Re: Musings on Progress in science and why I say things I do but won't any more

[Guest guest]

Hi Natasa, I have been following this thread, sort of, my son, is 15, has been pretty much a non responder and still very much autistic despite most biomed interventions! anyway he is still doing ok so maybe some interventions are, did help him along the way!??

So can you tell us more about the discoveries being made at the moment? always ready to listen and read even though I have had abit of a break from it all for a while just to stay sane!

many thanks Di

Subject: Musings on Progress in science and why I say things I do but won't any moreTo: Autism-Biomedical-Europe Date: Thursday, 25 November, 2010, 15:25

This to clear few things up from my perspective if anyone is interested, long but then I'll stop promise LOL.

As most know I've never bought into mercury-causing-autism theory in the past, it never made much sense whichever way I looked at it, it makes even less sense to me now, and especially after carefully reading papers on developmental outcomes of congenital mercury exposure (in which all classic Autism symptoms are clearly absent), or those on both acute and chronic/subclinical exposures in children and adults... And yes I do believe that many chelators are potentially fantastic for our kids, and for reasons that may not have much to do with metal removal (yes I DID post loads of science on those effects on this one and many other lists a good while ago, if anyone is interested can search… ), and that chelation for those who tolerate it is a good part of biomed and that is one of the reasons I try not to bring up the issue of causation,

and also because what is the point anyway. That is not to say that mercury or metals might not in some yet-to-be-discovered way be contributing to autism, but that is a far cry from them being causative factors. But this is not why I'm posting this, as not willing to argue any of that now or in future… actually I forgot what the point was. Ah yes, Advocacy! Because causative factors don't matter if the treatment is going to be the same, no?

But lately something has been happening. A small group of researchers has been coming up with some incredibly exciting discoveries that could have enormous effects for our kids. If this research pans out it will have the potential to start on the path of many novel treatments – even for severe kids and those who don't respond to biomed, including kids who remain very much autistic after a decade of chelation/biomed, it would also help tailor treatments to those who are responders and are doing well but not off the spectrum … of course these discoveries, if confirmed and allowed to expand and translate into clinical trials, will not bring instant (or even long-term) solutions for everyone BUT they would bring about a permanent shift in how autism is perceived by mainstream doctors and public – the undeniable (to mainstream) proof that autism is medical and should leave

the realm of psychobabble/behavioural science. No more eye-gazing studies, ever. This new knowledge would also have the potential to halt the explosion of autism, and if not get rid of it completely then soften the blow...

This research is under real threat of getting squashed, because of some powerful people with a lot to lose if it pans out, and the very same people who buried similar research 20 years ago are very busy trying to do the same thing right now - through fake negative studies, public attacks, accusations and starving anyone involved out of government grant funds. End result being that the people at the forefront of this research are starved out of cash, overworked and demoralised. In order to survive this research desperately needs lots of outspoken advocacy and support right now. But while all this has been going on most autism parents are too absorbed into autism=mercury narrative to even notice!! I can't help but find this … perplexing? Sad? Not sure what the word is…

In short a golden opportunity to bring about MAJOR paradigm shift in the way autism is perceived and treated and supported is about to sink unless nothing is done on advocacy front in near future.

So yes the mercury=causation theory does not really matter. Until it does, until it shapes things in such a way that it paralyses progress. As is happening right now.

Then again maybe it is the way it should be, maybe we are not supposed to `know' things, maybe autism is meant to be with us forever, some Original Sin crap or something, perpetuation of suffering for generations to come. Should any of us care? Should I care? I'll definitely try not to. Will shut up.

[Guest guest]

Not to break the habit of a lifetime I'm going to ask a really stupid question.

What exciting discoveries are you referring to Natasa?

I see things come up all the time and then die away again.

Vicky

Musings on Progress in science and why I say things I do but won't any more

This to

clear few things up from my perspective if anyone is interested, long but then

I'll stop promise LOL.

As most know

I've never bought into mercury-causing-autism theory in the past, it never made

much sense whichever way I looked at it, it makes even less sense to me now,

and especially after carefully reading papers on developmental outcomes of

congenital mercury exposure (in which all classic Autism symptoms are clearly

absent), or those on both acute and chronic/subclinical exposures in children and

adults... And yes I do believe that many

chelators are potentially fantastic for our kids, and for reasons that may not have

much to do with metal removal (yes I DID post loads of science on those effects

on this one and many other lists a good while ago, if anyone is interested can

search… ), and that chelation for those

who tolerate it is a good part of biomed and that is one of the reasons I try

not to bring up the issue of causation, and also because what is the point

anyway. That is not to say that mercury or metals might not in some

yet-to-be-discovered way be contributing to autism, but that is a far cry from them

being causative factors. But this is not why I'm posting this, as not willing

to argue any of that now or in future… actually I

forgot what the point was. Ah yes, Advocacy! Because causative factors don't

matter if the treatment is going to be the same, no?

