Jon Edwards Video Trailer: A Story of Hope and Autism
By John Stone
Following the exoneration of John Walker-Smith in the High Court in March I wrote to the Lancet’s editor, Richard Horton, pleading with him to re-instate the Wakefield 1998 paper in the interests of children in the UK being denied medical investigation and treatment following the witch-hunt against Wakefield and colleagues both in the Sunday Times, and latterly British Medical Journal. Horton replied lamely:
“Dear Mr Stone - I would be horrified if doctors did not take the symptoms of any child seriously. So I sincerely hope that a child with symptoms of autism would be examined and investigated with care and sensitivity.
“My Best, Richard Horton”
(Email, 15 March 2012, 10.07pm)
To which I fired back:
“That is why you should re-instate the paper. It has become ideologically taboo in this country to accept that there is a real problem. The GMC tried to make out that the cases were fabricated and that gastro symptoms were only superficial, and the judge decided that they only selected the evidence which suited them. But for years members of the medical profession have been terrified to follow in their footsteps, and really based on the words of Mr Deer, Evan Harris, Tony Blair and Liam Donaldson. Two of these people may have been doctors of a sort but none of them had the knowledge, the ethical probity or the kindness of John Walker-Smith.”
And answer came there none: Dr Horton may or may not be “horrified”, but so far he is not prepared to do anything about it. As Martin Hewitt pointed out here last week there is not now the faintest scientific or legal reason not to re-instate the paper. But unfortunately this not only a matter of historical fairness. As the case of Jon Edwards – highlighted in a new film from Autism Team – makes abundantly clear, until our political class and medical establishment address their bad consciences nothing for these children is going to happen in the United Kingdom.
This is the trailer for the film about Jon Edwards ‘Changing Lives’. That's Jon's Mum in the photo above holding up one of the adults sized nappies he wore until.... Watch the trailer.
John Stone is UK Editor for Age of Autism. Dr Horton's email address is [email protected]
Like 'The Director', 'The Hack Journo' also views the Lancet editor with utter contempt. In this link, Brian Deer contemptuously quotes Richard Horton's lack of regret for publishing the paper ...
http://briandeer.com/mmr/horton-wakefield.htm
... and Horton's view that not to publish the paper would have been "an outrageous act of censorship".
In the light of the Mitting's judgement, it would, in my view, be outrageous not to restore the paper to its rightful place in the scientific literature.
Posted by: Mark Struthers | May 03, 2012 at 05:58 AM
Wow. Just wow. Full tears for this family and their son's struggles. 15 years of pain is 15 too many. Happy Birthday to Jon! I celebrate with you and for you.
Posted by: Beth | May 02, 2012 at 11:48 AM
'The Director' is now intent on forcing all health workers (doctors, nurses etc) to have an annual flu jab 'pour encourage les autres".
Jenny has thus characterised 'The Director' perfectly.
Of course, Britain's top vaccinologist is not the only bully on the block and, as John has indicated, not the only bully that Horton must now confront. Bullies must be confronted and restoring the paper is a golden opportunity for 'The Editor' to strike a blow against 'The Director' and those other bullies that wield the cosh.... and at the same time support a very vulnerable group of children and their long suffering parents.
For someone in 'The Editor's' privileged position, reinstating the paper strikes me as an absolute no-brainer.
Posted by: Mark Struthers | May 02, 2012 at 06:34 AM
David Salisbury's attitude to MMR vaccine safety is summed up in this FOIA forum post. His forum responses to parents, who believe their children were damaged by this vaccine have a rather sinister legal/bullying tone. It's very worrying to know this man is still in charge of immunisation policy in the UK:-
http://www.foiacentre.com/news-MMR-comment.html
From Salisbury's posts:-
"I note that you have implied that Urabe-based MMR vaccines could cause death from mumps meningitis/encephalitis. I am not aware of any deaths that were shown to have been caused by the Urabe mumps virus in the MMR vaccines used in this country between 1988 and 2002."
"I asked you for evidence that demonstrated that deaths were actually caused by the Urabe strain, and you have singularly failed to provide any evidence whatsoever. You have provided media reports, opinions of parents, and decisions of tribunals or courts. These are not evidence of causality that implicates the Urabe vaccine.
Nobody would disagree that deaths have been reported after MMR vaccines. But deaths after vaccination are very different from deaths caused by vaccination."
