As the time came to do my usual weekly post for this blog, I was torn over what to write about. Regular readers might have noticed that a certain dubious cancer doctor about whom I’ve written twice before has been agitating in the comments for me to pay attention to him, after having sent more e-mails to me and various deans at my medical school “challenging” me to publish a link to his results and threatening to go to the local press to see if he can drum up interest in this “battle.” I’ve been assiduously ignoring him, but over time the irritation factor made me want to tell him, “Be very careful what you ask for. You might just get it.” Then I’d make this week’s post about him, even though I wasn’t thrilled with the idea of giving in to his harassment and giving him what he wants.
That’s why I have to thank the ever-intrepid investigative reporter Brian Deer for providing me an alternative topic that is way more important than some self-important little quack and a compelling topic to blog about in its own right. Brian Deer, as you might recall, remains the one journalist who was able to crack the facade of seeming scientific legitimacy built up by antivaccine guru Andrew Wakefield and demonstrate that (1) Wakefield’s work concluding that the MMR vaccine was associated with “autistic enterocolitis” was bought and paid for by a solicitor named Richard Barr, who represented British parents looking to sue vaccine manufacturers, to the tune of over £400,000; (2) Wakefield expected to make over £72 million a year selling a test for which Wakefield had filed a patent application in March 1995 claiming that “Crohn’s disease or ulcerative colitis may be diagnosed by detecting measles virus in bowel tissue, bowel products or body fluids”; and Wakefield’s case series published in The Lancet in 1998 was fraudulent, the equivalent of what Deer correctly characterized as “Piltdown medicine.” Ultimately, these revelations led to Wakefield’s being completely discredited to the point where The Lancet retracted his paper and even Thoughtful House, the autism quackery clinic in Austin, TX where Wakefield had a cushy, well-paid position as scientific director, had to give him the boot. Yes, Wakefield is a fraud, and it’s only a shame that it took over a decade for it to be demonstrated.
As much as I hate how it took discrediting Wakefield the man as a fraud rather than just discrediting his bogus science to really begin to turn the tide against the annoying propensity of journalists to look to Wakefield or his acolytes for “equal time” and “balance” whenever stories about autism and vaccines reared their ugly heads, I can’t argue with the results. Wakefield is well and truly discredited now, so much so that, as I noted, his prominent involvement probably ruined any chance promoters of the “CDC whistleblower” scam ever had to get any traction from the mainstream press.
What is sometimes forgotten is the effect Wakefield’s message has had on parents. These are the sorts of parents who tend to congregate into groups designed to promote the idea that vaccines are dangerous and cause autism, such as the bloggers at the antivaccine crank blog Age of Autism, the equally cranky blog The Thinking Moms’ Revolution, or groups like The Canary Party. It is Wakefield’s message and the “autism biomed” quackery that it spawned that have led to unknown numbers of autistic children being subjected to the rankest form of quackery in order to “recover” them, up to and including dubious stem cell therapies and bleach enemas.
This is the sort of parent that is the topic of Brian Deer’s story in the The Sunday Times yesterday entitled “A warrior mother lost to MMR lies“. (Mother Warriors, remember, was the title of a book by Jenny McCarthy promoting the idea that vaccines cause autism and the biomedical quackery parents of such children use to treat autistic children.) It is the story of a mother who became an acolyte of Andrew Wakefield and how she completely made up the link between vaccination and her child’s autism. Because of what is characterized by Deer as a “pathological conflict with his carers,” an unnamed local brought legal action against the mother and father to allow their autistic son to get the care he required.
Unfortunately, the article is behind a paywall. Fortunately, there is a version of his article, “Wakefield ‘MMR mother’ fabricated injury story“, on Brian Deer’s own website, along with a 45,000 word judgment by High Court judge Mr. Justice Baker that entered the public domain last week from the Court of Protection. A link to the complete text of that judgment is also available on Deer’s website. In order to protect the child’s anonymity, the parents are not named, the mother being referred to as “E,” the father as “A,” and the child as “M.” To continue that protection, given that I know many of our readers are quite knowledgeable about l’affaire Wakefield, some even considerably more so than I, I must insist that there be no speculation about the identities of E, M, or A, and no naming of them. In any case, E is what Deer has dubbed a “Wakefield mother,” Wakefield mothers being forgotten victims of the MMR scare engineered by Andrew Wakefield. The story of E is harrowing reading, and Deer is not unsympathetic:
By any reckoning, “E” is a formidable crusader. She is intelligent, articulate and outwardly confident. She has worked as a health service manager. She is a former school governor and a trained mediator. And, most of all, she is a loving parent. She champions her son “M” – who is autistic and learning-disabled – and for his first 18 years looked after him at home, generally “very well” by all accounts.
