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How much does one get paid to run Thoughtful House?

4 Dec

It appears as though $270,000 per year.

The tax forms are online.

They paid the University of Washington $319,000. One might speculate this is payment for their research collaboration on vaccines with Dr. Gene Sackett. If so, it is odd that no money is paid to their other collaborator, the University of Pittsburgh.

There is also a payment of $119,000 to a group called Visceral in Bath, UK.

It strikes this reader a bit odd that Thoughtful House paid them $119,000, but they only show an income of £36,551 . Perhaps it is a difference in fiscal years.

Nothing really that interesting. Just a lot of money being paid to a person who, as far as I can tell, is not licensed to actually treat children.

Thoughtful House acknowledges that chelation can be dangerous and not effective

14 Nov

IV Chelation could cause death, and Thoughtful House acknowledges it:

From a recent story in the Austin Statesman:

Thoughtful House’s IV chelation consent form, which Juli Martinez provided to the American-Statesman, includes a long list of possible side effects that include intestinal disorders, joint pain and, in rare cases, “allergy, anaphylaxis, arrhythmia and even death.” It adds that the treatment offers no guarantee of success.

Wow, Thoughtful House admits that IV chelation, even as performed by them, could cause death.

I have read so many apologists for the doctor who killed Tariq Nadama with chelation. They typically read, “the doctor made a mistake” or “the doctor used the wrong drug” followed by statements that chelation is perfectly safe. And, yet, Thoughtful House seems to be saying that even the correct drug could result in death.

And there is no guarantee of success.

Parents in lawsuit over Thoughtful House treatement

14 Nov

Father takes ex-wife to court over son’s autism treatment is the title of a recent story on Statesman.com. The subtitle: Mother says intravenous treatment at Thoughtful House is unproven and too dangerous..

Yes, it’s about chelation. The kid has been undergoing chelation (suppository), but the father wants to do IV chelation. From the Statesman:

Mario Martinez wants his wife’s consent to let their 7-year-old son, William, undergo intravenous chelation — the use of chemicals to remove metals, such as lead and mercury, from the body. Martinez, 39, said he thinks his son is making steady progress at the Thoughtful House Center for Children in Austin by undergoing a less invasive form of chelation and wants the boy to start IV chelation.

The parents are divorced, with the father having primary care of the child. However, Thoughtful House requires both parents to consent to IV chelation.

The mother states that the suppository chelation has been ongoing for two years (yes, years) without progress, but with adverse side effects:

Juli Martinez said in an interview that her son has been receiving chelation in suppository form for two years, which she claims has made him ill. She said chelation hasn’t helped his autism but being in a regular classroom has.

The father has taken the mother to court to get the approval for the IV chelation.

Chelation is the process of removing metals from the body through drugs. Alternative medical practitioners (such as Thoughftul House) use chelation on the assumption that “heavy metal toxicity” is a factor in autism.

It isn’t. This is based on an incredibly bad hyptohesis (Autism is a “novel” form of mercury poisoning), and idea that actual medical toxicologists reject.

Chelation therapy for real heavy metal toxicity is not a prolonged process. Two years is very long. Chelation by suppository is a relatively inexpensive therapy. By contrast, IV chelation at thoughtful house involves $400 every two weeks in testing:

While there may not be scientific proof that chelation helps autism, anecdotal evidence exists, Mario Martinez said. He is willing to spend an extra $400 every two weeks on tests to make sure the twice-monthly IVs are safe, he said.

The father says that the IV chelation is great:

Mario Martinez, who has had primary custody of the couple’s two children since their 2007 divorce, disputes that chelation has made William ill and said that the boy had an IV chelation test that showed he easily tolerated it. He said it brought “immediate, dramatic results,” in which his learning and behavior improved.

I wonder what an “IV Chelation test” is? Did they do a round of IV chelation, without the mother’s consent? What about their rules that the mother has to approve?

Frankly, the mother should be the one taking the father to court.

The court proceeding has been put off until Dr. Jepson of Thoughful House can appear or give a deposition.

The mother is representing herself. Frankly, a medical toxicologist should step in to offer her some support to end this travesty.

What are the allegations against Dr. Wakefield?

16 Sep

Dr. Andrew Wakefield, not of Thoughtful House in the U.S., has recently been called before the General Medical Council for a “fitness to practice hearing”. The allegations stem from activities related to his research of about 10 years ago on children (many autistic).