Try telling THAT to the parents of Ryan Mason and Georgie Fisher!! It seems Professor Salisbury cares little for the "opinions of parents, and decisions of tribunals or courts". He also appears to care little about the fact that the Urabe Mumps containing MMR vaccine caused widespread seizures, encephalitis and meningitis, all known as possible causes of neurological damage and in some cases death.
Posted by: Jenny Allan | May 02, 2012 at 02:49 AM
For Horton from 'The Scottish Play':-
"I am afraid to think what I have done;
Look on't again I dare not."
- William Shakespeare, Macbeth, 2.2
Posted by: Jenny Allan | May 01, 2012 at 04:48 PM
Carmel
I sent Horton the video link yesterday. I also told him he bore a responsibility to change the climate in the medical establishment by lifting the retraction, thereby opening the door to all of our injured children to be given the proper and succesfully treatment, as has Jon.
But Horton is obviously a man who follows the line of least resistance - someone who would prefer to resign rather than admit to a mistake IMO. Shame on him.
Posted by: Patricia | May 01, 2012 at 03:31 PM
Jenny said,
"If I ever had any sympathy for Richard Horton, for whatever 'pressures' he was being 'subjected to by whomsoever, I have nothing but disgust for him now!!"
Hear, hear, Jenny! I agree, the man is utterly despicable. But birds of a despicable feather tend to flock together ... and the bird-flu vaccine hasn't worked in containing the contagion that circulates in the rarefied atmosphere of government, industry and medical academia.
PS. In 2004, Jayne Donegan wrote the following rapid response to the BMJ. It makes interesting reading, particularly on the quality of leadership in the corridors of vaccinological power at the Department of Health.
http://www.bmj.com/rapid-response/2011/10/30/re-re-re-re-re-re-my-goodness-someone-else-feels-i-do-john-stone
PPS. This response was one of 179 responses in those heady pre-Fiona-Godless days of (relatively) free expression at the BMJ. The days of discussing measles, autism, safety of vaccines, or anything much else have long been stomped on in true goose step fashion.
Posted by: Mark Struthers | May 01, 2012 at 03:10 PM
To Mr. Horton,
If you are capable of caring for children, AND if you are further capable of admitting wrong doing and/or ignorance, you could still stand up and be a hero for these children. T'would be better late than never... and t'would be something your children's children could be proud of. If not, when the smoke clears, what will your children's children say of you? Perhaps they will pretend to be Horton's of a different lineage. What would you do if your grandfather sat back fancy free while millions of children suffered? Or, are you the type that would be proud of that?
Posted by: Horton! Hear a Who!! | May 01, 2012 at 02:51 PM
To do Horton justice the sources of professional offers you can't refuse in this game are probably manifold. But surely he has now been editor of the Lancet long enough to cut loose.
Posted by: Glax Britannicus | May 01, 2012 at 02:34 PM
One of the stories about Benjamin Franklin is that in the early days of the Pennsylvania Gazette he was offered a good sum of money to publish a story he thought inappropriate. He put off making the decision overnight during which he ate bread and water and slept on the floor in his coat, and the following day told the individual who submitted the story:
'Finding I can live in this manner, I have formed a determination never to prostitute my press to the purposes of corruption, and abuse of this kind, for the sake of gaining a more comfortable subsistence.'
How we could use men of his character now.
Posted by: GH | May 01, 2012 at 02:21 PM
It should not, of course, be forgotten that in 2004 the CEO of Reed Elsevier, the publishers of the Lancet, was Crispin Davis a director of GSK: something he failed to disclose when he gave evidence against Andy to House of Commons Science and Technology in Horton's presence on 1 March 2004 (and something Horton failed to mention in his book on the episode):
http://www.ageofautism.com/2011/01/best-of-aofa-.html
Davis, coincidentally, received his knighthood immediately afterwards (Queen's birthday honours June 2004) for services to "the information industry":
http://en.wikipedia.org/wiki/Crispin_Davis
Posted by: John Stone | May 01, 2012 at 02:09 PM
Thanks Carmel Wakefield. If I ever had any sympathy for Richard Horton, for whatever 'pressures' he was being 'subjected to by whomsoever, I have nothing but disgust for him now!!
Carmel said:- "Later that week (on the Friday) Horton telephoned Andy to say how much he admired his integrity and courage. Within hours Horton was on every major UK network disparaging the Lancet paper."
