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An Outbreak of Autism, or a Statistical Fluke?
By DONALD G. McNEIL Jr., The New York Times, March 17, 2009

MINNEAPOLIS — Ayub Abdi is a cute 5-year-old with a smile that might be called shy if not for the empty look in his eyes. He does not speak. When he was 2, he could say “Dad,” “Mom,” “give me” and “need water,” but he has lost all that.

He does scream and spit, and he moans a loud “Unnnnh! Unnnnh!” when he is unhappy. At night he pounds the walls for hours, which led to his family’s eviction from their last apartment.

As he is strapped into his seat in the bus that takes him to special education class, it is hard not to notice that there is only one other child inside, and he too is a son of Somali immigrants.

“I know 10 guys whose kids have autism,” said Ayub’s father, Abdirisak Jama, a 39-year-old security guard. “They are all looking for help.”

Autism is terrifying the community of Somali immigrants in Minneapolis, and some pediatricians and educators have joined parents in raising the alarm. But public health experts say it is hard to tell whether the apparent surge of cases is an actual outbreak, with a cause that can be addressed, or just a statistical fluke.



In an effort to find out, the Minnesota Department of Health is conducting an epidemiological survey in consultation with the federal Centers for Disease Control and Prevention. This kind of conundrum, experts say, arises whenever there is a cluster of noncontagious illnesses.

While there is little research on autism clusters, reports of cancer clusters are so common that health agencies across the country respond to more than 1,000 inquiries about suspected ones each year. A vast majority prove unfounded, and even when one is confirmed, the cause is seldom ascertained, as it was for Kaposi’s sarcoma among gay men and mesothelioma among asbestos workers.

It is “extraordinarily difficult” to separate chance clusters from those in which everyone was exposed to the same carcinogen, said Dr. Michael J. Thun, the American Cancer Society’s vice president for epidemiology.

Since the cause of autism is unknown, the authorities in Minnesota say it is hard to know even what to investigate.

“There are obviously some real concerns here, but we don’t want to make a cursory judgment,” said Buddy Ferguson, a health department spokesman. Even counting autism cases is difficult because the diagnoses are first made by the schools, not doctors, and population estimates for Somalis vary widely. Results are expected late this month.

Even if the department confirms that a cluster exists, it will not answer the question why. Still, Dr. Thun said a possible focus in one ethnic group “increases my sense that investigating it is essential.” The next step, he added, would be to look at Somalis in other cities.

A small recent study of refugees in schools in Stockholm found that Somalis were in classes for autistic children at three times the normal rate.

Calls to representatives of Somali groups in Seattle and San Diego found that they were aware of the fear in Minneapolis but unsure about their own rates. Doctors familiar with the Somali communities in Boston and Lewiston, Me., had heard of no surges there.

“It’s a concern here, but we haven’t done anything to look specifically,” said Ahmed Salim of Somali Family Services in San Diego.

Shamso Yusuf of the Refugee Women’s Alliance in Seattle said tearfully that her own daughter had been given a diagnosis of autism, “and I see a lot of parents who have 5-year-olds who cannot speak.” But no Seattle study has been done, she said.

Somalis began arriving in Minneapolis in 1993, driven out by civil war; now their population in Minnesota is estimated at 30,000 to 60,000. The city is welcoming and social benefits are generous, but many live a life apart as conservative Muslims, the women in head scarves and long dresses. Many Somali men have jobs as taxi drivers or security guards; others are accountants or run shops in the mini-malls catering to Somalis.

Antivaccine activists are campaigning among them, which worries public health officials, especially because some families go back and forth to Somalia, where measles is still a significant cause of childhood death, according to Unicef.

One of the first to raise the alarm was Anne Harrington, who worked in special education in the Minneapolis schools for 21 years.

In the last decade, she said, “we’ve begun seeing a tremendous number of kids born here who have the more severe forms of autism.”

Last year, she said, 25 percent of the children in preschool classes offering the most intensive treatment had Somali parents, while only about 6 percent of public school enrollment is Somali.

Dr. Daniel S. McLellan, a pediatrician, said that when he began practicing at Children’s Hospital six years ago, he was struck by how many autistic Somali children he saw.

