Re: Article by Fitzpatrick anti just about eve...

[Guest guest]

In a message dated 24/07/2006 18:14:53 GMT Daylight Time, oneill_liam@... writes:

There are a lot of people on here giving advice and medical opinion without any form of medical qualifications.

Dear Liam

I get what you are saying and of course there is much research required. However, I dont think we try to pretend to be anything we are not, parents trying to help our kids and each other. I would not say this constitutes medical advice and actually find this statement quite insulting. Every day, everywhere people pass remarks on medical issues without having a medical qualification eg. someone once told me that the product RESOLVE was great for hangovers! I didnt ask to see their CV before I tried it for myself.

We are all parents (mostly) suppoerting each other in an area where there isnt a lot of expertise and I can assure you that even some of the REAL medics on the list know nowhere as much as Mandi about chelation and thats a fact.

Dont mean to be rude, we are only trying to help others not endure the same agony some of us oldies have, but I totally agree with you real research and honesty would be a step forward.

With Kind Wishes

Caroline Traa, Aberdeenshire

xx

[Guest guest]

For me the worst bit is right at the end, Charlotte and her views on acceptance.

Yet again it's insinuated to look for a cure is not to love your child grrr.

Where do some people get off, it could also be said the other way round.

Vicky

[Guest guest]

In a message dated 24/07/2006 15:32:52 GMT Daylight Time, bbrowne123@... writes:

What's his agenda? and how come people like this get to print so many paragraphs.

>>>Who knows he has a kid with autism that had the MMR and states catagorically that there is no connection. His book retails for about £50 I think.

Much better read is Throwers huge thorough and inclusive report on MMR

Mandi x

PS shall we invoite him to the conference?

[Guest guest]

In a message dated 24/07/2006 18:14:16 GMT Daylight Time, oneill_liam@... writes:

In one way, I can see his point of view. There are a lot of people on here giving advice and medical opinion without any form of medical qualifications.

>>I'd prefer to say we are sharing experiemces. If other parents had not done that for me over the past 6 years my kid would still be dribbling in the corner with his hands over his ears pooping and peeing without being aware he was doign it and runnign into walls with no idea he had hurt himself

That's quackery. People are spending a lot of money and a lot of them don't see improvements.

>>Money doesn't = improvements, hard w0rk, research and a whole bunch of luck does that

That's a reason to to be annoyed. And I think I know who the Harley Street doctor is that he refers to with the secretin injections. Money grabbing snake is an approproate term for this guy.

>>I concurr. I met him on 2000, arrogant and opinionated (that last one is me too BTW) were not strong enough words for him. However, this turn to alternative treatments is also a reflection on the poor state of research into the biologiclal implications of ASD. In such a vacumm of information, parents are going to do what we can to help our kids. What else can we do. We have to try. If that means we give each other advice on "unproven" treatments, then so be it.

>>Yep - everything about treatign Autism is parent driven and has been since the beginning. There would be no biomed without parents pushingThe big problem is that no one is publishing serious medical trials in mainstream medical journals.

>>There are a few, gettign the right people to read them is another matter. Who wants to be in the double blind where your kid doesn't get the chelator? You can't do a crossover trial on somethign that takes so long to be fully effective : Dr El Dar )?sp) got approval for a chelation study but didn't proceed in the end because she said she wasn;t comfortable withholding real treatment from kids who has a better chance if they had the treatment from the get go.

And the isolated publications that do appear can easily be dismissed due to their solitude. Publishing in obscure journals or at DAN! conferences is not producing credible science that the experts will believe. Until there is a body of published data in mainstream medical literature, no medical doctor will beleive that what we do is correct.

>>and until we fight to get that to happen nothing will changeI'm a research scientist.

>>I'm a mum

I've critically examined a lot of the stuff that is published on ASD "treatments". IMO, it's generally not proven. It's not scientific. It's often dodgy as hell. It's sometimes completely nonsensical and contradictory.

>>Thats why I prefer to read of the experince of others and look for signs that a child might present like my child and see if we can learn from each other. My kid is complicated by 3 seperate Dx not just one though and as yet have not found another one like him

But in there, I can see elements of data and information that are coming together. Lathe has drawn a lot of this into a good book (dismissed by Fitzpatrick due to guilt by association) and for this reason, I think what we are doing is right.

