Melanie Phillips is wrong again.
“The Wakefield Witchhunt” - Melanie Phillips - The Spectator - Friday, 21st March 2008
A couple of days ago, yet another story appeared claiming that fresh research had shown that there was no link between the MMR vaccination and autism. This new research was said to have shown that, contrary to the claims made by Dr Andrew Wakefield, the surgeon at the centre of the MMR scare, there was no relationship between gut problems and autism, the core of his concerns. It also claimed that the discovery furthermore damaged the related theory that a gluten-free diet could help children with autism.
This must be a first, even when judged by the standards of accuracy previously set by newspaper columnist, Melanie Phillips. Every statement of fact in her opening paragraph is wrong! The ”fresh research” makes no mention of MMR apart from acknowledging a potential conflict of interest because one of the authors, John March “has previously acted as an expert witness for the litigants in the MMR litigation case conducted by Alexander Harris against three MMR vaccine manufacturers, which involved urinary analysis of both litigants and non-litigant controls using MALDI-TOF mass spectrometry. He has an autistic child who was not part of this legal case.”
The next sentence is very telling, “was said to have shown that…” Was said by whom? Has Ms Phillips actually read the research in question or is she relying on her feed from LexisNexis? If she had read the research paper she would know that it makes no claims regarding the purported link between gut issues and autism. Neither does it question the efficacy of the gluten and casein free diet. The authors are careful not to dismiss the diet. Instead they call for more research into it. NHS Choices gets it right.
Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the ’leaky gut theory‘. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.
Ms Phillips is on firmer ground when quoting directly from the press release
“Dr Hilary Cass, from Great Ormond Street, said: ‘It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten-free diet which as yet lacks an evidence base.’
But then she puts her foot in it by adding her own commentary
This particular observation is a telling indication that this study bears little relation to reality. For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.
All together now, for the benefit of Ms Phillips: The plural of anecdote is not data! Testimonials from parents need to be backed up by solid data from properly conducted research. We are awaiting the outcome of a couple of studies that may provide that evidence base.
Second, despite the way this was presented in the media this is not a new piece of research at all. It is instead a recycled version of a study by Baird G. et al, published in the Archive of Diseases in Childhood on February 5 and reported in the press around that time.
Oh dear! Where on earth did she get that idea? Baird G. et al did take advantage of an earlier study [Baird G, Simonoff E, Pickles A, et al. "Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)" Lancet 2006; 368:210–15.] for their study of “Measles vaccination and antibody response in autism spectrum disorders.” But this has nothing to do with Dr Cass.
Dr Cass recruited children “from two tertiary referral centres specialising in autistic spectrum disorders whilst controls were recruited from and mainstream primary and secondary schools in the same geographical area. 65 boys with autism mean age 7:4 years (5-11) and 158 control boys mean age 7:8 years (4:2-11)”
Dr Baird used “A community sample of vaccinated children aged 10–12 years in the UK with ASD (n=98) and two control groups of similar age, one with special educational needs but no ASD (n=52) and one typically developing group (n=90), were tested for measles virus and antibody response to measles in the serum.”
So Dr Cass “recycled” this study using different researchers, different children, different research aims and methods, and different funding bodies. The two studies are totally unrelated. Nevertheless Ms Phillips goes on to cite Wakefield’s response to Baird et al and a letter by John Stone in response to Baird et al as if they apply to Cass et al! Not that this mattters to Ms Phillips. Nowhere does she discuss the content of either Baird’s or Cass’s research or evaluate the hefty quotations from Wakefield and Stone. (They total 1100 words in an article of 2000 words. I wonder if she is paid per column inch.) No. This is just another way to reiterate the myth of the martyrdom of Andrew Wakefield at the GMC.
No stone is being left unturned by the medico-political establishment and its creatures in the media to ensure that this doctor is destroyed.
Ms Phillips, like David Kirby, has pretensions of impartiality.
As I have repeatedly said, I have no idea whether Wakefield is correct or not in his concerns about the possible adverse effects of the MMR vaccine on a small sub-set of vaccinated children. Nor do I know whether any of the charges being levelled against him at the GMC has any legs. But I do believe — as I wrote in my series of articles on the subject for the Daily Mail in 2003 here, here and here — that many of the statements made by the Department of Health and medical establishment about the ‘proof’ of the vaccine’s unchallengeable safety are deeply misleading.
