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).

Patent?

Accusations?

Like this news for example;

Doctors have suspected a link between autism and digestive problems for years. Now Houston researchers are testing a drug with such potential, that the Food and Drug Administration has fast-tracked it. Scientists believe it may improve autistic behaviors.

Zoe takes the study medication mixed in her food. It helps her digest protein. Doctors believe many children with autism can't digest protein, which would cause them to lack amino acids that are critical in producing neurotransmitters for the brain. They believe resolving the digestion problem may help the autism.

Well knock me down with a feather. Known for years eh!

Of course people who have read the Lancet paper see the significance of this straight away.

Nobody tried to discredit the Royal Free Beach - that was your own misinterpretation of someone's post. Good derailing though.

Why won't you address the conflict of interest issue? Oh, and explain where I have been offensive and rude to you?

Beachcomber, if you cast your mind (way!) back to the start of the thread, it was about Ben Goldacre? And a lot of science types came on to the thread to say they like what he's done with the general how-to-interpret-scientific data thing?

And then we went off down the 'he lied about Wakefield'/'he has CoIs' route, and the science types stuck around to defend him. At no point did any of us say that we were experts on autism science? (I think)

I barely know who Brian Deer is, and I'm pretty sure I've never read an article by him. It doesn't affect my ability to read Wakefield's papers and a GMC report, though, right?
From my casual awareness of the world of science, it seems there is a link between bowel disease and autism, and if treatments can be put together from that, then that's a good thing...I don't see anyone arguing that it's not?

(sorry, a lot of question marks in that post, it's a big thread and I'm aware I may have missed stuff)

oh so very sorry beach ....I started this thread because I liked BG and his attempts to educate...I didnt realise I needed to be up to speed on any or all of the random shit you have dragged into it.....

Seeker.....I feel your pain, it will never be addressed by those you want an answer from.

It's nice that out of the debacle of the Wakefield study some good may come to parents of autistic children by this cfgfd but these aren't the main issues being addressed or under scrutiny to those of who believe Wakefield did a huge disservice to the medical profession by linking autism to MMR . By sidetracking the arguement and debate into Wakefield's impropreity and condemning anyone who suggests he was unethical and his work tainted by exposure to lawyers and legal aid funding shows they have no recourse or comeback to this line of questioning

how do you equate 'doctors have suspected' with 'known for years'?

this thread may not make it to 1000 after all

entropygirl, it does indeed happen, sadly.

I fully understand why some treatments may not be offered, but liek you - to deny even that they are worth investigating is just sickening.

but yes, approach a gp with an autistic child who has gut issues and the answer you iwll get is 'yes, that is to be expected. next!' no curiousity as to why, no investigation at all.

the only way to deal with it is to do some research, find the people who are trying to help, and get on with it (privately and expensively)

I even offered to dd1's then team of paed, gp, dietician, to put her back on a gluten/casein diet (they wrre denying the benefits and writing them off as 'coincidence' - another word that crops up a lot in autism circles), so they could take a baseline, and then ee the benefits firsthand - in bowel health, in pain response, in language, in everythign really.

but they refused. not because it wouldn't be ethical (to put dd1 back through the misery), but because they wanted their nice cosy position of 'the parent believes it helps'

and yes, trying to avoid similar gut issues in dd2 (there tends to be family associated sensitivities) nearly triggered a child protection issue, as dd2 was being investigated for FTT, and already had gut issues (wonder why I wante to keep her gf/cf?) and yet I was told I was doing her more harm than good, and that it was all in my mind (dd1's imprvements etc)

huh - I followed a few of beach's links...they were to websites that contained so many gcse biology level errors that it was hard to read through the tears of rage.

Well I would find it hard to justify putting the misery back in as it wouldnt be part of a placebo controlled trial and so even if you found a repeat of the misery and then a repeat of the improvement it would not prove anything.

I think you may be reading the wrong message in that from your GP's (hopes desperately that they arent the dicks you think they are - but with no evidence at all...)

Coincidence is a complete bastard. As is the placebo effect when it comes to small numbers. I am sure you know this though. It looks as though trials are being done on the diet front though. So more information will turn up soon.

