > > south for them. Meanwhile, I learned about Amy Yasko's

approach

> > in

> > > > autism, and I decided that I liked it better, because it

> started

> > at

> > > > the genetic level, and built the biochemistry on top of that,

> > > dealing

> > > > with people individually based on their genetic variations.

So

> > > about

> > > > a year ago I started encouraging PWCs to try Amy's approach.

> > > >

> > > > Amy's approach is not simple, easy, quick or cheap, and it

has

> > not

> > > > been easy for PWCs to do it, but the people doing it have

> > > experienced

> > > > benefit and are continuing with it.

> > > >

> > > > For the 2007 IACFS conference, I decided to submit another

> paper,

> > > > this time giving the rationale for a methylation block in

CFS,

> > > > connected to the glutathione depletion. It was accepted, but

> > again

> > > > only as a poster paper, so I printed up a lot of copies of it

> and

> > > did

> > > > a personal sales job on as many people at the conference as I

> was

> > > > able. One clinician asked me to write up a

> > > > description of treatment based on this hypothesis. Later in

> > January

> > > I

> > > > emailed him a treatment writeup, which is what is on the

> internet

> > > > (also at www.phoenix-cfs.com, under Research). In

> > > > writing this, I knew that the full Yasko treatment approach

is

> > > > probably not going to be practical for most clinicians. Amy

has

> > > > written me that she has not been able to interest many in

doing

> > > what

> > > > it takes to get up to speed on it and to apply it in

individual

> > > > cases. They just don't have the time, and frankly,

> > > > many have told me that they do not find biochemistry very

easy

> to

> > > > assimilate.

> > > >

> > > > So I decided to try including a simpler approach in addition

to

> > > > describing the full Yasko treatment approach. In doing so, I

> > asked

> > > > Trina in the cfs_yasko internet group for help, since she is

> very

> > > > knowledgeable about the Yasko treatment approach and is using

> it

> > > > herself. She pointed out some problems with what I had in my

> > draft,

> > > > and then

> > > > suggested a better approach, which I adopted substantially.

The

> > > > simplified approach I put in my treatment article is

essentilly

> > > what

> > > > Trina suggested, because it made a lot of sense to me. So I

> must

> > > give

> > > > the credit for this to her. She also suggested including

> > > nucleotides,

> > > > but I left them out because there are some in the complete

> multi

> > > (now

> > > > called the General multi).

> > > >

> > > > O.K., so now what do each of the ingredients do, and how

> > important

> > > is

> > > > each one?

> > > >

> > > > FolaPro--This is in there because a lot of PWCs have a SNP in

> > their

> > > > MTHFR enzyme that affects the production of 5-

> > > methyltetrahydrofolate,

> > > > which is the same as FolaPro. This form of folate is the one

> used

> > > by

> > > > the methionine synthase enzyme, and that's the enzyme that

> > appears

> > > to

> > > > be blocked in many or most cases of CFS. If a person had

their

> > > > genetics characterized, as in the full Yasko approach, they

> would

> > > > know for sure whether they needed this one, but in the

> simplified

> > > > approach we just suggest giving to everyone.

> > > >

> > > > Intrinsic B12/folate--This one has 3 forms of folate--

FolaPro,

> > > > folinic acid and folic acid. It also has some cyano-B12 and

> some

> > > > intrinsic factor as well as some other things. The folinic is

> > > helpful

> > > > because some people can't use ordinary folic acid well, as a

> > result

> > > > of genetic issues. Also, this helps to supply forms of folate

> > that

> > > > will make up for the low tetrahydrofolate resulting from the

> > block

> > > in

> > > > methionine synthase. This enzyme normally converts 5-

> > > > methytetrahydrofolate to tetrahydrofolate, which is needed in

> > other

> > > > reactions. This supplement also has some intrinsic factor and

> > some

> > > > ordinary B12 supplement to help those who have a type of

> > pernicious

> > > > anemia that results from low production of intrinsic factor

in

> > the

> > > > stomach and which prevents them from absorbing B12 in the

gut.

> > B12

> > > is

> > > > also needed by methionine synthase, in the form of

> > methylcobalamin,

> > > > but this supplement has cyanocobalamin, which must be

converted

> > in

> > > > the body by glutathione and SAMe to form methylcobalamin. As

> > > > glutathione and SAMe come up, this should become more

> effective.

> > > >

> > > > Complete vitamin and ultra-antioxidant (now called the

General

> > > > Vitamin and Neurological Health Formula)--This is Amy Yasko's

> > basic

> > > > high-

> > > > potency general nutritional supplement. This is kind of a

> > > foundation

> > > > for the biochemistry in general. However, I think it's better

> for

> > > > PWCs than other general supplements, because it has

particular

> > > things

> > > > needed for dealing with a methylation cycle block, including

> some

> > > TMG

> > > > and sulfur metabolism supplements as well as nucleotides. It

is

> > > also

> > > > high on magnesium and low on calcium, and has no iron or

> copper.

> > So

> > > I

> > > > don't think other general supplements do everything this one

> > does,

> > > > and I think it's important in the treatment.

> > > > The TMG helps to get the shortcut pathway in the methylation

> > cycle

> > > > going, and that helps to build SAMe, which is needed to get

the

> > > > methionine synthase reaction going. The nucleotides will help

> to

> > > > supply RNA and DNA for new cells until the folate cycle is

> > working

> > > > right again.

> > > >

> > > > Phosphatidylserine complex--This has various phosphatidyls in

> it,

> > > > which will help repair damaged membranes, including those in

> > cells

> > > of

> > > > the brain and nervous system. It also has some choline, which

> can

> > > be

> > > > converted to TMG (betaine) in the body, to help start the

> > shortcut

> > > > pathway.

> > > >

> > > > Perque B12--This is a hefty dose of sublingual

> hydroxocobalamin.

> > As

> > > I

> > > > said above, B12 is needed to get methionine synthase going.

> > > > Methylcobalamin is actually the form needed, but some people

> > cannot

> > > > tolerate it for genetic reasons, and I'm also concerned that

> > people

> > > > with high body burdens of mercury could move mercury into the

> > brain

> > > > if they take too much methylcobalamin. Methylcobalamin is the

> > only

> > > > substance in biological systems that can methylate mercury,

and

> > > > methylmercury can cross the blood-brain barrier. This

> supplement

> > is

> > > > sublingual to compensate for poor B12 absorption in the gut

of

> > many

> > > > people.

> > > >

> > > > There are also two others that were in the earlier version of

> the

> > > > simplified approach:

> > > >

> > > > SAMe--This is normally part of the methylation cycle.

Depending

> > on

> > > > genetic variations (SNPs or polymorphisms) some people can't

> > > tolerate

> > > > much of this, and some need more. The dosage is a compromise.

> If

> > > > people can't tolerate this, they should leave it out, because

> > > > stimulating the shortcut pathway, using TMG and choline in

the

> > > other

> > > > supplements) will probably make enough for them.

> > > >

> > > > Methylation Support Nutriswitch Formula--This is a mixture of

> > RNAs

> > > > that is designed to help the methylation cycle. It is

somewhat

> > > > expensive, and is not essential, but is helpful and

worthwhile

> if

> > > > people can afford it.

> > > >

> > > > I do think that the forms of

> > > > folate and B12 are probably essential, because they go after

> the

> > > > basic problem in CFS, in my opinion. I think the General

> > supplement

> > > > is important, and, and I think that some way to stimulate the

> > > > shortcut is important, also. SAMe will help some people but

> > perhaps

> > > > not be tolerated by others, and if not, can be left out. The

> > > > Methylation Support formula is helpful, but could be left

out.

> > > >

> > > > Adding glutathione support will help some people, as will

> adding

> > > > molybdenum. As more things are added, though, we are moving

> > toward

> > > > the full Yasko approach, which is fine, but it is more

> > complicated

> > > > and expensive, too. Maybe we should view this simplified

> approach

> > > as

> > > > the front door to the full Yasko approach. It might work fine

> by

> > > > itself for some people, but for others, maybe they should

look

> at

> > > The

> > > > Puzzle of Autism, sold on www.Amazon.com, to see what else

> there

> > > > might

> > > > help them. If the simplified approach seems to help to some

> > degree,

> > > > and it catches your attention for that reason, but it still

> > doesn't

> > > > do the whole job for you, then you could look further at the

> the

> > > full

> > > > Yasko treatment. At least then you would have some reason to

> dig

> > > into

> > > > it. Otherwise, it looks pretty daunting to a lot of PWCs.

> > > >

> > > > Rich

> > > >

> > >

> >

>

[Guest guest]

Tony, genetic problems haven't multiplied but environmental problems

have. So maybe people with certain genes are more susceptible to

these problems.

