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Special fevers, mitochondria and autism

30 Dec

Thats right, its back.

Ginny Hughes, writing for the Simons Foundation writes about new methods of detecting mitochondrial damages that may lead to autism. Of course, since last year that inextricably calls to mind Hannah Poling.

Just as a quick refresh, Hannah’s case was compensated by US Gvmt who accepted that vaccines caused a fever which triggered an underlying mitochondrial dysfunction which in turn led to ‘autism like symptoms’. This is oppose to ‘vaccines caused her autism’ which you’ll find a lot of people claiming.

The crux of the matter is fever. Mitochodrial dysfunction appears to be largely triggered by fever. Without the fever there’s no dysfunction. Without the dysfunction theres no autism.

Jay Gargus, professor of physiology and biophysics at the University of California, Irvine who’s studied mitochodria for 20 years makes a very telling point in this piece:

“It terrifies me that people will be making arguments [from this work] that further enhance the panic about vaccines,” Gargus adds. “Obviously, getting a vaccination will sometimes give you a fever, but the kid’s going to get a fever sooner or later anyway. It’s not like it’s a special fever.”

All kids get ill. They’re going to get fevers. In fact a lot of the things that vaccines try and prevent cause fevers. Flu for example. What vaccines don’t do is give a child a ‘special’ autism causing fever. Thats because there _is_ no special autism causing fever and no special autism causing vaccines either.

Can a school keep a child out for not vaccinating? In the U.S. the answer is yes.

3 Dec

Only two states do not have religious exemptions to vaccination. One is West Virginia. In a recent court case, Jennifer Workman v. Mingo County Schools, the district court found in favor of a school district defending their right to exclude a child for refusing immunization.

The mother argued on constitutional grounds, citing the first, fifth and fourteenth amendments of the U.S. Constitution.

First Amendment argument

The first amendment includes freedom of religion:

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

However, previous cases have decided

… that smallpox vaccination requirement does not violate free exercise of religion, because individuals’ “freedom to act according to their religious beliefs is subject to a reasonable regulation for the benefit of society as a whole

and,

‘the constitutional guaranty of religious freedom was not intended to prohibit legislation with respect to the general public welfare’

Equal Protection: Fifth and Fourteenth Amendment Argument

The fifth amendment amendment:

No person shall be held to answer for a capital, or otherwise infamous crime, unless on presentment or indictment of a Grand Jury, except in cases arising in the land or naval forces, or in the Militia, when in actual service in time of War or public danger; nor shall any person be subject for the same offense to be twice put in jeopardy of life or limb; nor shall be compelled in any criminal case to be a witness against himself, nor be deprived of life, liberty, or property, without due process of law; nor shall private property be taken for public use, without just compensation.

Fourteenth Amendment

Section 1. All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.

Section 2. Representatives shall be apportioned among the several States according to their respective numbers, counting the whole number of persons in each State, excluding Indians not taxed. But when the right to vote at any election for the choice of electors for President and Vice President of the United States, Representatives in Congress, the Executive and Judicial officers of a State, or the members of the Legislature thereof, is denied to any of the male inhabitants of such State, being twenty-one years of age, and citizens of the United States, or in any way abridged, except for participation in rebellion, or other crime, the basis of representation therein shall be reduced in the proportion which the number of such male citizens shall bear to the whole number of male citizens twenty-one years of age in such State.

Section 3. No person shall be a Senator or Representative in Congress, or elector of President and Vice President, or hold any office, civil or military, under the United States, or under any State, who, having previously taken an oath, as a member of Congress, or as an officer of the United States, or as a member of any State legislature, or as an executive or judicial officer of any State, to support the Constitution of the United States, shall have engaged in insurrection or rebellion against the same, or given aid or comfort to the enemies thereof. But Congress may by a vote of two-thirds of each House, remove such disability.

Section 4. The validity of the public debt of the United States, authorized by law, including debts incurred for payment of pensions and bounties for services in suppressing insurrection or rebellion, shall not be questioned. But neither the United States nor any State shall assume or pay any debt or obligation incurred in aid of insurrection or rebellion against the United States, or any claim for the loss or emancipation of any slave; but all such debts, obligations and claims shall be held illegal and void.

Section 5. The Congress shall have power to enforce, by appropriate legislation, the provisions of this article.

The court found that equal protection was not violated:

But she presents no evidence of unequal treatment resulting from intentional or purposeful discrimination to support her claim; instead, all of the evidence is to the contrary.

The state health officer argued that equal protection was not violated:

I have never granted a medical exemption from the state immunization laws based on the reason being that the subject child or a relative has autism, or based on a posited connection between autism and vaccines, because neither reason is a recognized medical contraindication to these vaccines.