In America, she likely would be called a “mother warrior”, a name coined by Jenny McCarthy, an actress. These are women who have concluded that their child’s disorders were caused by vaccines, and will stop at almost nothing to prove “the truth”. In recent years, Britain’s “MMR scare” has been exported to the United States, and such mothers have rallied to networks of websites and conferences, even as infectious diseases have returned.
But “E” is British, a leading disciple of Andrew Wakefield, the former “MMR doctor”, who was struck off the medical register in 2010. He is the man who terrified a generation of young parents, claiming that the triple shot against measles, mumps and rubella causes autism and a novel bowel disease. As my lengthy investigations revealed, while he secretly worked for lawyers and tried to launch his own personal business ventures, he caused vaccination rates to plummet, and triggered outbreaks of measles. The British Medical Journal dubbed his research “an elaborate fraud”.
“E”, I believe, is one of the scare’s forgotten victims. I call them the “Wakefield mothers”. Here is a woman, now in her fifties, who I have met but am forbidden to name. She has appeared at public rallies and in media, with her son. She has protested to government ministers. She has denounced judges, doctors and journalists (including me). She sued a drug company that makes MMR.
It also turns out that what E relates to the authorities (and everyone else) about her child’s development of autism does not jibe with available records and evidence, to the point that the judgment finds it hard not to conclude that “E has fabricated, or at least grossly exaggerated, her account.” The entire judgment is incredibly damning, documenting numerous cases of E recounting health issues that are not supported by available documentary evidence. How did this happen? Was E lying, or is this just another example of how malleable memory is and how a mother, finding what she thinks to be a potential cure, can find her memories unconsciously altered to fit her beliefs, so that she really believes her false accounts are true? Or is it a combination? Let’s look at her story, as related by Deer, and the judgment.
The archetype versus reality
Brian Deer carefully points out how E’s story is an “archetype,” the same sort of story that he’s heard “hundreds of times” since he started investigating Wakefield and that I’ve heard as well many, many times since I first took an interest a decade ago in the antivaccine movement, Andrew Wakefield, and the pseudoscientific myth that the MMR vaccine causes autism. As Deer put it, “It was the template media and lawsuit “Mothers’ Story” that would be recited so many times, by so many mothers over the years, that a reasonable person might assume it was true.” Indeed, the most famous “mother warrior” in the US, Jenny McCarthy, tells a story that fits the archetype. When told by these “mother warriors,” the core story is always the same, although the details can vary considerably. The core story is that the child was perfectly healthy, with no indication whatsoever of neurodevelopmental issues (or, usually, anything at all wrong) until sometime after MMR vaccination. In the case of Jenny McCarthy, she claimed that soon after the shot, “boom—the soul’s gone from his eyes.” McCarthy’s story has mutated and morphed through the years and with other retellings, so much so that it is difficult to tell what really happened. Unfortunately, E’s story about M has also morphed through the years.
I’ve read the entire judgment, and one thing that leaps out is a passage at the beginning. After noting that M was born in July 1989, the chronology used by the judge indicates that “on four dates between September 1989 (when he was aged six weeks) and March 1990 (aged eight months) M received the normal range of inoculations, with no recorded reactions,” and that “Between July and December 1990 there were eight further visits to the GP noted in M’s medical records in which he was reported as suffering from a variety of infections. There is no record of any developmental delay in these notes.” Then:
On 12th January 1991, aged just under 18 months, M was given the measles, mumps and rubella (“MMR”) vaccination. There is no record in his GP notes of any adverse reaction. In fact, there is no report of any adverse reaction to the MMR in any record relating to M for the next nine years. From 2000 onwards, however, M’s parents, and in particular his mother, have given increasingly vivid accounts of an extreme reaction to the injection experienced by M. There are descriptions of M screaming after having the injection, followed by six hours of convulsions, screaming and projectile vomiting. It is the parents’ case that the mother told their GP that he had had a bad reaction to the MMR but was told by him that she was an over-anxious mother and must be imagining it. When E called the GP a second time and said she was calling the emergency services, she was told not to do this, but went ahead because M was going in and out of consciousness. The paramedics and the GP had arrived at the same time, at which point M’s temperature was 104. The GP had told the paramedics to leave. Before going, they had told her that this was a case of meningeal encephalitis. The GP had been verbally abusive to E. The above account, given to Dr. Beck, a psychologist instructed as an expert witness in these proceedings, is similar to that given by the mother to a variety of professionals. She also gave a detailed description of M’s reaction to the MMR in the course of her oral evidence. One note in an “auditory processing assessment report” dated 31st October 2002 records E alleging that, following the MMR, M had remained in, “A persistent vegetative state for six months.”