Posted by: Jenny Allan | May 01, 2012 at 01:42 PM
Is there going to be a full documentary of this... I hope so.
Posted by: call the police! | May 01, 2012 at 01:41 PM
'Knock, knock! Who's there, in the other devil's
name? Faith, here's an equivocator, that could
swear in both the scales against either scale;
who committed treason enough for God's sake,
yet could not equivocate to heaven: O, come
in, equivocator.'
Macbeth 2.3
Posted by: Shakespeare (for Carmel) | May 01, 2012 at 01:24 PM
Jenny tells us that,
"John Reid now sits in the House of Lords; Liam Donaldson has a nice little number with the WHO, and Tony Blair has NEVER informed us about whether or not his son Leo had the MMR."
But Professor (Sir*) David Salisbury is still Director of Immunisation at the Department of Health and he is still holding a cosh over Richard Horton, Editor of the Lancet, who might otherwise have restored the Wakefield et al paper to the scientific record. That is my humble view, for what it is worth.
* a knighthood is a racing certainty under a Cameron government.
Posted by: Mark Struthers | May 01, 2012 at 12:57 PM
Jenny: who do think might have been instrumental in the GMC prosecution of Dr Jayne Donegan that started in July 2004 and finally ended in acquittal in August 2007? It would certainly be interesting to read the "unused material" produced by that GMC action.
http://www.profitableharm.com/drjaynedonegan_notguilty.html
Dr Donegan has since been quoted as saying,
"What ‘take home message’ can be gained from my experience? Perhaps it is that if a parent says, “I’m worried about the safety of vaccination,” they are told, “You don’t understand, you’re not a doctor.” However if a doctor says, “I’m worried about the safety of vaccination,” they are told, “We’re charging you with serious professional misconduct.”
Posted by: Mark Struthers | May 01, 2012 at 12:47 PM
To give a perspective of Horton's position from the "get go" immediately after Deer had produced his florid allegations about my husband Andy Wakefield, John Walker Smith and Simon Murch, Horton stated "If this holds up it could be grounds for a retraction." Brian Deer excitedly emailed this quote to his commissioning editor Paul Nuki that same day.
Later that week (on the Friday) Horton telephoned Andy to say how much he admired his integrity and courage. Within hours Horton was on every major UK network disparaging the Lancet paper and stating that it would not have been published had he known the facts.
In my mind Richard Horton bears a very heavy responsibility in allowing children with autism and gut issues to suffer and to be denied the medical help they so badly need.
Everyone needs to see the Jon Edwards video to understand what is happening and that help is available so I hope you will circulate it widely.
Posted by: Carmel Wakefield | May 01, 2012 at 12:29 PM
Thanks Mark Struthers.
I have already watched all of the Wakefield videos and have no illusions about the role of the erstwhile Blair UK Government in the GMC persecution of Andrew Wakefield and his clinician colleagues!!However,we now have the situation where Cameron's government ministers and advisers are now disclaiming all responsibility for what the 'independent' GMC does and what is published in the 'independent' scientific and medical journals. When the you-know-what hits the fan, Lansley & Co cannot shrug off their responsibilities towards our damaged children by pleading ignorance and reiterating vaccination 'dogma'.
http://news.bbc.co.uk/1/hi/health/3512195.stm
From above:-
"Sir Liam Donaldson, England's chief medical officer, accused Dr Andrew Wakefield of peddling "poor science".
He said the 1998 study was flawed and has been criticised by "independent experts around the world". His comments came as the General Medical Council prepared to open an investigation into the way Dr Wakefield carried out his study.
Meanwhile, Prime Minister Tony Blair has urged parents to have their children vaccinated. "There's absolutely no evidence to support this link between MMR and autism," he said."I hope now that people see that the situation is somewhat different to what they were led to believe, they will have the triple jab because it is important to do it."
'Flawed study'
On Friday, the medical journal The Lancet said it should never have published Dr Wakefield's study. Dr Richard Horton, the journal's editor, said the work was "flawed" because Dr Wakefield had "a fatal conflict of interest".
On Saturday, Health Secretary John Reid urged the GMC to investigate "as a matter of urgency".
John Reid now sits in the House of Lords; Liam Donaldson has a nice little number with the WHO, and Tony Blair has NEVER informed us about whether or not his son Leo had the MMR.
