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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be a little in love with Ben Goldacre?

999 replies

entropyglitter · 09/01/2012 12:15

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).

OP posts:
Pagwatch · 16/01/2012 10:17

Ok. I am going to withdraw because I am sure that I am way to emotiional about this issue to be rational.
It is a particularly difficult week with my son and this thread is pushing wrong buttons.

Fwiw though I have heard the position that parents involved in the mmr debacle are 'looking for someone to blame' almost everytime this issue comes up -so often it is rarely even challenged.
I know you didn't say that Greythorne, but the suggestion that a parent would be upset at the successful discrediting of a theory implies clinging on to an irrational belief.
I don't care about the personalities involved, I just want some insight into my sons behavioural regression and gut issues. I agree, of course you can't dismiss impute from all those who do not have a direct experience of an issue but how else will anyone get some insight unless I explain?
In fairness to me (in spite of my obvious battiness this morning Grin) I am consistent on this and often challenge posters saying things like 'if someone abused my child I would want to kill them'. I get irritated when people say 'if this extraordinary and deeply challenging event occurred I would do x' .
It is rarely accurate.
And I can't be too angry with Wakefield. Whatever occurred before and since it was his suggestion of a gluten and casein free diet that stopped pageboys regression in it's tracks and led to him talking again after no speech for about two years.
But I do apologise that the tone of my post sounded so aggressive. It is just really hard to hear people debate this in point scoring tones. It's my life. My sons life. But I did over react to you. I'm sorry.

Seeker. It gets said all the time. I was talking about the usual tone of this particular debate.

SweetLilyTea · 16/01/2012 10:17

Don't be ridiculous Beach, we went through all this last night, his invasive procedures and blood taking seriously breached medical ethics.

NotDavidTennant · 16/01/2012 10:18

"Bit odd that Deer as complainant for the GMC didn't let them know about this 'fraud' on the part of the Royal Free team."

Because the descripancies didn't come to light until after the GMC hearing.

And let's be clear what you're defending here, Beachcomber. It was claimed in the original Lancet paper that biopsies revealed that most of the patients had "non-specific colitis", when in fact it has turned out that the majority of the biopsies were not abnormal. So the whole basis for the paper (which has been withdrawn anyway) has been undermined.

Beachcomber · 16/01/2012 10:19

Seeker have you not noticed that the patent application is in the name of the Royal Free?

I think we are in the realms of accusing the Royal Free of all sorts of things if we are not very careful what we say here.

seeker · 16/01/2012 10:21

and the C of I/patent application issue?

I am having a go at the Lewis Report, btw- but it seems to me to be just more of the same.

SweetLilyTea · 16/01/2012 10:23

Of course, it depends on your feelings on the GMC as well, Beach doesn't it?

If, like me you believe they are the General Medical Council, you will trust in their findings regarding Wakefield's science.

If you are like the person standing next to Wakefield in one of his photos, holding a placard stating "Governed by Medical Corruption", then I suppose you won't trust them.

Beachcomber · 16/01/2012 10:23

Ah pag I'm sorry to hear you are having a tough time.

I apologise for dragging this thing on.

I just care. But I'll shut up if this is hurting you. I'm Sorry Sad.

seeker · 16/01/2012 10:25

Are you saying that Wakefield was not connected to the Patent application in any way?

Interesting that BG is apparently discredited by a perceived "guilt by association" with the IoP, but Wakefield is not even remotely contaminated by the patent application..........

Pagwatch · 16/01/2012 10:25

No no.
You all carry on. I am being overly sensitive. I am going niw.
It's fine thanks.
We all have shit weeks Smile

NotDavidTennant · 16/01/2012 10:30

'I think we are in the realms of accusing the Royal Free of all sorts of things if we are not very careful what we say here.'

Showing that an individual or organisation has an undeclared conflict of interest is not accusing them of anything, other than shoddy research practices. Of course people may infer fraud, but that need not necessarily be the case.

bakingaddict · 16/01/2012 10:45

I work in science and more specifically virology so i'll try and clear up some issues over patent applications. When an individual is employed by a research organisation, be it a hospital, private medical company, university or pharmaceutical company the patent will always be held by your employer and not the individual researcher. Basically as your employer they 'own' your research. Patents are potentially lucrative with millions of pounds in revenue if successful so why would they hand it over to an individual employee and miss out on this money.