- Kate

On May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:

> Rich

> Can you stop using the words genetic problems, because I'm ready to

> throw prophanities at you!!!!!!!!!!!

> Myself, alongside many smnart scientists, are not comfortanble that

> genetic problems all of a sudden multiplied a thousand fold to give

> you fukwits a platform to throw that at us ill folk.

> cheers tony

>

[Guest guest]

Did you guys see that news special, "What Americans Worry About". The last 15 minutes or so went down the list of everything we're freaked out about, and the remarkable thing was that most of those things are actually better now than they were 50 years ago. I'm talking crime, sickness, pollution, (almost every category, actually). Surprisingly, due to much stricter regulation governing pollution and sewage, etc., our environment & air quality is actually much cleaner than it was a few decades ago. Yes, our food is overly processed, and there's a lot of chemical and electrical stuff in our environments that are fairly new, and I AM a big advocate for protecting our environment, BUT on the other hand, we don't have raw sewage running in the streets, or docs going from patient to patient without goves, etc. So I sometimes have to question whether our fears are a bit more irrational than not. Simply

a result of our instinct for self preservation through avoiding anything that appears dangerous? One thing I know, every generation thinks things are worse than the last, when in truth, they are simply evolving. To me, one big factor impacting our health would possibly be improved transportation internationally and how we are affected by that, especially when it comes to our food supply (not to mention improved refrigeration and preservation of our food in transit which enables it to come from further away). We are exposed to germs today that we probably never would have encountered in the past. Perhaps that's where the problem lies? All kinds of laborers in other countries and states are handling our food, plus international travel by ordinary people is so common these days. In the past, a new invading culture could nearly wipe out an existing one

simply with the bugs they carried with them. Even here in California, until fairly recently it was very common to cross the border and end up with a nasty gastrointestinal upset because of the different bugs down there. Recently, people have almost died from bacteria contaminated spinach as well as animals being debilitated or killed by ingredients in their pet food. (The thing that surprises me about that is that it has supposedly happened so rarely.) Think about what we're eating and where it comes from, who's handled it on its journey to us, etc. Think about all the people who've handled the same grocery cart you did at the grocery store. Who was in the bathroom before you were? The hotel room (recent studies show they are heavily contaminated with germs)? Who tried on the shoes you tried on, who worked out before you at the gym or showered in the locker room, or handled the DVD before you

rented it, or read the magazine in the waiting room? It's no longer just our local villagers and common bugs we're dealing with, it could be people from anywhere in the world carrying who knows what? So maybe we haven't yet adapted "genetically" to some of these invaders, but does that mean our genes have become faulty? Or is it that until now, they just haven't had a reason to adapt? And until our genes do adapt, as it seems they usually do even in the most severe cases of contagious disease, should we focus all our attention on fixing our genes, which Mother Nature will most likely do anyway, or should we perhaps try to fight the more quickly adapting bugs that have the upper hand and are killing us right now? penny Kate <KateDunlay@...> wrote: Tony, genetic problems haven't multiplied but environmental problems have. So maybe people with certain genes are more susceptible to these problems.- KateOn May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:> Rich> Can you stop using the words genetic problems, because I'm ready to> throw prophanities at you!!!!!!!!!!!> Myself, alongside many smnart scientists, are not comfortanble that> genetic problems all of a sudden multiplied a thousand fold to give> you fukwits a platform to

throw that at us ill folk.> cheers tony>

[Guest guest]

I agree that now is probably a good time to be living in general, and

we've outlawed some of the worst environmental pollutants that we

know about. However, I think some of the new substances in our

environment could be affecting us in unknown ways. We can't know

until they've been around a while and studied for long-term exposure.

Some plastics are suspect, for instance. Also, we do stir up a lot of

mercury and other heavy metals. I even worry about the new compact

fluorescent light bulbs that save so much energy. The amount of

mercury vapor in them is very very small, but there are factories

somewhere making them, and probably somebody is getting exposed.

I know testing of new chemicals is pretty lame in Canada and I

suspect it's hard to keep up with in the US too. There's so much

economic pressure to just let things through the system.

I've always tried to avoid flame retardants and dirt repellants and

non-stick pans because they all sounded suspicious. Low and behold,

they turned out to be not so great. I see all sorts of warnings about

chemicals in shampoo and personal care products, but I haven't really

looked into them in depth. When I buy the more organic type of

shampoos, my daughter complains because they don't work as well as

the others! Hair frizz, you know.

- Kate

On May 28, 2007, at 11:35 AM, Penny Houle wrote:

> Did you guys see that news special, " What Americans Worry About " .

> The last 15 minutes or so went down the list of everything we're

> freaked out about, and the remarkable thing was that most of those

> things are actually better now than they were 50 years ago. I'm

> talking crime, sickness, pollution, (almost every category,

> actually). Surprisingly, due to much stricter regulation governing

> pollution and sewage, etc., our environment & air quality is

> actually much cleaner than it was a few decades ago.

>

> Yes, our food is overly processed, and there's a lot of chemical

> and electrical stuff in our environments that are fairly new, and I

> AM a big advocate for protecting our environment, BUT on the other

> hand, we don't have raw sewage running in the streets, or docs

> going from patient to patient without goves, etc.

[Guest guest]

Kate

I look at these conditions as amplified versions of what just about

everyone else in the society suffers from.Many have got symptoms of

fatigue, joint pain, even age related issues are INDICATIONS of our

disease symptoms.. We just got there HEAPS QIUICKER.. why would you

associate that with genetic defect? Why when someone suffers

whiplash, or has surgery, do they end up with fibromyalgia? IS THAT

GENETIC? Wouldn't you think the group of symptoms that got them onto

the operating table may be more what you would like the focus to be

placed upon.

You've got to wake up and get LOUD because being fed this crap with a

shovel and buying into it is sooo dangerous, it will push any chance

of good health reaching anyone back another 5 years.

Can you understand the simplicity of making up questionaires and

accumulating what went wrong when people tipped over. The most, and

another interesting aspect, was the course of antibiotics that had

been taken by many just previous to there health downturn ..Imagine

if you attacked/damaged/annoyed 1 trillion bacteria making them jump

at every threat and neutralising it with there toxic defence

mechanisms ..YOU COULD CALL IT A HERX, OR YOU MAY JUST WANT TO

UNDERSTAND THAT YOUR BEING FILLED WITH TOXINS BY THESE NEWLY MODIFIED

OPPURTUNISTS...

>

> > Rich

> > Can you stop using the words genetic problems, because I'm ready

to

> > throw prophanities at you!!!!!!!!!!!

> > Myself, alongside many smnart scientists, are not comfortanble

that

> > genetic problems all of a sudden multiplied a thousand fold to

give

> > you fukwits a platform to throw that at us ill folk.

> > cheers tony

> >

>

[Guest guest]

It might be a good time to be living if not for the terrorists, the

nuclear weapons in North Korea, and, oh, need I mention the weapons

proliferation in China aimed at Taiwan, and the civil war in Lebanon,

and the continued extermination of humans in Darfur...but I digress.

a

>

> I agree that now is probably a good time to be living in general,

and

> we've outlawed some of the worst environmental pollutants that we

> know about. However, I think some of the new substances in our

> environment could be affecting us in unknown ways. We can't know

> until they've been around a while and studied for long-term

exposure.

> Some plastics are suspect, for instance. Also, we do stir up a lot

of

> mercury and other heavy metals. I even worry about the new compact

> fluorescent light bulbs that save so much energy. The amount of

> mercury vapor in them is very very small, but there are factories

> somewhere making them, and probably somebody is getting exposed.

>

> I know testing of new chemicals is pretty lame in Canada and I

> suspect it's hard to keep up with in the US too. There's so much

> economic pressure to just let things through the system.

>

> I've always tried to avoid flame retardants and dirt repellants

and

> non-stick pans because they all sounded suspicious. Low and

behold,

> they turned out to be not so great. I see all sorts of warnings

about

> chemicals in shampoo and personal care products, but I haven't

really

> looked into them in depth. When I buy the more organic type of

> shampoos, my daughter complains because they don't work as well as

> the others! Hair frizz, you know.

>

> - Kate

>

> On May 28, 2007, at 11:35 AM, Penny Houle wrote:

>

> > Did you guys see that news special, " What Americans Worry

About " .

> > The last 15 minutes or so went down the list of everything we're

> > freaked out about, and the remarkable thing was that most of

those

> > things are actually better now than they were 50 years ago. I'm

> > talking crime, sickness, pollution, (almost every category,

> > actually). Surprisingly, due to much stricter regulation

governing

> > pollution and sewage, etc., our environment & air quality is

> > actually much cleaner than it was a few decades ago.

