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No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990′s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990′s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990′s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990′s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.


By Matt Carey

Gluyas v Best: autistic blogger wins defamation suit

16 Feb

Long time readers of this site may recall the name John Best. Mr. Best was a very active participant on online discussions, including this blog. Mr. Best is a staunch believer in the notion that autism is mercury poisoning and that chelation is the cure.

Over time Mr. Best’s activities have, in my opinion, increasingly focused on attacking people. For example, Phil Gluyas, an Australian autistic blogger.

Examples of blog posts Mr. Best has published include:

“Is Phil Gluyas the next Adam Lanza?”
“Phil Gluyas’ history of brutality”
“Severely deranged mental case sues me again”

For those familiar with John Best, a defamation case is not surprising. For those who are not familiar with Mr. Best, count yourself lucky.

The judge found in favor of Mr. Gluyas:

The defendant’s responses to the plaintiff’s views have gone well beyond the bounds of ordinary discussion and intellectual debate. The items posted by the defendant on the internet, concerning the plaintiff, contain an extraordinary level of invective and personal denigration, which, in some measure, have been repeated in two letters which he has forwarded to the court in response to the proceedings served on him.

and Mr. Best did not argue that his statements are true:

Taken together, the article, and the imputations to be derived from them, are highly defamatory of the plaintiff. Again, the defendant has not sought to plead and prove the truth of any of those allegations. As such, each of the allegations by him about the plaintiff are false.

This, and much more, led to Mr. Best losing the defamation suit. Instead of the originally requested $10,000, the judge awarded $50,000. With a comment that he could have gone even higher:

Taking into account the foregoing considerations, I consider that it is appropriate to award the plaintiff the sum of $50,000 damages to compensate him for the publications made by the defendant of the plaintiff in Victoria. I should add that, if I had been satisfied that the publication in Victoria of the items, of which the plaintiff complained, had been more widespread than that proven in the evidence, I would have awarded the plaintiff a considerably larger sum of damages

I fear that the ability of someone finding Mr. Best capable of paying anything, much less $50,000, is slim. Accomplishing that from Australia might be even more difficult. It is an attempt to get blood from a turnip. But, Mr. Gluyas has been awarded the right to draw blood from this turnip and that alone is a victory.

There is room to be critical of the actions of others online. John Best crossed that line. To quote the TV show “Friends”, “you’re so far past the line that you can’t even see the line! The line is a dot to you!”


By Matt Carey

Texas Observer article: Autism Inc.: The Discredited Science, Shady Treatments and Rising Profits Behind Alternative Autism Treatments

12 Feb

The Texas Observer published an article two weeks ago: Autism Inc.: The Discredited Science, Shady Treatments and Rising Profits Behind Alternative Autism Treatments. In the article, author Alex Hannaford discusses the alternative-medicine/vaccine-causation community, the therapies they promote and the lack of evidence behind them. Mr. Hannaford argues that Texas, in particular, is a center for this movement:

To compound the problem, a host of celebrities act as unpaid marketing reps for these unproven treatments, touting a pervasive (but incorrect) belief that autism is caused by childhood vaccines. This misinformation campaign has led, in the last few years, to a decline in the number of children receiving lifesaving inoculations. And Texas has become a center for alternative autism treatment and the anti-vaccine crusade.

Texas, of course, is the home of Andrew Wakefield. Mr. Wakefield, as most will recall, made his name in the autism community promoting the idea that the MMR vaccine was causal not only in some autism cases, but in giving rise to the rise in autism diagnoses observed in the U.S. and the U.K.. Mr. Wakefield’s primary paper has been retracted, his license to practice medicine pulled for unethical practices, he has resigned his position at what was then called “Thoughtful House” and multiple studies have demonstrated the lack of substance in his ideas.

Mr. Hannaford discusses much of this, including extensive quotes from Michael Fitzpatrick, a U.K. autism parent who has been a long-time critic of Andrew Wakefield’s work, James Laidler, whose work with the alternative medicine movement has been documented and, while not calling him out by name, Brian Deer‘s work in the BMJ is also cited. Mr. Hannaford also cites Wakefield supporters Jane Johnson, for whom Thoughtful House is now named (the Johnson Center), filmmaker Robert Rodriguez and, of course, Jenny McCarthy.

