The Big Fat Truth

Late in the morning on 20 February, more than 200 people packed an auditorium at the Harvard School of Public Health in Boston, Massachusetts. The purpose of the event, according to its organizers, was to explain why a new study about weight and death was absolutely wrong.

The report, a meta-analysis of 97 studies including 2.88 million people, had been released on 2 January in the Journal of the American Medical Association (JAMA). A team led by Katherine Flegal, an epidemiologist at the National Center for Health Statistics in Hyattsville, Maryland, reported that people deemed ‘overweight’ by international standards were 6% less likely to die than were those of ‘normal’ weight over the same time period.

The result seemed to counter decades of advice to avoid even modest weight gain, provoking coverage in most major news outlets — and a hostile backlash from some public-health experts. “This study is really a pile of rubbish, and no one should waste their time reading it,” said Walter Willett, a leading nutrition and epidemiology researcher at the Harvard school, in a radio interview. Willett later organized the Harvard symposium — where speakers lined up to critique Flegal’s study — to counteract that coverage and highlight what he and his colleagues saw as problems with the paper. “The Flegal paper was so flawed, so misleading and so confusing to so many people, we thought it really would be important to dig down more deeply,” Willett says.

But many researchers accept Flegal’s results and see them as just the latest report illustrating what is known as the obesity paradox. Being overweight increases a person’s risk of diabetes, heart disease, cancer and many other chronic illnesses. But these studies suggest that for some people — particularly those who are middle-aged or older, or already sick — a bit of extra weight is not particularly harmful, and may even be helpful. (Being so overweight as to be classed obese, however, is almost always associated with poor health outcomes.)

Read more at…

Nature, May 2013.

Advocacy’s Power and the Disease Olympics

One day in 2007 Ambassador Richard Sklar, who had pancreatic cancer, and Julie Fleshman, head of the nonprofit Pancreatic Cancer Action Network (PCAN), visited the D.C. office of House Representative Anna Eshoo to see if she might consider sponsoring legislation for more pancreatic cancer research. Sklar and Eshoo were friends.

“I asked him, Dick, why haven’t I heard from anyone on this?” Eshoo recalls. “And in a rapid-fire answer he said, because they’re dead.”

Eshoo learned that only 6 percent of people diagnosed with pancreatic cancer live longer than five years, and 74 percent die within a year. “The needle, so to speak, had not moved in half a century,” Eshoo says. “That, in and of itself, was an indication that whatever we were doing was clearly not enough.”

Over the next couple of years, PCAN’s advocacy efforts grew more visible because of emotional Congressional testimony by Carnegie Mellon professor Randy Pausch, who was dying of pancreatic cancer, and the news that actor Patrick Swayze was diagnosed. Eshoo introduced a bill, called The Pancreatic Cancer Research and Education Act, in September of 2008, then re-introduced it in January of 2009 and again in February 2011. As originally written, the bill would have directed the federal government to spend $888 million over five years on research and awareness campaigns focused solely on pancreatic cancer.

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Only Human, March 2013.

Q&A: How the Brain Activity Map Came Together

It was a single tweet. On 12 February, after US President Barack Obama made a subtle nod to a new neuroscience project in his annual State of the Union address, Francis Collins, director of the country’s National Institutes of Health (NIH), posted on the @NIHDirector Twitter feed: “Obama mentions the #NIH Brain Activity Map in #SOTU.” Instantly, scientists were buzzing with rumors that the Brain Activity Map could be the next moon shot, with a budget and timeline similar to the Human Genome Project.

The brain map began as a brief white paper and has grown into a large—and still largely undefined—collaboration of several government agencies, nonprofit foundations and private companies. As the stakeholders describe in a commentary slated to published later this month, the goal of the initiative is to understand how thousands of neurons work in concert to control behavior and trigger disease. Miyoung Chun, vice president for science programs at the Kavli Foundation in Oxnard, California, has been developing the project since the beginning and is the self-described “glue” between its many diverse stakeholders. Chun (pictured) spoke with Virginia Hughes about the evolution of the project and what it might mean for biomedicine.

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Nature Medicine, March 2013.

Romania’s Science Problem: A Tale of Two Florins (Part 2)

In September of 2010, Florin Albeanu traveled from New York, home of his neuroscience lab at Cold Spring Harbor Laboratory, to Bucharest, Romania, the city where he lived the first 19 years of his life, for an unusual scientific meeting.

The Romanian government had invited Albeanu and many other Romanian scientists working abroad to the meeting, called Diaspora in Scientific Research and Higher Education in Romania, to discuss the problems facing the country’s scientific enterprise (or lack of it). Corruption, incompetence and cheating is rampant in Romanian universities and government agencies. This has led to a dearth of funding and training opportunities, impeding researchers from doing any science at all, let alone publishing their results internationally recognized journals. Like Florin Ţibu, the subject of last week’s post, Florin Albeanu had seen this problem firsthand.

Albeanu grew up in Bucharest, in a culture of fear and economic hardship created by communist dictator Nicolae Ceaușescu. Albeanu vividly remembers the omnipresent political propaganda — not only the state-controlled television and radio, but ceremonies where his family, friends or neighbors gathered, begrudgingly, to sing songs about the greatness of Romania and Ceaușescu. Albeanu was 11 years old when Ceaușescu was executed, in 1989. Immediately after it happened, “there was a lot of hope for a drastic and very rapid change,” he says. “But in the following five to ten years, things changed very, very slowly.”