> >

> > Yes, our food is overly processed, and there's a lot of chemical

> > and electrical stuff in our environments that are fairly new, and

I

> > AM a big advocate for protecting our environment, BUT on the

other

> > hand, we don't have raw sewage running in the streets, or docs

> > going from patient to patient without goves, etc.

>

[Guest guest]

I think this whole discussion

of genetics and environmental matters is getting quite distorted and

confused.

It's simplistic to either suggest that all problems are genetic or that

genetics can't possibly play a significant role. It is not so much a

matter of gene mutation as one of gene expression. Genes can be

incorrect and cause problems, but they can also be correct, but express

in bizarre ways because of screwed up protein folding and/or

environmental influences (including pathogens). I am not entirely

convinced that sub-fields such as nutrigenomics (e.g., Yasko) are

mature enough to provide solid guidance that we can have confidence in,

but I would not at all discount the value of these avenues of inquiry,

no matter what one thinks of chronic / multiple infection.

As to environment, there are ways in which it has improved,

simplistically speaking ... and there are hopeful developments in just

the past year or two where it has suddenly become fashionable for

businesses to get greener (mainly, because they finally figured out

that it impacts their bottom line in concrete ways, and because there

is better enabling green technology available). However, we've still

introduced thousands of synthetic chemicals into the environment in the

past two generations or so and we've barely studied their combined

effects. We've studied a few individually but are only beginning to

figure out that the synergy of two or three or a half dozen chemicals

is very much more than the sum of their parts. We are also messing

with nature in ways we never have before.

In addition, I'm totally convinced that many chronic health problems

have their ultimate genesis in environmental damage to the body that

may have happened years or decades previous to onset, and there is no

obvious way to connect the dots. Whether that matters in terms of

curing the eventual symptoms is debatable, but the farther you can get

from synthetics and processed foods, the better off your health will be

in the long run.

I doubt very much that bugs would be such a huge problem if they were

not aided and abetted by genetic vulnerabilities and environmental

assaults. All three -- genetics, environment, and pathogens -- are

interrelated and it's the height of foolishness to either ignore any

one of them, or to focus exclusively on any one of them. They all do a

complex dance together.

It's human nature to want simple explanations, but alas, nature does

not cooperate with that desire.

--Bob

Penny Houle wrote:

Did you guys see that news special, "What Americans Worry

About". The last 15 minutes or so went down the list of everything

we're freaked out about, and the remarkable thing was that most of

those things are actually better now than they were 50 years ago. I'm

talking crime, sickness, pollution, (almost every category, actually).

Surprisingly, due to much stricter regulation governing pollution and

sewage, etc., our environment & air quality is actually much

cleaner than it was a few decades ago.

Yes, our food is overly processed, and there's a lot of chemical

and electrical stuff in our environments that are fairly new, and I

AM a big advocate for protecting our environment, BUT on the other

hand, we don't have raw sewage running in the streets, or docs going

from patient to patient without goves, etc. So I sometimes have to

question whether our fears are a bit more irrational than not. & nbs

p;Simply a result of our instinct for self preservation through

avoiding anything that appears dangerous? One thing I know, every

generation thinks things are worse than the last, when in truth, they

are simply evolving.

To me, one big factor impacting our health would possibly be

improved transportation internationally and how we are affected by

that, especially when it comes to our food supply (not to

mention improved refrigeration and preservation of our food in transit

which enables it to come from further away). We are exposed to germs

today that we probably never would have encountered in the past.

Perhaps that's where the problem lies? All kinds of laborers in other

countries and states are handling our food, plus international travel

by ordinary people is so common these days. In the past, a new invading

culture could nearly wipe out an existing one simply with the bugs they

carried with them. Even here in California, until fairly recently it

was very common to cross the border and end up with a nasty

gastrointestinal upset because of the different bugs down there.

Recently, people have almost died from bacteria contaminated spinach as

well as animals being debilitated or killed by ingredients in their pet

food. (The thing that surprises me about that is that it has

supposedly happened so rarely.)

Think about what we're eating and where it comes from, who's

handled it on its journey to us, etc. Think about all the people

who've handled the same grocery cart you did at the grocery store. Who

was in the bathroom before you were? The hotel room (recent studies

show they are heavily contaminated with germs)? Who tried on the shoes

you tried on, who worked out before you at the gym or showered in the

locker room, or handled the DVD before you rented it, or read the

magazine in the waiting room? It's no longer just our local villagers

and common bugs we're dealing with, it could be people from anywhere in

the world carrying who knows what?

So maybe we haven't yet adapted "genetically" to some of these

invaders, but does that mean our genes have become faulty? Or is it

that until now, they just haven't had a reason to adapt? And until our

genes do adapt, as it seems they usually do even in the most

severe cases of contagious disease, should we focus all our

attention on fixing our genes, which Mother Nature will most likely do

anyway, or should we perhaps try to fight the more quickly adapting

bugs that have the upper hand and are killing us right

now?

penny

Kate <KateDunlayhfx (DOT) eastlink.ca> wrote:

Tony, genetic problems haven't multiplied but environmental

problems

have. So maybe people with certain genes are more susceptible to

these problems.

- Kate

On May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:

> Rich

> Can you stop using the words genetic problems, because I'm ready to

> throw prophanities at you!!!!!!!!!!!

> Myself, alongside many smnart scientists, are not comfortanble that

> genetic problems all of a sudden multiplied a thousand fold to give

> you fukwits a platform to throw that at us ill folk.

> cheers tony

>

[Guest guest]

Bob, I agree with you. But the approach is so one-sided right now, that someone has to advocate for the other side. Everyone wants to blame genetics and the immune system and almost everyone ignores or fails to recognize the remarkable adaptability of the organisms we're fighting. We haven't made much progress since the ulcer fiasco. So much evidence but no one paid attention until a researcher almost killed himself to prove that ulcers were caused by bacteria and could be treated with antibiotics. Do I believe that our inidividual makeups, chemical exposure and bad diets, play a role. Most definitely YES! But to blame everything on those things and ignore the amazing capabilities of these bugs just drives me nuts. pennyBob Grommes <bob@...> wrote: I think this whole discussion of genetics and environmental matters is getting quite distorted and confused.It's simplistic to either suggest that all problems are genetic or that genetics can't possibly play a significant role. It is not so much a matter of gene mutation as one of gene expression. Genes can be incorrect and cause problems, but they can also be correct, but express in bizarre ways because of screwed up protein folding and/or environmental influences (including pathogens). I am not entirely convinced that sub-fields

such as nutrigenomics (e.g., Yasko) are mature enough to provide solid guidance that we can have confidence in, but I would not at all discount the value of these avenues of inquiry, no matter what one thinks of chronic / multiple infection.As to environment, there are ways in which it has improved, simplistically speaking ... and there are hopeful developments in just the past year or two where it has suddenly become fashionable for businesses to get greener (mainly, because they finally figured out that it impacts their bottom line in concrete ways, and because there is better enabling green technology available). However, we've still introduced thousands of synthetic chemicals into the environment in the past two generations or so and we've barely studied their combined effects. We've studied a few individually but are only beginning to figure out that the synergy of two or three or a half dozen chemicals is very much more than the sum of their

parts. We are also messing with nature in ways we never have before.In addition, I'm totally convinced that many chronic health problems have their ultimate genesis in environmental damage to the body that may have happened years or decades previous to onset, and there is no obvious way to connect the dots. Whether that matters in terms of curing the eventual symptoms is debatable, but the farther you can get from synthetics and processed foods, the better off your health will be in the long run.I doubt very much that bugs would be such a huge problem if they were not aided and abetted by genetic vulnerabilities and environmental assaults. All three -- genetics, environment, and pathogens -- are interrelated and it's the height of foolishness to either ignore any one of them, or to focus exclusively on any one of them. They all do a complex dance together.It's human nature to want simple explanations, but alas, nature does

not cooperate with that desire.--BobPenny Houle wrote: Did you guys see that news special, "What Americans Worry About". The last 15 minutes or so went down the list of everything we're freaked out about, and the remarkable thing was that most of those things are actually better now than they were 50 years ago. I'm talking crime, sickness, pollution, (almost every category, actually). Surprisingly, due to much stricter regulation governing pollution and sewage, etc., our environment & air quality is actually much cleaner than it was a few decades ago. Yes, our food is overly processed, and there's a lot of chemical and electrical stuff in our environments that are fairly new, and I AM a big advocate for protecting our environment, BUT on the other hand, we don't have