I am not aware of any instance in which the [West Virginia Board of Public Health] or any of its prior State Health Officers have ever granted a medical exemption to the immunization requirements appli-cable to school students based on a child or relative having autism, or based on a posited connection between autism and vaccines

The Court rejected all of Ms. Workman’s arguments.

The Court made it very clear that religious and philosophical exemptions are a a privilege, not a right. Most states do allow such exemptions, but, as the District Court noted in this decision:

Although most states have chosen to provide a religious exemption from compulsory immunization, a state need not do so.

Pass the Maalox: An AoA Thanksgiving Nightmare

30 Nov

It is no secret that I don’t appreciate the humor or the pseudoscience at the Age of Autism blog. Frankly, the pseudoscience is worse than the humor as it is so damaging to the autism communities. But, both are an embarrassment.

So, you can imagine my reaction to their recent post “Pass the Maalox: An AoA Thanksgiving Nightmare“. If you haven’t seen it, someone spent her Thanksgiving holiday with photoshop making a picture of the favorite people to hate look like they are eating a baby.

You know the reaction they wanted: outrage. You know the one they actually get: a heavy sigh. As in, “Oh, well, here we go again with AoA’s embarrassing approach to autism blogging”

Why blog it? Because it is a good introduction to what I’ve wanted to write since the recent articles at the Chicago Tribune. (if you haven’t read them, do. email them to all those well meaning people who keep sending you links to miracle cure websites. They are here and here ).

What is the message I wanted to write? Simple. To all the Age of Autism readership: people like the Tribune writers, Tom Insel, Paul Offit and others are not your enemy. These people are not standing in your way.

Your lack of good science is what is standing in your way.

Unfortunately, that isn’t likely going to change. You flat out stated that Autism is just a misdiagnosis for mercury poisoning. You were wrong, but you can’t admit it. You bet everything on the idea that mercury and/or the MMR vaccine caused an epidemic of autism. You were wrong, but you can’t admit it.

The “nightmare” you are living is of your own doing. You created a false model of autism. It isn’t the fault of the many (MANY) observers who tell you you are wrong.

Your lawyers and “scientists” put together the best story they could in the vaccine court–the Autism Omnibus Proceeding. They claimed that MMR or thimerosal caused autism, and set out to prove it. They failed.

You really should read the expert reports submitted for the Autism Omnibus Proceeding. The people who wrote these reports aren’t your enemy. The facts they report are the enemy of the house of cards you built.

Reports from the Cedillo trial

Report of Jeffrey Brent, toxicologist.

Report of Edwin Cook, psychiatrist and geneticist.

Report of Eric Fombonne, psychiatrist and epidemiologist.

Report of Robert Fujinami, immunologist.

Report of Michael Gershon, neurogastroenterologist.

Report of Diane Griffin, immunologist and virologist.

Report of Stephen Hanauer, gastroenterologist.

Report of Christine McCusker, pediatric immunologist.

Report of Brian Ward, neurovirologist

Report of Max Wiznitzer, pediatric neurologist.

Report of Andrew Zimmerman, pediatric neurologist.

Declaration of Nicolas Chadwick, Ph.D.

Critique of Dr. Hepner’s letter, by Stephen Bustin, world expert on PCR.

Affadavit by Stephen Bustin, world expert on PCR.

Affadavit of Bertus Rima, molecular biologist, measles virus expert.

Reports from the Dwyer trial
Report of Bennett Leventhal, child psychiatrist

Reports form the Hazelhurst Trial
Report of Thomas MacDonald, immunologist.

Report of Christine McCusker, pediatric immunologist.

Report of Robert Rust, Pediatric Neurologist.

King Hearings

Report of Jeffrey Brent, toxicologist.

Report of Manuel Cassanova, psychiatrist.

Report of Steven Goodman, epidemiologist.

Report of Jeffrey Johnson, toxicologist, expert on oxidative stress.

Report of Dean Jones, professor of medicine.

Report of Thomas Kemper, neurologist.

Report of Catherine Lord, psychologist, world expert on autism.

Report of Richard Mailman, professor of psychiatry, pharmacology and neurology.

Report of L. Jackson Roberts, professor of pharmacology and medicine.

Report of Patricia Rodier, expert in autism and mercury toxicology.

Report of Sir Michael Rutter, professor of developmental psychopatholgoy, world expert on autism.

