Re: rvankonynen?

[Guest guest]

>

> Sorry, been gone for a while. What happened to Rich? Is he still

> posting?

>

***Hi Pointer - Unfortuntely, Rich got scared off by a former member of

this group. She continually hurrased him, and I am guessing that to

cover himself legally, he has stopped posting his theories and advice

and now will only do consults with our doctors, not directly with us.

It's unfortunate because we lost a very valuable source of information

when Rich stopped posting.

Take care.

Bernie

[Guest guest]

Hi, pointerz71.

I just want to let you know that I'm still kicking, and I'm still

working on behalf of the CFS community, even though you don't hear from

me as often.

There are several reasons why I haven't been posting much here for the

past few months. Since you've been away for a while, you may not be

aware of some of the things that have occurred. As you may recall, my

research led me to making a connection between CFS and autism, based on

similarities in the biochemistry and genetics. I reasoned that the

treatments that were helping in autism should also help in CFS.

Initially I suggested treatments used by the DAN! project for autism.

Some people tried those, but they didn't work out very well, at least

in the way I was suggesting that they be used.

Then I learned more about the autism treatment program developed by Amy

Yasko, and I suggested that it might work for CFS. Some people began

trying it, and reporting their genetic test results and other details

on this list, but not everyone here was interested in this approach, so

our moderator asked that the discussion be moved to the new cfs_yasko

list. Since most of my effort was focused on this approach, I began to

participate mostly over there, and less here.

I presented a paper on the Glutathione Depletion--Methylation Cycle

Block hypothesis for the pathogenesis of CFS at the IACFS conference in

Fort Lauderdale in January, 2007. At the meeting, Dr. Bell asked

me to give him a writeup of treatment based on this hypothesis.

In late January, 2007, in response to his request, and with the help of

Trina, I suggested a simplified treatment approach, which was extracted

from step 2 of Amy Yasko's complete treatment program. I also posted

this to the list, and Louella decided to try it, starting one year ago

tomorrow (Feb. 19, 2007). She experienced rather striking results in a

short time, and reported them to the ImmuneSupport FM/CFS discussion

board. Others there decided to try it as well, and in a few months

there were at least 60 people, mostly on that board, who were trying it

or who expressed the intention to try it. The results for most were a

combination of positive improvements in CFS symptoms, together with

more or less unpleasant symptoms associated with detox and die-off of

pathogens. Overall, most of the people felt motivated to continue,

because they were experiencing progress, even though the inherent detox

and die-off were not a lot of fun. Some people didn't experience

anything from the treatment. I encouraged the people to work with

their doctors while on this treatment.

Then in June and July there started to be a few reports of adverse

effects, some of them rather serious. I think this came as a surprise

to all of us, because the simplified treatment approach consists only

of food supplements containing substances normally found in the body

and necessary for its normal biochemistry. However, these reports

convinced me that I should emphasize more strongly the need to have a

doctor helping with treatment decisions and monitoring the person while

on treatment, which I did in an update dated July 18, 2007.

As part of this, I decided to stop discussing individual treatment on

the internet lists, and instead to work on encouraging physicians to

use this treatment and supervise their patients while on it. I also

decided to formalize my work on individual cases, requiring a doctor to

be involved, and charging a fee. I had been doing some consulting on a

fee basis prior to that time, for a few people who had specifically

requested it. Since then, I have had a backlog of consulting cases,

and some of them have been quite complex. (Please understand that I am

not soliciting here, just explaining what has gone on.)

Wendi started another internet list devoted specifically to the

simplified treatment approach. As time has gone on, quite a few of the

people who started with the simplified treatment approach have decided

to move into at least some aspects of the full Yasko treatment program,

with the hope that they would experience more benefit, and would also

be able to judge their progress better by the testing she uses. So

most of the message traffic on this treatment has ended up on the

cfs_yasko list and on the ImmuneSupport fm/cfs discussion board.

I think everyone would like the treatment to work faster, so that they

could recover sooner. It appears to me that the thing that is limiting

the rate of recovery on this treatment is the limited rate at which

toxins can be excreted from the body. The treatment, among other

things, brings the detox system up, and it starts mobilizing toxins

into the blood stream. It is one thing to move toxins into the blood,

but another thing to get them from the blood out of the body. If the

dosages of the supplements are increased, it seems that toxins are

mobilized into the blood faster, but getting them out into the stools,

urine and sweat isn't speeded up as readily, so the elevated levels of

toxins in the blood make the person feel pretty crummy. Some people

are experimenting with ways of speeding up the excretion, and perhaps

that will help. I want to emphasize that these things should be done

under the supervision of a doctor, to avoid problems that could arise.

