| The four
principals displayed Mount Rushmore-style on
the Thoughtful House website until August
2005: Andrew Wakefield, Arthur Krigsman,
Bryan Jepson, and Doreen Granpeesheh |
There's
a whole lot of thinking in
our Andy's Thoughtful House
|
Comment by Brian Deer:
August 29 2005
|
Keen
observers of anti-MMR vaccine campaigner Dr Andrew
Wakefield, whose fitness to practise medicine is
presently the subject of an unprecedented two-year
investigation by the United Kingdom’s General
Medical Council, have been surprised by apparent
changes at Wakefield’s new US enterprise:
Thoughtful House, in Austin, Texas.
During the early part
of 2005, Thoughtful House’s plush blue-and-white
website indicated that the 49-year-old British former
gut surgeon and laboratory researcher, was
establishing what appeared to be a facility to bring
developmentally-disordered children from all over
America, and possibly the world, to the lone star
state's capital, for the purpose of undergoing
endoscopy.
This medical
procedure, requiring sedation or general anaesthetic,
most often involves the insertion of a fibre-optic
tube into the rectum (a lower endoscopy, or
colonoscopy), which is then threaded round several
feet of the large intestine, or colon. Thoughtful
House personnel have indicated that they also hope to
perform “capsule” endoscopy, in which
children are persuaded to swallow a large pill
containing a camera. But Wakefield’s known
interest is in looking at a remote portion of the gut
known as the terminal ileum (near the appendix),
making the use of the tube effective.
This service, offered
online by Thoughtful House, evoked echoes of
Wakefield’s past involvement with autistic
children at the Royal Free hospital, London. Working
with lawyers and anti-MMR groups, from September 1996
to October 2001 he led the recruitment of hundreds of
developmentally disordered child patients, until he
was departed from his post in the hospital’s
medical school by what his employers called
“mutual agreement”.
Wakefield’s
anti-MMR activities produced widespread controversy,
eventually leading to an investigation in 2004 by The
Sunday Times and the UK’s Channel 4 Television
network. The Sunday Times findings were followed by a
remarkable raft of disciplinary charges being laid
against Wakefield by Britain's General Medical
Council, which has the power to revoke his
registration as a doctor. These charges are due to be
heard at a mammoth six-week public hearing, presently
scheduled to begin in June 2006, and on which
Wakefield’s position remains unknown.
In his pre-Thoughtful
House days, the referral of autistic children to the
Royal Free began after Wakefield was noticed by
lawyers and anti-vaccine groups, following a
televised attack he launched in 1995 on the combined
measles, mumps and rubella shots. At the time, he
claimed that measles-containing vaccines could cause
the inflammatory bowel disorder Crohn’s disease,
and quickly filed for patents on this
“discovery”. Later, he changed tack and
intensified his campaign, claiming instead that the
three-in-one MMR could cause autism, and filed
patents on a potential competitor vaccine, diagnostic
kits and a would-be autism therapy.
Although the patents
led to nothing, and neither Wakefield, nor anybody
else, has substantiated any link between the triple
vaccine and either Crohn’s disease or autism,
his claims generated considerable personal publicity,
leading to at least some confused parents of autistic
children turning to him for help. In an area of
disability plagued by scientific ignorance and
medical impotence, some parents celebrate Wakefield
as a pioneer and saviour. He has even been compared
by anti-vaccine campaigners to scientific giants,
including Galileo.
“For every
money-grubbing pharmaceutical apologist and medical
cover-up specialist trying to run you down, there are
1,000 of us out here who believe that you are honesty
and integrity personified,” declared a bulletin
board posting from a parent to Wakefield, following
The Sunday Times revelations. “I honour you and
your fight to help others and truly believe that
those who do good for the right reason will always
prevail in the end.”
Wakefield isn't a
paediatrician. At the Royal Free, he held an academic
research post, not permitting him to examine or treat
patients. But, although he appears now to have set up
full-time in the US, it’s not known for this
commentary what terms have been laid down for his
relationship with Thoughtful House. The Texas Medical
Board (formerly the Texas State Board of Medical
Examiners) hasn't licensed him to practise, and his
visa status is unknown to this writer.
A UK organisation
claims Wakefield as its “full-time Chief Medical
Scientist”, and another enterprise, in Florida,
describes him as its “director of
research”. But in early 2005, the Thoughtful
House website set out what appeared to be the shape
of his new flagship. The welcome page explained:
“Thoughtful House is fighting to recover
children with developmental disorders (autism, PDD,
Asperger’s syndrome, ADD, ADHD, and NLD) through
the unique combination of medical care, education,
and research.”