Letter from Carlos Pardo-Villimazar to Thomas Kemper


Another expert report by Eric Fombonne


Expert report of Robert Rust


Another report of Robert Rust

Supplemental report of Jeffrey Brent


Expert report of Michael McCabe

Expert report of Bertus Rima

Supplemental report of Brian Ward

Supplemental report of Max Wiznitzer

Letter from Michael Oldstone to Brian Ward

Another supplemental report by Max Wiznitzer

News Reports demonstrating misuse and misunderstanding of autism science

Autism treatment: Science hijacked to support alternative therapies
By Trine Tsouderos and Patricia Callahan, Chicago Tribune

Researchers warn against misusing report

Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Experimental treatments

Autism treatment: Success stories more persuasive to some than hard data
By Trine Tsouderos and Patricia Callahan ,Tribune reporters


Questionable treatments for children with autism


Autism doctor: Troubling record trails doctor treating autism
Second of two parts By Patricia Callahan and Trine Tsouderos ,Tribune reporters

Miracle drug’ called junk science
By Trine Tsouderos ,Tribune reporter

An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All
Amy Wallace, Wired Magazine

You folks at the Age of Autism would like to pretend that there are a few people standing in the way of the “obvious” conclusions that mercury and the MMR vaccine caused an autism “epidemic” and that alternative medicine offers a cure.

You are wrong on every count. It isn’t a few people. It is almost everyone who looks at the “data” you have to offer. It isn’t just epidemiology, either. The mechanisms you present are just not supported by any real science. Your problem isn’t that there are people in your way. The problem is that your “data” is junk. Sorry, there is no nicer way to put it. There is no hard evidence for an epidemic. If there is a real increase in real autism incidence, you guys are actually standing in the way of finding the real causes. As to the “cure” offered by alternative medicine, that’s my thanksgiving nightmare: the idea that some “alternative” doctor from the Age of Autism stable is treating my child with poorly conceived “therapies” based on the same junk science you folks promote.

That sends shivers up this autism parent’s spine.

Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

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.

Political abuse and the abuse of autism

5 Nov

“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.

Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.

This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian

Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.

Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.

He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”

This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint

Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.

Today’s Times ran with the story of Monsieur Lellouche’s apology.

France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.

Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.

He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.

However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear here and, more recently, here. But I agree with her that Packing is barbaric.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.

French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.

Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”

While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.

This post is also available on Action for Autism.

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Number of cases before the vaccine court drop off dramatically

28 Oct

We often hear about how there are about 5000 cases before the vaccine court claiming autism as a vaccine injury. What we don’t hear is that almost all of those cases were filed years ago.

Take a look at the data on the number of cases filed per year. Or, take a look at this graph I made of the data (click to enlarge):

Cases submitted to the vaccine court by year

Cases submitted to the vaccine court by year

Red shows autism cases filed. Black shows non-autism cases.

Not much needed in the way of discussion. Autism cases peaked in 2003, six years ago. Autism cases are now at about the same level or less than non-autism cases. It has been low and flat since about 2006.

I know I’ve done a lot of vaccine-oriented posts lately. This is a good indication that I need to spend time on other subjects.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

24 Sep

Autism, regression, mitochondrial disease and vaccines. With a combination like that, this paper is likely going to be very important.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

Here is the abstract:

Autistic spectrum disorders encompass etiologically heterogeneous persons, with many genetic causes. A subgroup of these individuals has mitochondrial disease. Because a variety of metabolic disorders, including mitochondrial disease show regression with fever, a retrospective chart review was performed and identified 28 patients who met diagnostic criteria for autistic spectrum disorders and mitochondrial disease. Autistic regression occurred in 60.7% (17 of 28), a statistically significant increase over the general autistic spectrum disorder population (P < .0001). Of the 17 individuals with autistic regression, 70.6% (12 of 17) regressed with fever and 29.4% (5 of 17) regressed without identifiable linkage to fever or vaccinations. None showed regression with vaccination unless a febrile response was present. Although the study is small, a subgroup of patients with mitochondrial disease may be at risk of autistic regression with fever. Although recommended vaccinations schedules are appropriate in mitochondrial disease, fever management appears important for decreasing regression risk.

The authors note neurologic regression in general (not just autistic regression) is observed with patients who have metabolic diseases:

Patients with mitochondrial diseases, like many patients with metabolic diseases, are at increased risk of neurologic regression in conjunction with stressors such as fever, infection, and dehydration.

They studied 28 patients who met DSM-IV criteria for autism and diagnostic criteria for mitochondrial disease.

They define regression and whether it is related to fever thusly:

Autistic regression was defined as loss of developmental skills that included speech, receptive skills, eye contact, and social interests in individuals ❤ years of age. A relationship between fever and autistic regression is defined as regression beginning within 2 weeks of a febrile episode without the suggestion of infectious meningitis or encephalitis.

One comment–the definition of regression is somewhat vague to me. What is also critically important in this discussion is whether there were any signs of autism before the regression. Or, as some may put it, is this regression into autism or autistics undergoing regression? Is there a mix of pathways?

They state that 17 of the 28 patients studied underwent an autistic regression. This is higher than the roughly 25% value for autistic regression they assumed for the general autism population, and statistically significant.

In other words, they are saying that autistic regression may occur more often with kids with mitochondrial diseases.