During this time I also began to focus on trying to publish in medical

journals in order to get the work out to the research community as well

as the clinical community. I collaborated with Dr. Myhill on a

draft of a paper about mitochondrial dysfunction in CFS, and we are

still working to get it into a journal.

Over the past few months I have also had the opportunity to interact

quite a bit more with other CFS researchers and with CFS clinicians, in

trying to better understand the pathogenesis, pathophysiology and

treatment of CFS, and that interaction has occupied a lot of my time,

as well as being very helpful. One of the doctors I have appreciated

interacting with has been Dr. Enlander, who has posted to this list.

He had been developing his protocol over many years. As a result of

our interaction, he made some changes to his protocol to give

additional support to the methylation cycle, beyond what his protocol

had already been doing.

I have been asked to speak at a medical conference (the meeting of the

Orthomolecular Health Medicine Society in San Francisco on Feb. 29),

and lately have been putting effort into preparing for that.

There are now a few physicians who have been treating to lift the

methylation cycle block in CFS, and at least several hundred PWCs

worldwide who are on this treatment. The reports coming back indicate

that about two-thirds or more of them are experiencing continuing

improvement on this type of treatment.

Since this type of treatment does not seem to work for all PWCs, I have

been suggesting that people first have the methylation panel from

Vitamin Diagnostics, Inc., in New Jersey run to see if they have a

methylation cycle block. So far I think I have seen results of this

panel for about seven PWCs, and all of them have shown evidence for the

block. This panel requires a doctor's order, and I have heard that it

costs $225.

I am working with one physician who is planning a research study in his

practice that will involve use of this treatment on 100 people who have

both CFS and FM. I'll be able to say more about this after the details

have been worked out and everything is approved.

I hope you can see from this that I am still " on the job, " just

emphasizing different aspects than before. I am convinced that in

order to make a significant dent in CFS, the large population of PWCs,

including the majority who have not even been diagnosed, will have to

be reached by the physicians. This can only happen if the physicians

are brought on board, so that is what I am emphasizing now.

I do miss participating in the give and take on the lists, and I

certainly learned a lot from it over the ten years or so that I was

active in it. I still do care about all of you, and I'm hopeful that

the things I'm doing now will pay off for you.

Best wishes,

Rich

>

> Sorry, been gone for a while. What happened to Rich? Is he still

> posting?

>

> Thanks

>

[Guest guest]

Hi?Rich

Im glad you are still around - I have nothing but admiration for you.

You have been the inspiration to my own recovery.

I wish you well on your journey to help countless hundreds in their recovery.

Kind Regards

CS

Re: rvankonynen?

Hi, pointerz71.

I just want to let you know that I'm still kicking, and I'm still

working on behalf of the CFS community, even though you don't hear from

me as often.

There are several reasons why I haven't been posting much here for the

past few months. Since you've been away for a while, you may not be

aware of some of the things that have occurred. As you may recall, my

research led me to making a connection between CFS and autism, based on

similarities in the biochemistry and genetics. I reasoned that the

treatments that were helping in autism should also help in CFS.

Initially I suggested treatments used by the DAN! project for autism.

Some people tried those, but they didn't work out very well, at least

in the way I was suggesting that they be used.

Then I learned more about the autism treatment program developed by Amy

Yasko, and I suggested that it might work for CFS. Some people began

trying it, and reporting their genetic test results and other details

on this list, but not everyone here was interested in this approach, so

our moderator asked that the discussion be moved to the new cfs_yasko

list. Since most of my effort was focused on this approach, I began to

participate mostly over there, and less here.

I presented a paper on the Glutathione Depletion--Methylation Cycle

Block hypothesis for the pathogenesis of CFS at the IACFS conference in

Fort Lauderdale in January, 2007. At the meeting, Dr. Bell asked

me to give him a writeup of treatment based on this hypothesis.

