I Speak of Dreams

Three chances to hear more from vaccine advocate Paul Offit MD

update:  I've added the clip from the show

 I am an admirer of Dr. Offit's for a number of reasons -- not the least of which is his tireless work to develop a vaccine for a disease that kills, rotavirus.

He recently released a book Deadly Choices: How the Anti-Vaccine Movement Threatens Us All

He will be on the Colbert Report tonight (1/31/11) (Facebook) (show website)

 

The Colbert Report	Mon - Thurs 11:30pm / 10:30c
Paul Offit
www.colbertnation.com
Colbert Report Full Episodes Political Humor & Satire Blog</a> Video Archive

Today, The Thinking Person's Guide to Autism published an interview with him

We talked with Dr. Offit about realities of vaccine-preventable diseases, the importance of herd immunity, just how contagious measles really are, why you shouldn't have chickenpox parties, why neither he nor Jenny McCarthy are autism experts, why it is unethical to run studies featuring vaccinated versus unvaccinated children, and just how extensively the autism-vaccine hypothesis has been debunked.

David Robert Hogg at My Little Nomads  had an interview with Offit.  Mr Hogg asked a really good question

Do you see any silver lining to the anti-vaccine movement? The possibility that this has led to ultra-vigilant safety measures, that when considered in the long term may prove beneficial to public health and public confidence in vaccines?

Some Things On My Mind

A previous version

 

RageBoy--who often scares me--this time has a few words and two images that are astonishing in themselves, and also....resonate with the stuff I have been mumbling about, here and elsewhere. So go look at the images --especially the glacier image--and come back.

Shoah 2011

repeated with updates from previous posts

Tomorrow is Yom Ha'Shoah, the day of remembering the Holocaust.

The University of Southern California has a Shoah Foundation Institute.  You could honor the day by making a donation, or by exploring the resources there.

I will honor the day by re-reading the The Diary of Anne Frank,  Why that?   It was by reading the book that I learned that the Jews were annihilated in Europe.    I know I was younger than she was when she wrote the book, so it was before 1964.  It may have been assigned to my older sister, or one of my older cousins.

The Daily Mail (UK) continuing sorry contribution to fear, uncertainty, doubt, and vaccine fears

The article that won't die: Sally Beck's "Scientists fear MMR link to autism," published in the Daily Mail on May 28, 2006.

That's right, 2006. 

It gets worse.  Two of the complainants in the Omnibus Autism Proceeding, the Cedillos and Hazelhursts, relied upon the unpublished Walker et al. research.  Both the Special Masters in the hearings, and the presiding judge in the following Hazelhurst appeal,  dismissed the evidentiary value of the Walker et al. study  (exerpts from the hearings and the appeal are below).  In other words, the Walker data have been examined and found unconvincing, because it was scientifically suspect. 

The Walker study (never published) in no way validates Wakefield's fraud.  The MMR vaccine still does not cause autism.

Link to the Daily Mail article.  http://www.dailymail.co.uk/news/article-388051/Scientists-fear-MMR-link-autism.html

Thanks to the Daily Mail's perverse habit of not date-stamping articles and scrubbing comments, plus having a date-stamp above the header, a casual reader may not realize that the article is 4 and a half years old. 

As always, click to embiggen. Below: what appears at the Daily Mail's website, captured 1/26/11

The quest for the best microwaveable multigrain hot cereal

JumperGirl and I share a dislike for cold cereal, prefering hot, and even better, multigrain (although I have a tremendous childhood fondness for MaltoMeal & corn-meal mush).

The BetterOats Raw Bare is pretty good, and danged handy, coming as it does in a pouch that is also a measuring cup.  The flavored versions (chai and cinnamon plum spiced) are way too sweet.

But the hands-down winner so far is Bob's Red Mill 5 rolled whole grain hot cereal.

Farewell, noble horse

   Riding Denali in a dressage test, several years ago.

His time was up, was all.  He had developed a neurological condition that made it difficult for him to walk.

One of the things about owning animals is that most -- dogs, cats, horses and all -- don't live as long as people, and sometimes responsible people have to make the decision to end the animal's life.