raw sewage running in the streets, or docs going from patient to patient without goves, etc. So I sometimes have to question whether our fears are a bit more irrational than not. & nbs p;Simply a result of our instinct for self preservation through avoiding anything that appears dangerous? One thing I know, every generation thinks things are worse than the last, when in truth, they are simply evolving. To me, one big factor impacting our health would possibly be improved transportation internationally and how we are affected by that, especially when it comes to our food supply (not to mention improved refrigeration and preservation of our food in transit which enables it to come from further away). We are exposed to germs today that we probably never would have encountered in the past. Perhaps that's where the problem lies? All kinds of laborers in other

countries and states are handling our food, plus international travel by ordinary people is so common these days. In the past, a new invading culture could nearly wipe out an existing one simply with the bugs they carried with them. Even here in California, until fairly recently it was very common to cross the border and end up with a nasty gastrointestinal upset because of the different bugs down there. Recently, people have almost died from bacteria contaminated spinach as well as animals being debilitated or killed by ingredients in their pet food. (The thing that surprises me about that is that it has supposedly happened so rarely.) Think about what we're eating and where it comes from, who's handled it on its journey to us, etc. Think about all the people who've handled the same grocery cart you did at the grocery store. Who was in the bathroom before you were? The hotel room (recent

studies show they are heavily contaminated with germs)? Who tried on the shoes you tried on, who worked out before you at the gym or showered in the locker room, or handled the DVD before you rented it, or read the magazine in the waiting room? It's no longer just our local villagers and common bugs we're dealing with, it could be people from anywhere in the world carrying who knows what? So maybe we haven't yet adapted "genetically" to some of these invaders, but does that mean our genes have become faulty? Or is it that until now, they just haven't had a reason to adapt? And until our genes do adapt, as it seems they usually do even in the most severe cases of contagious disease, should we focus all our attention on fixing our genes, which Mother Nature will most likely do anyway, or should we perhaps try to fight the more quickly adapting bugs that have the

upper hand and are killing us right now? penny Kate <KateDunlayhfx (DOT) eastlink.ca> wrote: Tony, genetic problems haven't multiplied but environmental problems have. So maybe people with certain genes are more susceptible to these problems.- KateOn May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:> Rich> Can you stop using the words genetic problems, because I'm ready to> throw prophanities at you!!!!!!!!!!!> Myself, alongside many smnart scientists, are not comfortanble that> genetic problems all of a sudden multiplied a thousand fold to give> you fukwits a platform to throw that at us ill folk.> cheers tony>

[Guest guest]

I understand the impulse,

Penny, but I think it can do just as much damage to your cause to come

off all buy-eyed (pun intended) for one facet of chronic illness, and

one solution to it. I don't see a conflict between flogging the

virulence and tenacity of pathogens and the need for aggressive

treatment, while also acknowledging that tenacity could be caused or

exacerbated by disregulated immune systems, deranged protein synthesis,

environmental toxins, impaired detox pathways and yes, even genetic

vulnerability in some form.

I'll grant you that, assuming your physiology can still handle the

die-off, the pathogen problem is arguably the most actionable one right

now, but the insights from other fields can inform the assault to a

significant degree, I think.

I'll go back into lurk mode now; Tony, feel free to apply the f-label

to me or whatever you need to do to blow off steam ;-)

--Bob

Penny Houle wrote:

Bob, I agree with you. But the approach is so one-sided right

now, that someone has to advocate for the other side. Everyone wants to

blame genetics and the immune system and almost everyone ignores or

fails to recognize the remarkable adaptability of the organisms we're

fighting. We haven't made much progress since the ulcer fiasco. So much

evidence but no one paid attention until a researcher almost killed

himself to prove that ulcers were caused by bacteria and could be

treated with antibiotics.

Do I believe that our inidividual makeups, chemical exposure and

bad diets, play a role. Most definitely YES!

But to blame everything on those things and ignore the amazing

capabilities of these bugs just drives me nuts.

penny

Bob Grommes <bobbobgrommes> wrote:

I think this whole

discussion of genetics and environmental matters is getting quite

distorted and confused.

It's simplistic to either suggest that all problems are genetic or that

genetics can't possibly play a significant role. It is not so much a

matter of gene mutation as one of gene expression. Genes can be

incorrect and cause problems, but they can also be correct, but express

in bizarre ways because of screwed up protein folding and/or

environmental influences (including pathogens). I am not entirely

convinced that sub-fields such as nutrigenomics (e.g., Yasko) are

mature enough to provide solid guidance that we can have confidence in,

but I would not at all discount the value of these avenues of inquiry,

no matter what one thinks of chronic / multiple infection.

As to environment, there are ways in which it has improved,

simplistically speaking ... and there are hopeful developments in just

the past year or two where it has suddenly become fashionable for

businesses to get greener (mainly, because they finally figured out

that it impacts their bottom line in concrete ways, and because there

is better enabling green technology available). However, we've still

introduced thousands of synthetic chemicals into the environment in the

past two generations or so and we've barely studied their combined

effects. We've studied a few individually but are only beginning to

figure out that the synergy of two or three or a half dozen chemicals

is very much more than the sum of their parts. We are also messing

with nature in ways we never have before.

In addition, I'm totally convinced that many chronic health problems

have their ultimate genesis in environmental damage to the body that

may have happened years or decades previous to onset, and there is no

obvious way to connect the dots. Whether that matters in terms of

curing the eventual symptoms is debatable, but the farther you can get

from synthetics and processed foods, the better off your health will be

in the long run.

I doubt very much that bugs would be such a huge problem if they were

not aided and abetted by genetic vulnerabilities and environmental

assaults. All three -- genetics, environment, and pathogens -- are

interrelated and it's the height of foolishness to either ignore any

one of them, or to focus exclusively on any one of them. They all do a

complex dance together.

It's human nature to want simple explanations, but alas, nature does

not cooperate with that desire.

--Bob

Penny Houle wrote:

Did you guys see that news special, "What Americans Worry

About". The last 15 minutes or so went down the list of everything

we're freaked out about, and the remarkable thing was that most of

those things are actually better now than they were 50 years ago. I'm

talking crime, sickness, pollution, (almost every category, actually).

Surprisingly, due to much stricter regulation governing pollution and

sewage, etc., our environment & air quality is actually much

cleaner than it was a few decades ago.

Yes, our food is overly processed, and there's a lot of

chemical and electrical stuff in our environments that are fairly new,

and I AM a big advocate for protecting our environment, BUT on the

other hand, we don't have raw sewage running in the streets, or docs

going from patient to patient without goves, etc. So I sometimes have

to question whether our fears are a bit more irrational than

not. & nbs p;Simply a result of our instinct for self

preservation through avoiding anything that appears dangerous? One

thing I know, every generation thinks things are worse than the last,

when in truth, they are simply evolving.

To me, one big factor impacting our health would possibly

be improved transportation internationally and how we are affected by

that, especially when it comes to our food supply (not to

mention improved refrigeration and preservation of our food in transit

which enables it to come from further away). We are exposed to germs

today that we probably never would have encountered in the past.

Perhaps that's where the problem lies? All kinds of laborers in other

countries and states are handling our food, plus international travel

by ordinary people is so common these days. In the past, a new invading

culture could nearly wipe out an existing one simply with the bugs they

carried with them. Even here in California, until fairly recently it

was very common to cross the border and end up with a nasty

gastrointestinal upset because of the different bugs down there.

Recently, people have almost died from bacteria contaminated spinach as

well as animals being debilitated or killed by ingredients in their pet

food. (The thing that surprises me about that is that it has

supposedly happened so rarely.)

Think about what we're eating and where it comes from, who's

handled it on its journey to us, etc. Think about all the people

who've handled the same grocery cart you did at the grocery store. Who

was in the bathroom before you were? The hotel room (recent studies

show they are heavily contaminated with germs)? Who tried on the shoes

you tried on, who worked out before you at the gym or showered in the

locker room, or handled the DVD before you rented it, or read the

magazine in the waiting room? It's no longer just our local villagers

and common bugs we're dealing with, it could be people from anywhere in

the world carrying who knows what?

So maybe we haven't yet adapted "genetically" to some of

these invaders, but does that mean our genes have become faulty? Or is

it that until now, they just haven't had a reason to adapt? And

until our genes do adapt, as it seems they usually do even in

the most severe cases of contagious disease, should we focus all our

attention on fixing our genes, which Mother Nature will most likely do

anyway, or should we perhaps try to fight the more quickly adapting

bugs that have the upper hand and are killing us right

now?

penny

Kate <KateDunlayhfx (DOT) eastlink.ca>

wrote:

Tony, genetic problems haven't multiplied but

environmental problems

have. So maybe people with certain genes are more susceptible to

these problems.

- Kate

On May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:

> Rich

> Can you stop using the words genetic problems, because I'm ready to

> throw prophanities at you!!!!!!!!!!!