>>I'nm glad Lorene is away and I hope she doesn;t have a laptop with her, the ATT has been planned and fought for the clinic for many years, Fitzpatricks comments I find obscene

I'm still new to this and learning every day, but I'm treating my son with ABA, CF/GC, vitamins, DMSA, GSH, etc. I'm not seeing any wows, but it has helped a little and I think it will help in the long run.

>>for ABA and chelation you have to be in for the long haul. With diets and supps you can reexamine, test and trial along the way. We basically didnt't see much in the way of gains until 2 years into biomed. Part of that was picking the wrong things to do - ie CFGFand delaying chelation and part because we had no nutritonal testing to guide us - issues with money and finding an appropriate practitioner. We just have to hang in there, help each other out and ignore those who won't try alternatives.

>>for sure - I can't see how you can ignore biomed if there is a possibility of helping my child to be healthy but there are plenty that do and look upon me as a poor cow who can't accept her kids Dx and is trying to change him. I asked one of these annoying people the other night - did your child regress? Yes - so I ask why don;t you want to know what happened to him? She said it was her way of coping??? I said if he was normal and got sick after 18 motnhs - would you wnat to know what happened to him then? I said if you don't test you'll never know and I closed the conversation for a change. We meet at least 3 times a year and she always intorduceds me as Mandi thinks....., so I interupt and say actually Mandi KNOWS - and has the tests to prove it and smile

Do you have any ideas of studies ou'd like done? Could you write a proposal? There are grant funders out there. Zoe suggested we take 20 kids with GI issues and pill cam them and then we have video evidence, gettign somebody to do it would be harder than gettign the money for it in this country I think

One of the things the Team and TA want to do is to challenge NICE to review the evidence - they look anecdotally as well as studies - anybody here wnat to help us fill inthe form? Been on the backburner while we are all in conference and petition frenzy

Mandi in Poole

[Guest guest]

I believe Dr Fitzpatrick's son actually goes to an ABA specialist school and Charlotte 's children go to a specialist autism unit attached to a school and have ABA at home after school. So educationally they would appear to be much better off than most children with autism.

margaret

Re: Re: Article by Fitzpatrick anti just about eve...

For me the worst bit is right at the end, Charlotte and her views on acceptance.

Yet again it's insinuated to look for a cure is not to love your child grrr.

Where do some people get off, it could also be said the other way round.

Vicky

__________ NOD32 1.1677 (20060724) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

In a message dated 25/07/2006 00:22:17 GMT Standard Time, m.collins9@... writes:

I believe Dr Fitzpatrick's son actually goes to an ABA specialist school and Charlotte 's children go to a specialist autism unit attached to a school and have ABA at home after school. So educationally they would appear to be much better off than most children with autism.

margaret

Yes, this was very strange that he lumped all these people together. I've read Isn't Talking, and Sam, Let me Hear Your Voice, etc...and although talks a lot about acceptance, she does endorse ABA and has one of her sons on GF/CF, trialled the other, and talks some about other bio-med stuff. She says that one of her son's was much better off on the supplements until they weaned him off his bottle at 6 or 7 and then he flat out refused to take them any longer. She also attributes the younger son's severe regression at 6 to the physical state of his body.

It's quite misleading what he says about her (and others)!!

DarlaLondonDH BobanDS 2 years and 2 months

[Guest guest]

Did you notice how he completely contradicted himself when he pointed out that while Venables thought that the MMR had caused Ollie's autism, they didn't find the measles virus in his bowel biopsy. Does that mean that those that do have the measles virus in their bowel biopsy therefore were linked with the MMR? He also completely missed the point, to a point where, IMO, makes him a sicko, that a Dr in the UK blamed the high dose B6 he was put on in America as causing his fits. If he can read that book then say that, he doesn't deserve to be called a doctor anyway, as he is too wrapped up in what he thinks he can't see what's staring him in the face. Glad he's not my GP.

Diane

Re: Re: Article by Fitzpatrick anti just about eve...

In a message dated 24/07/2006 18:14:16 GMT Daylight Time, oneill_liam@... writes:

In one way, I can see his point of view. There are a lot of people on here giving advice and medical opinion without any form of medical qualifications.

>>I'd prefer to say we are sharing experiemces. If other parents had not done that for me over the past 6 years my kid would still be dribbling in the corner with his hands over his ears pooping and peeing without being aware he was doign it and runnign into walls with no idea he had hurt himself

That's quackery. People are spending a lot of money and a lot of them don't see improvements.

