Archive | News RSS feed for this section

The Quacks behind the Warrior Moms

13 Oct

I accept Dr Carpenter’s opinion that there is no evidence that any of these treatments were individually beneficial for M and that collectively they were intrusive and contrary to his best interests.  M’s life was increasingly dominated by the programme of treatment to the exclusion of other activities.  I find that E has implemented a programme of diet, supplements and treatments and therapies indiscriminately, with no analysis as to whether they are for M’s benefit, and on a scale that has been oppressive and contrary to his interests.  She has exercised total control of this aspect of M’s life.’

Mr Honourable Justice Baker, In the Court of Protection, Judgment, In the matter of the Mental Capacity Act 2005 and in the matter of M, 11 August 2014

Brian Deer has once again done a service to the autism community, by putting in the public domain the judgment of Mr Justice Baker in the case arising from a dispute between a local authority and the mother (E) and father (A) of a young man (M) with autism.

http://briandeer.com/solved/mother-lied-protection-news.htm

Deer’s report, published in the Sunday Times on 12 October, focuses on the judge’s scathing judgment on E, a prominent supporter of the claim by the discredited Royal Free researcher Andrew Wakefield of a link between the MMR vaccine and autism. Mr Justice Baker concluded that E had fabricated evidence of an adverse reaction to MMR in her son, invented a range of associated diagnoses, subjected her son to unnecessary tests and treatments, neglected a dental abscess and indulged in fantasy conspiracy theories.

This Court of Protection case offered a rare opportunity to ventilate in public some of the controversies that have raged in the world of autism over the past decade. In the USA, the Omnibus Autism proceedings in 2008-9 provided a public forum in which claims regarding vaccine-autism links and associated alternative treatments were exposed as scientifically baseless and clinically irresponsible.

http://www.spiked-online.com/newsite/article/6283#.VDqLgWd0yUk

Though Mr Justice Baker did not address the MMR link or alternative treatments in general, his 92 page report provides a devastating indictment of the role of a range of therapists in relation to M, some of whom appeared as witnesses. In addition to exclusion diets and supplements, M received homeopathy, cranial osteopathy, reflexology, naturopathy, light and sound therapy, auditory integration training and hyperbaric oxygen therapy. It is clear that E’s descent into irrationality and paranoia was supported and encouraged by a number of dubious authorities and therapists, with damaging consequences for her son and her family.

Three therapists gave evidence in support of E’s treatment of her son. Shelley Birkett-Eyles, an occupational therapist working in a private clinic, was accepted by Mr Justice Baker as a ‘responsible practitioner’, though he noted that her reliability was challenged by Dr Peter Carpenter, a consultant psychiatrist with a special interest in learning disability, the expert witness called by the local authority.

Dr Peter Julu describes himself as ‘autonomic neurophysiologist’ (based at the private Breakspear Clinic), though Mr Justice Baker questioned whether this was a legitimate speciality and noted that his diagnosis of ‘neurodevelopmental dysautonomia’ was disputed by Dr Carpenter, who also challenged the reliability of his assessments and treatments, particularly his recommendation of hyperbaric oxygen therapy.

Ms Juliet Hayward, a nutritional therapist, was censured for giving ‘advice well beyond her expertise’, in endorsing a diagnosis of Lyme Disease and in prescribing a dietary protocol without taking an adequate medical history. Mr Justice Baker concluded that he ‘was left with a profound anxiety about Ms Haywood’s influence on E and her role in the treatment that M has received.’

Mr Justice Baker was particularly concerned that none of these three had received training in issues of ‘mental capacity’ as codified in the 2005 Mental Capacity Act. He observed that ‘it was clear from their evidence that none of them had given proper consideration to the question whether M had capacity to consent to their assessments or the treatment they were prescribing’.

In addition to these therapists, E called as expert witnesses two veterans of the Wakefield anti-MMR campaign: Dr Ken Aitken, a clinical psychologist formerly associated with the (now defunct) Autism Treatment Trust providing alternative treatments in Edinburgh; and Mr Paul Shattock, a retired pharmacy lecturer from Sunderland, a long-standing promoter of exclusion diets and unorthodox biomedical therapies.

http://www.spiked-online.com/newsite/article/5992#.VDqNsWd0yUk

By contrast with other expert witnesses (including Dr Peter Carpenter, Dr Alison Beck, Professor Robin Williamson, Dr Gwyn Adshead, Mr Keith McKinstrie), whom Mr Justice  Baker found to be ‘wholly reliable and professional’, he expressed considerable reservations about Aitken and Shattock:

‘I was concerned at times as to their qualifications to opine on some of the matters about which they gave evidence.’