> Myself, alongside many smnart scientists, are not comfortanble that

> genetic problems all of a sudden multiplied a thousand fold to give

> you fukwits a platform to throw that at us ill folk.

> cheers tony

>

[Guest guest]

Hah. Destroyed my own

already-lame humor. I meant "Bug-eyed", not "buy-eyed". That latter

is what my wife gets when she spots a good sale, but it's not what I

was trying to evoke here.

--Bob

Bob Grommes wrote:

I understand the impulse,

Penny, but I think it can do just as much damage to your cause to come

off all buy-eyed (pun intended) for one facet of chronic illness, and

one solution to it. I don't see a conflict between flogging the

virulence and tenacity of pathogens and the need for aggressive

treatment, while also acknowledging that tenacity could be caused or

exacerbated by disregulated immune systems, deranged protein synthesis,

environmental toxins, impaired detox pathways and yes, even genetic

vulnerability in some form.

I'll grant you that, assuming your physiology can still handle the

die-off, the pathogen problem is arguably the most actionable one right

now, but the insights from other fields can inform the assault to a

significant degree, I think.

I'll go back into lurk mode now; Tony, feel free to apply the f-label

to me or whatever you need to do to blow off steam ;-)

--Bob

Penny Houle wrote:

Bob, I agree with you. But the approach is so one-sided right

now, that someone has to advocate for the other side. Everyone wants to

blame genetics and the immune system and almost everyone ignores or

fails to recognize the remarkable adaptability of the organisms we're

fighting. We haven't made much progress since the ulcer fiasco. So much

evidence but no one paid attention until a researcher almost killed

himself to prove that ulcers were caused by bacteria and could be

treated with antibiotics.

Do I believe that our inidividual makeups, chemical

exposure and bad diets, play a role. Most

definitely YES!

But to blame everything on those things and ignore the amazing

capabilities of these bugs just drives me nuts.

penny

Bob Grommes <bobbobgrommes> wrote:

I think this whole

discussion of genetics and environmental matters is getting quite

distorted and confused.

It's simplistic to either suggest that all problems are genetic or that

genetics can't possibly play a significant role. It is not so much a

matter of gene mutation as one of gene expression. Genes can be

incorrect and cause problems, but they can also be correct, but express

in bizarre ways because of screwed up protein folding and/or

environmental influences (including pathogens). I am not entirely

convinced that sub-fields such as nutrigenomics (e.g., Yasko) are

mature enough to provide solid guidance that we can have confidence in,

but I would not at all discount the value of these avenues of inquiry,

no matter what one thinks of chronic / multiple infection.

As to environment, there are ways in which it has improved,

simplistically speaking ... and there are hopeful developments in just

the past year or two where it has suddenly become fashionable for

businesses to get greener (mainly, because they finally figured out

that it impacts their bottom line in concrete ways, and because there

is better enabling green technology available). However, we've still

introduced thousands of synthetic chemicals into the environment in the

past two generations or so and we've barely studied their combined

effects. We've studied a few individually but are only beginning to

figure out that the synergy of two or three or a half dozen chemicals

is very much more than the sum of their parts. We are also messing

with nature in ways we never have before.

In addition, I'm totally convinced that many chronic health problems

have their ultimate genesis in environmental damage to the body that

may have happened years or decades previous to onset, and there is no

obvious way to connect the dots. Whether that matters in terms of

curing the eventual symptoms is debatable, but the farther you can get

from synthetics and processed foods, the better off your health will be

in the long run.

I doubt very much that bugs would be such a huge problem if they were

not aided and abetted by genetic vulnerabilities and environmental

assaults. All three -- genetics, environment, and pathogens -- are

interrelated and it's the height of foolishness to either ignore any

one of them, or to focus exclusively on any one of them. They all do a

complex dance together.

It's human nature to want simple explanations, but alas, nature does

not cooperate with that desire.

--Bob

Penny Houle wrote:

Did you guys see that news special, "What Americans Worry

About". The last 15 minutes or so went down the list of everything

we're freaked out about, and the remarkable thing was that most of

those things are actually better now than they were 50 years ago. I'm

talking crime, sickness, pollution, (almost every category, actually).

Surprisingly, due to much stricter regulation governing pollution and

sewage, etc., our environment & air quality is actually much

cleaner than it was a few decades ago.

Yes, our food is overly processed, and there's a lot of

chemical and electrical stuff in our environments that are fairly new,

and I AM a big advocate for protecting our environment, BUT on the

other hand, we don't have raw sewage running in the streets, or docs

going from patient to patient without goves, etc. So I sometimes have

to question whether our fears are a bit more irrational than

not. & nbs p;Simply a result of our instinct for self

preservation through avoiding anything that appears dangerous? One

thing I know, every generation thinks things are worse than the last,

when in truth, they are simply evolving.

To me, one big factor impacting our health would possibly

be improved transportation internationally and how we are affected by

that, especially when it comes to our food supply (not to

mention improved refrigeration and preservation of our food in transit

which enables it to come from further away). We are exposed to germs

today that we probably never would have encountered in the past.

Perhaps that's where the problem lies? All kinds of laborers in other

countries and states are handling our food, plus international travel

by ordinary people is so common these days. In the past, a new invading

culture could nearly wipe out an existing one simply with the bugs they

carried with them. Even here in California, until fairly recently it

was very common to cross the border and end up with a nasty

gastrointestinal upset because of the different bugs down there.

Recently, people have almost died from bacteria contaminated spinach as

well as animals being debilitated or killed by ingredients in their pet

food. (The thing that surprises me about that is that it has

supposedly happened so rarely.)

Think about what we're eating and where it comes from,

who's

handled it on its journey to us, etc. Think about all the people

who've handled the same grocery cart you did at the grocery store. Who

was in the bathroom before you were? The hotel room (recent studies

show they are heavily contaminated with germs)? Who tried on the shoes

you tried on, who worked out before you at the gym or showered in the

locker room, or handled the DVD before you rented it, or read the

magazine in the waiting room? It's no longer just our local villagers

and common bugs we're dealing with, it could be people from anywhere in

the world carrying who knows what?

So maybe we haven't yet adapted "genetically" to some of

these invaders, but does that mean our genes have become faulty? Or is

it that until now, they just haven't had a reason to adapt? And

until our genes do adapt, as it seems they usually do even in

the most severe cases of contagious disease, should we focus all our

attention on fixing our genes, which Mother Nature will most likely do

anyway, or should we perhaps try to fight the more quickly adapting

bugs that have the upper hand and are killing us right

now?

penny

Kate <KateDunlayhfx (DOT) eastlink.ca>

wrote:

Tony, genetic problems haven't multiplied but

environmental problems

have. So maybe people with certain genes are more susceptible to

these problems.

- Kate

On May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:

> Rich

> Can you stop using the words genetic problems, because I'm ready to

> throw prophanities at you!!!!!!!!!!!

> Myself, alongside many smnart scientists, are not comfortanble that

> genetic problems all of a sudden multiplied a thousand fold to give

> you fukwits a platform to throw that at us ill folk.

> cheers tony

>

[Guest guest]

Bob:

I pretty much agree with everything you're saying. I have to be

carefull sometimes because I look at alot of (medical) problems from

an individual standpoint -

not from the viewpoint of most medical physicians - which is from a

PUBLIC health standpoint. WHat to do in certain instances, and even

the though process is different for those two positions.

There are many components that tend to make up any problem- and the

human body is certainly complicated. I just tend to think (as I

know Penny does) that we underestimate the will to live, and the

abilities of bacteria to alter their host to suit them better.

Barb

> >>

> >> > Rich

> >> > Can you stop using the words genetic problems,

because I'm

> >> ready to

> >> > throw prophanities at you!!!!!!!!!!!

> >> > Myself, alongside many smnart scientists, are not

> >> comfortanble that

> >> > genetic problems all of a sudden multiplied a

thousand fold

> >> to give

> >> > you fukwits a platform to throw that at us ill folk.

> >> > cheers tony

> >> >

> >>

> >>

> >

> >

>

[Guest guest]

> better enabling green technology available). However, we've still

> introduced thousands of synthetic chemicals into the environment in the

> past two generations or so and we've barely studied their combined

> effects.

How does that matter, though, unless there are unaccountable disease

increases over those two generations? In fact, if there aren't any

such increases, it pretty much proves that those contaminations are

not a cause of observable disease.

In addition to what I mentioned yesterday, cancer has increased, of

course - but that basically goes away when you correct for the

increased aging we see nowadays, so it's eminently explicable.