In late January, 2007, in response to his request, and with the help of

Trina, I suggested a simplified treatment approach, which was extracted

from step 2 of Amy Yasko's complete treatment program. I also posted

this to the list, and Louella decided to try it, starting one year ago

tomorrow (Feb. 19, 2007). She experienced rather striking results in a

short time, and reported them to the ImmuneSupport FM/CFS discussion

board. Others there decided to try it as well, and in a few months

there were at least 60 people, mostly on that board, who were trying it

or who expressed the intention to try it. The results for most were a

combination of positive improvements in CFS symptoms, together with

more or less unpleasant symptoms associated with detox and die-off of

pathogens. Overall, most of the people felt motivated to continue,

because they were experiencing progress, even though the inherent detox

and die-off were not a lot of fun. Some people didn't experience

anything from the treatment. I encouraged the people to work with

their doctors while on this treatment.

Then in June and July there started to be a few reports of adverse

effects, some of them rather serious. I think this came as a surprise

to all of us, because the simplified treatment approach consists only

of food supplements containing substances normally found in the body

and necessary for its normal biochemistry. However, these reports

convinced me that I should emphasize more strongly the need to have a

doctor helping with treatment decisions and monitoring the person while

on treatment, which I did in an update dated July 18, 2007.

As part of this, I decided to stop discussing individual treatment on

the internet lists, and instead to work on encouraging physicians to

use this treatment and supervise their patients while on it. I also

decided to formalize my work on individual cases, requiring a doctor to

be involved, and charging a fee. I had been doing some consulting on a

fee basis prior to that time, for a few people who had specifically

requested it. Since then, I have had a backlog of consulting cases,

and some of them have been quite complex. (Please understand that I am

not soliciting here, just explaining what has gone on.)

Wendi started another internet list devoted specifically to the

simplified treatment approach. As time has gone on, quite a few of the

people who started with the simplified treatment approach have decided

to move into at least some aspects of the full Yasko treatment program,

with the hope that they would experience more benefit, and would also

be able to judge their progress better by the testing she uses. So

most of the message traffic on this treatment has ended up on the

cfs_yasko list and on the ImmuneSupport fm/cfs discussion board.

I think everyone would like the treatment to work faster, so that they

could recover sooner. It appears to me that the thing that is limiting

the rate of recovery on this treatment is the limited rate at which

toxins can be excreted from the body. The treatment, among other

things, brings the detox system up, and it starts mobilizing toxins

into the blood stream. It is one thing to move toxins into the blood,

but another thing to get them from the blood out of the body. If the

dosages of the supplements are increased, it seems that toxins are

mobilized into the blood faster, but getting them out into the stools,

urine and sweat isn't speeded up as readily, so the elevated levels of

toxins in the blood make the person feel pretty crummy. Some people

are experimenting with ways of speeding up the excretion, and perhaps

that will help. I want to emphasize that these things should be done

under the supervision of a doctor, to avoid problems that could arise.

During this time I also began to focus on trying to publish in medical

journals in order to get the work out to the research community as well

as the clinical community. I collaborated with Dr. Myhill on a

draft of a paper about mitochondrial dysfunction in CFS, and we are

still working to get it into a journal.

Over the past few months I have also had the opportunity to interact

quite a bit more with other CFS researchers and with CFS clinicians, in

trying to better understand the pathogenesis, pathophysiology and

treatment of CFS, and that interaction has occupied a lot of my time,

as well as being very helpful. One of the doctors I have appreciated

interacting with has been Dr. Enlander, who has posted to this list.

He had been developing his protocol over many years. As a result of

our interaction, he made some changes to his protocol to give

additional support to the methylation cycle, beyond what his protocol

had already been doing.

I have been asked to speak at a medical conference (the meeting of the

Orthomolecular Health Medicine Society in San Francisco on Feb. 29),

and lately have been putting effort into preparing for that.

There are now a few physicians who have been treating to lift the

methylation cycle block in CFS, and at least several hundred PWCs

worldwide who are on this treatment. The reports coming back indicate

that about two-thirds or more of them are experiencing continuing

improvement on this type of treatment.

Since this type of treatment does not seem to work for all PWCs, I have

been suggesting that people first have the methylation panel from

Vitamin Diagnostics, Inc., in New Jersey run to see if they have a

methylation cycle block. So far I think I have seen results of this

panel for about seven PWCs, and all of them have shown evidence for the

block. This panel requires a doctor's order, and I have heard that it

costs $225.