Thoughtful House
involves a number of others, such as an English
"hate mail" campaigner, Carol Stott, who
was also brought into the MMR issue by UK lawyers,
and who was dubbed “visiting Professor of
Developmental Psychology” by Thoughtful House,
despite her being censured by the British
Psychological Society for professional misconduct.
But the new enterprise, registered as a
not-for-profit, was to be led by the characters at
the top of this webpage. These are Wakefield himself,
as Thoughtful House's “executive director”;
two medical clinicians, Arthur Krigsman
("clinical director") and Bryan Jepson; and
a psychologist, Doreen Granpeesheh.
At another website,
the parents of a boy with a serious developmental
disorder, who are members of the Thoughtful House
board, indicated that medical care has been provided
from its Austin premises for nearly a year. "Its
clinical services began in December of 2004 with
pediatric and pediatric gastroenterology clinic for
children with autism and related disorders,"
they say.
According to
Wakefield, meanwhile, in a statement on Thoughtful
House's own website: “Thoughtful House is a
unique environment that combines innovative medical
care, education, and applied behavioural analysis
with clinical and basic scientific research. Through
Federal support [presumably 501(c)3 tax-breaks], and
the generosity of the local community and friends, it
has become a reality. It belongs to the people of
Austin and central Texas, but it is a ray of light to
the world.”
After the collapse of
the UK’s MMR scare in 2004, this ray of light
has been watched with interest from Europe. In
addition to those caught up in the GMC disciplinary
proceedings, a number of former Wakefield
collaborators appear now to stand at some distance. A
recent Wakefield paper, based on tests carried out by
a Dublin pathologist, were published in a fringe
medical journal with the pathologist’s name
removed. And another paper, in which Wakefield
republishes apparent past Royal Free findings on
children’s guts, included among its authors none
of the clinicians involved in the work, but credited
a lawyer’s medically-unqualified former
researcher.
For the Thoughtful
House enterprise, Wakefield found new clinicians,
including Drs Arthur Krigsman and Bryan Jepson.
Krigsman practises as a private paediatric
gastroenterologist near New York City. Jepson is
director of an alternative autism practice south of
Salt Lake, called the Children’s Biomedical
Center of Utah Inc. Whether either intend to move to
Austin, or instead plan to combine their present jobs
with sessions at Thoughtful House, wasn't clear when
this commentary was written.
The Thoughtful House
website set out the nature of its clinical plans - in
which Arthur Krigsman, the endoscopist, was key.
Krigsman is a familiar face on a US-wide circuit of
autism conferences, increasingly influenced by
anti-vaccine campaigners and litigants, and although
he’s published nothing on the subject in
peer-reviewed medical journals, has been a vocal
supporter of Wakefield’s. At a Thoughtful House
conference in April 2005, he declared his gratitude
to his apparent mentor, and pledged that he was
"on board for the ride”.
On its website FAQ
page for Arthur Krigsman (who at the time of writing
wasn't licensed to practise medicine in Texas),
Thoughtful House explained that it didn't offer a
full range of medical services. Evidently, parents -
perhaps including those who’d been impressed by
Wakefield and Krigsman at conferences, or who’d
become suspicious of MMR due to media scare stories -
would instead initially see their local physicians,
armed with what Thoughtful House described as a
“patient packet”.
“This packet
contains directions on how to complete the necessary
patient narrative,” Thoughtful House explained
in the website FAQs. “In addition, it contains
several prescriptions for the blood tests, stool
tests, and abdominal X-ray.”
Having prepared, and
presumably paid, for these tests, parents were to
send the results to Thoughtful House, in order that
"the doctor" could "determine how to
best help your child”. Rather than complete any
necessary investigations and treatment at the medical
centre where they first took their child - any number
of which would no doubt be staffed and equipped to
perform endoscopy on children - they were apparently
to head to Austin.
The first
consultation with Thoughtful House, however,
wasn’t to be in person. “How long does it
take to get an appointment for the initial phone
consultation?” asked a website FAQ. “That
depends on how fast the required narrative and
blood/stool/X-ray tests are submitted,” came the
answer. “When we have received them and the
chart is complete, it is shown to the doctor. Someone
from the office staff will call you and schedule the
appointment.”
This sounds like an
unusual way to obtain appropriate medical care, but
parents are often desperate. Digestive problems have
been recognised since at least the 1930s as a common
issue for the developmentally disordered, and a high
incidence of constipation, with all its intractible
complications in children with behavioral and
communication difficulties, has been reported in
association with autism since before MMR was ever
introduced.
The Thoughtful House
clinical project may mirror features of
Wakefield’s former working methods in England,
where, although he had no personal patients, he was
known for advising parents on the phone. But it
wasn’t clear from reviewing the enterprise's
website why autistic children would benefit from
travelling to Austin, rather than having any needed
procedures locally. Endoscopy isn’t a treatment.