I am unconvinced that Texas is a particular hotbed of the alt-med/vaccine-focused autism community. But perhaps this is colored by the fact that my home town is now headquarters for TACA, AutismOne, SafeMinds and more. However, the idea that a great deal of untested and scientifically unsound “therapy” is promoted to the autism parent community is something I do not contest in the least.

Mr. Hannaford concludes his article, citing Dr. Jody Jensen, director of research of the Autism Project at the University of Texas:

“We are not doing anything special,” Jensen said. “What we are doing is providing the resources to allow these kids to be safe and to explore and experience things like every other child. That’s what’s often lacking. It’s about trying to restore some sense for them of what a typical childhood looks like.”

That is what parents of kids with autism disorders want more than anything for their children: a normal childhood. Those children just might have a fighting chance to get it—if they don’t have to undergo therapies and treatment unsupported by any scientific evidence, therapies and treatments that are time-consuming, costly, and benefits only to the people administering them.


By Matt Carey

IACC to hear about Minnesota Somali Project, Optimal Outcomes and National Children’s Study

28 Jan

The U.S. Interagency Autism Coordinating Committee (IACC) meets tomorrow (January 29th). The agenda is listed online and below.

The committee and the public will hear updates on the Minnesota Somali Autism Project–a project to explore whether there is a high prevalence of autism in the Minnesota Somali community and, if so, why. The autism prevalence in Puerto Rico ranks high for the U.S., even though the territory population is largely Hispanic and Hispanics typically have a low reported autism prevalence in the U.S.. An update on the autism prevalence in Puerto Rico will be presented. A recent study on individuals who achieved what the authors refer to as “optimal outcomes” will be discussed. Also, a study of health outcomes in children with autism and their families will be presented.

The IACC will also discuss plans for moving forward. There are many areas I would like to see some focus applied to. But three I have proposed and hope to discuss are (1) the needs specific to children and adults with autism and intellectual disability and/or communication difficulty and (2) difficulties in delivery of medical services to autistics and (3) autism and epilepsy. It is too late for comments to be included in the record for this meeting, but if you have opinions of where autism research and policy should be moving towards, send the IACC comments at IACCPublicInquiries@mail.nih.gov.

Here is tomorrow’s agenda:

10:00 a.m. Welcome, Roll Call and Approval of Minutes
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:05 Science Update
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:20 Round Robin

10:50 Centers for Disease Control and Prevention (CDC) Minnesota Somali Project Update
Amy Hewitt, Ph.D.
Director, Research and Training Center on Community Living
University of Minnesota

Mashalyn Yeargin-Allsopp, M.D.
Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

11:20 Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D.
Dean, Graduate School of Public Health
University of Puerto Rico
Member, IACC

11:35 Lunch

1:00 p.m. Oral Public Comments

1:30 Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D.
University of Connecticut
Board of Trustees Distinguished Professor Department of Psychology
Department of Pediatrics

2:00 Study of Health Outcomes in Children with Autism and their Families
Anjali Jain, M.D.
The Lewin Group

Craig Newschaffer, Ph.D.
AJ Drexel Autism Institute, Drexel University

2:30 National Children’s Study Update
Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Member, IACC

2:50 Break

3:05 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan A. Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination
Executive Secretary, IACC

•2012 Strategic Plan Update
•2013 Strategic Plan Update Process
•2012 Summary of Advances
•2011-2012 Portfolio Analysis
•Other Activities

4:15 Public Comments Discussion Period

4:45 Wrap-Up

5:00 Adjournment


By Matt Carey

Note: I serve as a public member to the IACC. However, all comments and opinions, here and elsewhere are my own.
Note: I made small edits after I published this article to include the third area I would like to see get greater focus.

Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, Slate.com author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.


By Matt Carey

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.


By Matt Carey

San Diego Family accuses caregivers of abuse

28 Dec

A family of an autistic young adult have accused caregivers of abuse after secretly recording video. In apparently pretrial hearings, the mother explains what she saw. The defense causes her of withholding information.

Preliminary hearing Thursday for 2 men accused of abusing autistic man

The video is, as you might imagine, painful to watch. So far the embed code doesn’t work, which might be for the best.

San Diego, California News Station – KFMB Channel 8 – cbs8.com


By Matt Carey

Andrew Wakefield, who sparked the unjustified MMR controversy, wins the Golden Duck Lifetime Achievement Award for his contribution to quackery.