I recently discussed two of incidents being investigated: a birthday party where blood was drawn from typically developing children (for controls) and activities related to his invention and the subsequent patent his hospital (the Royal Free) applied for. I found it interesting to see these layed out, so I decided to post them here for others to read as well.

These are allegations. The process has not concluded, nor has any decision been reached.

This is a short version. A detailed list (93 pages) can be found on Brian Deer’s website. Note that these 93 pages include allegations against Doctors Murch and Walker-Smith.

Dr Andrew WAKEFIELD GMC Reference number: 2733564

Professor John WALKER-SMITH GMC Reference number: 1700583

Professor Simon MURCH GMC Reference number: 2540201

The GMC’s statutory purpose is to protect, promote and maintain the health and safety of the public by ensuring proper standards in the practice of medicine.

We investigate complaints about individual doctors in order to establish whether their fitness to practise is impaired and whether to remove or restrict a doctor’s registration.

The GMC does not regard its remit as extending to arbitrating between competing scientific theories generated in the course of medical research.

The following is a summary only of the allegations which will be made before the Panel at the forthcoming hearing.

The Panel will inquire into allegations of serious professional misconduct by Dr Wakefield, Professor Walker-Smith and Professor Murch, in relation to the conduct of a research study involving young children from 1996-98.

Dr Wakefield, Professor Walker-Smith and Professor Murch, were at the relevant times employed by the Royal Free Hospital School of Medicine with Honorary Clinical contracts at the Royal Free Hospital.

It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”. The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.

It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.

The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).

It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.

The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.

The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.

The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.

The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.

We cannot guarantee that all those wishing to attend the hearing will be able to do so, as seating is limited. If you plan to attend the hearing please email the GMC press office press@gmc-uk.org. In the event that we have to allocate seats those people who have notified the press office will be seated before others.
-Ends-

Greater detail can be found in this document, hosted on Brian Deer’s website. It is 93 pages of details of the allegations against Dr. Wakefield, Dr. Walker-Smith and Dr. Murch.

Dateline and Dr. Wakefield’s patent activities

16 Sep

In the recent Dateline NBC episode about Dr. Wakefield, Matt Lauer asked Dr. Wakefield about his patent activities.

As a bit of background: before Dr. Wakefield’s 1998 Lancet article was published, his hospital, the Royal Free, had submitted a patent application for an invention of Dr. Wakefield’s. The application was titled, “PHARMACEUTICAL COMPOSITION FOR TREATMENT OF IBD AND RBD”

IBD is “inflammatory bowel disease”
RBD is “regressive behavioural disease” “(also referred to as pervasive developmental disorder)”

(definitions taken from Dr. Wakefield’s Great Britain patent application 2,325,856)

As you might assume from the title, the patent has as a main thrust the idea that certain transfer factors could be used therapeutically. In other words, the main point appears to be to use this as a treatment. This does not exclude the fact that the patent also includes a claim for a classic, preventive vaccine.

The original patent application, filed June 6 1997 (before Dr. Wakefield’s first autism paper in The Lancet), is shown on Brian Deer’s website.

There are nine claims to the patent. Eight of which relate to the proposed treatment. Claim two, however, states:

The composition according to claim 1 adapted for use as a vaccine for the prophylaxis of measles virus.

Prophylaxis, of course, meaning to prevent.

The existence of such a patent application raises the obvious question of conflict of interest. In other words, was there the possibility that Dr. Wakefield’s invention could result in royalty payments to Dr. Wakefield for a vaccine? Could he profit from what amounts to a single vaccine for measles (as opposed to the combination virus MMR vaccine)?

Dr. Wakefield in a previous statement (again hosted on Brian Deer’s website):

The reference to the possible use of TF [transfer factor] to protect children against measles infection – the thrust of the Sunday Times’ conspiracy theory – was put in as an afterthought in the patent. It was entirely speculative and never pursued in any shape, manner or form.

The provisional patent filing was entirely speculative and was for a possible therapy; as such, it had no bearing on the 1998 Lancet paper.

Note that Dr. Wakefield acknowledges that his invention was claimed to be able to protect against measles infection. As we will see below, this is in direct contrast to his statements on Dateline.

Before we delve into that, I must strongly disagree with Dr. Wakefield as to whether this had bearing on the 1998 Lancet article. Part of the patent application clearly claims the use of the invention as a vaccine. Whether the invention was speculative or that the main use was as a therapy is immaterial. The appearance of a financial conflict of interest should have been reported to The Lancet, the referees, and to the press, in my opinion.