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Only Human, February 2013.

The Interpreter

In the 1930s, Jerusalem was a city of mounting cultural tensions, as its Jewish and Muslim inhabitants fought for control of a region at the heart of both religious traditions. Kholood Qumei’s grandmother, a Muslim, lived there with her two best friends, one Jewish and one Christian. Over the next decade, Jerusalem became increasingly segregated, with each religion claiming a different section of the city. These women rebelled in the small way they could: by swapping head coverings.

“They started wearing each other’s veils, and going to the other sections of Jerusalem with their children to visit each other,” says Qumei, who graduated this year from the Whitehead School of Diplomacy and International Relations. “It’s incredible to hear about that now.”

Inspired by her grandmother’s story, Qumei wrote her honors thesis on the hijab — the veil worn by many Muslim women — and its controversial reception in the Middle East today.

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Seton Hall Magazine, Fall 2012.

Funding Fears Prevent Researchers from Sharing Mice

Larry Reiter studies the chromosomal region 15q11-13, one of the genomic hotspots most firmly linked to autism. At his small lab at the University of Tennessee Health Science Center in Memphis, Reiter has sometimes relied on mutant mice — such as animals missing UBE3A, a key gene in the region — engineered by other groups for his experiments1.

But in the past couple of years, as competition has intensified in autism research, Reiter has had trouble gaining access to new mouse models. Frustrated, he has decided to focus instead on fruit flies.

Reiter says he worries that others might be similarly discouraged. “People will shy away from working in this area, because they can’t get the mouse to work on,” he says.

On paper, most funding organizations, such as the National Institutes of Health (NIH) and SFARI — this website’s parent organization — as well as most scientific journals stipulate that once researchers publish details of a model animal, they must make the animals available to other labs (see list).

“Failure to comply with the sharing plan may be carefully considered in future funding decisions for the investigator and their institution,” says J.P. Kim, director of the Division of Extramural Inventions and Technology Resources within the NIH Office of Extramural Research.

In practice, however, many researchers intentionally delay sharing or don’t share at all.

“It’s sort of the ugly secret,” Reiter says. “There is a long and proud tradition in the mouse field of holding on to your mouse, sometimes for 20 years.”

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SFARI, January 2012.

Autistics Speak

A year ago, an Australian group launched an autism awareness and fundraising event called Communication Shutdown. The idea was simple: Neurotypical people would ignore social networking sites such as Facebook and Twitter for the entire day, to simulate and show support for people with autism who have trouble communicating. Celebrities such as astronaut Buzz Aldrin, actress Fran Drescher, and animal scientist and autism advocate Temple Grandin were all on board.

But Corina Lynn Becker, an adult with autism who has a blog, wasn’t at all happy about it.

“A non-Autistic person still [has] the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability,” she wrote. “Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline.”

Read more at…

SFARI, November 2011.

Autism as Alibi

For years, 19-year-old Ryan Cleary barely left his room. He kept the blinds closed and doors shut, spending hours on end listening to heavy metal music and typing code at his computer.

Last month, Cleary was arrested for hacking into several major websites, including that of the UK’s Serious Organized Crime Agency. He’s facing 10 years in prison.

Cleary’s lawyers have chosen what I think is a pretty lame defense: Autism.

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SFARI, July 2011.

Shades of Grief

Sooner or later most of us suffer deep grief over the death of someone we love. The experience often causes people to question their sanity—as when they momentarily think they have caught sight of their loved one on a crowded street. Many mourners ponder, even if only abstractedly, their reason for living. But when are these disturbing thoughts and emotions normal—that is to say, they become less consuming and intense with the passage of time—and when do they cross the line to pathology, requiring ongoing treatment with powerful antidepressants or psychotherapy, or both?

Two proposed changes in the “bible” of psychiatric disorders—­the Diagnostic and Statistical Manual of Mental Disorders (DSM)—­aim to answer that question when the book’s fifth edition comes out in 2013. One change expected to appear in the DSM-5 reflects a growing consensus in the mental health field; the other has provoked great controversy.

In the less controversial change, the manual would add a new category: Complicated Grief Disorder, also known as traumatic or prolonged grief. The new diagnosis refers to a situation in which many of grief’s common symptoms—such as powerful pining for the deceased, great difficulty moving on, a sense that life is meaningless, and bitterness or anger about the loss—­last longer than six months. The controversial change focuses on the other end of the time spectrum: it allows medical treatment for depression in the first few weeks after a death. Currently the DSM specifically bars a bereaved person from being diagnosed with full-blown depression until at least two months have elapsed from the start of mourning.

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Scientific American, June 2011.

To Catch a Thief

At a time when government funding of autism research is in serious jeopardy, it’s disturbing to hear that a high-profile researcher has taken off with some of it.

This time last year, Poul Thorsen, a Danish epidemiologist, reportedly disappeared after embezzling some $1 million of a research grant he had received from the Centers for Disease Control and Prevention (CDC). Now a grand jury has indicted Thorsen on 13 counts of wire fraud and 9 counts of money laundering, according to the Atlanta Business Chronicle, which broke the story on 13 April.

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SFARI, April 2011.