The judgment (Deer as well) notes multiple inconsistencies in E’s accounts of M’s health problems, which she never linked to the MMR until at least 2000, after news of Wakefield’s case series and claims about the MMR, autism, and “autistic enterocolitis” had begun well and truly circulating in the British press. Ironically, as Deer and the judgment relate, E claimed repeatedly that her son had autistic enterocolitis, even after M had been evaluated by Wakefield’s group. Why is this unusual? The reason is simple; despite the tendency of Wakefield’s group at the time to promote autistic enterocolitis as a real entity and blame it on the MMR, even his group at the Royal Free Hospital didn’t diagnose M with the condition. It’s noted that E and A “have stated that M displayed signs of a severe gut disorder from the time of the MMR vaccine for 10 years until he was assessed and diagnosed at the Royal Free gastroenterology department” even though “there is no record in the GP notes or any other contemporaneous complaint that M had suffered a gut disorder during this 10 year period.” In fact, what M had been diagnosed with was constipation. The hospital notes from 2002, for instance, list E’s diagnosis as “progressive [regressive] autism – constipation.” As High Court judge Mr. Justice Baker’s judgment states:
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.
If even Wakefield’s group at the Royal Free Hospital didn’t diagnose M with autistic enterocolitis, that really ought to tell you something! In any case, what Deer and this judgment recount is that the mother, having discovered Wakefield’s hypothesis, changed her story. Indeed, E filed for compensation in the “class action” lawsuit three months after she obtained an appointment at the Royal Free. Before she learned of Wakefield’s MMR scare, E blamed M’s condition on this:
The first relevant concern was in May 1990, when “M” was aged 10 months. In an account taken later, his parents said that on one night they felt that he had three times “nearly stopped breathing”, turned blue, and from then had difficulties swallowing.
“A clear indication of the trauma his body experienced from this illness was from that time onwards he could not bear his head to be anything other than upright,” said an education service report of the parents’ words, filed in evidence. “If it was moved lower than his shoulders his whole body would go completely rigid. For a time he lacked control over his tongue, until we managed to teach him how to keep it in his mouth.”
This was almost eight months before “M” received MMR, which was given to him in January 1991. And there were no reports of any reactions, or anything related to the shot, in his notes for the next nine years. Meanwhile, “E”, and her husband, “A”, who worked for the fire service, cared for their son, with devotion and love, as paediatricians struggled with the boy’s emerging autism and his significant intellectual delay.
Once E had discovered the dark path of vaccine injury and autism biomed, however, she jumped in, head first, taking her son to a variety of alternative medicine practitioners, garnering a huge number of diagnoses at various times, and treating him with virtually every form of quackery you can think of to which autistic children are subjected. The sorts of health issues reported by E included loss of sensation in M’s hands and feet, seizures, meningitis, leaky gut syndrome, tumors in his gums, “chronic blood poisoning,” bilateral deafness, uncontrollable temperatures, heavy metal poisoning (of course!), a “black shadow sitting on his left sinuses,” stabbing pains in his groin, uncontrollable sneezing, adverse effects of “electromagnetic energies” (against which E wrapped “electronic items in his [M’s] bedroom in tin foil to protect him”), “black grunge oozing from every orifice,” and Lyme disease (also of course). Other diagnoses included, rheumatoid arthritis; heavy metal poisoning (based on an isolated test result when such a diagnosis turns on repeated elevated levels); and a defective blood brain barrier. It gets even worse, though.