I am working with one physician who is planning a research study in his

practice that will involve use of this treatment on 100 people who have

both CFS and FM. I'll be able to say more about this after the details

have been worked out and everything is approved.

I hope you can see from this that I am still " on the job, " just

emphasizing different aspects than before. I am convinced that in

order to make a significant dent in CFS, the large population of PWCs,

including the majority who have not even been diagnosed, will have to

be reached by the physicians. This can only happen if the physicians

are brought on board, so that is what I am emphasizing now.

I do miss participating in the give and take on the lists, and I

certainly learned a lot from it over the ten years or so that I was

active in it. I still do care about all of you, and I'm hopeful that

the things I'm doing now will pay off for you.

Best wishes,

Rich

>

> Sorry, been gone for a while. What happened to Rich? Is he still

> posting?

>

> Thanks

>

________________________________________________________________________

AOL's new homepage has launched. Take a tour at http://info.aol.co.uk/homepage/

now.

[Guest guest]

Hi Rich,

Good to see you back. Any idea about when we might see your paper

with published?

Phil

> >

> > Sorry, been gone for a while. What happened to Rich? Is he still

> > posting?

> >

> > Thanks

> >

>

[Guest guest]

Hi, Phil.

Thanks. I can't say when the paper will be published. It will

depend on journal editors and peer reviewers. The paper will only

present the evidence for mito dysfunction in CFS, but will not

attempt to explain what causes it or to suggest treatment.

My own view is that the mito dysfunction is initially secondary to

the methylation cycle block and the drop in glutathione. Later on,

other things accumulate that interfere further with mito function,

including heavy metals, other toxins, and viral infections, as shown

in the BioLab ATP Profile test results. But this is an unproven

hypothesis.

Dr. Myhill has added a methylation package to her treatment protocol,

which already included mito support, and she has seen some good

results from this addition, but not many of her patients have been

treated with this yet.

Rich

> > >

> > > Sorry, been gone for a while. What happened to Rich? Is he

still

> > > posting?

> > >

> > > Thanks

> > >

> >

>

[Guest guest]

Hello Rich,

Thanks for your response. I appreciate all the work you have done

and continue to do.

Pointer

> >

> > Sorry, been gone for a while. What happened to Rich? Is he still

> > posting?

> >

> > Thanks

> >

>

[Guest guest]

Hi Rich, Good to hear your news and as always thanks so much for

all your work for us all, appreciated.

I sincerely hope your paper with Dr M gets published soon, we need as

much ammo as possible to breach the pyschiatric bubble over here in

the UK.

I read this artiicle by Dr Bruno about the parallels between

CFS/FMS/post polio syndrome and wondered if anyone had looked at the

mitochondrial function of people with PPS and compared it to CFSers,

thought it might be interesting? Do you know if Dr Myhill/Biolab have

looked at this? I know they have come up with virus/bacterila DNA in

some CFSers mitos ( that came up in mine) but not heard any more on

what infection might be involved. I certainly had coxsackie which is

an enterovirus as is polio.

here is the link:

http://tinyurl.com/3a3rfy

BW,

Sheila

> > > >

> > > > Sorry, been gone for a while. What happened to Rich? Is he

> still

> > > > posting?

> > > >

> > > > Thanks

> > > >

> > >

> >

>

[Guest guest]

Hi, Sheila.

Thanks for the post and the encouragement. No, I don't know if Dr.

Myhill has looked at the mitochondria in post-polio patients, but I

think it is very likely that there would be problems in that

department.

Rich

>

> Hi Rich, Good to hear your news and as always thanks so much for

> all your work for us all, appreciated.

>

> I sincerely hope your paper with Dr M gets published soon, we need

as

> much ammo as possible to breach the pyschiatric bubble over here in

> the UK.

>

> I read this artiicle by Dr Bruno about the parallels between

> CFS/FMS/post polio syndrome and wondered if anyone had looked at

the

> mitochondrial function of people with PPS and compared it to

CFSers,

> thought it might be interesting? Do you know if Dr Myhill/Biolab

have

> looked at this? I know they have come up with virus/bacterila DNA

in

> some CFSers mitos ( that came up in mine) but not heard any more on

> what infection might be involved. I certainly had coxsackie which

is

> an enterovirus as is polio.

>

> here is the link:

> http://tinyurl.com/3a3rfy

> BW,

> Sheila