In his statement, Dr. Wakefield goes on to say:

It constituted no potential conflict until the patent was awarded.

Again, I strongly disagree. If the patent was a potential conflict of interest, so was the application. Both are a potential to profit.

Also, if the patent itself is a potential for profit, how can one justify the previous argument that the application was not a conflict since it was merely “for a possible therapy”? Again, if the language of the patent was a potential conflict due to the inclusion of the vaccine, the application was a potential conflict as well.

So, after that long introduction, what did Dr. Wakefield have to say to Matt Lauer?

Dr. Wakefield is back to denying that the invention was for a vaccine to prevent measles and is claiming it as merely a therapeutic agent.

But as we have already seen above, this is not what the patent states. This isn’t even consistent with Dr. Wakfield’s own previous comments.

Here is the section where Matt Lauer of Dateline interviewed Brian Deer on the topic:

First impression: Matt Lauer’s team messed up with the statement that the vaccine was “for the elimination of MMR”. I heard that statement as though the purpose of the Wakefield vaccine was to eliminate the MMR as a vaccine. The wording of the first sentence of the patent application is:

The present invention relates to a new vaccine for the elimination of MMR and measles virus and to a pharmaceutical composition…

I read this as the vaccine for the elimination of the MMR viruses from someone with a persistent infection of one or more of measles/mumps/rubella, not as for the elimination of the MMR vaccine itself.

It is not well worded.

The statement from the patent application that most clearly shows that it covers the invention as a vaccine is claim 2. It is short, clear and direct to the point.

The composition according to claim 1 adapted for use as a vaccine for the prophylaxis of measles virus.

This is what Dateline should have used, in my opinion.

I think the segment below clearly shows that part of the intention of the invention was as a vaccine for the prevention of measles which is purported to be safer.

fragment of Dr. Wakefield's original patent application

fragment of Dr. Wakefield's original patent application

Back to the interview, I think that Mr. Deer makes a key point in stressing that the patent application discussed the invention as a “safer” vaccine. This makes it more clearly a possible contender to replace the MMR vaccine as a product.

Brian Deer notes on his website:

A letter from his lawyers dated Jan 31 2005 said: “Dr Wakefield did not plan a rival vaccine.”

It is very difficult to ascertain intentions. At a very real level, what Dr. Wakefield planned is immaterial. The fact of the matter is that there was a possibility (however remote) that Dr. Wakefield could profit if the combination MMR vaccine were removed. The appearance (at least) of a potential conflict of interest was there and should have been disclosed in the paper and press conference, in my opinion.

The information I would like to see on this would be Dr. Wakefield’s lab books (or notes, as the case may be). In particular, he is reported to have applied his “transfer factor” on at least one child. Were there any tests performed (say, measles titers?) that could have been used to justify development as a vaccine? For example, measles titers?

It is also worth noting that as far as I can see, all of the patents on this potential vaccine have been abandoned. In other words, Dr. Wakefield and/or the Royal Free Hospital do not appear to have continuing financial interests in the proposed measles vaccine, or the IBD/autism therapy.

As a final word–I find it interesting that in one of the patents Dr. Wakefield states that that the autism prevalence is about 1%. This from a document dated 1998, 10 years ago. So much for that epidemic, eh?

Section of GB patent 2,325,856

Section of GB patent 2,325,856

Andrew Wakefield gives NBC “talking points”

11 Sep

Dr. Wakefield “took issue” with a recent Dateline episode discussing him and his work. Thoughtful House (his clinic) has offered Dateline some talking points to, I gather, give “the full story” that Dateline supposedly missed.

Since there is next to zero chance that Dateline will act on them, I thought I would take a look at the talking points:

A. There has been extensive replication of the finding of bowel disease in children with autism (ASD) from five different countries. These findings have been published in peer-reviewed journals or presented at scientific meetings. It is therefore incorrect and misleading of Matt Lauer to have stated that every aspect of my original hypothesis has been disproved. On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. This obvious inaccuracy requires clarification by NBC.

One of my many failings is that I am a sloppy writer and, yet, I key in on imprecise language in the work of others. Case in point:

“On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. ”

“…the main point of the Lancet paper, bowel disease in autistic children…”

Very imprecise. What about bowel disease in autistic children is the finding of the Lancet article that Dr. Wakefield wants us to know? The statement is so vague that all we are left with is the fact that some autistic children have bowel disease.

This is misdirection on Dr. Wakefield’s part. It isn’t even good misdirection. The Dateline story wasn’t “the career of Andrew Wakefield, what he got right and wrong”. It was about the assertions that MMR cause autism.