“They had classic symptoms,” he said. “Really impaired language, didn’t watch faces, didn’t make eye contact, didn’t communicate with gestures, just lost in their own worlds. Nobody would mistake it for anything else.”

Speculation is rampant about possible causes: living conditions in Somalia or in refugee camps in Kenya; traditional medicines; intermarriage; genetic predisposition; vitamin D deficiencies due to a lack of sunlight; and, of course, vaccines.

But each theory has weaknesses.

Most of the children, said Idil Abdull, one of the first mothers of an autistic child to ask the authorities to investigate, were born here and have had the same medical care and shots as any child on Medicaid. It is not a case of misdiagnosis because of language problems; many have siblings doing well in school.

The Hmong, from Southeast Asia, who also immigrated here through refugee camps, do not have high autism rates, Ms. Harrington said.

Somali refugees have many illnesses, said Dr. Osman M. Ahmed of the East Africa Health Project in St. Paul, including tuberculosis, hepatitis B, depression from the civil war, and vitamin D deficiencies.

But lack of vitamin D is a dubious explanation. Rates of the disorder are similar among black and white Americans, according to the C.D.C., and Somalis, on average, are no darker-skinned than black Americans.

In Somalia, cousins do marry cousins. Globally, according to the March of Dimes, birth defect rates are highest in Arab countries with close intermarriage. But Somalia’s birth defect rate is moderate, and autism is not part of such studies.

In any case, many Somali parents are baffled and scared.

“It’s beyond denial,” said Hassan Samantar, a parent advocate at the Pacer Center for disabled children. “There was no word for this in Somali. We’ve seen Down syndrome and schizophrenia, but loosely termed — our word is more like ‘crazy.’ People are calling it ‘otismo’ or ‘the American disease.’ And some are saying it’s something you did or your parents did, and the curse is catching up with you.”

Many Somali parents here do not read English or watch American television, he said, so they first hear of autism only when a pediatrician suggests testing a child.

Some send their children back to relatives in Somalia.

“They say, ‘There’s more sunshine, there’s less pollution, the food is fresher because the animal was killed that morning,’ ” Ms. Abdull said. “They say: ‘My kid won’t talk? Throw him in the middle of 20 other kids, and he’ll talk. They’ll tease him till he has to.’ You know the way kids run around in Africa? People are so isolated in their apartments here. They think maybe they’ll snap out of it.”

Antivaccine groups have noticed. In November, J. B. Handley, a founder of Generation Rescue, which advocates treating autistic children with wheat- and dairy-free diets, vitamins and chelation to remove mercury, wrote an open letter to “Courageous Somali Parents.”

He warned them not to trust the state health department and suggested they slow down their children’s shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

The appeal has had an effect. Many parents, including Ayub’s, now say that their children’s autism began after seizures that started after they got shots.

“People in the Somali community have gravitated to that theory, and many are resisting immunization,” Dr. McLellan said.

But there are also children like 8-year-old Shumsudin Warsame, who does not speak more than one word at a time, runs in circles and hurts himself jabbing pens into his face. He was born in Somalia, grew up in Egypt and arrived here six months ago. He started having seizures before he was a year old, his father, Abdiasis, said, long before he had any vaccinations.

To Mr. Warsame, finding something to blame is beside the point. He is a single parent, and he and Shumsudin were at a health center hoping to find a part-time home care aide.

“I have a friend from Somalia with three kids with autism, all born in Minnesota,” Mr. Warsame said. “I need help; we all need help. I don’t see a lot of people trying to help us. It’s better than it was in Egypt or Somalia, but it’s not what I expected.”






The Fall and Rise of the Right Whale
By CORNELIA DEAN, The New York Times, March 17, 2009

ST. SIMONS ISLAND, Ga. — The biologists had been in the plane for hours, flying back and forth over the calm ocean. They had seen dolphins, leatherback turtles, a flock of water birds called gannets and even a basking shark — but not what they were looking for.

Then Millie Brower, who was peering with intense concentration through a bubblelike window fitted into the plane’s fuselage, announced “nine o’clock, about a mile off.” The plane made a stomach-churning lurch as the pilots banked left and began to circle. And there, below, were a right whale mother and her new calf, barely breaking the surface, lolling in the swells.