[Guest guest]

Bob, I know I can come across sounding one dimensional, but it's kind of ironic don't you think, when most everyone else is as well and no one seems to mind? The problem is, everyone only hears and takes seriously the gene & immune system arguments, and ignores the pathogenity of the organisms themselves. Ask 99 out of 100 people on these forums and they won't know the first thing about infection (other than perhaps what they've heard about lyme, which is a tricky infection to test for or understand, and to be honest doesn't help people's understanding of infection in general very much). These areas people are investing all their energy into are mainly speculative while we've got lots of evidence and information on how infection works, but sadly almost no pwcs are even trying to understand. Time after time the response I hear when someone is

considering abx, is, "which antibiotic should I try", showing they don't get it even in the slightest. I really think the geneticists and immunologists among our population are putting the cart before the horse and pwc are getting worse or perhaps dying in the meantime. I'll say it again, no one believed the ulcer guy, a respected doctor/researcher. He had to take drastic measures, infecting himself, to get anyone to believe him, and do you know that 50% of doctors still don't even consider treating ulcers with abx? And now they're saying that people relapse a few years down the road so maybe there's another cause. Hello? Are they not considering that perhaps the organisms are stronger than they're being given credit for? Why can't anyone see the well documented logic in that? penny Bob Grommes

<bob@...> wrote: I understand the impulse, Penny, but I think it can do just as much damage to your cause to come off all buy-eyed (pun intended) for one facet of chronic illness, and one solution to it. I don't see a conflict between flogging the virulence and tenacity of pathogens and the need for aggressive treatment, while also acknowledging that tenacity could be caused or exacerbated by disregulated immune systems, deranged protein synthesis, environmental toxins,

impaired detox pathways and yes, even genetic vulnerability in some form.I'll grant you that, assuming your physiology can still handle the die-off, the pathogen problem is arguably the most actionable one right now, but the insights from other fields can inform the assault to a significant degree, I think.I'll go back into lurk mode now; Tony, feel free to apply the f-label to me or whatever you need to do to blow off steam ;-)--BobPenny Houle wrote: Bob, I agree with you. But the approach is so one-sided right now, that someone has to advocate for the other side. Everyone wants to blame genetics and the immune system and almost everyone ignores or fails to recognize the remarkable adaptability of the organisms we're fighting. We haven't made much progress since the ulcer fiasco. So much evidence but

no one paid attention until a researcher almost killed himself to prove that ulcers were caused by bacteria and could be treated with antibiotics. Do I believe that our inidividual makeups, chemical exposure and bad diets, play a role. Most definitely YES! But to blame everything on those things and ignore the amazing capabilities of these bugs just drives me nuts. pennyBob Grommes <bobbobgrommes> wrote: I think this whole discussion of genetics and environmental matters is getting quite distorted and confused.It's simplistic to either suggest that all problems are genetic or that genetics can't possibly play a significant role. It is not

so much a matter of gene mutation as one of gene expression. Genes can be incorrect and cause problems, but they can also be correct, but express in bizarre ways because of screwed up protein folding and/or environmental influences (including pathogens). I am not entirely convinced that sub-fields such as nutrigenomics (e.g., Yasko) are mature enough to provide solid guidance that we can have confidence in, but I would not at all discount the value of these avenues of inquiry, no matter what one thinks of chronic / multiple infection.As to environment, there are ways in which it has improved, simplistically speaking ... and there are hopeful developments in just the past year or two where it has suddenly become fashionable for businesses to get greener (mainly, because they finally figured out that it impacts their bottom line in concrete ways, and because there is better enabling green technology available). However, we've still introduced

thousands of synthetic chemicals into the environment in the past two generations or so and we've barely studied their combined effects. We've studied a few individually but are only beginning to figure out that the synergy of two or three or a half dozen chemicals is very much more than the sum of their parts. We are also messing with nature in ways we never have before.In addition, I'm totally convinced that many chronic health problems have their ultimate genesis in environmental damage to the body that may have happened years or decades previous to onset, and there is no obvious way to connect the dots. Whether that matters in terms of curing the eventual symptoms is debatable, but the farther you can get from synthetics and processed foods, the better off your health will be in the long run.I doubt very much that bugs would be such a huge problem if they were not aided and abetted by genetic vulnerabilities and environmental

assaults. All three -- genetics, environment, and pathogens -- are interrelated and it's the height of foolishness to either ignore any one of them, or to focus exclusively on any one of them. They all do a complex dance together.It's human nature to want simple explanations, but alas, nature does not cooperate with that desire.--BobPenny Houle wrote: Did you guys see that news special, "What Americans Worry About". The last 15 minutes or so went down the list of everything we're freaked out about, and the remarkable thing was that most of those things are actually better now than they were 50 years ago. I'm talking crime, sickness, pollution, (almost every category, actually). Surprisingly, due to much stricter regulation governing pollution and sewage, etc., our environment & air quality is

actually much cleaner than it was a few decades ago. Yes, our food is overly processed, and there's a lot of chemical and electrical stuff in our environments that are fairly new, and I AM a big advocate for protecting our environment, BUT on the other hand, we don't have raw sewage running in the streets, or docs going from patient to patient without goves, etc. So I sometimes have to question whether our fears are a bit more irrational than not. & nbs p;Simply a result of our instinct for self preservation through avoiding anything that appears dangerous? One thing I know, every generation thinks things are worse than the last, when in truth, they are simply evolving. To me, one big factor impacting our health would possibly be improved transportation internationally and how we are affected by that, especially when it comes to our food

supply (not to mention improved refrigeration and preservation of our food in transit which enables it to come from further away). We are exposed to germs today that we probably never would have encountered in the past. Perhaps that's where the problem lies? All kinds of laborers in other countries and states are handling our food, plus international travel by ordinary people is so common these days. In the past, a new invading culture could nearly wipe out an existing one simply with the bugs they carried with them. Even here in California, until fairly recently it was very common to cross the border and end up with a nasty gastrointestinal upset because of the different bugs down there. Recently, people have almost died from bacteria contaminated spinach as well as animals being debilitated or killed by ingredients in their pet food. (The thing that surprises me about that is that it has

supposedly happened so rarely.) Think about what we're eating and where it comes from, who's handled it on its journey to us, etc. Think about all the people who've handled the same grocery cart you did at the grocery store. Who was in the bathroom before you were? The hotel room (recent studies show they are heavily contaminated with germs)? Who tried on the shoes you tried on, who worked out before you at the gym or showered in the locker room, or handled the DVD before you rented it, or read the magazine in the waiting room? It's no longer just our local villagers and common bugs we're dealing with, it could be people from anywhere in the world carrying who knows what? So maybe we haven't yet adapted "genetically" to some of these invaders, but does that mean our genes have become faulty? Or is it that until now, they just haven't had a reason to adapt?

And until our genes do adapt, as it seems they usually do even in the most severe cases of contagious disease, should we focus all our attention on fixing our genes, which Mother Nature will most likely do anyway, or should we perhaps try to fight the more quickly adapting bugs that have the upper hand and are killing us right now? penny Kate <KateDunlayhfx (DOT) eastlink.ca> wrote: Tony, genetic problems haven't multiplied but environmental problems have. So maybe people with certain genes are more susceptible to these problems.- KateOn May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:> Rich> Can you stop using the words genetic problems, because I'm ready

to> throw prophanities at you!!!!!!!!!!!> Myself, alongside many smnart scientists, are not comfortanble that> genetic problems all of a sudden multiplied a thousand fold to give> you fukwits a platform to throw that at us ill folk.> cheers tony>

[Guest guest]

I guess I need my bug glasses because I understood what you meant, although "buy eyed" for a "Penny" is probably apropos. :-) pennyBob Grommes <bob@...> wrote: Hah. Destroyed my own already-lame humor. I meant "Bug-eyed", not "buy-eyed". That latter is what my wife gets when she spots a good sale, but it's not what I was trying to evoke here.--BobBob Grommes wrote: I understand the impulse, Penny, but I think it can do just as much damage to your cause to come off all buy-eyed (pun intended) for one facet of chronic illness, and one solution to it. I don't see a conflict between flogging the virulence and tenacity of pathogens and the need for aggressive treatment, while also acknowledging that tenacity could be caused or exacerbated by disregulated immune systems, deranged protein synthesis, environmental toxins, impaired detox pathways and yes, even genetic vulnerability in some form.I'll grant you that, assuming your physiology can still handle the die-off, the pathogen problem is arguably the most actionable one right now, but the insights from other fields can inform the assault to a significant degree, I think.I'll go back into lurk mode now; Tony, feel free to apply the f-label to me or whatever you need to do to