In his conclusion, Mr Justice Baker categorically rejected the approach advocated by Aitken and Shattock in relation to M:

‘I stress, again, that I am not making any definitive findings on the efficacy of alternative treatments generally.  That is not the subject of these proceedings, which are about M.  I do, however, find that: (1) there is no reliable evidence that the alternative treatments given to M have had any positive impact on people with autism generally or M in particular and (2) the approach to prescribing alternative treatments to and assessing the impact of such treatments on people with autism in general and M in particular has lacked the rigor and responsibility usually associated with conventional medicine.’

Mr Justice Baker repudiated ‘the fallacy’ of E’s belief that there are two parallel approaches to the diagnosis and treatment of autism, each of which is equally valid:

‘The evidence in this hearing has demonstrated clearly that there is one approach – the clinical approach advocated by Dr Carpenter – that is methodical, rigorous and valid, and other approaches advocated by a number of other practitioners, for which there is no evidence of any positive impact and which (in this case at least) have been followed with insufficient rigor.  Whilst each treatment may be harmless, they may, if imposed collectively and indiscriminately, be unduly restrictive and contrary to the patient’s interests.  These disadvantages are compounded when, as in several instances in this case, insufficient consideration is given by the practitioners to the question of whether a mentally-incapacitated patient has consented to or wishes to have the treatment.’

Given his characterisation of E’s performance in court as controlling, manipulative, duplicitous and obstructive it was perhaps not surprising that Mr Justice Baker expressed some sympathy for the long-suffering family GP, Dr W. This ‘older-style family GP’ had been ‘tolerant and sympathetic’ and had maintained a good relationship with the family ‘until he went into the witness box’, when it became clear to E and her husband that, though Dr W had been attentive to the family needs and had responded to her requests to arrange investigations that he did not consider clinically indicated, he did not endorse her wilder theories and diagnoses. Though the parents later expressed ‘disillusionment’ with Dr W, Mr Justice Baker found his evidence ‘responsible, truthful and humane’.

Michael Fitzpatrick

13 October 2014

Michael Fitzpatrick has an autistic son close in age to M; he is a doctor, former GP and the author of MMR and Autism: What Parents Need to Know (2004) and Defeating Autism: A Damaging Delusion (2009)

Brian Deer: Wakefield ‘MMR mother’ fabricated injury story

12 Oct

Brian Deer, the reporter who broke the story on Andrew Wakefield’s conflicts of interests, has a new story on his website:

Wakefield ‘MMR mother’ fabricated injury story
In a newly-released judgment from England’s Court of Protection, a prominent anti-vaccine campaigner is branded a manipulative liar. Brian Deer reports

The story is quite sad. And while it presents an extreme case, there are themes here which have been seen elsewhere.

A British “mother warrior”, who claimed that the combined measles, mumps and rubella vaccine is responsible for autism, fabricated accounts of injury to her son and persistently lied about his health, a London court has ruled.

The mother, “E”, who cannot be named so as to protect her son’s identity, concocted a story about how he reacted to an MMR shot in January 1991. She said that he became distressed with fever and then lost speech, eye contact and play immediately following his three-in-one at the age of 18 months.

She claimed that he screamed after immunization, and that this was followed by six hours of convulsions and vomiting, and then six months in a “persistent vegetative state”.

But in a landmark 45,000-word judgment, which entered the public domain last week from the Court of Protection, the mother was dismissed as a manipulative liar. It was found that she had made up the story so as to bring attention to herself and had plied her developmentally delayed son with a mass of sometimes bizarre “biomedical” interventions so as to gain “total control” over his life.

Mr. Deer’s story goes on (Wakefield ‘MMR mother’ fabricated injury story) with more details. Many more details are in the court’s judgment which is linked to at the end of Mr. Deer’s article. I won’t copy it all here, I encourage you to read it there.

Here’s a paragraph from the judgment that goes to the evolution of the story surrounding the day in which the child received the MMR vaccine. The fact that the allegation of a vaccine reaction was not made until is important as this was 10 years after the event. Also worth noting is that this individual showed developmental issues well before the MMR vaccine.