The researchers, from the National Oceanic and Atmospheric Administration and the Georgia Wildlife Trust, are part of an intense effort to monitor North Atlantic right whales, one of the most endangered, and closely watched, species on earth. As a database check eventually disclosed, the whale was Diablo, who was born in these waters eight years ago. Her calf — at a guess 2 weeks old and a bouncing 12 feet and 2 tons — was the 38th born this year, a record that would be surpassed just weeks later, with a report from NOAA on the birth of a 39th calf. The previous record was 31, set in 2001.



“It’s a bumper year for calves,” Richard Merrick, an oceanographer for NOAA’s fisheries service, said in an interview. “That’s a good sign.”

Actually, it’s one of so many good signs that researchers are beginning to hope that for the first time in centuries things are looking up for the right whale. They say the species offers proof that simple conservation steps can have a big impact, even for species driven to the edge of oblivion.

North Atlantic right whales, which can grow up to 55 feet long and weigh up to 70 tons, were the “right” whales for 18th- and 19th-century whalers because they are rich in oil and baleen, move slowly, keep close to shore and float when they die.

They were long ago hunted to extinction in European waters, and by 1900 perhaps only 100 or so remained in their North American range, from feeding grounds off Maritime Canada and New England to winter calving grounds off the Southeastern coast.

Since then, the species’ numbers have crept up, but very slowly. NOAA estimates that there are about 325, though scientists in and out of the agency suspect there may be more, perhaps as many as 400. It has been illegal to hunt the right whale since 1935, when the League of Nations put them under protection. Even so, researchers despaired of ever seeing a healthy right whale population here as long as ship strikes still maimed and killed them and fishing gear strangled them.

But “over the last four or five months there’s been a tremendous amount of good news,” said Tony LaCasse, a spokesman for the New England Aquarium, a center of right whale research. For example:

¶Recent changes in shipping lanes, some compulsory and others voluntary, seem to be reducing collisions between whales and vessels.

¶The Bush administration agreed last year to lower speed limits for large vessels in coastal waters where right whales congregate.

¶Fishing authorities in the United States are beginning to impose gear restrictions designed to reduce the chances whales and other marine mammals will be entangled in fishing lines. Canada is considering similar steps.

¶In December, researchers from the National Oceanic and Atmospheric Administration spotted an unusually large aggregation of right whales in the Gulf of Maine. A month later, a right whale turned up in the Azores, a first since the early 20th century.

¶And last year, probably for the first time since the 1600s, not one North Atlantic right whale died at human hands.

“We are seeing signs of recovery,” Dr. Merrick said. He and others warn that it is far too soon to say the whales are out of danger. Calving seasons are known for their ups and downs. A single whale in the Azores does not prove the species is recolonizing its old haunts. Not everyone embraces the new shipping regulations. And so far this year, five whales have turned up entangled with fishing gear. Rescuers removed all or almost all of the gear from the five, including one whale freed last week after being successfully sedated for the process, a first.

Efforts to protect the whales are costly. Surveying alone costs hundreds of thousands of dollars a year, said Barb Zoodsma, a NOAA biologist who coordinates survey efforts in the Southeast. In 2003, three researchers and a pilot died when their plane went down off Amelia Island, Florida.

“It’s a very expensive endeavor, and we are very cognizant of that fact,” Ms. Zoodsma said. Some wonder if it is worth it. “We have been pressured by some folks on the outside to say this is a lost cause,” said Greg Silber, who coordinates whale recovery efforts for NOAA, which is charged with protecting marine mammals and endangered species like the right whale.

The whales are so few and distinct in appearance that researchers identify them not just by number but by nickname. The whales are identifiable by patterns of growths on their skin called callosities. These callosities are colonized by pale, licelike creatures in patterns discernable even at a distance.

When survey teams spot a right whale, they can enter its description in an online database maintained by the aquarium and accessible to researchers around the world.

Sightings offer important clues to the movements and habits of the creatures. When the pod of whales was sighted in December, in the Jordan Basin, about 70 miles south of Bar Harbor, the individual whales were well known. But no one had seen them hang out in the basin before. Now, researchers think it may be a previously unknown wintering ground or even a place where whales mate.

