to be a little in love with Ben Goldacre?

[entropyglitter]

Just read 'bad science' (finally) and I think I am in love.....

my favourite bit was Gillian McKeith thinking that oxygen (generated by chlorophyll) in your gut is not only plausible, but at all a good idea....

presumably this is at the same time as main lining anti-oxidants (which had been shown to increase your risk of disease rather than decrease it).

Brian Deer claims the Lancet 12 do not have any form of bowel disease. which is patently nonsense.

my dd has also been helped enormously by the gluten/casein free diet - which has come about directly from the work that Wakefield and his team did. it si also now starting to be accepted as 'true', with new drugs and enzymes being fast tracked throught he system.

I don't think any of you realise just what it is like to take a clearly unwell, in pain, suffering child to the doctor's to be told 'oh well, you shoudl expect that [bowel issues] with autism'

if I took my dd2 (NT) to the doctor's with the symptoms dd1 had then, I woudl be taken seriously. it would be investigated - even if the end result was 'we don't know', it would be looked into.

the difference?

dd2 would cry.

and show what are considered to be 'normal' reactions to pain.

it's odd. if I take dd1 to the doctor's with any other illness, they look to me to be her interpreter (to a lesser degree nowadays, as she is able to answer some simple questions at times) - to tell them where it is hurting her (from my knowledge of her, and my observationsa s her mother), and to tell them what her responses mean. they listen when I tell them that the minutest change of experession is probably a huge deal for her, but that she is unable to express it at that point.

I take her to discuss her (very obvious) bowel issues, and all of a sudden, the same doctor's dismiss my knowledge and observations - even though there is actual physical evidence of ehr suffering and discomfort (sorry TMI but bloody stools, undigested food, rancid diarrhoea etc).

now that is a travesty - to totally dismiss all thoughts of somethign being wrong because 'oh, that happens with autism'. no thoughts of helping alleviate discomfort, no thoughts of even investigating to see if there could be a treatment.

it would not happen to any other group.

but it is allowed ot happen here - ask yourselves why.

and please, for the love of god, stop dismissing anyone with a different viwpoint (usually a personally derived one, with years of experience, rather than a cosy sofa-driven one, or a bored let's-have-a-barney-on-the-net one) as a loony, tinfoil hat wearer.

try to come at it from the other side - why the denial of illness? why ignore obviosu symptoms? why won't doctor's treat our children? why do we have to do it ourselves, and then get branded as idiots for not following what the doctor says (ie, that there is no illness, that we are making it up, that our children are not in pain). try to look at it as if you were the parent of one of these children. what would you do? accept that you are a loon, who knows nothng about your child (even though you clearly do), or work out for yourself what is going on, realise it is what a whole lot of other people are saying too, and come to realise that actually, this has been known about and documented for quite soem time, yet is not being told to parents ever. (NOT talking about the mmr links here, but the stuff that can help the after effects of it, should a child have a serious reaction)

"So come on, let's call a spade a spade - if you agree with the GMC and Deer you are claiming that the Lancet children were not ill. Admit it. You must do because there is no other way to reconcile things otherwise."

No. Thwt is not what is being said.

Beachcomber, please address the Wakefield conflict of interest/Patent issue. I notice that you have avoided doing so thus far.

Silverfrog, I'm not sure that is a fair comment to make on this thread. Nobody has actually denied that the children were ill, or that your child is ill. The failure of the NHS to deal with your dd's bowel condition has little to do with Wakefield's trial, and the experimental flaws. The COI were real (whether disclosed or undisclosed) and so were the ethical failures. To counter these with an emotional argument about your dd's (very distressing condition) does not make all of Wakefield's failures invalid. How do you know people are arguing 'from the comfort of there own sofa'? - you don't know other posters' personal circumstances.

Tennant, no debating tactic.

Just my sincere opinion.

Deer claims the children did not have distressing bowel conditions. He has done this to the parent's faces outside the GMC.

Do you support this sort of behaviour?

He makes me sick.