>>Money doesn't = improvements, hard w0rk, research and a whole bunch of luck does that

That's a reason to to be annoyed. And I think I know who the Harley Street doctor is that he refers to with the secretin injections. Money grabbing snake is an approproate term for this guy.

>>I concurr. I met him on 2000, arrogant and opinionated (that last one is me too BTW) were not strong enough words for him. However, this turn to alternative treatments is also a reflection on the poor state of research into the biologiclal implications of ASD. In such a vacumm of information, parents are going to do what we can to help our kids. What else can we do. We have to try. If that means we give each other advice on "unproven" treatments, then so be it.

>>Yep - everything about treatign Autism is parent driven and has been since the beginning. There would be no biomed without parents pushingThe big problem is that no one is publishing serious medical trials in mainstream medical journals.

>>There are a few, gettign the right people to read them is another matter. Who wants to be in the double blind where your kid doesn't get the chelator? You can't do a crossover trial on somethign that takes so long to be fully effective : Dr El Dar )?sp) got approval for a chelation study but didn't proceed in the end because she said she wasn;t comfortable withholding real treatment from kids who has a better chance if they had the treatment from the get go.

And the isolated publications that do appear can easily be dismissed due to their solitude. Publishing in obscure journals or at DAN! conferences is not producing credible science that the experts will believe. Until there is a body of published data in mainstream medical literature, no medical doctor will beleive that what we do is correct.

>>and until we fight to get that to happen nothing will changeI'm a research scientist.

>>I'm a mum

I've critically examined a lot of the stuff that is published on ASD "treatments". IMO, it's generally not proven. It's not scientific. It's often dodgy as hell. It's sometimes completely nonsensical and contradictory.

>>Thats why I prefer to read of the experince of others and look for signs that a child might present like my child and see if we can learn from each other. My kid is complicated by 3 seperate Dx not just one though and as yet have not found another one like him

But in there, I can see elements of data and information that are coming together. Lathe has drawn a lot of this into a good book (dismissed by Fitzpatrick due to guilt by association) and for this reason, I think what we are doing is right.

>>I'nm glad Lorene is away and I hope she doesn;t have a laptop with her, the ATT has been planned and fought for the clinic for many years, Fitzpatricks comments I find obscene

I'm still new to this and learning every day, but I'm treating my son with ABA, CF/GC, vitamins, DMSA, GSH, etc. I'm not seeing any wows, but it has helped a little and I think it will help in the long run.

>>for ABA and chelation you have to be in for the long haul. With diets and supps you can reexamine, test and trial along the way. We basically didnt't see much in the way of gains until 2 years into biomed. Part of that was picking the wrong things to do - ie CFGFand delaying chelation and part because we had no nutritonal testing to guide us - issues with money and finding an appropriate practitioner. We just have to hang in there, help each other out and ignore those who won't try alternatives.

>>for sure - I can't see how you can ignore biomed if there is a possibility of helping my child to be healthy but there are plenty that do and look upon me as a poor cow who can't accept her kids Dx and is trying to change him. I asked one of these annoying people the other night - did your child regress? Yes - so I ask why don;t you want to know what happened to him? She said it was her way of coping??? I said if he was normal and got sick after 18 motnhs - would you wnat to know what happened to him then? I said if you don't test you'll never know and I closed the conversation for a change. We meet at least 3 times a year and she always intorduceds me as Mandi thinks....., so I interupt and say actually Mandi KNOWS - and has the tests to prove it and smile

Do you have any ideas of studies ou'd like done? Could you write a proposal? There are grant funders out there. Zoe suggested we take 20 kids with GI issues and pill cam them and then we have video evidence, gettign somebody to do it would be harder than gettign the money for it in this country I think

One of the things the Team and TA want to do is to challenge NICE to review the evidence - they look anecdotally as well as studies - anybody here wnat to help us fill inthe form? Been on the backburner while we are all in conference and petition frenzy

Mandi in Poole

[Guest guest]

In a message dated 25/07/2006 15:59:12 GMT Standard Time, oneill_liam@... writes:

Unless a double blind pacebo trial is undertaken to show that chelation offers statistically significant improvements, the medical community won't take these treatments on board. Could this be done with a group of parents who (a) wish to try chelation( are totally opposed to it.

Yes, this is what I had thought too but doesn't double blind mean that ALL are given medication, some placebos and neither the docs nor the patients know whether they are being chelated or not? No group of parents would consent to this if they had strong feelings one way or the other about chelation. I know I wouldn't.