When researchers learn where whales are, they can work to keep shippers out of the way. That is what happened in July, when shipping lanes that cross Stellwagen Bank, a national marine sanctuary north of Cape Cod, were moved slightly to the north. “One of the sanctuary staff had documented where the whale sightings were,” Mr. LaCasse said. The lanes now run through a less frequented area. And the sanctuary sends thank-you notes to ships that steer clear of the whales.

A similar change occurred off Saint John, New Brunswick, a hub for shipping oil into the Maritime Provinces. Lanes going into the city were moved a few years ago, after negotiations with the International Maritime Organization. Voluntary lane changes are in effect in places like Boston, Dr. Silber said. “The measured economic impact to mariners was minimal,” he said. But the changes brought “huge benefits” to the animals.

“Compliance appears to be quite high,” he said, adding, “We are optimistic.”

Moira Brown, a senior scientist at the aquarium, said researchers working with Canadian officials designated “an area to be avoided” south of New Brunswick where right whales congregate in summer. “Compliance there has been very good,” Dr. Brown said.

But entanglements with fishing gear continue to be a big problem.

When the researchers spotted Diablo, for example, she had something white on her fluke and, for a few anxious moments, they thought she might be snagged on fishing gear. Instead, like an estimated 80 percent to 85 percent of adult right whales, she carried a scar from a previous entanglement.

Entanglements can be lethal for the whales, Ms. Zoodsma said, especially if lines get caught in whales’ mouths or around their flippers. NOAA trains people to disentangle them, she said, but “when you have a 40-ton animal in a stressful situation” the work can be unpleasant and dangerous. And it is labor intensive. Last week’s effort to sedate and free an entangled whale involved a spotter plane, four boats and multiple attempts, she said. That is why preventing entanglements “is a first priority,” Ms. Zoodsma said. New efforts center on new gear, like lines that lie along the ocean floor or marker buoys that sit at the bottom until a fishing boat finds them electronically and signals them to bob to the surface.

Dr. Brown said the United States was taking a first step in this direction with regulations going into effect this spring. She said discussions were under way with fishing authorities in Canada. Meanwhile, researchers continue efforts to discover as much as they can about where the animals spend their time, what they eat and what natural factors may affect their health. One of their most unusual efforts involved dogs trained to sniff whale scat, which the animals usually produce at the surface. The samples the dogs helped collect offered valuable information about what the whales were eating and where they were feeding. They can also offer hormone clues about whether females are pregnant. Researchers want this information because despite this year’s baby boom, right whales are not reproducing as they should. The scientists want to know if the problem is impaired fertility, spontaneous miscarriage or some other issue.

In their book “The Urban Whale” (Harvard University Press, 2007), Scott D. Kraus and Rosalind M. Rolland, scientists at the aquarium, say they believe the last North American right whale deliberately hunted by people was a calf swimming with its mother off Palm Beach, Fla., in 1935.

But people will continue to kill right whales. Ship strikes “are still going to happen,” Dr. Merrick said. “To totally eliminate them would mean we would have to eliminate shipping.”

In the end, Ms. Zoodsma said, the value of a species is something “each individual has to sort that out for themselves.” But if right whales were to vanish, she said, “it would be a tremendous loss for future generations.”




Religious Belief Linked to Desire for Aggressive Treatment in Terminal Patients
By RONI CARYN RABIN, The New York Times, March 18, 2009

Terminally ill cancer patients who drew comfort from religion were far more likely to seek aggressive, life-prolonging care in the week before they died than were less religious patients and far more likely to want doctors to do everything possible to keep them alive, a study has found.



The patients who were devout were three times as likely as less religious ones to be put on a mechanical ventilator to maintain breathing during the last week of life, and they were less likely to do any advance care planning, like signing a do-not-resuscitate order, preparing a living will or creating a health care proxy, the analysis found.

The study is to be published Wednesday in The Journal of the American Medical Association.

“People think that spiritual patients are more likely to say their lives are in God’s hands — ’Let what happens happen’ — but in fact we know they want more aggressive care,” said Holly G. Prigerson, the study’s senior author and director of the Center for Psychosocial Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston.

“To religious people, life is sacred and sanctified,” Dr. Prigerson said, “and there’s a sense they feel it’s their duty and obligation to stay alive as long as possible.”

Aggressive life-prolonging care comes at a cost, however, in terms of both dollars and human suffering. Medicare, the government’s health plan for the elderly, spends about one-third of its budget on people who are in the last year of life, and much of that on patients at the very end of life.