Dr. Wakefield makes it appear that this statement was Matt Lauer’s. It is a fine point, but Matt Lauer didn’t state that “…every aspect of my original hypothesis has been disproved”. The statement was from the American Academy of Pediatrics, which Matt Lauer quoted with attribution.

It’s worth recalling what the Lancet paper stated. The concluding paragraph of the 1998 Lancet article was:

We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.

Had Dr. Wakefield himself distanced himself from the MMR-causation theory in the last 10 years, even a little, I’d think it reasonable for him to emphasize the the idea that he brought to light GI disturbances in autistic kids. But he hasn’t. It isn’t what the Dateline story was about.

The big question, if he thought this was important, why didn’t Dr. Wakefield himself emphasize that in the interview?

Dr. Wakefield’s second point:

B. The shortcomings and the flaws of the studies quoted by Dr. Offit, claiming to disprove an association between vaccines and autism, were not discussed in the program. In my interview with Mr. Lauer I took as an example a paper from Dr. DeStefano from the CDC claiming to exonerate MMR that actually showed that a younger age of vaccination with MMR is associated with a greater risk of autism. This study confirms the association and has been falsely portrayed as vindicating the vaccine. This should have been included in order to provide balance to the program.

Can someone tell me what DeStefano paper and what analysis he is talking about?

C. Reference was made to an autistic child in the vaccine court whose claim for MMR damage was overturned by the judge. No reference was made to the successful vaccine court case on behalf of the child Bailey Banks, coming just one week after the unsuccessful claim described by Mr. Lauer, in which the judge ruled that MMR vaccine can cause autism. Therefore, in the view of vaccine court, it is not a question of whether or not MMR can cause autism, but rather how many children are affected.

The case referred to in the Dateline episode was that of Michelle Cedillo. Her’s was the first “test case” to be heard by the Autism Omnibus Proceeding.

Her case was first heard by a “special master”, who denied compensation. The case then was appealed, and the judge didn’t “overturn” anything. The judge upheld the original decision.

The Bailey Banks case is one that gets debated a lot on the net. Rather than go into that again, let’s ask: how does this relate to Dr. Wakefield’s research? Perhaps I missed it as I did some very quick searches, but I didn’t find anything in the Bailey Banks decision that had anything to do with digestion/inflamation/enterocolitis/constipation/diarrhea… I think you get the idea–the case has nothing to do with Dr. Wakefield’s ideas about autism and the gut.

I.e. Wakefield’s point C is another diversionary tactic.

D. There was a complete absence of comment on the lack of any adequate safety studies of childhood vaccines and the vaccine schedule in particular. There was no mention of the admission by vaccine regulators that there is no data on the long-term safety of vaccines, the chronic disease burden caused by vaccines, and the likely potentially harmful interactions between various vaccines in the routine schedule.

Have you heard the phrase “diversionary tactic” too often yet? What does any of this have to do with whether Dr. Wakefield’s research? This is a favored diversion in online discussions of vaccines/autism. When people run out of real ammunition (and they do quickly), switch to trying to debate general safety of vaccines–and it almost worked. Instead of addressing some of your comments, I’ll move on to your fifth point:

E. Undue credibility was given to Brian Deer, a discredited freelancejournalist, whose false reporting has caused so much misunderstanding and damage to children through the misrepresentation of the doctors and parents who were seeking answers to the vaccine-autism question. Deer has repeatedly misled the public and the medical profession and has been unable to respond to clear evidence of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.

Nice slam, there, Dr. Wakefield. Given the sloppy nature of your previous comments, I am impressed that you pulled this together so well.

You make it seem like it is accepted that Brian Deer is “discredited”. I guess if you don’t get out of Thoughtful House or autism-parent conventions, you might think that.

The “unable to respond…” bit is pretty classic. The Press Complaints Commission isn’t hearing the complaint until after your own GMC hearing, correct? So, I guess he has been unable to respond at the PCC. But, did that really stop him from responding? I seem to recall a pretty sharp worded response that Orac hosted on Respectful Insolence.

Didn’t you, Dr. Wakefield, bring that complaint to the PCC? If so, nice job leaving out the fact. It would come across quite differently had you stated: “…and has yet been unable to respond to clear my claims of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.”

F. It was not disclosed that I have repeatedly invited Dr. Offit to take part in public debate on the safety of MMR vaccine and the false and misleading claims that he has made in the media and his book. He has refused to accept this invitation and has continued to hide from an open and honest debate.

