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Virus Hunters Turn To Social Media – And Chili Peppers
Saturday 18 July 2015
Virus Hunters Turn to Social Media -- and Chili Peppers
Why were two of the world's most eminent scientific researchers sitting down to munch their way through a plate of chili peppers, flavored with Tabasco sauce, setting their mouths on fire?
Ian Lipkin, Mady Hornig - Chilli M.E. Challenge
Why indeed? They did so recently as a charity fund-raising stunt, like the Ice Bucket Challenge that has raised awareness and more than $220 million in donations to support the fight against Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. The scientific sleuths did it because they're involved in critical research into one of the most awful and least understood of the so-called invisible diseases, Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome.
They did it, too, because the government, though the National Institutes of Health, has failed the researchers and those who suffer from this debilitating disease. Out of its $30 billion-plus budget, NIH spends a paltry, insulting $5 million, on ME, which affects 1 million people in the United States. In my view, that's a national disgrace.
The chili pepper-eaters at the event, perform as though they were in a "Saturday Night Live" skit. But they aren't actors. They are Drs. Ian Lipkin and Mady Hornig of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health, and you can find them enduring jalapeno hell on social media.
Together Drs. Lipkin and Hornig are working to find a cure for ME, and they are also key players in our national defense against infectious disease. For example, when Ebola appeared out of control in West Africa, the government turned to Dr. Lipkin. His work on West Nile Virus and Severe Acute Respiratory Syndrome (SARS) is globally recognized and has brought him many awards. The media calls him "the world's top virus hunter."
Yet for the work close to his heart, work to find a diagnosis and then a cure for ME, the government has found no money. So Drs. Lipkin and Hornig have turned to crowd-sourcing to fund their research efforts.
Inspired by the Ice Bucket Challenge, four women who suffer from ME came together to give the Columbia team a shove. The result was the July 1 Chili Pepper Challenge, which was aimed at social media. Their hope is that the challenge will be a social media phenomenon, and that thousands take it up.
The Chili Pepper Challenge works like this: People make a video of themselves eating the hottest chili pepper they can, post it on Facebook, YouTube, Instagram or other social media sites, and then challenge friends to do the same within 24 hours or make a donation to ME. Many will do both.
As someone who has been writing about the way government spends money for more than 40 years, to me the Chili Pepper Challenge is noble - and I hope there's great gain in awareness and funding for ME research for all the chili-pepper eaters' mouth pain -- and ineffably sad. Is this what we've come down to in funding for medical research? The government has money for many expensive things, but not for two of our greatest scientists to do vital work.
Part of the problem is the disease itself. If you're struck down with ME, you're probably afflicted for life. Very few sufferers, like best-selling author Laura Hillenbrand, manage to be productive.
But for most it is a solitary life sentence of sickness with varying torments, from acute muscular pain and dysphasia to intolerance of light or sound. Exercise triggers collapse. Suicide is common. I'm told that one woman who spearheaded an earlier effort to crowd-source funds for Dr. Lipkin - most research efforts are privately funded -- subsequently took her life. I've been writing about this dreadful disease for five years, and I get letters frequently from women -- the preponderance of patients -- who tell me they pray each night for death.
The first problem for doctors treating the disease - and it's not taught in most medical schools - is that there's no easy test, known as a biological marker. Doctors rely on what they call "waste basket" analysis; if it's not anything else, then it may be ME.
Yet progress is being made on the disease -- infinitesimal, but progress nonetheless. Earlier this year, Drs. Lipkin and Hornig published a seminal finding that they'd been able to identify patterns of change in the immune systems of patients. This is a step toward early detection of the disease, and an indication these top virus hunters are closing on their prey.
Maybe it'll take generations, but there can be progress if there is research. But research is expensive. So I hope to see you suffering on Facebook or YouTube as you ingest a chili pepper too far.
Follow Llewellyn King on Twitter: www.twitter.com/LlewellynKing2
The above originally appeared here.
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
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