But lately

something has been happening. A small group of researchers has been coming up

with some incredibly exciting discoveries that could have enormous effects for

our kids. If this research pans out it will have the potential to start on the

path of many novel treatments – even for severe kids and those who don't

respond to biomed, including kids who remain very much autistic after a decade

of chelation/biomed, it would also help tailor treatments to those who are

responders and are doing well but not off the spectrum … of course these discoveries,

if confirmed and allowed to expand and translate into clinical trials, will not

bring instant (or even long-term) solutions for everyone BUT they would bring

about a permanent shift in how autism is perceived by mainstream doctors and

public – the undeniable (to mainstream) proof that autism is medical and should

leave the realm of psychobabble/behavioural science. No more eye-gazing studies, ever. This new knowledge would also have

the potential to halt the explosion of autism, and if not get rid of it

completely then soften the blow...

This

research is under real threat of getting squashed, because of some powerful

people with a lot to lose if it pans out, and the very same people who buried

similar research 20 years ago are very busy trying to do the same thing right

now - through fake negative studies, public attacks, accusations and starving anyone

involved out of government grant funds. End result being that the people at the

forefront of this research are starved out of cash, overworked and demoralised.

In order to survive this research desperately needs lots of outspoken advocacy

and support right now. But while all

this has been going on most autism parents are too absorbed into autism=mercury

narrative to even notice!! I can't help but find this … perplexing? Sad? Not

sure what the word is…

In short a

golden opportunity to bring about MAJOR paradigm shift in the way autism is

perceived and treated and supported is about to sink unless nothing is done on

advocacy front in near future.

So yes the

mercury=causation theory does not really matter. Until it does, until it shapes

things in such a way that it paralyses progress. As is happening right now.

Then again

maybe it is the way it should be, maybe we are not supposed to `know' things,

maybe autism is meant to be with us forever, some Original Sin crap or

something, perpetuation of suffering for generations to come. Should any of us

care? Should I care? I'll definitely try not to. Will shut up.

[Guest guest]

Hi Natasa,

I too would like to know about these discoveries - more than happy to support any new and interesting lines of investigation, even if I'm only one small voice in the wilderness.

We did the hair test, ds did not meet the counting rules to support chelation for mercury and historical evidence which I came across in the past couple of years is as clear as circumstantial evidence ever is that ds had organophosphate insectide 'poisoning' (sub-acute) through exposure to sheep dip, which also contained phenols and they are not very healthy either.

Thanks

Patience

Subject: Musings on Progress in science and why I say things I do but won't any moreTo: Autism-Biomedical-Europe Date: Thursday, 25 November, 2010, 15:25

This to clear few things up from my perspective if anyone is interested, long but then I'll stop promise LOL.

As most know I've never bought into mercury-causing-autism theory in the past, it never made much sense whichever way I looked at it, it makes even less sense to me now, and especially after carefully reading papers on developmental outcomes of congenital mercury exposure (in which all classic Autism symptoms are clearly absent), or those on both acute and chronic/subclinical exposures in children and adults... And yes I do believe that many chelators are potentially fantastic for our kids, and for reasons that may not have much to do with metal removal (yes I DID post loads of science on those effects on this one and many other lists a good while ago, if anyone is interested can search… ), and that chelation for those who tolerate it is a good part of biomed and that is one of the reasons I try not to bring up the

issue of causation, and also because what is the point anyway. That is not to say that mercury or metals might not in some yet-to-be-discovered way be contributing to autism, but that is a far cry from them being causative factors. But this is not why I'm posting this, as not willing to argue any of that now or in future… actually I forgot what the point was. Ah yes, Advocacy! Because causative factors don't matter if the treatment is going to be the same, no?

But lately something has been happening. A small group of researchers has been coming up with some incredibly exciting discoveries that could have enormous effects for our kids. If this research pans out it will have the potential to start on the path of many novel treatments – even for severe kids and those who don't respond to biomed, including kids who remain very much autistic after a decade of chelation/biomed, it would also help tailor treatments to those who are responders and are doing well but not off the spectrum … of course these discoveries, if confirmed and allowed to expand and translate into clinical trials, will not bring instant (or even long-term) solutions for everyone BUT they would bring about a permanent shift in how autism is perceived by mainstream doctors and public – the undeniable (to mainstream) proof that autism

is medical and should leave the realm of psychobabble/behavioural science. No more eye-gazing studies, ever. This new knowledge would also have the potential to halt the explosion of autism, and if not get rid of it completely then soften the blow...