Why would NBC waste time on this? Was it pertinent to the discussion? Answer: no.

I think they did you a favor by not mentioning it. No one looks good with the “So and So won’t debate me” argument. They just don’t. The “please debate me” argument is a staple of the crank. I doubt you wish to appear to be in that category, do you?

Academics “debate” in the literature, not on some stage. If you want to debate Dr. Offit, come up with some good research. Publish it.

Alternatively, if you want to see how a Wakefield/Offit debate comes out, read “autism’s false prophets”. If that is “hiding”, he hasn’t done a very good job of it.

G. NBC alluded briefly to the fact that Richard Horton, editor of The Lancet, was informed of my participation as a medical expert in the MMR litigation almost one year before publication of the Lancet paper in 1998. NBC failed to clarify that when Horton was challenged to respond to the fact that when he so enthusiastically denounced me and the paper in 2004 the Lancet staff was already fully aware of the facts and at that time did not consider them to be relevant. Horton refused to be interviewed by NBC and the interview segment shown was from 2004. This refusal is in sharp contrast to his willingness to denounce me in the media in 2004. NBC also failed to mention that in the light of these facts Horton has been reported to UK’s General Medical Council on an allegation of perjury.

Even if true, this is just more diversions. If you thought it important enough to fax all this information to the Lancet, why didn’t you include a conflict of interest statement in the article itself? The referees would have appreciated that, I believe. Was there any mention of potential conflicts of interest in your cover letter to The Lancet when you submitted the paper? Or in the cover letter for your acceptance? All of those were places where you should have made such statements.

H. It was unfortunate that NBC, having stated their determination to resist external pressure to distort the balance of the program, yielded to such pressure from the American Academy of Pediatrics, allowing them the final word in the program while denying representation from the National Autism Association who put forward to NBC a rational and well reasoned call for further science to resolve this very real issue.

I’m sorry, but are you seriously putting he “National Autism Association” on equal footing with the American Academy of Pediatrics? How many members does the NAA have? (a lot less than the AAP) What is the name of their journal (they don’t have one) What is the impact factor of their journal? (Pediatrics is a very well respected journal).

Given the NAA’s recent childish antics with their attempted slime job against Dr. Offit (which you, Dr. Wakefield, participated in), I think that Dateline has been proven correct for not airing their comments.

I. Dr. Offit cited a large population study of autism and MMR from Denmark in support of his claim to ‘certainty that there is no link.’ This study was so flawed that it was rejected from consideration by the gold standard scientific review by the highly influential Cochrane Collaboration. Dr. Offitt, who is not an epidemiologist, was clearly at a loss to understand the study’s fatal flaws.

“Dr. Offitt, who is not an epidemiologist…” What’s up with that comment? I’m sorry, is Dr. Wakefield an epidemiologist? Answer: no. Do you have to be an epidemiologist to understand the study or it’s strengths or flaws? No.

What fatal flaws is Dr. Wakefield referring to? The big Danish study was by Madsen, et al.. The Cochrane Review lists this study as one of the “cohort studies included in the review”. Not “rejected from consideration”.

That aside, I have the Cochrane Review “Vaccines for measles, mumps and rubella in children (Review)” open. The version I have open is noted: “This is a reprint of a Cochrane review, prepared and maintained by The Cochrane Collaboration and published in The Cochrane Library 2009, Issue 3”, so I think it is the most recent.

I guess if the Cochrane review is “highly influential” and the “gold standard” it would make sense to see what they think of the autism/MMR hypothesis, eh? The review states:

No credible evidence of an involvement of MMR with either autism or Crohn’s disease was found.

Was this because they didn’t know about Dr. Wakefield’s work? Hardly. Four of Dr. Wakefield’s papers were listed. All were listed in the “excluded studies” section.

So where does this leave us? We have, what, nine talking points which are mostly diversions or misrepresentations. Anyone wonder why I don’t think Matt Lauer will be responding to these soon?

The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

Brian Deer talks back to Andrew Wakefield

7 Jul

I was copied in to the following:

Date: Mon, 06 Jul 2009 18:12:00 +0100
To: “Joanna Bower”
From: Brian Deer
Cc: Thoughtful House

Ms Joanne Bower,
RadcliffesLeBrasseur LLP

Dear Ms Bower,

Your client, Dr Andrew Wakefield, has published, and caused to be published, on his website, thoughtfulhouse.org, and on other sites, false claims that the Press Complaints Commission has issued an “interim order” concerning my investigation into his conduct. Dr Wakefield claims that The Sunday Times has been ordered by the PCC to remove my stories about him from its website.