Posted by: Jenny Allan | May 01, 2012 at 12:03 PM
Jenny: please watch this video interview with Andrew Wakefield - and then watch it again.
http://youtu.be/uhTYMoBTL6o
This video reveals how the Director of Immunisation at the Department of Health sought to influence the GMC in its prosecution of the Royal Free Three. If 'The Director' had such influence over the GMC in that case, it can't be difficult to imagine the malign influence 'The Director' might have over Richard Horton.
Posted by: Mark Struthers | May 01, 2012 at 11:19 AM
Natasa
Here is a link to the video - spread far and wide!!
http://www.youtube.com/watch?v=wa4wDqyfIqY&feature=youtu.be
Posted by: Seonaid | May 01, 2012 at 08:48 AM
Hi Jenny,
An interesting question. Ostensibly we live in a free society with independent institutions, but of course we don't really. Horton, could come under professional pressure very easily from the goverment executive if he was a registered doctor, which just like Dr Fiona Godlee he isn't. If on the other hand - as seems likely - there has to be collective responsibility for such an important decision he may be in the hands of others who could have their dustbins turned upside-down by the GMC gestapo. I am sure there are other ways in which institutional pressures can be brought to bear.
My own guess is that in 2004 Horton was intimidated into doing things he didn't like, and he also wrote a very silly book which pushed the issue of vaccine safety way outside science. But if he were to show some nerve or courage now, humanity would be truly in his debt.
One obvious point is the way he then adapted an excellent article he'd written for the New York Review of Books 'The Dawn of MacScience' in 'MMR Science and Fiction' so that Andrew Wakefield had come to substitute for the pharmaceutical industry as the villain. Eight years on we are certainly at midday but the narrative has long ago been lost. But let us say for the moment we are all on the road to hell unless he does something about it.
John
Posted by: John Stone | May 01, 2012 at 07:44 AM
Mark Struthers says:-
"Horton is under the cosh and the Director of Immunisation at the Department of Health is wielding that instrument".
I have absolutely NO SYMPATHY whatsoever for Richard Horton, who will, alongside a large number of other culpable persons in prominent UK positions, go down in history as an arch villain unless he recants his entrenched position NOW. John Stone is absolutely correct about this. If Horton is under pressure from the UK Department of Health, then this is certainly NOT ADMITTED by ANY UK Government or DOH personnel. The following is taken verbatim from one of my many DOH replies to my many complaints about the GMC's handling of the 'Wakefield et al MMR/1998 Lancet paper' issues:-
"With regard to your concerns about the British Medical Journal (BMJ) and the General Medical Council (GMC), I should explain that neither of these bodies is part of the Department of health. The BMJ is published by BMJ Publishing Group Ltd, a wholly owned subsidiary of the British Medical Association, the trade union for doctors and medical students. The GMC is an independent regulatory body. The GMC registers doctors to practise medicine in the UK. The GMC's purpose is to protect, promote and maintain the health and safety of the public by ensuring proper standards in the practice of medicine. I would suggest that you contact each organisation to discuss any concerns you have with regard to their conduct."
This was signed by a DOH 'customer service' person. I have NEVER received any personnel communication about these issues from UK Government Heath Minister Andrew Lansley, although he was very helpful to me about another important health related matter, several years ago when his political party was in opposition. I assume the Government's position on the Lancet is similar to their stance on the BMJ.
Posted by: Jenny Allan | May 01, 2012 at 07:10 AM
Hi Mark,
In 2004 Horton/The Lancet made the judgment that the issue of the autism/gut syndrome was unaffected by the allegations. Under what can only have been duress 10 of the authors re-tracted an interpretation - ie they distanced themselves from the possibility that MMR might be a trigger for autism and bowel disease (but this was never something that the paper purported to confirm anyway).
When in 2010 the GMC made its findings it did so on the basis of disregarding defence evidence. The judge in the recent hearing was confronted by key points in relation to Prof Walker-Smith's appeal (1) that while disregarding his evidence they had backed off from saying that he was lying (2) his evidence was supported by the record (3) it was supported by other expert witnesses and the GMC had never provided their arguments for disregarding that evidence. But in effect they had not only failed in procedure, by following the flawed prosecution arguments based on the complaints of an axe-grinding Sunday Times journalist, they had laid the horrible allegation of Munchausen Syndrome by Proxy against the doctors for improperly investigating non-sick children. About this the judge made very clear rulings.