This research is under real threat of getting squashed, because of some powerful people with a lot to lose if it pans out, and the very same people who buried similar research 20 years ago are very busy trying to do the same thing right now - through fake negative studies, public attacks, accusations and starving anyone involved out of government grant funds. End result being that the people at the forefront of this research are starved out of cash, overworked and demoralised. In order to survive this research desperately needs lots of outspoken advocacy and support right now. But while all this has been going on most autism parents are too absorbed into autism=mercury narrative to even notice!! I can't help but find this … perplexing? Sad? Not sure what the word is…

In short a golden opportunity to bring about MAJOR paradigm shift in the way autism is perceived and treated and supported is about to sink unless nothing is done on advocacy front in near future.

So yes the mercury=causation theory does not really matter. Until it does, until it shapes things in such a way that it paralyses progress. As is happening right now.

Then again maybe it is the way it should be, maybe we are not supposed to `know' things, maybe autism is meant to be with us forever, some Original Sin crap or something, perpetuation of suffering for generations to come. Should any of us care? Should I care? I'll definitely try not to. Will shut up.

[Guest guest]

wow, glad i stayed out of this one, but NATASA, how exciting! you have my heart

pumping. Some of you have access to info that people like me will never have due

to the circles you are in. (science, politics, etc)

If there is anything you know that can clarify further what you are talking

about, I for one would like to know.

My boy was never vaccinated, so cant use the vax argument.

Also, in terms of chelating, if i, at this very moment were to take 500mg of

dmsa, heavy metals would pour out of me, as they would do in another six months

time as heavy metals are everywhere.

believe chelation has helped many but not in our case I am afraid. Have we been

sideswiped by the heavy metal theory to the exclusion of being able to see other

things? Please keep telling us things Natasa, always enjoy your posts and much,

very much to think about.

>

>

> This to clear few things up from my perspective if anyone is interested,

> long but then I'll stop promise LOL.

>

> As most know I've never bought into mercury-causing-autism theory in

> the past, it never made much sense whichever way I looked at it, it

> makes even less sense to me now, and especially after carefully reading

> papers on developmental outcomes of congenital mercury exposure (in

> which all classic Autism symptoms are clearly absent), or those on both

> acute and chronic/subclinical exposures in children and adults... And

> yes I do believe that many chelators are potentially fantastic for our

> kids, and for reasons that may not have much to do with metal removal

> (yes I DID post loads of science on those effects on this one and many

> other lists a good while ago, if anyone is interested can search… ),

> and that chelation for those who tolerate it is a good part of biomed

> and that is one of the reasons I try not to bring up the issue of

> causation, and also because what is the point anyway. That is not to say

> that mercury or metals might not in some yet-to-be-discovered way be

> contributing to autism, but that is a far cry from them being causative

> factors. But this is not why I'm posting this, as not willing to argue

> any of that now or in future… actually I forgot what the point was.

> Ah yes, Advocacy! Because causative factors don't matter if the

> treatment is going to be the same, no?

>

> But lately something has been happening. A small group of researchers

> has been coming up with some incredibly exciting discoveries that could

> have enormous effects for our kids. If this research pans out it will

> have the potential to start on the path of many novel treatments –

> even for severe kids and those who don't respond to biomed,

> including kids who remain very much autistic after a decade of

> chelation/biomed, it would also help tailor treatments to those who are

> responders and are doing well but not off the spectrum … of course

> these discoveries, if confirmed and allowed to expand and translate into

> clinical trials, will not bring instant (or even long-term) solutions

> for everyone BUT they would bring about a permanent shift in how autism

> is perceived by mainstream doctors and public – the undeniable (to

> mainstream) proof that autism is medical and should leave the realm of

> psychobabble/behavioural science. No more eye-gazing studies, ever. This

> new knowledge would also have the potential to halt the explosion of

> autism, and if not get rid of it completely then soften the blow...