He was still bright and interacting while we hung out with him this morning, feeding him carrots and peppermint treats.  The vet came, and fed him more peppermint treats as she administered an anti-anxiety drug, and then an overdose of sedatives.  He was still mouthing peppermints as he folded up and went on to the next thing, whatever that might be.

Euthanizing him was the right decision. Horses don't fear death.  I don't think they conceptualize death.  But they do fear predators, and it must be awful to be a horse, whose only real defense is to run away, and be unable to run.  I don't think he had fearful moments, this last week, but it was only a matter of time.

I'm really sad.  Not only was he a noble horse, he was part of a number of stories, all completed now.

 

Lessons for reporters from Brian Deer's investigation of Wakefield's fraud

Updated see below

The California Endowment has a new enterprise, Reporting on Health,  which includes journalism fellowships and blogs.

One of the fellows is William Heisel; his blog is Antidote: New Ways to Investigate Untold Health Stories. 

His advice for reporters, drawn from the lessons of  the Wakefield fraud, in seven parts:

Wakefield's Wake, Part 1: Media should help undo damage from vaccine-autism hoax a description of the sources Deer used for his BMJ pieces:

These documents and the rest used by Deer are great guideposts for health writers, bloggers and investigators hoping to fix what Wakefield and his colleagues have broken.

Wakefield's Wake Part 2: Passionate parents of autistic children can be tricky sources.

This should serve as a lesson to health writers everywhere never to assume that the research subjects involved in a study actually saw the outcome of the study. Those subjects, should you be able to track them down, could provide the necessary evidence for verifying – or disproving – the study’s findings or probing flaws in the study’s design.

Wakefield’s Wake, Part 3: Trust parents of autistic kids, but verify stories with health records note: this is sound advice for all unusual health claims, not just the "something caused autism" story.  Two things to keep in mind: "correlation does not equal causation" and "anecdotes are not data, even in the plural".

As research has shown, self-reported health information is often flawed. Most parents — including McCarthy — aren’t trying to deceive anyone. When talking to a reporter, though, they may not be able to, on command, provide the clearest picture of the dates, symptoms, test results and other medical facts involving their child.

Wakefield's Wake, Part 4: Overcome confidentiality rules used to hide shaky science

....reporters need to push past glib suggestions that parents are wrong to be talking about these issues or that reporters are wrong for talking with the parents.

One of the ways I have pushed past is by asking people if I can talk with their doctors directly and providing them with a release form to sign. I created a short form years ago based on a standard form that has been used by hospitals and physicians to allow patients to waive HIPAA protections. The terminology is important. You want to make it clear to patients and their parents that they are protected by HIPAA from having their private medical information disclosed and that by signing this form they are waiving those protections for the purposes of providing you information for a story.

Wakefield’s Wake, Part 5: Treat advocacy groups with a healthy dose of skepticism

So what’s a health writer who wants some good contextual quotes to do?

First, stop dialing groups for a quote just because their name sounds on target. Placing “American” in front of something doesn’t make it a truly national or nationally representative group. Including “autism” in a name doesn’t mean that the group is involved in serious work to find cures and treatments for autism disorders.

Second, treat these advocates the way you would any other source. I mentioned this before with parents, and it is worth repeating. Don’t let advocates make bold claims without proof. Robert Goldberg, author of Tabloid Medicine, posted a great video about what reporters should have said when interviewing Jenny McCarthy, who, as everyone knows, has her own advocacy organization: Generation Rescue.

Third, find out who is paying the bills. If they are registered as a nonprofit, they have to file a Form 990 with the IRS, and you can ask them for a copy, ask the IRS for a copy or look it up on Guidestar. If they are not registered as a nonprofit, that’s odd and should make you ask even more questions.

I would add: this advice holds true not just for autism, but any "miracle cure" for conditions that are defined qualitatively -- like learning disabilities.

Update:

Wakefield's Wake Part 6: Don't call it a witch hunt: Scientists who perpetrated autism-vaccine scare should be called out

...A witch hunt, of course, implies a band of crazed bigots and fear-mongers falsely accusing someone of a socially unacceptable act. Charges are trumped up. A trial is hastily put together. Witnesses lie. And the witch is burned at the stake.