After the allegation of an adverse reaction to MMR was eventually recorded in 2001, it became more dramatic in subsequent accounts. Thus, in 2001 the description was: “Distressed after injection. Had fever. Eyes glazed, dilated and fixed.” E’s account became more florid over time, with references to screaming, jolting, spasming and a persistent vegetative state. In her final statement she said that: “M died within six hours of the MMR.” In the witness box she gave a full account of the events on the day on which the MMR was administered and M’s reaction to it. E acknowledges in her final statement that she uses certain words and phrases in her own particular way. For example, for her the phrase “vegetative state” means “slipping in and out of consciousness, not responding and appearing lifeless.” And her use of the word “died” to describe what happened to M means “stopped breathing and lost consciousness”

I’d be very interested when “died” became part of the story. Reading the above I was very much reminded of Jenny McCarthy’s statement that her son died from vaccine injury. Ms. McCarthy was referring to her son’s very serious seizures. The timeline has never been made clear, but those seizures appear to have began a year or more after her son’s vaccinations. But her vague choice of words led many to claim that her son “died” shortly after vaccination.

As to “E”‘s experience taking her son to the Royal Free Hospital:

Throughout the hearing, E insisted that M had been given the diagnosis of autistic enterocolitis or leaky gut syndrome and alleged that some of the Royal Free medical records must be missing. I reject that assertion. I find that not even the Royal Free team, who at that time were leading the way and postulating the link between autism and a form of colitis, found any evidence in 2001 of significant gut disorder in M. In his case no diagnosis of autistic enterocolitis or leaky gut syndrome was ever made.

There’s a great deal more, in both Mr. Deer’s story and the 92 page judgment.


By Matt Carey

Brian Deer’s original 2004 Channel 4 report on Andrew Wakefield: MMR: What they didn’t tell you

5 Oct Result_of_Wakefields_Scare

When Andrew Wakefield presented his hypothesis linking autism to the MMR vaccine in 2014 1998, he fueled a vaccine scare that is still alive today. It wasn’t until 6 years later that specifics about Mr. Wakefield’s actions were to surface. First in a newspaper story by Brian Deer (Revealed: MMR research scandal). Later that year in a BBC Channel 4 investigation: “MMR What they didn’t tell you.” I’ve never seen that Channel 4 program. Until today. Mr. Deer has placed it on YouTube. In three parts.

Part 1 introduces the topic. The MMR scare, the Wakefield 1998 Lancet paper and the press conference and the Royal Free’s video given out to the press. A discussion with an epidemiologist about the fact that there was nothing in Mr. Wakefield’s own work to support the triple MMR vaccine. Which leads us to the Wakefield patent for a substance that could be used as a vaccine–a vaccine which could only reasonably be expected to make a profit if the existing measles vaccine were considered unsafe–and as an autism “cure”.

Mr. Deer speaks with Ian Bruce, a researcher who worked with Andrew Wakefield on the patent. “The interpretation of that is quite clear to me..and that is that they have a vaccine for measles. Which presumably is an alternative to the existing vaccine.”

The thing is, the public was not told that Mr. Wakefield and the Royal Free had these commercial interests prior to Mr. Deer’s show.

Part 2 discusses the patent–the cure and vaccine aspects. The idea was that measles virus would be injected into a mouse. Those would be extracted, frozen, thawed, mixed with human cells, and injected into pregnant goats. The colostrum (part of the goat’s milk) would then form the basis of this vaccine/cure substance.

Sound like a strange idea to you? Well, Mr. Deer interviews medical experts who also think so. “the whole technique doesn’t make sense”. “It’s not credible”. “It’s strange”.

Mr. Deer tries to interview Dr. Roy Pounder, Mr. Wakefield’s former supervisor at the Royal Free. Mr. Pounder at first agrees then refuses to be interviewed.

Mr. Deer then goes to American and interviews Hugh Fudenberg, collaborator with Mr. Wakefield and co-inventor on the patent. Mr. Fudenberg at the time was charging up to $750 an hour to see and treat autistic children. He too considers Mr. Wakefield’s treatment to be unfounded. However, Mr. Fudenberg had a cure of his own, made from his own bone marrow.

Mr. Deer discusses some of the criticism of Mr. Wakefield’s work, including a statement from someone who worked in the Royal Free Hospital, including a comment that the work amounted to abuse.