blow off steam ;-)--BobPenny Houle wrote: Bob, I agree with you. But the approach is so one-sided right now, that someone has to advocate for the other side. Everyone wants to blame genetics and the immune system and almost everyone ignores or fails to recognize the remarkable adaptability of the organisms we're fighting. We haven't made much progress since the ulcer fiasco. So much evidence but no one paid attention until a researcher almost killed himself to prove that ulcers were caused by bacteria and could be treated with antibiotics. Do I believe that our inidividual makeups, chemical exposure and bad diets, play a role. Most definitely YES! But to blame everything on those things and ignore the amazing capabilities of

these bugs just drives me nuts. pennyBob Grommes <bobbobgrommes> wrote: I think this whole discussion of genetics and environmental matters is getting quite distorted and confused.It's simplistic to either suggest that all problems are genetic or that genetics can't possibly play a significant role. It is not so much a matter of gene mutation as one of gene expression. Genes can be incorrect and cause problems, but they can also be correct, but express in bizarre ways because of screwed up protein folding and/or environmental influences (including pathogens). I am not entirely convinced that sub-fields such as nutrigenomics (e.g., Yasko) are mature enough to provide solid guidance that we can have confidence in, but I

would not at all discount the value of these avenues of inquiry, no matter what one thinks of chronic / multiple infection.As to environment, there are ways in which it has improved, simplistically speaking ... and there are hopeful developments in just the past year or two where it has suddenly become fashionable for businesses to get greener (mainly, because they finally figured out that it impacts their bottom line in concrete ways, and because there is better enabling green technology available). However, we've still introduced thousands of synthetic chemicals into the environment in the past two generations or so and we've barely studied their combined effects. We've studied a few individually but are only beginning to figure out that the synergy of two or three or a half dozen chemicals is very much more than the sum of their parts. We are also messing with nature in ways we never have before.In addition, I'm totally convinced that

many chronic health problems have their ultimate genesis in environmental damage to the body that may have happened years or decades previous to onset, and there is no obvious way to connect the dots. Whether that matters in terms of curing the eventual symptoms is debatable, but the farther you can get from synthetics and processed foods, the better off your health will be in the long run.I doubt very much that bugs would be such a huge problem if they were not aided and abetted by genetic vulnerabilities and environmental assaults. All three -- genetics, environment, and pathogens -- are interrelated and it's the height of foolishness to either ignore any one of them, or to focus exclusively on any one of them. They all do a complex dance together.It's human nature to want simple explanations, but alas, nature does not cooperate with that desire.--BobPenny Houle wrote: Did you guys see that news special, "What Americans Worry About". The last 15 minutes or so went down the list of everything we're freaked out about, and the remarkable thing was that most of those things are actually better now than they were 50 years ago. I'm talking crime, sickness, pollution, (almost every category, actually). Surprisingly, due to much stricter regulation governing pollution and sewage, etc., our environment & air quality is actually much cleaner than it was a few decades ago. Yes, our food is overly processed, and there's a lot of chemical and electrical stuff in our environments that are fairly new, and I AM a big advocate for protecting our environment, BUT on the other hand, we don't have raw sewage running in the streets, or docs going from patient to patient without goves,

etc. So I sometimes have to question whether our fears are a bit more irrational than not. & nbs p;Simply a result of our instinct for self preservation through avoiding anything that appears dangerous? One thing I know, every generation thinks things are worse than the last, when in truth, they are simply evolving. To me, one big factor impacting our health would possibly be improved transportation internationally and how we are affected by that, especially when it comes to our food supply (not to mention improved refrigeration and preservation of our food in transit which enables it to come from further away). We are exposed to germs today that we probably never would have encountered in the past. Perhaps that's where the problem lies? All kinds of laborers in other countries and states are handling our food, plus international travel by ordinary people

is so common these days. In the past, a new invading culture could nearly wipe out an existing one simply with the bugs they carried with them. Even here in California, until fairly recently it was very common to cross the border and end up with a nasty gastrointestinal upset because of the different bugs down there. Recently, people have almost died from bacteria contaminated spinach as well as animals being debilitated or killed by ingredients in their pet food. (The thing that surprises me about that is that it has supposedly happened so rarely.) Think about what we're eating and where it comes from, who's handled it on its journey to us, etc. Think about all the people who've handled the same grocery cart you did at the grocery store. Who was in the bathroom before you were? The hotel room (recent studies show they are heavily contaminated with germs)? Who tried on the shoes you tried on,

who worked out before you at the gym or showered in the locker room, or handled the DVD before you rented it, or read the magazine in the waiting room? It's no longer just our local villagers and common bugs we're dealing with, it could be people from anywhere in the world carrying who knows what? So maybe we haven't yet adapted "genetically" to some of these invaders, but does that mean our genes have become faulty? Or is it that until now, they just haven't had a reason to adapt? And until our genes do adapt, as it seems they usually do even in the most severe cases of contagious disease, should we focus all our attention on fixing our genes, which Mother Nature will most likely do anyway, or should we perhaps try to fight the more quickly adapting bugs that have the upper hand and are killing us right now? penny Kate <KateDunlayhfx (DOT) eastlink.ca> wrote: Tony, genetic problems haven't multiplied but environmental problems have. So maybe people with certain genes are more susceptible to these problems.- KateOn May 27, 2007, at 11:25 AM, dumbaussie2000 wrote:> Rich> Can you stop using the words genetic problems, because I'm ready to> throw prophanities at you!!!!!!!!!!!> Myself, alongside many smnart scientists, are not comfortanble that> genetic problems all of a sudden multiplied a thousand fold to give> you fukwits a platform to throw that at us ill folk.> cheers tony>

[Guest guest]

Much better said. :-) Whole lot of overlooking going on, that's for sure. :-) pennyBarb Peck <egroups1bp@...> wrote: Bob:I pretty much agree with everything you're saying. I have to be carefull sometimes because I look at alot of (medical) problems from an individual standpoint - not from the viewpoint of most medical physicians - which is from a PUBLIC health standpoint. WHat to do in certain instances, and even the

though process is different for those two positions.There are many components that tend to make up any problem- and the human body is certainly complicated. I just tend to think (as I know Penny does) that we underestimate the will to live, and the abilities of bacteria to alter their host to suit them better.Barb> >>> >> > Rich> >> > Can you stop using the words genetic problems, because I'm> >> ready to> >> > throw prophanities at you!!!!!!!!!!!> >> > Myself, alongside many smnart scientists, are not> >> comfortanble that> >> > genetic problems all of a sudden multiplied a thousand fold> >> to give> >> > you fukwits a platform to throw that at us ill folk.> >> > cheers tony> >> >> >>> >>> >> >>

[Guest guest]

I thought you made some great points, . And since so many more people get health care now and so many more people's diseases are being reported, there's not a lot of evidence that we're sicker now. My great grandfather probably died of cancer, but back then, people didn't get dx'd and called it dying of "old age". I do believe that low grade infection is pretty rampant, based on my conversations and observations, but whether it's worse now or not is kind of hard to say. It used to be that some people were "sickly" their whole lives, but it didn't seem as common as it does now, but then again we didn't have the kind of communication back then that we do now. Perhaps every family in every township or village had at least one "sickly" person. A whole lot of people certainly died younger than we do today. It's possible today's pwcs wouldn't have lasted very long 50 years ago either. penny <usenethod@...> wrote: > better enabling green technology available). However, we've still > introduced thousands of synthetic chemicals into the environment in the > past two generations or so and we've barely studied their combined > effects. How does that matter, though, unless there are unaccountable diseaseincreases over those two generations? In fact, if there aren't anysuch increases, it pretty much proves that

those contaminations arenot a cause of observable disease.In addition to what I mentioned yesterday, cancer has increased, ofcourse - but that basically goes away when you correct for theincreased aging we see nowadays, so it's eminently explicable.

[Guest guest]

> It used to be that some people were " sickly " their whole lives, but

it didn't seem as common as it does now, but then again we didn't have

the kind of communication back then that we do now.

I think people from the days might not have been too impressed if you

were grouchy and lay around a lot. That might be why CFS is not so

much represented in the culture - though it's still not much

represented in the culture even today.

At the fin de siecle or however you spell that (1890s), ~10% of the

people in Western Europe had syphilis. Most of those weren't

half-paralyzed screaming madmen throwing feces around, but some were.

People also died of TB by the busload - like 1% of the entire

population per annum or something. These people would have apoplexies

of coughing blood for hours, then die - or survive and wait for it to

happen again. Pretty much everyone would have known TB patients

personally and it would have been much more common than severe CFS was

or is.

Also, many sick people back then were mighty ugly. Boy, I'm not

kidding. Syphilis and skin TB commonly caused melting and scabbing of

the face, such that your nose falls off leaving two big holes... or

worse. I've seen the pics. About the most disturbing thing I've seen.

Some people's heads looked like a spoiled side of meat with eyes. Of

course this went on right up thru the 1940s. And it can still happen

in leprosy when it isn't treated.