Perhaps you mean a control group of kids who are not chelated and a group of kids who are chelated and measuring the two against each other? or am I misunderstanding?

There was a study shown on the danwebcast by Dorren Gree.....(whatever her name is) where they measured a group of kids using bio-med against a control group of kids not using bio-med. The kids in both groups were matched equally according to psychometric testing. The kids on bio-med showed consistenly that they were moving through their ABA programs faster than the kids who were not on biomed. This sounds like a similar type of study??

Darla

[Guest guest]

Hi Caroline,

Sorry if I upset you. I didn't mean to offend. I'm totally on board

with parents sharing info. If I didn't get info from pages like

this, my little boy would probably still be regressing now, rather

than improving. I'm forever grateful for that.

I was just trying to point out the view that the traditional medical

community takes of activities such as these.

>

>

> In a message dated 24/07/2006 18:14:53 GMT Daylight Time,

> oneill_liam@... writes:

>

> There are a lot of people

> on here giving advice and medical opinion without any form of

> medical qualifications.

>

>

> Dear Liam

> I get what you are saying and of course there is much research

required.

> However, I dont think we try to pretend to be anything we are not,

parents

> trying to help our kids and each other. I would not say this

constitutes medical

> advice and actually find this statement quite insulting. Every

day, everywhere

> people pass remarks on medical issues without having a medical

qualification

> eg. someone once told me that the product RESOLVE was great for

hangovers! I

> didnt ask to see their CV before I tried it for myself.

> We are all parents (mostly) suppoerting each other in an area

where there

> isnt a lot of expertise and I can assure you that even some of the

REAL medics

> on the list know nowhere as much as Mandi about chelation and

thats a fact.

> Dont mean to be rude, we are only trying to help others not endure

the same

> agony some of us oldies have, but I totally agree with you real

research and

> honesty would be a step forward.

> With Kind Wishes

> Caroline Traa, Aberdeenshire

> xx

>

[Guest guest]

Mandi,

I still haven't seen a lot of stuff in the high impact journals.

It's generally appearing in the less significant publications. What

I have read is sometimes good. The Griers have done some nice work

and shown statistical correlations, just as one example.

Basically, a lot of the data has been collected. We know that DMSA

pulls mercury. We know mercury is toxic. We have papers showing that

our kids have high mecury burdens. What more is there to study?

The only bit that lets us down is that we only have anecdotal

evidence that kids improve. Unless a double blind pacebo trial is

undertaken to show that chelation offers statistically significant

improvements, the medical community won't take these treatments on

board. Could this be done with a group of parents who (a) wish to

try chelation

( are totally opposed to it.

Track each kids using an appropriate monitor system (CARS, ATEC,

porphoryn, Hg in urine, etc.) Video evidence is nice for

conferences, but doesn't suit publication in a journal.

If the people testing the kids are blind to which is which, then the

trial would be close to a placebo set up.

I'm a chemist, not involved in pharaceuticals and I don't know much

about FDA style drug testing, but this would seem convincing enough

to me. The big problem will be finding a high impact journal with

the guts to publish the results.

I don't have the resources to organise such a programme, but I'd

love to see it done.

As for Lorene, I have spoken to her and I've been very impressed

with her commitment and knowledge. She is helping me to treat my

son. I hope she doesn't take this guys criticism to heart. She has

my support anyway.

>

>

> In a message dated 24/07/2006 18:14:16 GMT Daylight Time,

> oneill_liam@... writes:

>........>

> >

> The big problem is that no one is publishing serious medical

trials

> in mainstream medical journals.

>

> >>There are a few, gettign the right people to read them is

another matter.

> Who wants to be in the double blind where your kid doesn't get

the chelator?

> You can't do a crossover trial on somethign that takes so long to

be fully

> effective : Dr El Dar )?sp) got approval for a chelation study

but didn't

> proceed in the end because she said she wasn;t comfortable

withholding real

> treatment from kids who has a better chance if they had the

treatment from the get

> go.

>

> And the isolated publications that

> do appear can easily be dismissed due to their solitude.

Publishing

> in obscure journals or at DAN! conferences is not producing

credible

> science that the experts will believe. Until there is a body of

> published data in mainstream medical literature, no medical

doctor

> will beleive that what we do is correct.