Aggressive end-of-life care can lead to a more painful process of dying, researchers have found, and greater shock and grief for the family members left behind.

The new study used both a questionnaire and interviews to assess the level of reliance on religious faith for comfort among 345 patients with advanced cancer. The patients, most of them belonging to Christian denominations, were followed until they died, about four months on average.

A vast majority of patients, religious or not, did not want heroic measures taken. Still, 11.3 percent of the most religious patients received mechanical ventilation during the last week of life, compared with only 3.6 percent of the least religious.

The most religious patients were also more likely than less religious ones to be resuscitated in the last week of life and to be treated in an intensive-care unit as they died, although those differences may have been due to chance.

“Doctors don’t always acknowledge, and I’m pretty sure patients are telling us, that God is really important in their lives,” said Dr. Gerard Silvestri, a cancer specialist at the Medical University of South Carolina in Charleston, S.C., who has studied end-of-life decision making.

A study by Dr. Silvestri in 2003 found that while cancer patients listed their oncologist’s recommendation as the most influential factor affecting their decisions about medical care, their faith in God was the second-most-influential factor, ranking higher than the recommendations of their family doctors, their spouses and children, and even information about whether treatment would cure the disease.






From Arctic Soil, Fossils of a Goliath That Ruled the Jurassic Seas
By JOHN NOBLE WILFORD, The New York Times, March 17, 2009

There were monstrous reptiles in the deep, back in the time of dinosaurs.

They swam with mighty flippers, two fore and two hind, all four accelerating on attack. In their elongated heads were bone-crushing jaws more powerful than a Tyrannosaurus rex’s. They were the pliosaurs, heavyweight predators at the top of the food chain in ancient seas.

Much of this was already known. Now, after an analysis of fossils uncovered on a Norwegian island 800 miles from the North Pole, scientists have confirmed that they have found two partial skeletons of a gigantic new species, possibly a new family, of pliosaurs.

This extinct marine reptile was at least 50 feet long and weighed 45 tons, the largest known of its kind. Its massive skull was 10 feet long, and the flippers, more like outsize paddles, were also 10 feet. The creature — not yet given a scientific name but simply called the Monster or Predator X — hunted the seas 150 million years ago, in the Jurassic Period.



“Everything we are finding is new to science,” said Jorn H. Hurum, a paleontologist at the University of Oslo who directed the excavations on the Arctic island of Spitsbergen in the Svalbard archipelago. He described new details of the find in a telephone interview last week.

Dr. Hurum said that in the Jurassic Period, Spitsbergen was covered by the then-temperate waters of a deep ocean. In 2006, the expedition began finding a variety of marine fossils, including pieces of the pliosaur skull, weathering out of a mountainside patrolled by polar bears. A year later, the university announced, the team came upon a flipper and much of the first pliosaur specimen.

But only after excavating the second specimen in last summer’s expedition and comparing the two were the scientists prepared to describe their findings about the huge pliosaur’s anatomy and probable physiology and hunting strategy. This was reported in recent science meetings, and Dr. Hurum said a full description would be published next year in a journal.

A two-hour documentary on the expedition will be shown on the History Channel on March 29, at 8 p.m. Eastern and Pacific time.

Fossil hunters get used to working in the heat and cold, the dry and wet, but even without counting the polar bears nosing around their dig, Spitsbergen posed unusual challenges. It has only a three-week window for excavating, from the end of July through much of August.

That is after the warmth of a brief summer has thawed upper layers of the ground and before the onset of the round-the-clock darkness of Arctic winter. Even on the better days, temperatures drop close to freezing and clouds often spring a leak. For hours on end, excavators are assaulted by deafening jackhammers penetrating the recalcitrant permafrost to reach lower fossil beds. They are left in no doubt as to why, until now, Spitsbergen’s fossils had gone largely untapped.

Pliosaurs were marine reptiles not directly related to dinosaurs, which dwelled on land. Previous well-studied discoveries in Australia and England showed the average length of pliosaurs to be 16 to 20 feet. An Australian giant, Kronosaurus, measured up to 36 feet. In 2002, European and Mexican scientists found bones of what they called a larger pliosaur, but paleontologists said that much more analysis of the fossils was required before its size could be reliably estimated.