When M reached his teenage years and started to demonstrate more difficult behaviors, E blamed his personality change on “an unavoidable personality change” brought about because he was “dominated by testosterone and mercury.” This, as you might recall, is a truly quacky idea promulgated by a father-son team of autism quacks, Mark and David Geier, whose concept was that testosterone somehow “bound” mercury (from vaccines, of course) so that it couldn’t be properly chelated out of the brain. Never mind that the study they relied on for claiming that testosterone could bind mercury reported such binding in hot benzene, whose relevance to the aqueous solution that is human blood and serum is highly dubious, at best. The Geiers’ suggested solution was chelation therapy plus Lupron, the latter of which shuts down sex hormone production quite markedly and is a drug sometimes used for chemical castration.
As repeated several times in the judgment and by Deer, nowhere is there evidence to support any of these diagnoses from reputable medical practitioners, nor does the medical record support a temporal link between MMR vaccination and onset of autistic symptoms (or other symptoms), for that matter. E’s explanation? Those records are missing, doctors didn’t record the stories and incidents that she related to them, and that doctors or someone has removed relevant pages of the medical record. However, the court, after considerable investigation, concluded:
For some time E has alleged that part of M’s medical record is missing. The inference that she invited the court to draw was that pages had been deliberately removed to conceal contemporaneous records of his reaction to the MMR. It is now clear that no part of the records have been removed. One page of the records was missing and copies produced by E and A, but the original record was intact. I am not going to speculate on the reason why the copies produced by E and A are incomplete.
This sort of claim is repeated time after time after time by E, as described in the judgment. Conveniently, all the verifiable medical records that would back up her assertions have gone missing somehow. The implication, of course, is that it’s a conspiracy to discredit her, an implication the judge rejected:
If M had an experienced an extreme reaction to the vaccine, as now alleged, it is inconceivable that E and A would not have sought medical advice and thereafter told all doctors and other medical practitioners about what had happened. As I put it to E in the course of the hearing, there are only three possible explanations for what has happened. The first is that E did give the account to Dr Baird and all the other practitioners at every appointment, but each of them has negligently failed to record it. The second is that she gave an account but all the practitioners have chosen not to include it in their records. That is what E maintains has happened, alleging that the whole of the medical profession is deliberately concealing the truth about the MMR vaccine. The third is that E has fabricated, or at least grossly exaggerated, her account.
Which is more likely? That M’s doctors over the course of nearly a decade failed to document such an important part of his medical history, or that the story about M’s vaccine reaction is not accurate? If the court were to believe the mother, it would have to have concluded that there was “an MMR conspiracy, through which thousands of doctors and scientists (and, more recently, journalists) concealed horrific alleged injuries to children,” a “legal conspiracy, through which judges denied fairness,” and a “local government conspiracy, by which hard-pressed social workers wanted to remove autistic children from their parents.” These are exactly the sort of conspiracy theories I’ve seen time after time since becoming interested in the antivaccine movement. I could write about them every day if I wished.
Of course, once the fake diagnoses are made, can the quack treatments be far behind? In this case, they weren’t. M was subjected to a veritable cornucopia of quackery by E and A. Besides the aforementioned wrapping of electrical equipment in M’s room with tin foil, there was quackery that involved everything from cranial osteopathy, reflexology, oxygen chamber sessions for six hours at a time (it’s not clear if it was hyperbaric oxygen or not), and, of course, lots and lots of supplements and homeopathic remedies. According to the judgment, “the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies.” One description of a treatment administered on November 11, 2012 states:
M had a cranial osteopathic appointment that focused on the contorted membrane between the two frontal lobes, apparently where both optical and auditory brain stems sit. The twist in his central membrane was significant for most of the treatment to be spent on it and it would appear to have come from M’s head overheating, obviously trying to release body heat.
Then there was reflexology:
He is also benefiting from reflexology twice a week at the moment, as his hands and feet are so pale, freezing cold, rigid and painful. We are giving sips of water in between mouthfuls to help it go down and we are ensuring his bite size is far smaller, but he does seem to be suffering with trapped wind.
All of this doesn’t even include the rigid diets imposed on M to try to cure his apparently nonexistent gut problems. Overall, in the story of M, we see a story I’ve seen all too often, that of parents latching on to vaccines as a cause of their child’s autism and trying to “recover” their child through a wide variety of quackery. These stories appear frequently at blogs like Age of Autism and The Thinking Moms’ Revolution.