They note that some of the fevers could be linked to vaccination:

The 17 individuals with autistic regression could be divided into 2 groups, those who regressed with fever (70.6%, 12 of 17) and those who regressed without identifiable linkage to fever or vaccinations (29.4%, 5 of 17).

And,

No individual showed regression with vaccination unless a febrile response was present.

They discuss the concerns with vaccination in the conclusion, noting that vaccination is still recommended for children with mitochondrial diseases. My experience in discussing this issue with mitochondrial disease experts is that they find vaccination to be extremely important. If, for some reason, they decide to not vaccinate a child with mitochondrial disease, they insure that all family members are vaccinated to protect the child.

Children with identified mitochondrial diseases are routinely managed carefully by their physicians with aggressive fever control and hydration. In this context, vaccination of children with mitochondrial diseases is recommended. In our experience, the vast majority of patients with mitochondrial diseases receives a full vaccination schedule according to American Academy of Pediatric guidelines without consequences, particularly when physicians are sensitive to fever control and hydration. In our patients with mitochondrial disease and autistic spectrum disorders, the vaccines did not appear related to the neurologic regression.

I will note again that I feel autistic regression as defined is too vague. Were the patients on the spectrum before the regression? Were they typically developing before the regression?

At least two children were noted to have multiple regressions (a sibling pair). That indicates that at least in some cases, regressions occurred in people already autistic. There just isn’t other information on this.

Another area I would like to see discussed further is on siblings:

Affected siblings were identified in 35.7% (10 of 28).

Affected how? Mitochondrial disease. But, are they also autistic? It would seem not since they included one sibling pair.

This is a big question to me. While the spotlight has been shown on the possibility of mitochondrial disorders being linked to autistic regression, the more general question is more important: could fevers induced by vaccination result in any regression (autistic or otherwise) in people with mitochondrial disorders.

Another question in my mind in this study. Are there patients who underwent regression from non-autistic to autistic) after age 3? According to the Johns Hopkins group, this doesn’t happen. According to them, there is an age window where the regressions could result in autism. This is a very important question in how these patients might fit in to the broader spectrum of autism.

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.

Insurance bureaucracies slow to catch up on new AAC devices

15 Sep

For Speech-Impaired, Insurance Fights Remedy. So goes the title of a New York Times story about people trying to get around some antiquated rules on speech devices.

If you are like me, when it comes to speech (or augmentative and alternative communication) devices, the image that comes to mind is often a big, dedicated device like a dynavox.

Times have changed, even for dynavox, who has a smaller device that includes wireless web browsing.

Even more, text-to-speech and icon based programs are available for laptops and, get this, the iPhone/iPod-touch.

Imagine a device that not only helps with communication, but can be surf the web and play games and videos and music and do even more. Imagine a device that has a “cool factor”. Imagine a device that fits in your pocket.

Can you imagine it? Well, it seems insurance companies can’t.

You see, if it can do something in addition to speech, it isn’t covered. If it hasn’t been approved yet, it isn’t isn’t covered. And, let’s face it, insurance companies aren’t that fast at approving new technology.

The funny thing is, this could save them money.

“We would not cover the iPhones and netbooks with speech-generating software capabilities because they are useful in the absence of an illness or injury,” said Peter Ashkenaz, a spokesman for the federal Centers for Medicare and Medicaid Services. Private insurers tend to follow the government’s lead in matters of coverage. Two years ago, iPhones and netbooks barely existed, so it may not be surprising that the industry has yet to consider their role as medical devices.

A dynavox system costs about $8,000. An system based on an iPod touch can be under $400 plus external speakers (I don’t think the speakers on the iPod touch would be loud enough if there is any background noise. But I could be wrong.)

One software product is Proloquo2Go, which works on the iPhone and iPod . I first heard about Proloquo2Go from a blog post on change.org by Dora Raymaker.

But, remember, insurance companies aren’t paying for the iPod becuase it isn’t tested yet. That and they don’t like devices that do more than one thing. They dislike devices that do more than one task so much that they pay a lot extra ($8,000 vs. $500) and, get this, they turn off the extra features.

DynaVox, a leading maker of devices for the speech-impaired, has computers that start at $8,000 and run Windows, just like 90 percent of all PCs. To meet insurance rules, DynaVox disables the general computing tools. After the insurer pays, customers can pay $50 to DynaVox to reactivate the full functions.

This strikes me as bureaucracy getting in the way. Other devices, which would save the insurance company money, should be easy to test and get approved.

I just don’t get what the hold up is.

Thanks to a very cool reader who pointed me at this story.

Addendum:

This story is being picked up by a few other bloggers as well:

Disability Scoop, Insurers Balk At Modern, Low-Cost Assistive Technology

I4U, Medicare Denies Useful $150 App in Lieu of $8000 Machine

gizmodo.com, Medicare Would Rather Buy $8000 Computer than $150 iPhone App.

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