I suppose it was arguable in 2010, when the Lancet finally retracted the Wakefield paper, that unbelievable though the GMC's findings were, they were honour-bound to take account of them. It is not arguable now. But it also has to be said that however badly the three doctors have been treated it pales into insignificance compared to what has been done to the children by ignoring their symptoms, as what seems to be a matter of public policy. And when you see determined, resourceful parents like Alli and Michael Edwards having to give up on medical services in this country you see how deeply the bureaucratic falsehood is entrenched.
Well frankly it is a cover-up, and very gradually (but I think inevitably) it is unravelling. We have a very dangerous and intellectually unsustainable situation where the safety of a whole class of medical products is placed outside mainstream public discussion, and in which anyone questioning them is for public consumption branded a charlatan, a fool or a madman, and it seems the very possibility of bowel disease in autistic children represents a challenge to official dogma in regard to vaccines, at least in the UK.
But history will make a judgment and people will have decide which side they were on, including Richard Horton. One thing is certain, the sickness is real and doctors are turning an expedient blind eye to it. If Horton does not believe doctors would do this he only has to look at GMC findings to see that they would, and that they do.
John
Posted by: John Stone | May 01, 2012 at 05:26 AM
I almost feel sorry for Richard Horton. Actually, I think he does possess a conscience and it's been sorely tested under torture conditions for many years. Horton is under the cosh and the Director of Immunisation at the Department of Health is wielding that instrument.
Posted by: Mark Struthers | May 01, 2012 at 02:29 AM
I know this post was meant to elicit anger (and very rightfully so), but after watching the video, I just could simply not feel anger - I am so incredibly happy for Jon and the entire Edwards family. All these years of seeing pictures of Jon and reading what Alli and Charlie have written about their lives with vaccine damage/autism...and then to see the look of relief on Alli's face in the video and that beautiful, pain-free SMILE from Jon...simply incredible. What a perfect ending to this wretched April/Autism Awareness crap - one beautiful child moving out of pain and back to health and happiness. I could not be happier for you, Alli, you and your entire family.
Posted by: Donna L. | April 30, 2012 at 09:02 PM
Happy birthday Jon Edwards. You are at the head of the parade today!
Alli Edwards, you too are brave. Thank you for allowing this video out. I like to show Ben all dressed up for church, but nine years ago he looked like Jon "before." What a difference!
We learn resilience from our kids. If they can keep going in spite of it all, so can we. Better times are coming, in part because of The A Team, you, and Jon.
Posted by: Dan E. Burns | April 30, 2012 at 07:16 PM
What a heartening video, go Jon! How do we share it, is there a link?
Posted by: Natasa | April 30, 2012 at 07:09 PM
Isn’t it awful that this lad had suffered so much for such a long time and nothing was done to help alleviate his symptoms. NHS is really going to have to wake up and alter their mind set about treating these conditions which are present in so many autistic children. How many more autistic persons in this country are also suffering like this and left either untreated – or not receiving appropriate treatment?
The loud message this amazing trailer sends out is that at least some of gastro problems in autism ARE TREATABLE. Well done Alli and Mike for finding someone to take you seriously. Well done Arthur Krigsman and well done all who wrote to Richard Horton. Like many, I look forward to the next part of this tale.
Posted by: Seonaid | April 30, 2012 at 05:42 PM
I am Jon's mother, and I am SO proud of our lad for the bravery and dignity he has shown whilst trapped for years inside a pain filled body - every time he ate - everytime he went to the bathroom.
I saw him curl up, and his body begin to give up to the ravages of inflammatory bowel disease. More than ever I now appreciate how much we all take for granted, that simplest of pleasures - being able to eat and enjoy food.
Cruelty to animals seems to outrage the wider public more than the blatant cruelty shown by some medical professionals who are trained to help, yet instead use autism as a scapegoat excuse to walk on by. No wonder our kids scream, lash out and hurt themselves. Worse still, having to be the tortured parents who bang on every door pleading for help for our youngsters and are turned away.
Our family will be eternally grateful to Polly and Arthur and the Autism A Team who helped us to keep our son, and on Wednesday, with great relief, we'll be able to celebrate Jon turning fifteen.
Posted by: Alli Edwards, UK | April 30, 2012 at 05:33 PM
Nice piece. Brings tears to my eyes as well as my own memories. My boy was 14 when recovery efforts were started on him. In 3 days, he lost about half his symptoms, after 9 years of docs not helping him. I cried and cried. His last psychiatrist refused to do a medical referral for testing to see if there was a medical cause to his symptoms. He was his last psychiatrist, and since starting recovery treatments, he has not been to another. He's doing great now, mostly indistinguishable from peers.