Of course, it's true the serious stuff tended to be hid away in

institutions to an extent, but that was probably much less complete

back then with the weaker economy. We have a ton more money and a ton

bigger government now. Even today you can meet plenty of

highly-disabled schizophrenics on the street here in the USA

(homeless), but they're usually pretty mild. The screaming raving

people are all institutionalized. In Berlin there's virtually no

street people of any kind.

[Guest guest]

The term "invisible illness"

exists for a reason. For disease incidence studies to register

disease, the disease has to be recognized. There are social and

political reasons for resisting this, not the least of which is the

desire of insurance companies not to pay claims and the desire of

pharmaceutical companies and doctors not to be sued, or to have to deal

with things they don't want to acknowledge.

Are you familiar with Slacker's Disease? It's no known as Multiple

Sclerosis. This is the cycle that all illness goes through: denial and

ridicule, grudging acceptance, and then pretending it's been part of

the landscape all along. I doubt that Slacker's Disease was part of

the official statistics in the early part of the 20th century.

Another issue is how you define your terms. Consider, for example,

success rates in treating cancer. How do you define success? I submit

that in general, it's defined as "the patient didn't die". They might

have terrible pain, loss of limbs or other body parts, etc., and maybe

or maybe not this should be considered "success".

--Bob

wrote:

> better enabling green technology available). However, we've still

> introduced thousands of synthetic chemicals into the environment

in the

> past two generations or so and we've barely studied their combined

> effects.

How does that matter, though, unless there are unaccountable disease

increases over those two generations? In fact, if there aren't any

such increases, it pretty much proves that those contaminations are

not a cause of observable disease.

In addition to what I mentioned yesterday, cancer has increased, of

course - but that basically goes away when you correct for the

increased aging we see nowadays, so it's eminently explicable.

[Guest guest]

> I thought you made some great points, . And since so many more

people get health care now and so many more people's diseases are

being reported, there's not a lot of evidence that we're sicker now.

My great grandfather probably died of cancer, but back then, people

didn't get dx'd and called it dying of " old age " .

>

> I do believe that low grade infection is pretty rampant, based on

my conversations and observations, but whether it's worse now or not

is kind of hard to say. It used to be that some people were " sickly "

their whole lives, but it didn't seem as common as it does now, but

then again we didn't have the kind of communication back then that we

do now. Perhaps every family in every township or village had at least

one " sickly " person. A whole lot of people certainly died younger than

we do today. It's possible today's pwcs wouldn't have lasted very long

50 years ago either.

>

> penny

It is worrisome to me that almost everyone in the human population

could end up physiologically depressed or devitalized to a subclinical

extent, and no one would even be able to realize it. That is certainly

possible. The problem is that *all* our changes of lifestyle,

including things like hygiene, have the potential to change our immune

function or the behavior of our parasites. It's not just chemicals or

things that are obviously dangerous. *Every* divergence from nature

is at least potentially quite pernicious (though nature itself is

incredibly pernicious to individuals). So what can you do? You can

really only do your level scientific best.

It's a bummer when you have something like global warming, where there

is still some argument about the evidence, but where there is at least

some risk of it being largely " too late " already in 2020 at which time

the evidence will probably allow a much clearer picture of what's

happening.

Anyway, I think it may not be too long before we can control our sense

of well-being directly. At worst it will have to be done by germline

genetic engineering.

The world is crazy and technology is pretty wild and risky. There are

a ton of unintended consequences. But no one ever wants to turn down

penicillin when they have syphilis, or decline to invent the A bomb

when they're facing Hitler, because it might turn out to have this or

that speculative effect in the future. So the whole thing lurches on,

crazier and crazier at least so far. Hopefully for the best, in the end.

Modern man probably isn't the only one to face technologic

catastrophes. First of all, the many large, unwary animals (megafauna)

of the Americas and of Oceana, etc were almost certainly extirpated by

humans almost as soon as they arrived. These animals had evolved with

no predators and basically didn't run. Thats right, those wise old

Indians who used every part of the buffalo were descended from people

who came down here and speared every last one of the giant witless

aardvarks and giant everything else that used to live here, in a melee

of thoughtless exploitation. I guess when my family is starving in

9,000 BC, I too will stab the last of the giant aardvarks.

Then, we know that some of the Mesoamerican civilizations were

precipitously abandoned. Some think their soils went barren from

overexploitation, but I think that's pretty speculative, or really I

don't know.

Most people seem to think our deadly hyperepidemics like smallpox and

measles evolved because of the high population densities afforded by

agriculture. Whoops. Some even think we acquired TB by domesticating

cows (which have M bovis) but at least one group thinks M bovis

derived from M tuberculosis.

There was a very early civilization in India that was apparantly

abandoned. It had one of the first water systems, which was probably

highly fecally contaminated, considering so many water systems are

even today in the third world. Ewald thinks this civilization may have

caused epidemic cholera to evolve. In hunter-gatherer times, humans

had a low density and faced less fecal-oral contamination, so a highly

deadly form of cholera would have tended to kill its host prior to

being transmitted, something that is no longer true if that host is

living in a primitive city. The molecular evidence comports with an

Indian origin for the cholera organism. Ewald proposes people headed

for the hills when they realized the cholera waves were only happening

inside the cities. This is pretty speculative, of course.

Anyway, it's at least likely that technology has been a pretty long

hairy ride overall. At least now we have science. Those old guys

didn't have the foggiest idea what the hell was happening, so they

couldn't control anything they did (good thing they barely knew how to

do anything!).

Might not have been too bad to be a precolumbian North American

Indian. Some think they had relatively few diseases. They certainly

didn't have thing one with which to seriously treat the ones they did

get, but then neither do some of us here on I/I today. Certainly war

was widespread in some ethnic groups, but probably much more benign

given the lack of metal. Problem is, when you're technology is

stagnant, somebody eventually sails over the ocean and eats you alive.

It sure as hell happened to the Indians, and it probably also happened

to every hunter-gatherer society on the borders of the new

agricultural civilizations from 10,000 years ago onward. Some think

that the lives of those hunter-gatherer tribes were more vibrant than

farmers' and that their economies may have less laborious in

comparison to agricultural ones. Whether that's true or not, with

their low population densities it's easy to see why they almost

certainly had much, much weaker war economies and got their ass kicked

all over the globe. Kind of sad. The ways of the world aren't

optimized too much for human thriving... maybe one day we'll make our

own world via germline genetic engineering and such. For now I'm

hoping our population and consumption rates level off before we run

half of Nature off the planet. Fortunately, affluence seems to

stabilize populations, but it also increases consumption.

[Guest guest]

Everything's underfunded and suffering's rife. That's why until

there's a clear physiologic basis for CFS, even some pretty reasonable

decent people will feel justified sweeping it under the rug more or

less. It's triage. Even if they are 90% sure it's legit, they don't

want to risk potentially wasting the money (research funds, a ton of

treatment refunds from insurance companies, and a whole crapload of

pension money).

For the same reason, some rather less reasonable and decent people

probably aren't in a big hurry to find out whether there IS a clear

physiologic basis.

I've heard that even after MS was demonstrated as a valid disease, the

rates were much higher in men. A lot of women had hysteria back then.

Funny thing, MRIs have shown that today many more women than men have MS.

The only assholes that really enrage me are those who claim you can

check out a human body (someone else's, that is) and determine it to

be absolutely A-OK. That's a straight-up lie. These people should know

very well that there's no well established physical abnormality in

schizophrenia. It's not only a lie, it's a hubristic one. While

everyone who makes an unmodified statement that CFS literally " is " a

somatization disorder is implying this lie, some people actually

elaborate it explicitly. Blows my mind. Read it all the time in the NY

Times and nobody in the world bats an eyelash. Science requires the

opposite mindset from these people's.

> The term " invisible illness " exists for a reason. For disease

incidence

> studies to register disease, the disease has to be recognized. There

> are social and political reasons for resisting this, not the least of

> which is the desire of insurance companies not to pay claims and the

> desire of pharmaceutical companies and doctors not to be sued, or to

> have to deal with things they don't want to acknowledge.

>

> Are you familiar with Slacker's Disease? It's no known as Multiple

> Sclerosis. This is the cycle that all illness goes through: denial and

> ridicule, grudging acceptance, and then pretending it's been part of

the

> landscape all along. I doubt that Slacker's Disease was part of the

> official statistics in the early part of the 20th century.

>

> Another issue is how you define your terms. Consider, for example,

> success rates in treating cancer. How do you define success? I submit

> that in general, it's defined as " the patient didn't die " . They might

> have terrible pain, loss of limbs or other body parts, etc., and maybe

> or maybe not this should be considered " success " .

>

> --Bob