Part 3 includes a discussion with Nick Chadwick, a student in Mr. Wakefield’s laboratory during the MMR/Autism research. Mr. Chadwick tested the tissues for measles virus, and found there was none in the autistic children being seen by Mr. Wakefield’s team. Also interviewed was Ian Bruce, a colleague of Mr. Wakefield’s, and also a supervisor for Nick Chadwick. Both Chadwick and Bruce are highly confident that if there were measles virus in the tissues, they would have detected it.

Mr. Deer discusses the 2000 measles outbreak in Ireland. He interviews the parents of one of the children who died in that outbreak. For those who keep saying that measles is mild, that in first world countries no one dies or is injured, here’s what a child dying of measles looks like in the first world. She took 11 months to die.

Result_of_Wakefields_Scare

Mr. Deer then goes to America to find and try to speak with Mr. Wakefield. Mr. Wakefield was listed as “research director” for Jeff Bradstreet’s clinic in Florida, but wasn’t there. The Bradstreet clinic had a host of supplements that one could purchase to “treat” autism. Mr. Deer eventually finds Mr. Wakefield at an Autism Society of America convention. Whereupon Mr. Wakefield runs away.

By the way–Thank you ASA for no longer inviting Andrew Wakefield to speak.

This investigative report together with the Sunday Times articles earlier in 2004 made a huge impact at the time. I know as I lived through it. The retraction of interpretation published by most of Mr. Wakefield’s co-authors on the 1998 Lancet paper (since fully retracted by the journal), was a big statement that this work was not solid. Of course, Brian Deer would eventually go on to win a U.K. Press Award for his MMR journalism and Mr. Wakefield would eventually be found to have been unethical in his research and struck off the register (lose his medical license).

The embedded version below should go through all three parts in sequence.

Andrew Wakefield loses frivolous defamation lawsuit. To pay court costs.

19 Sep

In 2011 the British Medical Journal (BMJ) published a series of articles about Andrew Wakefield and his efforts to promote the idea of the MMR vaccine causing autism. Brian Deer has a list of links on his website: Secrets of the MMR scare. Here are just a few of those links:

Piltdown medicine – the missing link between MMR and autism

Editorial: Wakefield’s article linking MMR with autism was fraudulent

How the case against the MMR vaccine was fixed

How the vaccine crisis was meant to make money

The Lancet’s two days to bury bad news

Nearly a year after those were published, Andrew Wakefield took issue with his work being declared fraudulent and sued for defamation. Not in the UK, where the laws are very favorable to him. No, instead he chose his home state of Texas. Mr. Wakefield’s original suit was denied on the grounds that he did not have the standing to bring suit against the BMJ in Texas. Mr. Wakefield appealed. And lost.

In the recent appeal the judgment the court stated:

This is an appeal from the judgment signed by the trial court on August 3, 2012. Having reviewed the record and the parties’ arguments, the Court holds that there was no reversible error in the trial court’s judgment. Therefore, the Court affirms the trial court’s judgment. The appellant shall pay all costs relating to this appeal, both in this Court and the court below.

The full judgment can also be found online.

[Edit to add--see the discussion below. It is quite possible that I did not read this correctly]

If I read this correctly, Mr. Wakefield will be paying the costs the BMJ team incurred as well as his own. And, not only in the appeal, but also “in the court below”, which I read to be in the original suit. To put it simply–Mr. Wakefield may be in the position of paying the costs going back to when he first filed his defamation case.

The BMJ team and Mr. Wakefield’s team were four attorneys each. I would expect that Mr. Wakefield’s costs run into many tens of thousands of dollars. I would expect that the BMJ’s costs are likely even higher.

Which brings us to the obvious question: with a gamble of this size, what would this appeal have accomplished had Mr. Wakefield won? Well, for starters the BMJ team’s Anti SLAPP suit would have moved forward. Texas had just enacted Anti-SLAPP legislation at the time Mr. Wakefield filed suit (as an aside, if I recall correctly this is one of the blunders of Mr. Wakefield’s suit–waiting until after the new law was in place to file). SLAPP stands for Strategic lawsuit against public participation. The BMJ suit essentially puts for the idea that Mr. Wakefield’s defamation suit was a cynical attempt to stop the BMJ (and others) from voicing public criticism about Mr. Wakefield’s actions. Mr. Wakefield faced heavy penalties had the Anti-SLAPP suit gone forward and had the BMJ won.