I have read his stuff on this, it is the usual from Deer with half truths and his spin on them. The personal attack on Lewis is just nasty and dishonest. It is pure conjecture. How can you have any respect for a person who writes like this about a serious affair;

It appears that Lewis?s many disputes and complaints in the past have wasted much of what ought to have been a productive period in his life. I?ve no knowledge of the rights or wrongs of those conflicts, or whether he acted dishonestly with regard to his research on sewage sludge. It may well be that he has been traumatised by what has happened to him. Nevertheless, he?s responsible for his own conduct. It can?t be right that he seems intent on carrying on with me where he left off with the EPA. I believe that he needs counselling or other support, and in a letter to Kohn of June 2011, I set out my general analysis:

I have read Deer (and I'll never get that 15 minutes of my life back unfortunately).

I have no doubt that in the interest of getting to the bottom of this matter, you and others have read the Lewis Report (which is in disagreement with Deer's version), and the links I have provided to papers showing that Wakefield was right about the CFGF regime helping relieve children of some of their distressing bowel symptoms (providing one believes that these children were ill remember, which of course Deer says they were not). To agree with Deer is to agree that these children's, and children like them's, bowel symptoms are fabricated. It is to be in disagreement with the FDA and a number of medical bodies around the world. It is an untenable position.

www.ncbi.nlm.nih.gov/pubmed/19917211

www.autismone.org/content/clinical-presentation-and-histologic-findings-ileocolonoscopy-children-asd-and-chronic-gastr

www.eurekalert.org/pub_releases/2010-06/icl-afc060210.php

www.ncbi.nlm.nih.gov/pmc/articles/PMC3174969/

abclocal.go.com/ktrk/story?section=news/health&id=7353260

clinicaltrials.gov/ct2/show/NCT00881452?term=NCT00881452&rank=1

And I have to say it is just about as low as it is possible to go in a debate to play the "well, if you disqgree then you are calling all these good, honest people liars and saying that their obviously ill children aren't ill." and frankly it smacks of desperation. Answer the point about the patent and Wakefield's conflict of interest and show that you aren't disgracefully using ill children as a smokescreen.

by agreeing that Deer is actually telling something even approaching the truth on the Wakefield matter, you are denying the children are ill.

by extension, you are denying my dd is ill.

that is what Deer says. it is the crux of his argument (such as it is) - and then he goes on to recreate bits of history to fit his story.

he claims, againa nd again that there is no bowel disease in the Lancet 12. that Wakefield 'made it all up' - it has been repeated on this thread.

sorry if you found my account emotional - I tried to be factual about it, and did not want to play on the emotions. it is just the truth. I have been in hospitals and doctors surgeries and been treated like that, time and again. yet before dd1 was dx'd with ASD (she was 2.6 when dx'd so quite young) I was trusted. I ahve never mentioned mmr to doctor's - dd1 was autistic before her mmr.

but these denials of basic services have come about because no on ewill touch an ASD/bowel case. they wouldn't before 1998, either, which is how it all ende dup going through the Royal Free - they were the only team which would accept that the children were ill. that they needed treatment and investigation.

to say things like (pleas,e for just a second, set aside the GMC finding on this) 'the invasive testing was not necessary' and that the prcedures were unethical is ridiculous. these were ill children, who underwent clinical investigation.

to claim that this shoudl not have been done means you are denying their illness. Wakefiled and his team were doctors, who investigated their patients. that is all. they ordered investigative tests, based on histories and observations taken.

this case is all about the real people at the centre of it - people who are denied, who are told they are liars, who are told the illness does not exist.

but it does.

which just makes a mockery of the findings, tbh. these children (well, children no longer in some cases) still exist. their bowel problems still exist. their illness does.

and they can no longer be treated, because a journalist says they do not have bowel disease.

what a marvellous turn of events.

Silverfrog you are very very brave to come on this thread and write with sincerity and no 'debating tactics' about your child.

Thank you.

I hope nobody even attempts to have a go at you for this. I hope people have the respect to listen to you and consider what you say.

I hope you and children are doing OK. Hugs, Beach.

Beach - thank you.

no doubt it will be ripped to shreds.

dd1 is doing brilliantly, thank you. she is learning to read (she can keep pace with dd2's reading books - dd2 is in reception, dd1 is 7, so not too bad a gap), and to write, and she is showing amazing awareness of other people (I am pregnant currently, and suffering with morning sickness. I went for lie down yesterday, and when I got up, dd1 said 'is mummy feeling better now? do you need to go to the doctor today?' - really made me )

I hope your dd is also doing well? I think you show amazing tenacity on these threads, and I thank you for doing so.