Wow! She has no idea about MMR and autism. She has no opinion on Wakefield’s culpability. But she does have an opinion on the stated opinions of the Department of Health and the medical establishment on these very matters. Furthermore, her opinion of the opinions of others on matters on which she has no opinion is the same opinion she had 5 years ago and we can read it “here, here and here.” Meanwhile, back to the present and a few more gems from Ms Phillips.
No-one has ever suggested that the MMR vaccine causes all or most of the incidence of autism. If Wakefield is correct, it is only a small proportion of children whose immune systems may be unable to cope, for whatever reason, which makes them particularly vulnerable to such ill-effects.
No-one? How about the presenter of “Origins of the Autism Epidemic,” Andrew Wakefield. And how small is a small proportion? Researchers like Cass and Baird provide us with data. According to Wakefield:
“We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children.”
“Several thousand children?” We know he had examined 12 children by 1998 There were around 1300 children in the UK class action against MMR that failed. Perhaps he examined them all. Then Wakefield went to work for Jeff Bradstreet, an exorcist in Florida before setting up Thoughtful House in 2005 where Arthur Krigsman scopes every child that walks through the door. If we average it out and say 2 children a day every day, not counting weekends and holidays for 10 years that gives us around 5000 kids with and endoscopic investigation and 4000 turned up positive for enterocolitis and autism. Yeah, whatever. Perhaps Wakefield will publish his data one day and end all the guesswork.
And contrary to the message being pumped out by the medical establishment that the vaccine has been proved to be safe — by studies which are all either flawed, inadequate or irrelevant — the fairest and most accurate thing to say is that the jury is still out.
Vaccines will never be “proved safe” if by this you mean that they will be absolved of all risk. But they are safer than the diseases they protect against. How about it Ms Phillips? Would you like polio or the polio vaccine?
One of the most reprehensible weapons being wielded in the witch-hunt against Wakefield is the claim that anyone who gives any credence whatever to his concerns is responsible for the incidence of measles amongst children whose parents are as a result too frightened to give them the MMR vaccination. There are two obvious points to make in response to this piece of moral blackmail: 1) the whole panic could have been avoided by offering single measles, mumps and rubella jabs rather than the triple MMR, and 2) it is surely just as important as avoiding cases of measles mumps and rubella to avoid causing the kind of catastrophic damage to the brain and gut displayed by the children at the heart of this controversy.
Wrong again! Offering single vaccines is tantamount to admitting that MMR is dangerous. It would have destroyed public confidence in the whole vaccine schedule and take up of the three shots would have been significantly less than the triple shot, always assuming we could source three separate vaccines that had been adequately tested for safety. And regarding point 2), hang on! How do you know that single vaccines would avoid this “kind of catastrophic damage” unless you already had an opinion about the effects of the MMR? Remember? The opinion that Ms Phillips claims not to have?
And there is a further and quite appalling point to note. This whole saga started because parents of such children found that their family doctors were dismissing out of hand their children’s gut and brain problems, accordingly refusing to alleviate their suffering. Now, as a direct result of the animosity towards Wakefield that has been whipped up — and the fear that any doctor who suggests he might be right will similarly find him or herself at the receiving end of the medical establishment’s fist — children exhibiting this combination of gut and brain damage are finding it difficult to obtain treatment.
Yes! Because quacks like Wakefield and their silly media acolytes have made it next to impossible for a doctor to diagnose and treat GI disorders in autistic children without being tarred with the same brush! Thank you Dr. Wakefield. Thank you Ms Phillips.
As the resumption of the GMC hearing draws nearer, one has to ask whether this will serve the cause of truth and justice and the relief of suffering — or is it instead merely a show trial which will bring about the precise opposite?
I hope that Wakefield is severely chastised and that we can move on to addressing the real needs of autistic children and adults free from the need to constantly address spurious scare stories about vaccines.
Melanie Phillips writes for the Spectator. It’s editor used to be Boris Johnson, who masked his intellectual prowess with the appearance of dimwitted buffoonery. Ms Phillips is just the opposite.
Comment by Joseph | March 24th, 2008
“Tell that to those families.”
I always find that argument a bit perplexing. It’s the “my anecdote is really really good, like nothing you’ve heard before, I swear!” argument.
Comment by Prometheus | March 24th, 2008
Ms. Phillips seems to think that parents’ experience with the GFCF diet in autism has been universally positive. Obviously, if you only look at one side of the story, you only hear one side of the story.
She states:
“For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.”
