Re: Test results/awareness raising

[Guest guest]

Well, Zoe I will give that some thought, they did it on a smallish scale with the fish oils by supplementing the kids themselves.

It's being done every day already by parents seeking funding for ABA by proving the results up against LEA provision.

Which brings me back to funding, if we receive funding for our kids supps, MB12, Chelation , etc., then that is a kind of admission that it works up against the NHS treatments [what treatments, lol].

Perhaps we need to concentrate some efforts on working as a group to provide evidence for funding and then once that's in the bag and enough of us have funding we can go on from there.

By the way did anyone see yesterdays newspaper on EU ban on amalgam fillings, due to health risks of mercury? If the piece is accurate it's all bits of evidence that put together on mass amounts to something resembling solid proof.

Perhaps we should all be putting out information at our local autistic societies anywhere were parents of newly dx kids are likely to be, schools, etc. and swell the numbers.

Do we have any idea of how many parents are doing biomed?

Vicky

xx

[Guest guest]

In a message dated 20/03/2006 16:01:38 GMT Standard Time, zoe@... writes:

What evidence was it you were thinking of providing?

>>>My case is based on Blood Lead levels which I know mean nothign but they will think they do LOL

I intend to present to the panel now my consultant paed has got cold feet after Dr H's letter explaining the tests - basically he knows he hasn't got a clue and is scared I think that they may ask him a question and then he will look silly.

IS there are argument about this finding in my son?

No - good

Is there nybody within the NHS qualified and experienced in treating chrpnic toxicity?

No - really?

So I have a sick poisoned child, the NHS can;t help but I have found somebody who can.

I can have funding! Thank yuo so much, I am proud to live in a postcode where the powers that be can make sensible decisions

Shall I wait or the cheque now?

Mandi x

[Guest guest]

No need to apologise Vicky - the more peeps that are passionate about

all this stuff the better!

Maybe we need to try to be active on many different fronts? Agree

getting the powers that be and the general public to see the

remarkable progress some of our kids have made is one of the best ways

to get the biomed message across. The problem is, how do we do that

when we are just a bunch of peeps who post on a list with few

resources between us?

Cue quick plug: Treating Autism is seeking funding to run awareness

campaigns and to resource members to lobby MP's and talk to the media

- any member can join TA's campaigning or PR sub-groups.

I would urge anyone who is interested in campaigning and raising

awareness to join TA - all members have kids with autism, and a

restricted amount of time to give, but the more active peeps there

are, the easier it is to share out the work, and the more work gets done.

www.treatingautism.com

Vicky I know you are already a member of TA and you are interested in

getting more involved (hooray!) so if you have ideas on how to get

them (researchers/govt etc) to play our game, TA's campaigning sub

group is waiting for you with open arms!

Zoe

>

> Would like to just take the opportunity to apologise to those of you

who

> have suggested sending test results, my comments were not aimed at

dissing the

> idea wholesale, I was thinking along the lines of not playing their

game

> anymore, and making them play ours.

> I still think of the hatchet job the powers that be did on

> Wakefield making him look at best completely misguided and at worst

a charlatan,

> despite all his research and standing in this field, and there are

many more

> reports and findings that completely diss everything we do, going

round in so

> many circles my heads spinning lol.

> Anyway, just wanted to straighten that out, if I didn't personally

believe

> in the tests I would never have had them done.

> Vicky

> xx

>

[Guest guest]

Zoe you made the point that we are just internet mums, and that's a good point, maybe we should come out, so to speak.

Jaquie seems to get on the T.V. with different is cool message, Sonrise gets a fair bit of autism T.V. and Marilyn Le Breton was in a Sunday supplement about GF/CF.

MMR has been done obviously but has there ever been one on biomedical, would certainly reach a wider audience, T.V. or Newspaper, heck Iv'e even seen people on and Judy talking fish oils and autism lol.

Still thinking about the proof question.

Vicky

xx

[Guest guest]

Fantastic Idea Vicky lets go for it everybody. I would love to be on and Judy.

Luv Caroline

xx

[Guest guest]

Go Zo Go...

[Guest guest]

Hi Vicky

What do you have in mind as 'evidence for funding'? We may have to

get a definitive definition of what evidence is required I think, as

all PCT's are different and will have slightly different criteria,

so what works in one area might not work in another.

What evidence was it you were thinking of providing?

Zoe x

>

> Well, Zoe I will give that some thought, they did it on a smallish

scale

> with the fish oils by supplementing the kids themselves.

> It's being done every day already by parents seeking funding for

ABA by

> proving the results up against LEA provision.

> Which brings me back to funding, if we receive funding for our

kids supps,

> MB12, Chelation , etc., then that is a kind of admission that it

works up

> against the NHS treatments [what treatments, lol].

> Perhaps we need to concentrate some efforts on working as a group

to provide

> evidence for funding and then once that's in the bag and enough of

us have

> funding we can go on from there.

> By the way did anyone see yesterdays newspaper on EU ban on

amalgam

> fillings, due to health risks of mercury? If the piece is accurate

it's all bits of

> evidence that put together on mass amounts to something resembling

solid proof.

> Perhaps we should all be putting out information at our local

autistic

> societies anywhere were parents of newly dx kids are likely to be,

schools, etc.

> and swell the numbers.

> Do we have any idea of how many parents are doing biomed?

> Vicky

> xx

>

[Guest guest]

You are a woman after my own heart! If I get this campaigning award

on behalf of TA (will hear on Monday) one of the goals I have asked

them to help TA with is securing a major media campaign.

If we dont get the award we will just have to make it up ourselves!

Zoe x

>

> Zoe you made the point that we are just internet mums, and that's

a good

> point, maybe we should come out, so to speak.

> Jaquie seems to get on the T.V. with different is cool

message,

> Sonrise gets a fair bit of autism T.V. and Marilyn Le Breton was

in a Sunday

> supplement about GF/CF.

> MMR has been done obviously but has there ever been one on

biomedical,

> would certainly reach a wider audience, T.V. or Newspaper, heck

Iv'e even seen

> people on and Judy talking fish oils and autism lol.

> Still thinking about the proof question.

> Vicky

> xx

>

[Guest guest]

Good Luck for the award ceremony Zoe. We'll be thinking of you.

Jane

Re: Test results/awareness raising

You are a woman after my own heart! If I get this campaigning award on behalf of TA (will hear on Monday) one of the goals I have asked them to help TA with is securing a major media campaign.If we dont get the award we will just have to make it up ourselves!Zoe x>> Zoe you made the point that we are just internet mums, and that's a good > point, maybe we should come out, so to speak.> Jaquie seems to get on the T.V. with different is cool message, > Sonrise gets a fair bit of autism T.V. and Marilyn Le Breton was in a Sunday > supplement about GF/CF.> MMR has been done obviously but has there ever been one on biomedical, > would certainly reach a wider audience, T.V. or Newspaper, heck Iv'e even seen > people on and Judy talking fish oils and autism lol.> Still thinking about the proof question.> Vicky> xx>