>

> >>and until we fight to get that to happen nothing will change

>

> ....... Lathe has drawn a lot of this into a good book

(dismissed by

> Fitzpatrick due to guilt by association) and for this reason, I

> think what we are doing is right.

>

>

> >>I'nm glad Lorene is away and I hope she doesn;t have a laptop

with her,

> the ATT has been planned and fought for the clinic for many

years, Fitzpatricks

> comments I find obscene

>.....

.....> Do you have any ideas of studies ou'd like done? Could you

write a proposal?

> There are grant funders out there. Zoe suggested we take 20 kids

with GI

> issues and pill cam them and then we have video evidence, gettign

somebody to do

> it would be harder than gettign the money for it in this country

I think

>

> One of the things the Team and TA want to do is to challenge NICE

to review

> the evidence - they look anecdotally as well as studies - anybody

here wnat

> to help us fill inthe form? Been on the backburner while we are

all in

> conference and petition frenzy

>

> Mandi in Poole

>

[Guest guest]

That's more or less what I was trying to describe.

Basically, as we can't really expect to see a true double blind

placebo experiment, then we'd have to settle for a control group.

Examination should be based on medical and psychological assessment.

But the examiners should be blind to whether or not the individual

kids had been treated.

I haven't seen this sort of study published in the medical

literature yet. If someone has seen this sort of thing then I'd love

to get a copy to read (and to take to my family doctor!!)

Liam

>

>

>

> In a message dated 25/07/2006 15:59:12 GMT Standard Time,

> oneill_liam@... writes:

>

> Unless a double blind pacebo trial is

> undertaken to show that chelation offers statistically

significant

> improvements, the medical community won't take these treatments

on

> board. Could this be done with a group of parents who (a) wish to

> try chelation

> ( are totally opposed to it.

>

>

> Yes, this is what I had thought too but doesn't double blind mean

that ALL

> are given medication, some placebos and neither the docs nor the

patients know

> whether they are being chelated or not? No group of parents

would consent

> to this if they had strong feelings one way or the other about

chelation. I

> know I wouldn't.

>

> Perhaps you mean a control group of kids who are not chelated and

a group of

> kids who are chelated and measuring the two against each other?

or am I

> misunderstanding?

>

> There was a study shown on the danwebcast by Dorren Gree.....

(whatever her

> name is) where they measured a group of kids using bio-med against

a control

> group of kids not using bio-med. The kids in both groups were

matched equally

> according to psychometric testing. The kids on bio-med showed

consistenly

> that they were moving through their ABA programs faster than the

kids who were

> not on biomed. This sounds like a similar type of study??

>

>

> Darla

>

[Guest guest]

In a message dated 25/07/2006 15:59:03 GMT Daylight Time, oneill_liam@... writes:

The big problem will be finding a high impact journal with the guts to publish the results.

>>>Indeed and the Americans go for Journal of Paediatrics mostly - what we need here is Lancet or nothing I think.

Peta was goinig to write the Geiers but I think onve they have been published by one journal thats it, it doesn;t get 'published again. Need to find out more about this but I am minus on time right now with conference and grants applications arghhhhhhhhhhhh

Mandi x

[Guest guest]

In a message dated 25/07/2006 16:36:36 GMT Daylight Time, rexel45@... writes:

There was a study shown on the danwebcast by Dorren Gree.....(whatever her name is) where they measured a group of kids using bio-med against a control group of kids not using bio-med. The kids in both groups were matched equally according to psychometric testing. The kids on bio-med showed consistenly that they were moving through their ABA programs faster than the kids who were not on biomed. This sounds like a similar type of study??

>>>grond-pah-shay I think is how you say it.

Lorene and Ken Aitken are doing study on kids at ATT in Scotland, plotting progress or otherwise of kids on biomed, will provide great info when they have enough kids through and tested - thats gonan be our best bet in the UK for now I think

Mandi x

[Guest guest]

>

>

> > Peta was goinig to write the Geiers but I think onve they have

been

> published by one journal thats it, it doesn;t get 'published

again.

>

> Mandi x

>

That's pretty much the case.

Once data has been published in one source, no other journal will

touch it. Publication is a method to distribute primary research,

and all data has to be original. The only exception is where a quick

summary paper, termed a communication, is published to highlight a

novel finding. This work can then be extended into a more detailed

study and the original data can be re-published as part of the more

comprehensive and detalied piece of work.

However, that's very rare.