“Countless”? Sure, if you don’t count them, then they are “countless”. But I would be more interested in the number of people she spoke to who had seen the GFCF diet work in their children. Let’s just say that my perception of the GFCF issue is different.
In the large parent support group I belong to, almost 90% of the families have - at one time or another, to one degree or another - tried the GFCF diet. At meetings and get-togethers, these parents will talk to anyone who listens about their “success” with the GFCF diet. To be fair, so will the parents whose success was with ABA, TEACH, chelation, prayer and horse-riding.
What often is not mentioned is that the parents whose “lived experience” tells them that the GFCF diet “works” are in the vast minority of parents who have tried the GFCF diet. Now, they usually, when cornered, will say that “The diet doesn’t work for everybody.” or, if they are among fellow GFCF-believers, that the parents who didn’t see improvement in the diet “didn’t try hard enough” or “didn’t wait for the miracle”.
It appears, from the perspective of having been in this group for over ten years, that a certain percentage of autistic children will “improve” (defined in myriad ways) on just about any therapy - or no therapy at all.
I would find the arguments of the GFCF promoters far more convincing if they could show me the numbers. How many started the diet, how many kept it up for, say, six months (which the GFCF gurus used to say was plenty long enough to see results), and how many children showed measurable improvement (not just “he’s better”). Then, we could compare that to the proportion of children not on the diet who showed measurable improvement.
As I have said too many times to count, just because an autistic child “gets better” after a treatment does not mean that the treatment “works”. There seems to be a pernicious sort of “denialism” against the idea that a certain proportion of autistic children “get better” without (or in spite of) “biomedical intervention”.
That’s my “lived experience” - anyone care to challenge it?
Prometheus.
Comment by Lenora | March 29th, 2008
My kid was one who improved without any biomed interventions- it didn’t make me very popular in parenting circles, so I learned to be quiet about it.
I read through some of the comments on Phillips’ article and I was amazed at the devotion of some people to Wakefield. It reminds me of someithng that happened here in Chicagoland about ten years ago. Betty Loren-Maltese, the brazen mob-connected mayor of Cicero IL was convicted of looting the city’s insurance and pension funds. Betty was obviously guilty to most and the press had a field day roasting her. Yet on the day she was sentenced there was a front page picture of her supporters- a group of little old ladies sobbing and saying rosaries outside the courthouse. They didn’t care if Betty was crooked-they just cared that she was one of them. That’s how I’m picturing Melanie Phillips- sobbing over her rosary for her unjustly persecuted hero.
Comment by Sharon | March 31st, 2008
The idea of reading MP’s stuff just makes me weary. The excerpts you quote make me angry too. I tell myself that at least people know she is just presenting opinion not fact, so I don’t feel so guilty for trying to ignore how she might influence the public discourse of these matters. So thanks Mike for being hardy enough, no saintly enough, to be able to wade through her distorted diatribe. It’s astonishing that even someone from whom you expect so little in terms of understanding and accuracy, would make such a huge mistake in a published article.
Comment by apple_m | April 1st, 2008
Mike
you seem to be at odds with NAS thinking
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=459&a=15991
“We urgently need more, authoritative research into the gastrointestinal problems experienced by some people with autism and for research into whether special diets, such as wheat or dairy free diets, could be beneficial. There is currently limited evidence for these diets and people should discuss their individual needs with their doctor.” Bennet Middleton
Perhaps Richard mills (research autism) could assist in providing two suitable study groups
http://www.timesonline.co.uk/tol/life_and_style/health/features/article711891.ece
“I know a lot of children on these diets who have been dramatically improved,” says Richard Mills, director of Research Autism. “I also know plenty for whom they made no difference.” May 2006
It rather begs the question did the NAS setup Research autism to improve research or Distance itself from it.
Comment by apple_m | April 2nd, 2008
Mike
please comment on this
http://aap.org/advocacy/releases/apr08autismday.htm
looks like DAN is going mainstream medicine in the US
Comment by Mike | April 2nd, 2008
apple-m
regarding AAP and DAN! I refer you to the comment I made on the Autism Speaks forum:
If AAP and DAN! are working together I hope it means that DAN! has to raise its game to meet AAP standards. What will happen next? Will the DAN! protocol be submitted to the FDA for scrutiny? That would be a reason to celebrate.
Comment by Mike | April 2nd, 2008
apple-m
The NAS position is the same as mine - that parental reports of GI problems in autistic children should be taken seriously and given appropriate medical treatment.