Boulevard yes fair enough people don't necessarily know these things about autism science. As you say it wasn't the original topic of the thread.

I just think it is concerning that people who seem very very sure of what side they fall on in this controversy, do not understand the significance of the links I have posted.

The Royal Free team write about the gut/brain link in the Lancet paper - they write about CFGF and protein digestion.

They were ridiculed for a long time for it.

But it turns out they were bang on the money.

I just imagined that posters who have quite strong opinions on the Lancet paper would be aware of what was in it.

well, frst of all they wouldn't accept my baselines and scores - hence the offer for them to do it (and 'my' baselines were overseen by professionals too)

there would have ben added cost and benefit - if they had accepted any improvement for dd1 (not talking about anyone else, in this instance) then gf/cf stuff could have been given on prescription - and even 5 years ago it was quite hard ot find some of the stuff/range of brands etc. I used to import form America. hugely expensive.

sadly dd2's paed was jsut a dick - he also refused to tell me test results, refused to discuss what he thought might be wrong with dd2 as 'it would just worry me' and tried to barter with me with her test results (ie I had to agree to get dd2's jabs done before he would tell me the results - since I was holding off on the jabs waiting for those test results, that wasn't a smart move on his part)

but hey. we've moved now, and no longer have to see the arsehole.

I had the same rage (on a different scale) with HG. Going to the doctors and asking them to help as I am incapacitated with nausea and dehydrated from vomming.

Doctor: ahh yes well that will happen.

Me: that is a totally unacceptable view point FIX IT.

Doctor: the real problem is that there is no treatment that shows better effect than placebo available.

Me: WTAF? why dont pregnant women matter? Are we supposed to retire from our jobs the moment we get pregnant?

Doctor: well actually there was a treatment, called thalidomide.

Me: ahh yes I see the problem....you can make an anti-HG drug but how are you ethically going to test it....

Doctor: Hopefully it will stop being so bad soon

Me: ooops I appear to have vommed on your shoes.....so sorry.....

ARGH beach I know what was in Lancet but that was one of the findings that did not stand up to attempts to reproduce it!

You've got 36 posts to address the Wakefield/ patent conflict of interest. If there's a perfectly simple explanation that exonerates him, then why not give it?

silverfrog argh for a totally different reason. That is totally shocking! Have the jabs or I wont give you data you are legally entitled to????????

I have not enough question marks.

lots of people suspecting a connection does not add up to anyone proving a connection. at all. in any way.

Ben Goldacre stands for hard facts over comrtable belief and spurious cant.

Little surprise so many on MN hate him.

29 posts left, beachcomber

God this thread has made me angry. and determined. and terrified. and convinced that the person on the street has no clue about the way academic departments get things done. and convinced that you can 'prove' anything with the power of the internet and the shit some people fill it with.

entropy - well, you see, it was all in my best interests.

I was just panicking, after all, and making stuff up, because dd1 is autistic. and so, of course, I was paranoid that dd2 was as well (except I wasn't), and was 'looking for somethign to be worng' (except I wasn't - I was only there becasue I thought not to follow suggested test procedure would be a bad thing given the assumptions made about 'autism parents'' dd2 was tiny, but healthy and happy)

and most of all, he was a chauvinistic arse - I couldn't possibly understand because I was 'just a mum'

he (angrily) gave in when I told him what I was expecting the test results to say (accurately), and what it meant, and why I was/wasn't concerned accordingly - he then grudgingly confirmed the results.

and grudgingly confirmed that jabs were not a good idea at that point.

wanker.

silverfrog again I have not the words...but go you for sticking it to him. you were the inspiration for my 'determined' as an outcome of this thread btw.

I still remember with shock the first doctor that treated my like a functioning rational adult. One of the other sort...the oh no dont tell me what you think it is...it wont be whatever you think it is types landed my in intensive care when I was 16. He broke all the guidelines going in his determination that it couldnt be what we thought it was, and guess what?

yup we were right.

I think doctors are (on the whole) getting better though...its been a long time since I got an 'I am right, now stop bothering me little girl' type.