Pliosaurs preyed on fish, squidlike animals and other marine reptiles, including smaller relatives, the long-necked plesiosaurs, and another common sea reptile, ichthyosaurs, which superficially resemble the modern dolphin. Bones of many of these species have been collected at the Spitsbergen site.

Patrick Druckenmiller, a paleontologist at the University of Alaska, Fairbanks, and a member of the expedition, said the archipelago was proving to be “one of the most important localities of extinct marine reptiles in the world.”

Recent examinations of the Spitsbergen fossils were conducted at the Natural History Museum in Oslo, and in London and the United States. Bones at the base of the animal’s skull and in the jaw enabled researchers to estimate the 10-foot length of its crocodile-like head.

At Duke University, American scientists conducted wind-tunnel tests on models of the animal’s flippers, trying to determine how they were used to move through the water. Calculations of their hydrodynamic properties, researchers said, suggested that the predator could have used the front flippers while cruising, but went into overdrive with all four to accelerate toward its prey.

At the Natural History Museum in London, scientists took CT scans of the pliosaur’s skull, especially the region of the braincase, measuring its probable brain size and shape.

Although the recovered braincase was not complete, Dr. Druckenmiller, who participated in the CT examination, said that some of the structure appeared to be “similar in many respects” to the great white shark, the top predator in oceans today.

Dr. Hurum, therefore, suggested that the pliosaur might have been comparable to the white shark “in hunting strategy but much more powerful.”

In another investigation, Gregory M. Erickson, an evolutionary biologist at Florida State University, compiled data on the bite force of crocodiles and large alligators. A summary of results, issued by Dr. Hurum’s team, said the research indicated that the much larger Predator X had a bite force of about 33,000 pounds — more than 10 times that of any animal alive today and 2 to 4 times the bite force of T. rex.

“There is nothing really comparable in the sea today,” Dr. Hurum said, as he looked forward to more digging in August, in the remaining daylight of Spitsbergen’s next brief thaw.

Date: 2009-03-18 04:47 pm (UTC)
From: [identity profile] ubiquity75.livejournal.com
The ocean == scary

Date: 2009-03-18 05:44 pm (UTC)
From: [identity profile] brdgt.livejournal.com
Seriously dude.

Date: 2009-03-18 07:37 pm (UTC)
From: [identity profile] sasha-feather.livejournal.com
That article on religious faith and end-of-life treatment is a bit of a shocker!

Date: 2009-03-18 07:38 pm (UTC)
From: [identity profile] brdgt.livejournal.com
I know!

Date: 2009-03-18 11:11 pm (UTC)
From: [identity profile] ex-hellocth126.livejournal.com
The article on religious folk seeking to prolong their life honestly doesn't surprise me that much. A point the article didn't seem to cover is the potential belief that, if they can just last a little bit longer on the machines, they'll be the recipient of a miracle and be restored to health. When you live in a universe where you believe miracles can happen, your mind is inoculated against accepting anything as ultimately inevitable.

Date: 2009-03-19 08:31 pm (UTC)
From: [identity profile] brdgt.livejournal.com
It's not surprising to me because *most* people use complementary methods rather than just one. In fact, statistically, prayer is just as effective as a lot of other interventions.

Date: 2009-03-19 10:17 pm (UTC)
From: [identity profile] ex-hellocth126.livejournal.com
Which is why I always remember to be skeptical when people start slinging statistics at me. I managed to pass just enough of it to know that statisticians are the modern-day sophists.

Date: 2009-03-19 10:20 pm (UTC)
From: [identity profile] brdgt.livejournal.com
Really? Considering the power of the placebo in health care I'm actually not that skeptical of a statistic about prayer.
Edited Date: 2009-03-19 10:20 pm (UTC)

Date: 2009-03-19 10:33 pm (UTC)
From: [identity profile] ex-hellocth126.livejournal.com
Okay, good point there. I leaped to the conclusion of people trying to use those numbers to support the "power of prayer" as actual divine intervention (I'm pretty sure I was actually subjected to a sermon on that theme, based off those studies), instead of as a placebo.

Date: 2009-03-22 08:11 am (UTC)
From: [identity profile] angel80.livejournal.com
The relationship 'being Somali-autism' is terrifying. I hope it's an error.

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