23 Dec

Andrew Wakefield, the person most responsible for propagating the now failed notion that the MMR vaccine causes autism, has been awarded the “Golden Duck” award for 2012 by the Good Thinking Society. The announcement begins:

Good Thinking launched its annual Golden Duck award for quackery in 2012, which seeks to recognize those who have supported or practiced pseudoscience in the most ludicrous, dangerous, irrational or irresponsible manner. It was decided that the inaugural award should be for lifetime achievement in any field, and the winner is Andrew Wakefield. His nomination statement can be found here…

One of the members of Winchester Skeptics in the Pub is quoted:

We were very keen to team up with the Good Thinking Society to help choose the winner of the inaugural Golden Duck.

“All candidates fared well in the voting, but it became clear that the one thing the good thinking people of Winchester really can’t stand is a doctor who blatantly abandons and abuses the scientific method.”

Further reading at The Guardian in Struck off MMR doctor handed award for ‘lifetime achievement in quackery’


By Matt Carey

Alex Plank at CNN.com: Leave autism out of mass shootings

22 Dec

Alex Plank of wrong planet.com and Autism Rights Watch has an opinion piece at CNN.com: Leave autism out of mass shootings. The article begins:

(CNN) — After the horrific shooting in Newtown, Connecticut, a parade of self-appointed experts tried to insinuate that people with autism are prone to inexplicable acts of violence because they lack the ability for empathy and social connection. This is because the shooter, Adam Lanza, had been diagnosed with Asperger’s syndrome, a form of autism.

These speculations are needless, untrue and hurtful.

The full article, and over sixty comments so far, can be found at Leave autism out of mass shootings.

By Matt Carey

Bloomberg: Autism Cures Promised by DNA Testers Belied by Regulators

22 Dec

Bloomberg has an article out on how genetic testing is being misused by alternative medical practitioners to justify their “treatments”. The article includes names which might be familiar to those who have followed the online discussions of autism and alt-med: Amy Yasko whose RNA therapy has been widely criticized for implausibility; James Laidler, a doctor who once worked with the DAN movement; and parent-writer Kim Wombles.

The article, Autism Cures Promised by DNA Testers Belied by Regulators begins:

April Hauge, a nurse practitioner in Weimar, California, spent $500 on a genetic test for her autistic son in 2009 that led to purchasing thousands of dollars in vitamins and supplements. Impressed with the results, she’s now selling advice on the approach to others.

There’s just one problem: the DNA tests and related treatments have scant backing from science and U.S. government officials. They’re untested, unproven, and may constitute “health fraud,” doctors, regulators and concerned parents said.

Yes, practitioners order genetic testing ($495 in one example) and then sell therapies supposedly based on these results which can cost the consumer thousands of dollars over the course of “treatment”. The tests are marketing, not science.  There is no real link between the tests, the condition and the treatment.

Discussion of “Dr. Amy’s” RNA therapies go back at least six years.  The idea that ingesting small doses of RNA could treat anything fails the biological plausibility test. Per the Photon in the Darkness blog:

This would be earth-shaking news…if it were true. The sad fact is that the cells in our body have a “thing” about stray RNA. There are enzymes – RNAse’s – that chew up RNA in order to prevent unauthorized “communication” from RNA viruses. These enzymes are in every cell and every body fluid.

There is enough RNAse in a fingerprint to degrade milligrams (1000 micrograms) of RNA in a few minutes. And it’s even worse if you try to ingest the RNA. There are high concentrations of RNAse in both saliva and pancreatic digestive enzymes, so it is highly unlikely that any RNA would survive to be absorbed.

Yes, one’s body is designed to attack and destroy foreign RNA. The full discussion The Alternate RNA Universe. Another can be found at Science Blogs as Autism & RNA????.

Government agencies are aware of the claims made and the lack of a logical link between the tests and the “treatments”.

“A lot of this skims on the edge of health fraud,” said Janet Woodcock, director of the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration, referring to the use of DNA testing to recommend alternative therapies.

But for now, those offering the tests are allowed to “skim” health fraud laws. Laws which may change:

Following public hearings in July 2010, the agency developed guidance for regulating complex genetic and other tests sold by laboratories. The rules have been under review by the Obama administration since late 2011, he said. Until they are finalized, the agency is “somewhat hamstrung” in cracking down on companies that sell the tests, Gutierrez said.

The full article, Autism Cures Promised by DNA Testers Belied by Regulators is online at Blomberg.com


By Matt Carey

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