Even as metaphor, this doesn’t work in the Wakefield case or others like it. Government investigators and journalists like Deer didn’t try to pin some false crime on Wakefield. As Deer puts it:  “The regulator’s main focus was whether the research was ethical. Mine was whether it was true.”

Take-away lessons for journalists

1. Follow up by writing about scientists who have cited work by discredited scientists
2. Question out-of-nowhere advances in science and medicine
3. Follow up by writing about who decided to fund, support and publish the discredited research.  Hold the decision-makers accountable.

Wakefield's Wake, Part 7: Blowback can be fierce and frightening for autism-vaccine stories

It underscored for me that journalists who take on vaccine conspiracy theories and other controversial topics need to prepare themselves and their editors for blowback.

Parents who are advocating for their children are fighters, as they should be. But they can start to develop an us-versus-them mentality.

 

Some things I learned from my grandson

I have 3.9 step-grandchildren -- DancingGirl1 (now aged 5), ScholarBoy1 (2.5 years) ScholarBoy2, (0.91 years) and the soon-to-be-born DancingGirl2.

'Totherday I was playing with ScholarBoy2, and learned some things. 

The Persistence of Anti-Vaccination Beliefs

  
This morning's question from Kim Stagliano, who runs the Age of Autism twitter account (http://twitter.com/#!/AgeofAutism), and responses from her followers, prompted me to think more deeply about two recently published books, Paul Offit MD's Deadly Choices and Seth Mnookin's The Panic Virus.

 

 

From Rahul Parikh's essay 2008 essay on the consequences of vaccine refusal.

The parents who chose not to vaccinate their kids did so out of their esoteric system of beliefs.  But those same parents need to consider, as Tom Friedman points out, that it’s a flat, hot and crowded world.  A century ago, an outbreak of pertussis, may not have spread beyond the next town or village.  But now, all those parents need to do is pick up their unvaccinated, exposed and coughing child from school, and drive them down the 680 to their neighborhood Gymboree, where they’ll be coughing on kids from a different part of town.  Just like that, the scourge spreads.

 

Parents who choose no to vaccinate their kids, or anti-vaccine folks darn well better think about that.  And if they choose to act selfishly despite it, they should be ready to accept the ethical and social consequences of putting all of us at risk.

Also this morning, The Thinking Person's Guide to Autism interviewed Seth Mnookin

Salon retracts factually incorrect, anti-vaccination polemic by Robert F. Kennedy jr.

See foot of article for update

Correcting our record - Inside Salon - Salon.com. In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was "convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real."

The piece was co-published with Rolling Stone magazine -- they fact-checked it and published it in print; we posted it online. In the days after running "Deadly Immunity," we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy's exposé. At the time, we felt that correcting the piece -- and keeping it on the site, in the spirit of transparency -- was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book "The Panic Virus," further eroded any faith we had in the story's value. We've grown to believe the best reader service is to delete the piece entirely.

Rolling Stone didn't have the cojones to make a public retraction -- they just disappeared the article, I don't know when.

Thanks to the editorial staff at Salon for standing up for evidence-based public discourse.

New at Autism News Beat: Salon Retracts 2005 RFKjr article. The comment I left there:

1. Let’s give some credit to Seth Mnookin & The Panic Virus; chapter 16 (“A Conspiracy of Dunces”) details how Kennedy cherry-picked quotes and distorted meanings, and kept repeating falsehoods even after several rounds of corrections by both Rolling Stone and Salon.com.
2. Kudos to Salon.com for being forthright and leaving the link to the article up, now pointing to reliable information about autism; a sneer in the direction of Rolling Stone, which just silently scrubbed the article out of existence: http://www.rollingstone.com/politics/story/7395411/deadly_immunity   Wasn’t there a word for that when the Kremlin did so by doctoring photographs?
3. ”Deadly Immunity” is still up at: Alex Jone’s Infowars site (not surprising) http://www.infowars.com/vaccinations-deadly-immunity/ ; RFKjr’s site (also not surprising) http://www.robertfkennedyjr.com/articles.html# ; and Jay Gordon MD’s site http://drjaygordon.com/vaccinations/deadly-immunity.html and several hundred other sites.   Wonder how long it will take “Dr. Jay” to remove the paper?