Left Brain Right Brain

The journal Nature has a special focus issue this week on autism. They introduce the issue in: Special issue on neuroscience: The autism enigma with the subtitle “Diagnoses and research funding are rising, but much about autism remains a puzzle. Nature seeks some truths.”

Articles in the issue include:

The mind’s tangled web (“Efforts to elucidate how genes and the environment shape the development of autism, although making progress, still fall far short of their goal.”)

The prevalence puzzle: Autism counts (“Shifting diagnoses and heightened awareness explain only part of the apparent rise in autism. Scientists are struggling to explain the rest.”)

Scientists and autism: When geeks meet (“Psychologist Simon Baron-Cohen thinks scientists and engineers could be more likely to have a child with autism. Some researchers say the proof isn’t there.”)

Changing perceptions: The power of autism (“Recent data — and personal experience — suggest that autism can be an advantage in some spheres, including science, says Laurent Mottron.”)

and:

Autism’s fight for facts: A voice for science (“Convinced by the evidence that vaccines do not cause autism, Alison Singer started a research foundation that pledges to put science first.”)

With a link to Nature’s autism page: www.nature.com/autism.

The National Vaccine Information Center (NVIC) is an organization which has been highly critical of vaccines. They have helped to keep the “vaccine induced autism epidemic” alive. They have not only supported, but awarded Andrew Wakefield, the doctor whose misconduct in his research lost him his license to practise medicine. With no sense of irony, NVIC presented Mr. Wakefield with the “Humanitarian Award” for “his compassion, brave spirit and uncompromising commitment to improving the health of children and the biological integrity of future generations.” One board member for NVIC wrote John Stossel with her opinion: “Vaccines are a holocaust of poison on our children’s brains and immune systems.”

Recently, NVIC has placed advertisements in the in-flight entertainment for Delta Air Lines for the holiday season. By NVIC standards, their ad is rather mild. The vaccine fear angle is not prominent, with the focus more on downplaying the need for the flu vaccine.

The American Academy of Pediatrics has sent a letter to the CEO of Delta asking them to reconsider the decision to accept the NVIC advertisement:

November 4, 2011

Richard Anderson
Chief Executive Officer
Delta Air Lines

Dear Mr. Anderson,

The American Academy of Pediatrics (AAP) objects to the paid advertisement/public service message from the National Vaccine Information Center (NVIC) being shown throughout the month of November on Delta’s in-flight programming. The ad urges viewers to become informed about influenza and how to stay well during the flu season without resorting to the influenza vaccine.

While hand washing and covering sneezes are parts of a larger strategy to prevent the spread of influenza, influenza vaccine continues to be the best way to protect against the disease. It is especially important in enclosed settings where disease droplets can easily spread to passengers sitting in close quarters, especially infants and children and those with special health care needs.

The AAP and many other child health organizations have worked hard to protect children and their families from unfounded and unscientific misinformation regarding vaccine safety. The influenza vaccine is safe and effective.

By providing advertising space to an organization like the NVIC, which opposes the nation’s recommended childhood immunization schedule and promotes the unscientific practice of delaying or skipping vaccines altogether, you are putting the lives of children at risk, leaving them unprotected from vaccine-preventable diseases. Diseases like influenza can have serious consequences. From September 2010 to August 2011, 115 children died from influenza disease, most of whom were unvaccinated.

The AAP’s 60,000 member pediatricians urge you to remove these harmful messages, which fail to inform the public about the safety and efficacy of influenza vaccine. Please do your part to help reassure parents that vaccinating their children is the best way to protect them from influenza disease, particularly during this busy travel season.

In a great response to a bad event last year, Corina Becker sparked “Autistics Speaking Day”. From her post: “On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face. ”

Read the full post, and the many that followed it, for a discussion of why “Communication Shutdown” was such a bad idea. I’m glad that a year later “communication shutdown” is gone, but autistics speaking day is not.

From the website:

To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast their voices, and to help the messages of Autistic people and non-Austistic allies reach the ears of as many people as possible.

From the FAQ:

Q. What do we do on ASDay?
A. The plan is that on November 1st social networking sites like Facebook, Tumblr, Twitter, as well as YouTube and blogging sites will see a huge increase in the posts of autistic people. We will post links to as many of these as we can to share the works of the autistic people. Our hope is that this will help promote autism awareness and autism acceptance. If you are a blogger or own a website, you can write a post on or around November 1st for Autistics Speaking Day and we will share the posts through this blog, Twitter, and Facebook. Everyone is free to participate in ASDay however they want. Some will just read through the posts, some will help to distribute the posts, and some will actively write them.

The internet is rife with bad information, some of it dangerous. This is not news. Unfortunately autism is a hotbed of bad and sometimes dangerous information. Unfortunately, in an attempt to revive the XMRV/autism link, Kent Heckenlively of the Age of Autism blog is creating a new, dangerous conclusion: perhaps Rituximab (or a similar drug) could be an autism therapy.