Posted by: Heidi N | April 30, 2012 at 05:17 PM
Readers, this isn't a video portrait cute ASD kids, but it could seep or even leap through the Web to become a game changer and improve the lives of many children bowel disease. Please get it to autism groups, pediatricians, mothers' groups, schools, teachers ... anyone who deals with children.
Posted by: Dan E. Burns | April 30, 2012 at 12:12 PM
Great to see so much improvement in a lad that was extremely sick and all because he got the right treatment and care. I wonder how many other children are going through the same thing and nothing is done about it. It is an utter disgrace. Horton never answered my letter either. I spoke about my son's tragic journey in a radio show yesterday. Please view and share.
Sallie wrote: "April is AUTISM awareness month. Please spread this far and wide!
Joan Campbell is my guest on "AUTISM & ACTIVISM, The Mary and Sallie Show". Post it everywhere parents might look. Thank you much, Sallie
Autism IS the pandemic (1 in 29 three year olds in the USA 2012) !!!
http://www.blogtalkradio.com/themaryandsallieshow/2012/04/29/the-mary-and-sallie-show-autism-parents-call-in"
Posted by: Joan Campbell | April 30, 2012 at 10:38 AM
Great to see the improvement how much more could have been done if ...the governments had a conscience...we fight on,and on,and on... well done all..
Angus
Posted by: Angus Files | April 30, 2012 at 08:08 AM
I would simply say to Richard what are you frightened of ,oh yes of course the drug companies , the government , i do hope Richard has watched the trailer of Jon Edwards and is wrestling with his conscience , come on man get some backbone , this issue needs debating , why is there so much dishonesty concerning this issue , are yes of course money
Posted by: Debora | April 30, 2012 at 07:56 AM
Hi Robin,
Obviously, Dr Horton has provided no direct explanation. I have decided after some thought to publish his email address (above) in case anyone would like to politiely engage on the issue.
John
Posted by: John Stone | April 30, 2012 at 05:53 AM
John,
I wonder on what grounds Richard Horton is not prepared to re instate the Dr Wakefield paper.
---
When we ourselves went to our GP who happened to be pregnant at the time she assured us that the MMR vaccine:
1. Did not pose a vCJD risk as it was sourced from abroad unlike earlier UK vaccines.
2. Did not in any way cause or trigger autism and any talk of such on the internet was uninformed nonsense.
Within hours of having the vaccine - we lost our son - and for many years thought we would never get him back.
On returning to our doctor who was herself heavily pregnant we found her quite traumatised.
She asked us to understand that whilst many GP's in the NHS felt that there was a serious problem with vaccines and particularly the MMR vaccine they were under strict instructions from the NHS to say they were quite safe.
When asked whether as a professional doctor the Hippocratic Oath obliged her to raise such doubts . . .
She said the Hippocratic Oath did not protect NHS doctors from the consequences of transgression and that as a student architect I must surely understand that as a professional I would be obliged to take positions I - was concerned / disagreed - with.
I returned home and as a father and husband decided it best for the some years to -" bite my tongue "- and not aggravate my wife's distress.
---
Richard Horton should understand that what has happened with vaccines and autism will come to be seen as a crime against humanity and he is legally and morally liable for any part he may have played in this tragedy and will be held to account.
Robin Rowlands
Posted by: Robin Rowlands | April 30, 2012 at 05:34 AM
These are the texts of my two letters to Richard Horton prior to his brief reply:-
'Dear Dr Horton,
'I would like to draw to your attention the appalling plight of many young autistic people in this country who cannot get proper and sympathetic treatment because of the GMC's unjustified hounding of the Royal Free doctors.
'The Lancet rightly held out over not withdrawing the paper for years - you told both the BBC and the GMC that the clinical findings were real and important. And the Lancet only withdrew it as a result of findings which have now been shown to be flawed and erroneous. I doubt whether there is any good reason why the paper should not be restored in the light of the High Court judgement of Mr Justice Mitting but even if it cannot be I believe you have a moral duty to make sure that vulnerable children who most often cannot speak for themselves, and are so used to pain they do not know what it would be like not to have it, get sympathetic treatment in our hospitals...