Pag
Sorry you are having a rough week.

I do know that you often call people when they make extravagant claims about how they would feel if their child were murdered (or whatever it might be). You are of course right; we none of us know how we would feel.

But the one thing I would say is, people feel passionately about this topic because it is emotive and can be scary. Like Julian Fellowes said of Downton Abbey, nobody was finding problems with the accuracy of programmes nobody is watching. The same principle aplies.

People do feel strongly about this and it leads to 1000 post threads because we can all imagine ourselves in the position of a parent of a child with autism. And no, we don't know what that feels like. But please give us some credit to imagine what it must be like.

Hope you have a better week this week.

Beach and Siverfrog

I know your families are affected by autism and I feel for you and your families.

Ok, that's the end of any attempt at discussion. I do wonder why that always seems to happen - it's a shame. Never mind- I sincerely wish you all well.

Seeker I am losing count of the number of times you have been offensive or rude about me in a very personal manner on this thread.

Your posts are plain nasty.

Wanna address the CFGF science or it is more fun trying to order me around and getting personal with me?

Greythorne my family is not affected by autism.

Autism science and the autism community have been a terrific help to us in managing my child's health issues however.

Thank you for your thoughts though.

Beachcomber- I think you must have confused me with someone else- I have never been rude, nasty or personal to you.

seeker - it's the end of the discussion because, what? I remended you that this is about real people, not some theoretical debate?

it has always been about real people.

as BEach asks - why not debate the gfcf sicence? why not address why this was Not To Be Mentioned when it was a small scale thing that those crazy ol' mavericks at the royal Free recommended as a tryout, but now that there is money to be made, and drugs to be produced - suddenly it is the best thing since sliced bread. wonder why that would be (or why the origins of the reseach are never acknowledged )

And since when has the cfgf issue been the focus of this thread? A lot of people are healthier on a cfgf diet.

Since when was cfgf anything to do with Wakefield being struck off?

erm, threads move on - it hapens to be where we are currently.

but clearly you do not want to engage.

fine.

Please will someone address the wakefield/ patent conflict of interest?

SLT - if you do not know the relevance of cfgf to the work Wakefiled was doing, and the impact on bowel issues within a subset of autistic people, then I suggest you do some reading.

It wouldn't hurt, after all, to be in possession of at least some facts before trying to debate them.

Silverfrog that is fantastic about DD1 - well done all of you. I cannot imagine how good you must feel .

Congrats on your pregnancy! Hope the morning sickness doesn't go on too long. Hope your DD2 is enjoying reception.

Your posts on this subject are always very thought provoking.

I am indeed dogged tenacious

man its hard to find much evidence on the autism bowel issue connection because the MMR thing totally eclipsed it.

It would appear from and admittedly surface look that several groups have attempted to replicate the findings on the bowel/autism connection but have not found anything.

I am horrified that GP's wouldn't even attempt to treat the symptoms of a child in pain. Or even a child with obvious bowel issues even if they express that pain in a different way to non-autistic children. I have heard of this type of thing with post pregnancy bowel issues - that dr.s take the approach of oh well if you wanted a functioning bowel you shouldnt have had a baby. seriously WTAF.

I can understand that treatment that is not backed up as being successful would not be offered but that doesnt imply that Dr.s should just hold there hands in the air and deny any possibility of assistance.

It was nothing to do with what I am arguing on this thread - it wasn't the reason he was struck off. Don't insult me by telling me to do some reading.

Wakefield did not get into trouble for introducing a diet to children. He was struck off for COI's, failures in ethical conduct, and more. 30 counts no less.

Am really upset about this.

I know you prob think I have no right to be given it isnt happening to me but I hope you can allow some empathy exists between mothers.

Each ombre- while you're here- those accusations you made against me? Oh, and the patent/ conflict of interest issue?

Bollocks have I just spent all this time on a thread with a bunch of people who are absolutely not up to speed on current autism science and the origins of current therapies (hint the work at the Royal Free).

And there was me providing links and thinking people would a) read them b) understand the significance of them!

Lots of people have moved on from trying to discredit the Royal Free. They are too busy continuing their work.