Krigsman isn’t a practitioner of extraordinary
distinction. And any medication or therapy to be
prescribed as a result of his investigations would
presumably be supplied elsewhere.
Autistic children are
famous for shunning change, and a journey to Austin
might be stressful. Such a trip, moreover, would
likely be expensive. And both endoscopy and sedation
have risks. Wisely, Thoughtful House offers advice
that might at least keep out of aircraft any children
still recovering from procedures. “If we are
traveling from out of town, how soon can we leave
Austin to return home?” asked one FAQ question.
Answer: “We prefer that patients remain in the
Austin vicinity until the following morning.”
The website indicated
that Arthur Krigsman “is not an in-network
provider with insurance companies”, but
Thoughtful House arranges talks for parents who may
be anxious about finding the money. Wakefield’s
enterprise doesn’t publicise a price list, but,
for ball-park comparison, Dr Bryan Jepson’s Utah
practice advertises $350 for an initial consultation,
and $175 for a one-hour follow-up. Colonoscopy at
Thoughtful House - presumably requiring an
anaesthetist and the rent of an operating theatre at
the nearby Austin Surgical Hospital - would probably
cost many parents a lot more, in addition to any
motel and travelling expenses.
But whether or not
children benefit from a pilgrimage to Wakefield's
Austin premises, the endoscopies would perhaps
advance another of Thoughtful House's stated goals.
“Thoughtful House scientists and physicians are
at the cutting edge of a new understanding of the
biological origins of childhood developmental
disorders,” explained the website. “Austin
will become the hub of an existing collaborative
research program - a virtual university - involving
over 35 scientists in academic institutions
worldwide.”
This programme,
hopefully carried out under independent research
ethics supervision, apparently aims to unravel what
the Thoughtful House website described as
Wakefield’s “discovery of autistic
enterocolitis”. This discovery - an alleged gut
inflammation distinctive to autism - has yet to be
substantiated by any other group, despite parents
widely believing that it has. Specialists in this
field deny that any such distinctive condition
exists, with even the influential and experienced
paediatric endoscopist Dr Tim Buie of Harvard
University, who treads the same conference circuit
boards as Wakefield, saying that he has seen nothing
specific to the gastroenterology of autistic
children.
Thoughtful
House’s website seemed confusing on this point.
Do autistic children have distinctive gut problems,
or not? Wakefield's core idea, developed during his
collaborative relationship with UK lawyers and
anti-vaccine campaigners, was that MMR damaged the
gut, creating a recognisable bowel pathology, that
went on to inflict injury on the brain. Indeed, as of
today's date, the website appears to claim that,
based on this idea, Thoughtful House staff are curing
autism. "At Thoughtful House we find that when
we treat a child's underlying health issues, such as
autism gastrointestinal problems, their autistic
behaviors improve or even disappear completely,"
it says.
But, elsewhere on the
website, the FAQs raised a telling question about
Thoughtful House's clientele. “Does Dr Krigsman
only treat children with an autistic spectrum
disorder?” it asked. Answer: “The majority
of children that are seen at Thoughtful House for
gastrointestinal problems have an ASD. We also treat
unaffected siblings of ASD children, many of whom
are suffering from identical GI problems.”
[emphasis added]
This looked like good
business, but recent developments suggest that
something in Austin has changed. In late August 2005,
the Thoughtful House website underwent dramatic
reconfiguration. The “Mount Rushmore”
line-up of Wakefield, Krigsman, Jepson and
Granpeesheh, seen above, vanished from the welcome
page. And previously extensive details of the
Wakefield operation's clinical services were replaced
with: “This page is under construction”.
Previously, a site
template named the four principals - Wakefield,
Krigsman, Jepson and Granpeesheh - at the bottom of
each webpage. This was changed in August to name only
two: Wakefield and Granpeesheh. Likewise, previous
details given of speaking engagements, and other
material involving Krigsman and Jepson, has also been
unlinked within the site.
In short, it appears
that Thoughtful House clinical services are on hold,
with its intended clinicians moved out of view.
Although it's understood that license applications
last week came before the Texas Medical Board, and
that, according to remarks by Krigsman elsewhere, the
enterprise had previously attempted to open in
Florida but hit licensure problems in the sunshine
state, what the website changes might mean for
parents, and, more importantly, children, will be
reported as soon as we know.
Thoughtful
House update: Dr Arthur Krigsman misconduct report
November
21 2005: Arthur Krigsman mystery (at least partly)
solved
If you have news
about Thoughtful House, the doctors' licensure
applications or anything else to say, please feel
free to contact Brian Deer. Confidentiality, if
required, is assured.
Thoughtful House suspends biographical pages
of Drs Arthur Krigsman and Bryan Jepson |
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