Fair enough if you have an amazing idea in the bottom of your garden shed unconnected to your work, then you can file name yourself as the patent orginator

Beachcomber · 16/01/2012 10:49

Because the descripancies didn't come to light until after the GMC hearing.

That is false.

Many of the discrepancies that Deer alleges were included in a report prepared for the GMC by a person called Professor Booth.

The Lewis Report contains info on this, including copies of emails from Booth demonstrating this.

Booth offered no explanation in his report as to why he used routine pathology reports, rather than Prof. Dhillon's and Dr. Anthony's grading sheets, to check the accuracy of Table 1. But, in an email to me, he explained that the GMC's solicitors specifically requested that he perform this analysis, and that it was used to prepare the GMC's case against Wakefield and two of his coauthors.[14] The GMC's solicitors never introduced Booth's report into evidence during the GMC's hearings.

I'm not sure if I'm allowed to post a copy of the email here so you will just have to read the previously linked to Lewis Report for that.

Beachcomber · 16/01/2012 11:08

Take care pag. Best wishes.

SweetLilyTea · 16/01/2012 11:14

He certainly had a professional interest though, even if he wouldn't be the 'owner' of the patent.

Plus this wasn't the only COI. COI's also arose in the children/parents used in the study and litigation against vaccine manufacturers. This constitutes a vested interest in finding a causal link between MMR and autism.

SweetLilyTea · 16/01/2012 11:18

COI's, vested interests, contravention of medical ethics, allegations of fraud - what's not to love about Wakefield's work?

bakingaddict · 16/01/2012 11:18

I think Beachcomber delibrately ignores the question in hand and instead fixates on some minor trivial points to steer the debate back to where they want it. Nobody is going to get rational well thought out debate from this person

If it wasn't submitted as evidence then it means that it was not forming part of the major legal arguement and was unnecessary in light of the more pressing and damaging evidence. Lots of evidence is submitted to courts or hearings in bundles, not all of it is used

SweetLilyTea · 16/01/2012 11:23

Bakingaddict I agree. Arguing points of minute detail is a tactic employed by conspiracy theorists as well. It serves to muddy the water...

bakingaddict · 16/01/2012 11:28

Oh I agree wholeheartedly with you SweetLilyTea, just that Beachcomber was trying to insinuate something out of nothing regarding the whole patent application

Imagine if big pharma funded and supplied all the subjects for a research study into a vaccine induced disease with suspicious medical ethics being deployed can you imagine the public outcry yet Wakefield supporters ignore all of this

bakingaddict · 16/01/2012 11:34

Should type faster....I thought Sweet, hence my 2nd post to you, that were trying to align me with Beachcomber, perish the thought as a working virologist! Good luck arguing with Beachcomber, I think i'll take a break now and get a coffee and a biccy

SweetLilyTea · 16/01/2012 11:36

No no, not at all baking addict :)

What you said was factual.

SweetLilyTea · 16/01/2012 11:40

Furthermore, I think the really fervent Wakefield supporters ignore everything that doesn't fit into their 'Wakefield was set up by the Establishment' hypothesis.

Which, going back to the initial topic of this thread, is the exact thing Ben Goldacre tries to debunk.

The poignant fact to take away from this thread is that Goldacre argues for evidence-based science. If evidence-based science came along tomorrow for arguments sake) that showed MMR was a causative factor in autism, Ben Goldacre would take that science on board and change his view. Because it's not all about Ben Goldacre's opinion it's about evidence based science.

He would not continue to argue his original viewpoint.

Beachcomber · 16/01/2012 12:03

Ah I see we are back onto implying that I am a crazzee tinfoil hattie.

And talking about me in the third person. Nice.

And nobody has anything to say about the links to science which show that Wakefield was right about the casien/gluten affect? And which pag confirmed helped her child.

The cognitive dissonance on this thread is quite something.

I'm a pretty detached sort of person when it comes to this being called names on the internet, but there are some things which get to me, and this is one of them.

And let's be clear what you're defending here, Beachcomber. It was claimed in the original Lancet paper that biopsies revealed that most of the patients had "non-specific colitis", when in fact it has turned out that the majority of the biopsies were not abnormal. So the whole basis for the paper (which has been withdrawn anyway) has been undermined.

Strong words. Especially the use of the word 'fact'. It is not a fact, it is Brian Deer's unqualified and unsubstantiated opinion.

Whatever. Folks talking Deer's word for gospel is hardly a new thing.