The scenario described above would be bad enough if it were completely innocent, but there is more than just well-meaning parents who latched on to the myth that vaccines cause autism as an explanation why their child isn’t normal and embraced quackery in order to try to “recover” their “real” child. Deer states at one point that he had “merely thought that her son’s autism plus Wakefield had so stripped her of trust in almost anyone but charlatans that she had been driven off the rails and round the bend” and, elsewhere, that he had “wondered if the mother was mad” (an offensive way to wonder if the mother had a mental illness that made me really wish he had chosen a different way to say what he meant). He also noted that E’s picture could fit that of “thousands of parents” who are taken in by Wakefield, who, Deer notes, regularly appears at “conferences dominated by quack remedy merchants and crowded with mother warriors who – wrongly blaming themselves for having their children vaccinated – are uniquely vulnerable prey.” This latter observation is, of course, absolutely true. That is how Wakefield operates. He blames autism on vaccines, which leads these parents to feel guilty over their decision to vaccinate and, in their minds, cause their children’s autism. Then he offers them a way to assuage that guilt through “recovering” their “real” child via biomedical quackery.
However, as bad as that is, in some cases, it gets even darker than that. Some parents, apparently E among them, use vaccine injury as a means of control, and that is what the court found:
Although not a criminal case, a litany of misbehaviour runs from page to page in the judgment. “E” subjected her son to unnecessary tests and interventions “and/or lied” about purported illnesses. She behaved in a “devious and destructive” way towards professionals. She denied her son the chance to develop more independence. She allowed the pain and suffering of a dental abscess to go untreated for a year, then planned to send the lost teeth to Wakefield. She made false allegations against social workers, and vexatiously complained to regulators.
In the end, Baker ruled that, not only did she have factious disorder, but a bunch of other disorders as well: “narcissistic personality disorder”, “histrionic personality disorder” and elements of “emotionally unstable personality disorder”. Her legal deputyship status was revoked. “M” would receive a vaccine if a GP advised it. And the mother was told to demonstrate a “fundamental change of attitude”, or face “permanent steps” to restrict her involvement in the future of her much-loved son.
It’s as sad a story as one can imagine, particularly for M. In E’s case, where did the normal malleability and suggestibility of human memory, such that later information and influences can alter our memories such that we “remember” things that that didn’t happen or our memories of incidents are not what really happened, end and E’s factitious disorder begin? Who knows? Who can tell for sure when she was lying, when she really believed her son had various disorders, and what they were? In the end, when trying to safeguard M’s welfare, it really doesn’t much matter. What we do know is that Wakefield’s antivaccine message, coupled with the quackery that it spawned (it’s not for nothing that I like to describe Wakefield’s Lancet paper as the “paper that launched a thousand quacks”) gave E the tools, and she used them. She subjected M to unnecessary tests and quack treatments; she prevented him from becoming more independent; and she even sued a pharmaceutical company. Most bizarrely, she allowed M to suffer for a year with an untreated tooth abscess, planning to deliver the tooth to Wakefield.
None of this helped her son, and the judge concluded:
It is inevitable that, were M to return home, he will be subjected to the same regime as before in which his mother sought to reimpose control over all aspects of his life. Furthermore, it is likely that she would continue to misrepresent his state of health and expose him to unnecessary examinations and treatments. It is inconceivable that M could return home unless E demonstrates a fundamental change of attitude.
This court acknowledges the enormous demands placed on anyone who has to care for a disabled child. Even though such carers are motivated by love – and I accept that both E and A love M and are deeply devoted to him – the burdens and strains on them are very great. Every reasonable allowance must be made for the fact that they love their vulnerable son and want the absolute best for him. Every reasonable allowance must be made for the impact of these burdens and strains when assessing allegations about the parents’ behaviour. However, having made every reasonable allowance for those factors, I find the behaviour exhibited on many occasions, by E in particular, was wholly unreasonable.
The saddest part is at the end, where the judge concludes that unless E and A can demonstrate a “fundamental change of attitude,” the court will have to move to take permanent steps to restrict their involvement in his life.
This whole family, but most of all M, is the sort of victim of Andrew Wakefield who don’t get enough attention.