I understand that the PCC has written to your client to point out that these claims are untrue. In fact, all of my stories concerning him are available at the Times Online website.

thoughtfulhouse.org is unquestionably controlled by Dr Wakefield, and his publication there has caused similar untruths to be published on websites either directly controlled for his interests, such as cryshame.org, which, as you may know was set up by Mrs Isabella Thomas, the parent of two of the children anonymised in the now-infamous Lancet MMR paper, or indirectly controlled for his interests, such as ageofautism.com, operated to promote and profit from concern over children’s vaccines.

It is, of course, nothing new for Dr Wakefield to mislead the public, and especially the parents of autistic children. He has faced the longest ever proceedings before a General Medical Council fitness to practise panel, following the GMC’s reinvestigation of my journalism. In due course, I’d expect he will face a hearing of the PCC, covering much of the same ground on a significantly different evidential base.

However, you may feel it advisable to explain to your client that either he accepts the untruth of his latest claims and takes them down, or he maintains them in publication, in which case his conduct would not merely be wrong, but would be dishonest.

With best wishes,

Brian Deer

http://briandeer.com

Wakefield, distortion and the Sunday Times

3 Jul

The journalist Brian Deer has done as much as anyone to investigate the background to what Ben Goldacre describes as the MMR Hoax. In the course of his investigations he discovered undisclosed conflicts of interest by Andrew Wakefield that led to most of the authors of the original paper in the Lancet withdrawing their names and the editor publishing a retraction.

Then in February this year Deer published his latest investigation. The Lancet paper had already been dismissed as bad science. Now, if Deer’s findings were correct, it would seem that some of the data had been deliberately falsified. Wakefield responded by complaining about the article to the Press Complaints Commission. The Times stood by its story and also forwarded all details to the General Medical Council who are still investigating Wakefield over allegations of misconduct.

And that was it until this week, when Thoughtful House, the clinic that Wakefield has established in Texas, issued a press release announcing

Press Complaints Commission Orders Sunday Times to Remove MMR journalist’s Stories on Dr. Wakefield from Paper’s Web Site

It goes on to suggest that this “interim order”

appears to indicate there are questions about the accuracy of the Deer stories.

Of course it does no such thing. Thoughtful House even quote Stephen Abell of the PCC as saying that

Given the ongoing nature of the dispute the articles should be removed from the newspaper’s website until this matter has been concluded. This would not be an admission of any liability on the part of the newspaper.

The wording reveals what actually happened. The Sunday Times has not been ordered to take down the articles. The PCC decided to postpone its investigation until after the GMC reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. That tallies with the email I received from the PCC

The PCC has considered the matter initially and has elected to stay its investigation until the conclusion of the GMC inquiry. It has reached no formal decision on the substance of the complaint and there is no published ruling on our website.

The Commission has asked that the paper remove the articles temporarily until the conclusion of the PCC investigation. This is without any admission of liability on the paper’s part.

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. His friends on the web may try to pretend that this is further proof of the brave maverick doctor’s innocence in the face of a vicious campaign against him. I think they are clutching at straws.

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McCarthygeddon begins

1 Apr

Only yesterday Orac warned people of the upcoming wave of stupid about to break over us all. His only mistake in my view was confining it to the US.

Well today the wave breaks. In an interview with Time described by that publication as:

McCarthy and TIME science editor Jeffrey Kluger sparred over the causes of autism and the safety of vaccines…

Ihave to say that if this is sparring then I hope Mr Kluger decided against boxing as a sporting hobby. He all but rolls over and allows McCarthy to tickle his belly.

Theres a bellyfull of the usual facepalm inducing idiocy of course but also chilling warning about how far these antivaxxers are prepared to go:

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f—ing fault that the diseases are coming back. They’re making a product that’s s—. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

Thats right, Jenny is quite prepared to go for a Polio epidemic in the name of her unscientific cause. And who’s fault will it be? Why the people who make the vaccine that helps prevent Polio of course! And why? Because Google Phd McCarthy – the woman who used to think she was an Indigo and her son a Crystal Child in communication with an alien – believes that vaccines cause autism. Of course the lack of any reputable scientific evidence tends to indicate she might just be in error but y’know why let a little thing like accuracy get in the way of a body count?

Time out Jenny, you’re getting scarier and scarier.

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