>

> This research is under real threat of getting squashed, because of some

> powerful people with a lot to lose if it pans out, and the very same

> people who buried similar research 20 years ago are very busy trying to

> do the same thing right now - through fake negative studies, public

> attacks, accusations and starving anyone involved out of government

> grant funds. End result being that the people at the forefront of this

> research are starved out of cash, overworked and demoralised. In order

> to survive this research desperately needs lots of outspoken advocacy

> and support right now. But while all this has been going on most autism

> parents are too absorbed into autism=mercury narrative to even notice!!

> I can't help but find this … perplexing? Sad? Not sure what the word

> is…

>

> In short a golden opportunity to bring about MAJOR paradigm shift in the

> way autism is perceived and treated and supported is about to sink

> unless nothing is done on advocacy front in near future.

>

>

> So yes the mercury=causation theory does not really matter. Until it

> does, until it shapes things in such a way that it paralyses progress.

> As is happening right now.

>

> Then again maybe it is the way it should be, maybe we are not supposed

> to `know' things, maybe autism is meant to be with us forever,

> some Original Sin crap or something, perpetuation of suffering for

> generations to come. Should any of us care? Should I care? I'll

> definitely try not to. Will shut up.

>

[Guest guest]

>

>

> This to clear few things up from my perspective if anyone is interested,

> long but then I'll stop promise LOL.

>

> As most know I've never bought into mercury-causing-autism theory in

> the past, it never made much sense whichever way I looked at it, it

> makes even less sense to me now, and especially after carefully reading

> papers on developmental outcomes of congenital mercury exposure (in

> which all classic Autism symptoms are clearly absent), or those on both

> acute and chronic/subclinical exposures in children and adults... And

> yes I do believe that many chelators are potentially fantastic for our

> kids, and for reasons that may not have much to do with metal removal

> (yes I DID post loads of science on those effects on this one and many

> other lists a good while ago, if anyone is interested can search… ),

> and that chelation for those who tolerate it is a good part of biomed

> and that is one of the reasons I try not to bring up the issue of

> causation, and also because what is the point anyway. That is not to say

> that mercury or metals might not in some yet-to-be-discovered way be

> contributing to autism, but that is a far cry from them being causative

> factors. But this is not why I'm posting this, as not willing to argue

> any of that now or in future… actually I forgot what the point was.

> Ah yes, Advocacy! Because causative factors don't matter if the

> treatment is going to be the same, no?

>

> But lately something has been happening. A small group of researchers

> has been coming up with some incredibly exciting discoveries that could

> have enormous effects for our kids. If this research pans out it will

> have the potential to start on the path of many novel treatments –

> even for severe kids and those who don't respond to biomed,

> including kids who remain very much autistic after a decade of

> chelation/biomed, it would also help tailor treatments to those who are

> responders and are doing well but not off the spectrum … of course

> these discoveries, if confirmed and allowed to expand and translate into

> clinical trials, will not bring instant (or even long-term) solutions

> for everyone BUT they would bring about a permanent shift in how autism

> is perceived by mainstream doctors and public – the undeniable (to

> mainstream) proof that autism is medical and should leave the realm of

> psychobabble/behavioural science. No more eye-gazing studies, ever. This

> new knowledge would also have the potential to halt the explosion of

> autism, and if not get rid of it completely then soften the blow...

>

> This research is under real threat of getting squashed, because of some

> powerful people with a lot to lose if it pans out, and the very same

> people who buried similar research 20 years ago are very busy trying to

> do the same thing right now - through fake negative studies, public

> attacks, accusations and starving anyone involved out of government

> grant funds. End result being that the people at the forefront of this

> research are starved out of cash, overworked and demoralised. In order

> to survive this research desperately needs lots of outspoken advocacy

> and support right now. But while all this has been going on most autism

> parents are too absorbed into autism=mercury narrative to even notice!!

> I can't help but find this … perplexing? Sad? Not sure what the word

> is…

>

> In short a golden opportunity to bring about MAJOR paradigm shift in the

> way autism is perceived and treated and supported is about to sink

> unless nothing is done on advocacy front in near future.

>

>

> So yes the mercury=causation theory does not really matter. Until it

> does, until it shapes things in such a way that it paralyses progress.

> As is happening right now.

>

> Then again maybe it is the way it should be, maybe we are not supposed

> to `know' things, maybe autism is meant to be with us forever,

> some Original Sin crap or something, perpetuation of suffering for

> generations to come. Should any of us care? Should I care? I'll

> definitely try not to. Will shut up.