Whether or not these problems are in any way connected to autism is a matter for continuing research. The research so far does NOT support the opiod excess theory of autism or Wakefield’s hypothetical autistic enterocolitis.
Comment by apple_m | April 2nd, 2008
Mike
Richard Mills clearly had his opinions in 2006 so where are the results..
as I said
It rather begs the question did the NAS setup Research autism to improve research or Distance itself from it.
I think the later
A weekly email really is not good enough and The content on the website has not changed in 6 months.
I don’t mind any research into GI problem in autistic kids if there purpose is to find the truth not dismiss the only theories.
Science should be about explaining not UNexplaining.
“If AAP and DAN! are working together I hope it means that DAN! has to raise its game to meet AAP standards”
Clearly the AAP see value in DAN! to raise the standard their members provide!! and if they choose Diet as the only part that has value it will be a huge win for everybody.
Comment by mumkeepingsane | April 2nd, 2008
It seems that the parents whose children “improved” on the GFCF diet are just louder than those whose children showed no improvment. I imagine that the diet does not allow junk food. I’m sure any child would be “better behaved” if they went off junk food. I’m just sayin’.
My son ‘improved without biomed intervention’. He grew up. He got older. And with the help of some speech and occupational therapy and a good educational program seems to be operating at his full potential (which is not the same as passing as NT). He’s still autistic. But instead of a 3 yr old autistic he’s a 6 yr old autistic. Cool huh?
Comment by apple_m | April 2nd, 2008
My childs improvements were a COMPLETE surprise to me.
I had bought in to the WHOLE Acceptance thing was a keen reader of the HUB blogs ,,, etc, i’m sure you get the picture.
we JUST REMOVED MILK to see if it would affect GI symtoms.
It did much much more than that in 3 days , I listed 20 improvements In behaviour and skills (Including stopping self harming and language from 2 to 6 word sentences)
we reintroduce milk and guess what!!
I’m not talking junk food ,, JUST MILK
It doesn’t take a genius to realise what works for you child and if you choose not to try diet,, that’s up to you..
Richard Mills is the head Of research Autism in the UK (this is a off shoot of the NAS which Mike is a respected member
) Richard is very specific that HE saw improvements (not some Desperate grieving parent, An independent and professional third party, In charge of a National Charity), Its a interesting quote and he needs to be reminded of it everyday until he funds some real research.
Bennet Middleton should be kicking his Butt for doing nothing for 2 years in regard to this.
My advice about diet is replace milk with diluted juice, if you don’t have a happier child in 3 days Give up.
Comment by Mike | April 2nd, 2008
apple_m
I am so pleased that such a simple step was able to help your child. Have you tried to find out what the specific problem is with milk or are you just happy to have identified the problem? I only ask because, as I recall, (and I am going back over 20 years now) my son had a milk allergy which passed by the time he was at school. The most common problem with milk is lactose intolerance. And you can be milk protein intolerant as well. I guess this refers to the casein in gluten and casein free diets.
I sometimes wonder, because these allergies and intolerances, especially lactose intolerance, seem to be so widespread whether the connction between diet and autism is as simple as this. Milk etc. makes some autistic kids cranky and sick. Take away the problem food and you get an autistic kid who is neither cranky nor sick and they start to make remarkable progress.
But that is just me thinking out loud. What we really need is some solid research. Which is where I think you are being a little harsh on Richard Mills and Research Autism. Unlike Autism Speaks, Research Autism does not have a massive budget. It is more of an enabling body that tries to identify promising research proposals and put them together with sources of funding.
At present they are supporting the CANDAA (Can diet affect autism?) study led by Professor Ann LeCouteur at Newcastle University. The first stage of a three year study is underway. But more funding is needed to complete the study.
You can learn more about their work at http://www.researchautism.net/pages/welcome/home.ikml
Comment by apple_M | April 4th, 2008
Mike
wheat milk and soy are the foods that have the greatest effect on behavior on my child. the opiod theory is a neat explantion even if it is not the real one.
(yes he has been tested, an I have always understood the experimental nature of the results)
I understand that science has to take its time but there are plenty of children who have been on diet since diagnosis and a comparison of SEN reports at diagnostis and entering school at 5 would give some indication compared to no diet.
I suspect that the 3 year study will become contaminated as the diet group may implement extra biomed if they percieve improvements or the control group will jump teams if they hear reports from the other group. (i believe this happened with a enzymes study in the states)
That is why I think a retropective study would be a safer option.(just thinking aloud)
Thanks for listening
Mark