In XMRV (HGRV) is Not Dead – The Rituximab Story Mr. Heckenlively writes once again about XMRV.

Promoting XMRV as causative in autism is nothing new for Mr. Heckenlively. Continuing this promotion, even in the light of serious negative results (here, here, here, here) is not new. The promotion of medical treatments which are based on a misunderstanding of autism is nothing new to the Age of Autism blog. So why write about this instance? Rituximab is really serious medicine.

Serious adverse events, which can cause death and disability, include:[22]

Severe infusion reactions
Cardiac arrest
Tumor lysis syndrome, causing acute renal failure
Infections
Hepatitis B reactivation
Other viral infections
Progressive multifocal leukoencephalopathy (PML)
Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
Pulmonary toxicity[23]

Here’s the “logic” behind Mr. Heckinlively’s article: XMRV has been linked to autism (he ignores the more recent data against this idea). XMRV has been linked to chronic fatigue syndrome (once again, he ignores the data which goes against they hypothesis). Therefore, autism and chronic fatigue syndrome must share some sort of link. In this case, a small study has been published which claims that Rituximab helped a number of patients with chronic fatigue syndrome.

One of the many glaring problems in this train of logic is the fact that the researchers in this particular study looked for XMRV in their subjects. And didn’t find it. So, the link between this group of CFS patients and autism, tenuous as it was from the start, is basically absent. This does not deter Mr. Heckenlively:

The question of why rituximab’s depletion of B cells helps those with chronic fatigue syndrome/ME remains unexplained. The researchers specifically noted they had searched for XMRV and not found evidence of its presence, but that touches on the greater issue of whether the currently validated test for XMRV is accurate.

Yes. Since there is no logical connection between this study and autism, we should question whether the test for XMRV is accurate. Are there inaccurate XMRV results? You bet. That’s what got a lot of the CFG (and autism) must be linked to XMRV story going.

Prometheus discusses this in Don’t use GMO’s to Treat Autism!! (at least not this one). Including a link to the study Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study which is at the heart of Mr. Heckenlively’s story.

Let’s remind ourselves of that story: XMRV (HGRV) is Not Dead – The Rituximab Story . Yes, he’s trying to use the Rituximab study to promote the link between XMRV and autism. Even though the patients in the Rituximab study didn’t have XMRV! Mr. Heckenlively takes a stance that is quite familiar: the “I’m just posing a question and promoting dialogue” idea:

I can’t say I’m a fan of rituximab. It’s a drug that comes with a black box warning, meaning it can cause death. But what has been revealed about the etiology of chronic fatigue syndrome/ME, and possibly autism, may be truly remarkable. Other, less toxic medications which supposedly do much of the same thing are on their way to market. I’m not suggesting any solutions in this article.

This is the same tactic used, over and over, by David Kirby (author of Evidence of Harm and formerly a frequent contributor to the Huffington Post) in promoting vaccines as causing autism, mercury as causing autism and chelation as a cure. He was “just promoting dialogue too”. Thankfully Rituximab isn’t available without prescription like many chelators.

In case you think Mr. Heckenlively’s disclaimer is enough to distance himself from promotion of this as a potential therapy, here are a couple of excerpts from the comments to that piece:

It makes sense that Rituximab would have dramatic results in autism. But there might be much less risky ways. Also, how about long term results? Maybe what is the root cause of the B cell dysfunction is still there after a Rituximab treatment and the whole cycle will start again as the B cell population builds up again.

and

Great article, thanks. I agree with your conclusion, and some of the comments below. While Rituximab is a very expensive and a very powerful drug with black box warning – in other words not something to be considered lightly (unless maybe the person is severely ill and all other options have been exhausted), it is GREAT to have some solid pointers at last, a mechanism to target with softer, safer means.

No. Seriously, no. It doesn’t make sense that Rituximab would have results in autism, dramatic or otherwise.

With the passing of the Combating Autism Reauthorization Act (CARA), the IACC will continue to meet and plan autism research strategy. The terms of the original members of the IACC ended with the sunset of the original Cobating Autism Act (CAA). Those members can serve again, but the nomination process is now open for the next installment of the IACC:

IACC Call for Nominations Announced – October 28, 2011

With the enactment of the Combating Autism Reauthorization Act of 2011, the Department of Health and Human Services (HHS) has been authorized to continue to support the Interagency Autism Coordinating Committee (IACC) until September 30, 2014 and is seeking nominations for public membership on this committee. The Secretary of Health and Human Services, who will make the final selections and appointments of public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, but current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted.

The call for nominations will be open from October 28, 2011 – November 30, 2011. Please see the announcement below for detailed information regarding the requirements and how to submit a nomination.

2011 IACC Call for Nominations Announcement
IACC October 28, 2011 News Update: Interagency Autism Coordinating Committee to Continue into 2014; HHS Seeks Nominations for Public Membership