This is the fourth time that Mr. Wakefield has attempted to “gag the media” as Mr. Deer puts it. And now the fourth time Mr. Wakefield has lost. One can never tell for certain, but it seems likely that Mr. Wakefield would have lost the Anti-SLAPP suit.

Let’s say Mr. Wakefield avoided an Anti-SLAPP judgment. He would have been able to bring his defamation case to court on the merits. Not on the merits of his scientific work, but on the question of whether the BMJ team could rightfully call his work fraudulent. A case the BMJ team certainly prepared for before going to press. And prepared to defend in the UK, where the laws are much more favorable to Mr. Wakefield. Which is to say, I suspect the BMJ felt strongly that they had checked all their facts closely and were well defended in any and all statements they made.

From my point of view, this defamation lawsuit was a vanity exercise by Mr. Wakefield. It got his name in the news. It may have slowed criticism of him for years. He got to look like a hero to his own community.

And he threw tens if not hundreds of thousands of dollars down the tubes in the effort. Mr. Wakefield heads the “Strategic Autism Initiative” which has the purported goal of funding autism research. Last I checked the majority of the money collected for the SAI went to salaries. Mr. Wakefield’s being the lion’s share. Be that as it may, Mr. Wakefield had an option a few years ago: fund autism research or fund this lawsuit.

Well, we see his choice. And the result. Sure there may be a further appeal. Take it to the Texas Supreme Court and delay some more. And run up more bills to pay.


By Matt Carey

Shannon Des Roches Rosa: Changing Conversations: When Parents Murder Disabled Children

11 Sep

Shannon Rosa is the incredible parent of incredible kids, one of whom is autistic. I could say this from what I’ve read because Ms. Rosa is an excellent writer, but I have also met her and Leo in real life. Ms. Rosa writes at BlogHer as well as The Thinking Person’s Guide to Autism and Squidalicious.

A recent BlogHer article she wrote covers a very important topic: how when a disabled person is murdered the conversation usually focuses on the murderer, not the victim

Changing Conversations: When Parents Murder Disabled Children

Her article starts:

Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, “drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes.” Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.

Go to Changing Conversations: When Parents Murder Disabled Children for the full article.

–By Matt Carey

Harpocrates Speaks on: MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

8 Sep

Todd W. over at Harpocrates Speaks has put together a FAQ like guide on the questions that come up with regards to recent research by Brian Hooker and the allegations Mr. Hooker has made about the CDC. That article is an excellent resource for people looking for some answers on this story. The article starts:

The anti-vaccine community has been in a tizzy lately over a supposed “CDC whistleblower”, Dr. William W. Thompson, who, according to them, revealed fraud at the United States Centers for Disease Control and Prevention (CDC). To bolster their claim, they point to a new study from one of their own, Brian S. Hooker, that purports to show evidence of an increased risk of autism among African American boys who receive their first MMR vaccine late. However, the claims appear to be hollow and unfounded, and so they have chosen to rely on emotional arguments that may sound convincing to those who are not familiar with the issues and people involved. In a truly egregious fashion, they have erroneously and cynically compared this whole thing to the Tuskegee syphilis study, and equated the CDC with Adolf Hitler, Josef Stalin and Pol Pot, combined.

With that in mind, here is a brief FAQ for parents, news media and others to help them understand what the claims are and what the evidence actually says. The questions below have been raised or implied by anti-vaccine activists. Hopefully, this will prevent inaccurate reporting and help parents feel reassured about the MMR vaccine.

That FAQ can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media


By Matt Carey

Every human life is worth living

4 Sep

This, like the previous article I wrote, is extremely difficult to write. I find words fail me and that a dry presentation doesn’t do justice to the topic. How, exactly, does one write about the fact that Germany has erected a monument to the disabled and mentally ill killed by the regime?

The New York Times discusses a monument erected in Berlin:

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

BERLIN — The first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

One can read the full article on the New York Times website. And many other news outlets. I will take one more paragraph from the Times.

“Every human life is worth living: That is the message sent out from this site,” Monika Grütters, the German minister for culture, told a crowd gathered for the opening ceremony. “The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’ ”


By Matt Carey

Follow

Get every new post delivered to your Inbox.

Join 1,119 other followers