"Dear Dr Horton,
"I just wanted to point out the line from the consensus report (Buie et al, 2010 ) in PEDIATRICS, 'Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs' http://www.ncbi.nlm.nih.gov/pubmed/20048083 :
""The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs."
"and this is what is not happening in this country. Even before the GMC hearing the National Autistic Society reported:
""It is particularly important that this case is not allowed to increase the lack of sympathy that some parents of children with autism have encountered from health professionals, particularly on suspected gut and bowel problems. Parents have reported to the NAS that in some cases their concerns have been dismissed as hysteria following previous publicity around the MMR vaccine. It is crucial that health professionals listen to parents' concerns and respect their views as the experts on their individual children."
http://web.archive.org/web/20081002142549/http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=459&a=13952">http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=459&a=13952">http://web.archive.org/web/20081002142549/http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=459&a=13952
"But now even the National Autistic Society is turning a blind eye, despite the international view and neither children or adults can get investigation. It is very easy to turn away families when their children cannot even describe the pain.
"Yours sincerely.."
The fact that you have to go to the web-archive to find an NAS statement says it all.
Posted by: John Stone | April 30, 2012 at 05:12 AM
Yes I too wrote to Dr Horton, but unlike John Stone, received no reply or acknowledgement:-
Dear Dr Horton,
My autistic grandson was referred by his GP to Professor Walker-Smith’s Royal Free clinic for investigation and treatment of his bowel problems. He was a patient from 1998 -2002. My grandson was not one of the Lancet 12 children, but part of a later group of referred children. His diagnosis was exactly the same syndrome as described in the 1998 Wakefield et al Lancet paper, retracted following the GMC verdict which de-registered Professor Walker-Smith and Dr Andrew Wakefield, a laboratory based research scientist. My daughter never met Dr Wakefield during those 4 Royal Free years, since he was never involved with Royal Free clinical practice.
I cannot speak too highly of the treatment and care given to my grandson by Professor Walker-Smith and his team, which resulted in a huge improvement in both my grandson’s physical health and behaviour. Unfortunately, the GMC investigation and verdicts have ensured that no other UK gastroenterologists have been prepared to accept or treat my grandson for this condition, other than via multiple prescriptions for constipation remedies. He is still suffering constant pain and discomfort.
The large number of glowing testimonials on behalf of Professor Walker-Smith, did not sway the GMC panel, but now that Professor Walker-Smith has been completely exonerated by Justice Mitting, there is no reason for other gastroenterologists NOT to cite the 1998 Lancet paper in their own researches. In fact I believe this has already occurred in several instances.
Quite simply, the Lancet’s failure to restore this paper to the scientific record is beginning to look silly!
Best wishes
Jennifer Allan
Posted by: Jenny Allan | April 30, 2012 at 04:30 AM
Hi Deborah
I think Dr Horton (though you'd have to ask him) is trying to express scepticism that doctors would behave in such a neglectful way, and is doubting what I say. In 2004, on the other, he was absolutely insistent on the significance of the association between autism and gut disease, which is why he did not withdraw the paper. The Lancet did not "retract" the paper till the GMC findings in 2010, which have now been shown to be utterly false in the High Court, but of course Horton won't do anything about it, and it doesn't apparently matter what happens to our children. Until someone in public life stands up for our children they will simply be allowed to rot.
John
Posted by: John Stone | April 30, 2012 at 04:01 AM
Unfortunately all the people you mention John do not have a conscience, let alone any compassion as to the suffering of these children and young adults, and the devastating effect it has on all concerned.
One of the most amazing traits a human being can have is HUMILITY, Mr Horton et al could say "sorry, we got it wrong" what can we now do to make it right?
Waiting..................
Posted by: JanP | April 30, 2012 at 03:39 AM
Is Mr Horton deliberately ignoring the children's gut symptoms yet again; when he says, "a child with symptoms of autism" ?
The truth, as we probably all know, is that the examination of autistic children is limited to recording their weight and head circumference. The doctors weren't interested in my son's chronic diarrhoea 16 years ago and it appears they still aren't bothered about the children today.
Posted by: Deborah Nash | April 30, 2012 at 03:14 AM
Thank you for sharing the trailer. I look forward to viewing and passing along the film!
Thank you also for calling on Horton to put truth and the restoration of the injured ahead of political considerations. I hope he views the film as well.
Posted by: Jeannette Bishop | April 30, 2012 at 01:35 AM