What is just awful though is that this sort of comment states that the Lancet children were not ill Sad. In a couple of short sentences, you deny the distress and indeed the existence of the Lancet children as real people. They aren't children with serious and painful health issues anymore, they are reduced to biopsies that are dismissed by a dishonest journo.

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.

And that makes me sick.

Here is a copy of the open letter written by the parents regarding this.

An Open Letter To Whom It May Concern

We are writing to you as parents of the children who, because of their symptoms of inflammatory bowel disease and associated autism, were seen at the Royal Free Hospital Paediatric Gastroenterology Unit by Professor Walker-Smith and Dr. Simon Murch with the involvement of Dr Andrew Wakefield on the research side of their investigations. Our children became the subjects of a paper published in The Lancet in 1998.

We know these three doctors are being investigated by the General Medical Council (GMC) on the basis of allegations made to them by a freelance reporter. Among the many allegations made are the suggestions that the doctors acted inappropriately regarding our children, that Dr. Wakefield ?solicited them for research purposes? and that our children had not been referred in the usual way by their own GPs. It is also claimed that our children were given unnecessary and invasive investigations for the purpose of research, and not in their interest.

We know this was not so. All of our children were referred to Professor Walker-Smith in the proper way in order that their severe, long-standing and distressing gastroenterological symptoms could be fully investigated and treated by the foremost paediatric gastroenterologists in the UK. Many of us had been to several other doctors in our quest to get help for our children but not until we saw Professor Walker-Smith and his colleagues were full investigations undertaken.

We were all treated with utmost professionalism and respect by all three of these doctors. Throughout our children?s care at the Royal Free Hospital we were kept fully informed about the investigations recommended and the treatment plans which evolved. All of the investigations were carried out without distress to our children, many of whom made great improvements on treatment so that for the first time in years they were finally pain free.

We have been following the GMC hearings with distress as we, the parents, have had no opportunity to refute these allegations. For the most part we have been excluded from giving evidence to support these doctors whom we all hold in very high regard. It is for this reason we are writing to the GMC and to all concerned to be absolutely clear that the complaint that is being brought against these three caring and compassionate physicians does not in any way reflect our perception of the treatment offered to our sick children at the Royal Free. We are appalled that these doctors have been the subject of this protracted enquiry in the absence of any complaint from any parent about any of the children who were reported in the Lancet paper.

J. Ahier
P. Aitken
D. Hill
R. Hill
R. Kessick
R. Poulter
R. Sleat
I. Thomas
I. T. Thomas

NotDavidTennant · 16/01/2012 12:04

Beachcomber, all I can suggest is that you read Brain Deer's response to Lewis that I have already linked to above, and link to again now. If you still consider Lewis to be credible, then fair enough, we'll have to agree to disagree.

NotDavidTennant · 16/01/2012 12:16

"What is just awful though is that this sort of comment states that the Lancet children were not ill sad. In a couple of short sentences, you deny the distress and indeed the existence of the Lancet children as real people. They aren't children with serious and painful health issues anymore, they are reduced to biopsies that are dismissed by a dishonest journo.

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.

And that makes me sick."

Weak, weak debating tactic in the extreme. What you don't seem to realise is that Deer actually has copies of the pathology sheets used, and that these confirm that the biopses were normal for the majority of the patients, and that this has been agreed by independent reviewers. If you'd bothered to read the rebuttal I linked to you would be aware of this.

And biopsy findings that suggest that the children didn't have one particular condition does not mean that the children weren't ill in other ways. You'd have to be either quite stupid or quite disingenuous to claim that.

entropygirl · 16/01/2012 12:41

Well we are nearly there guys....this will be the first thread I ever started that will hit 1000 posts. Am quite excited.

I am sorry that the debate has caused pain to people though. I think it is easy to get carried away in the details of issues and forget the very real people it affects.

I totally agree that it is not nice to second guess how others feel or even guess how you would feel in their shoes. That happens a lot on MN and I think on most issues there is more frothing by people who claim to be sympathising than there is from the actually affected parties ('but just think how your post would sound to someone in situation X? - person in situation X turns up and says 'oh it doesnt make me feel bad I just hope there is more info available now etc, etc,')

Finally I dont think anyone need worry that the Wakefield incident means that any true affects of the MMR vaccine in it's current form will be over looked. Research is indeed on going on all the data pouring in from this country and others. If there is a link to autism or anything else then it will still be found.

It is the biggest myth put about by the conspiracy/alternative gang, that the reason that no evidence is found for X, Y or Z is that scientist arent looking. We are and we will continue to do so.