>

[Guest guest]

following these threads with great interest, i'm open minded and have enjoyed

the debate.

just for the record, i'm using DAN chelation protocol with great results. to be

very honest, i think there are a lot of people like me who don't post about it,

as this seems almost like an AC chelation list. i'm happy to read about kids

doing well whatever protocol, so it doesn't bother me. i know other parents

doing same DAN protocol with jean muscroft, who are also seeing great gains with

their children.

karenza

>

> , if you are seeing gains why would you stop?

>

> This thread was started by someone asking our opinion on whether IV chelation

was safe and whether to go with the DAN or Andy Cutler's (AC) chelation

protocol. Many people emailed to let her know their positive personal

experience with AC chelation, myself included. No one emailed to say how happy

they were with DAN chelation and no one has posted any personal negative

experience with AC chelation.

>

> Every single person who responded in favour of AC chelation is actually doing

it with their child. We are speaking from our own experience, and we are all

saying how positive it is. AC chelation has changed my family's life to a

degree that I would say is miraculous in such a short period. Maybe this is why

people are so happy to share their experience with others who ask them and not

because they are brainwashed.

>

> I would hate it if this thread has put other people off starting AC chelation

because except for one person who may or may not have tried it, every other

person on this thread who is doing AC chelation has had a great experience with

it. I do understand that it feels like we are being told we are wrong, but

clearly there are enough of us saying it works that this is not possible.

>

>

[Guest guest]

Out of interest za what is the reason given for not doing AC?

I made my decision based on the information as to why that is the one to use, given that I am just a mum and no scientific brain at all but I don't recall seeing the reasons for the DAN approach.

I like the idea that AC is explained in simple terms that make sense to me. Has anyone doing DAN chelation ever asked, think we have already established that it is widely followed so it begs the question, why not? Having said that twice I have been told by DANS they do not do AC and never asked them why not?

Vicky

Re: Musings on Progress in science and why I say things I do but won't any more

following these threads with great interest, i'm open minded and have enjoyed the debate.

just for the record, i'm using DAN chelation protocol with great results. to be very honest, i think there are a lot of people like me who don't post about it, as this seems almost like an AC chelation list. i'm happy to read about kids doing well whatever protocol, so it doesn't bother me. i know other parents doing same DAN protocol with jean muscroft, who are also seeing great gains with their children.

karenza

>

> , if you are seeing gains why would you stop?

>

> This thread was started by someone asking our opinion on whether IV chelation was safe and whether to go with the DAN or Andy Cutler's (AC) chelation protocol. Many people emailed to let her know their positive personal experience with AC chelation, myself included. No one emailed to say how happy they were with DAN chelation and no one has posted any personal negative experience with AC chelation.

>

> Every single person who responded in favour of AC chelation is actually doing it with their child. We are speaking from our own experience, and we are all saying how positive it is. AC chelation has changed my family's life to a degree that I would say is miraculous in such a short period. Maybe this is why people are so happy to share their experience with others who ask them and not because they are brainwashed.

>

> I would hate it if this thread has put other people off starting AC chelation because except for one person who may or may not have tried it, every other person on this thread who is doing AC chelation has had a great experience with it. I do understand that it feels like we are being told we are wrong, but clearly there are enough of us saying it works that this is not possible.

>

>

[Guest guest]

Hi za,

How long have you been doing it and what gains are you seeing ?

I did ask for some feedback on either type of chelation on Jean's forum and

apart from yourself, only parents doing AC chelation replied and this of

course doesn't involve the DAN practitioner.

Another mum posted here not so long ago that her DAN practitioner had

recommended AC chelation as her son was sensitive (!??), am not sure if this

meant he was sensitive to different supplements cos I would have thought all our

kids are sensitive to something or other......

Thanks Nina

> >

> > , if you are seeing gains why would you stop?

> >

> > This thread was started by someone asking our opinion on whether IV

chelation was safe and whether to go with the DAN or Andy Cutler's (AC)

chelation protocol. Many people emailed to let her know their positive personal

experience with AC chelation, myself included. No one emailed to say how happy

they were with DAN chelation and no one has posted any personal negative

experience with AC chelation.

> >

> > Every single person who responded in favour of AC chelation is actually

doing it with their child. We are speaking from our own experience, and we are

all saying how positive it is. AC chelation has changed my family's life to a

degree that I would say is miraculous in such a short period. Maybe this is why

people are so happy to share their experience with others who ask them and not

because they are brainwashed.

> >

> > I would hate it if this thread has put other people off starting AC

chelation because except for one person who may or may not have tried it, every

other person on this thread who is doing AC chelation has had a great experience

with it. I do understand that it feels like we are being told we are wrong, but

clearly there are enough of us saying it works that this is not possible.

> >

> >

>