Catching (up with) MERS

Today a MERS case was announced in another country — Italy, where the patient is a man who recently traveled to Jordan (it’s being reported that one of his sons there has similar symptoms). This makes at least fifty known patients with greater than 50% mortality rate. Time to introduce our latest potentially large-scale viral adversary.

Middle East respiratory syndrome coronavirus (MERS-CoV) is one of several coronaviruses humans contract.  In fact, about 30% of cases of the “common cold” are caused by coronaviruses, but with  coronaviruses SARS and MERS, the illness can be far more severe.  Under the electron microscope, MERS looks like this:

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

It’s deadly.  As of May 29th, the WHO knew of 49 confirmed cases and 27 deaths. That’s a 55% mortality rate compared to the <10% rate of SARS.  (Reuters today says 51 patients with 30 deaths: 58% mortality.)

It can progress quickly. This slide from an article in the New England Journal of Medicine shows the rapid change in four patients, a family cluster of four men who became sick last fall. Two of them died.

We don’t know where it came from, how it can be transmitted, or much else.  The assumption is that there’s an animal source, but that hasn’t been found.  We know it can be transmitted from person-to-person, but not exactly how that happens or how contagious MERS is.  Those aren’t the only puzzles. As Laurie Garrett wrote about the case above, “The cluster of cases in this family presents a list of mysteries: Why were all the sick and dead men? With 28 people in this three-building urban household, why were these four infected, and the other 24 spared? The family lived in a big city, had no animals, ate supermarket food and had jobs that offered no contact with the virus. How did they catch MERS?”

The incubation period may be substantial.  A study of French cases of MERS released online by The Lancet yesterday estimates one incubation period as 9-12 days. This calls for longer isolation than expected and raises the risk that the virus will spread as people who don’t yet feel sick travel.

It’s centered in a troubled area.  It’s called Middle East respiratory syndrome for a reason: all currently known cases originated there (one transmission is known to have taken place outside of that region, but from a patient infected there). Millions of Syrians have been displaced during their civil war and many refugees are crammed together in camps, like this one in Jordan that was featured on yesterday’s PBS Newshour.  If the virus were to get a foothold in a place like that, it could quickly overwhelm the medical resources for refugee care.

World No Tobacco Day

Today is the World Health Organization’s World No Tobacco Day

WHO World No Tobacco Day

I’m not entirely comfortable with the WHO’s approach, though I agree with the goal.  Another poster asks, “Are you being manipulated?” which could suggest tobacco users are gullible, weak-willed followers.  It’s standard to refer to tobacco use as an epidemic and that has been the case for decades, but I struggle with drawing a line between what is and what is not an epidemic.  And, I’m skeptical about the lure to imitate movie smokers nowadays, but that could be an ethnocentric view: I grew up in a culture where the damage caused by smoking was well-known and taught to us at an early age — making movie smoking nothing more than character development — and at a time when TV and radio ads were banned.  It was a long way from 1950:

1950-cigarettes-that-soothe-your-throat

On a related note, this seems like the perfect opportunity to link to Quit Tobacco International, a project focused on tobacco use in India and Indonesia and founded by, among others, anthropologists Mark and Mimi Nichter.  From the site:

Over the next two decades, deaths due to tobacco will soar to 4.2 million annually in Asian countries, nearly twice that of more developed regions. The wealth of research knowledge and lessons learned about tobacco cessation from high income countries cannot be simply transferred into low and middle income countries (LMICs) given the vast differences in cultural norms, tobacco products and use patterns and health care and public health systems.

Michael J. Fox as a public figure with Parkinson’s… a fictional one

I don’t watch many sitcoms, but the upcoming Michael J. Fox Show will have a spot on my DVR.  You’ve already seen the trailer above, haven’t you? It’s sweet, irreverent, and funny.  The dinner table moment that starts at 3:10 in the video just slays me.

Outside of interviews and cameos, we rarely get to see disabled people on television. I have to believe that a beloved actor with Parkinson’s disease will ensure that the details about his condition are portrayed with reasonable accuracy. It’s refreshing to see a representation of someone living with a degenerative disease; not coping, not surviving, but living.

Blogs by people with multidrug-resistant TB

Infographic from MSF

Infographic from MSF: click for full version

One of the sessions at today’s MSF Scientific Day conference is about the MSF’s TB & ME project, a site featuring blogs by people around the world who are undergoing treatment for multidrug-resistant tuberculosis (MDR-TB). The blog provides lots of information about TB and how drug resistance develops, but the focus is on the personal stories of individuals from places as disparate as the UK, Armenia, India, Swaziland and Australia. On the PLOS Medicine blog in 2011, Dr. Phillip du Cros explained the theme of TB & ME like this:

What goes through a person’s mind when they are told they have multidrug- resistant tuberculosis (MDR-TB) and face at least eight months of injections and nearly two years of medication? What are they thinking when they find out that the drugs they have to take will make them feel sick, and the side-effects they will experience could range from severe to life-threatening?

The stigma of having TB can be severe. An infected person must be isolated or wear a mask and in some cases, the weakness of a TB patient can be mistakenly seen as a sign of AIDS. TB & ME has a number of posts tagged with the keyword “stigma” which provide some insight into what it’s like to live with this disease.

The patient experience matters. That seems obvious to those of us with an anthropological mindset, yet it seems that it’s overlooked or disregarded far too often. This project is refreshing and the bloggers are powerful advocates simply by telling their own stories. I wasn’t able to watch the conference session that analyzed the effects of blogging on the patients, but the presentation slides are online and suggest that they felt more empowered, had a sense of solidarity with other patients, were more likely to adhere to the treatment, and that blogging enhanced the relationship between the patient and medical staff. I’ll post a link to the video of the session when it’s online.

MSF Scientific Day live this Friday

Médecins Sans Frontières/Doctors Without Borders (MSF) will stream their Scientific Day conference live at no charge this Friday [watch here].  The conference takes place in London but they have also published a schedule in Eastern Standard Time.

logo_jpeg_newsite

Highlights of this year’s conference include:

  • The keynote speech by international health expert, co-founder of theGapminder Foundation and TED talks alumnus Hans Rosling on the synergy and conflict between research and advocacy. This will be followed by a panel discussion on the impact of MSF’s research.
  • Treatment in conflict and emergency settings including TB in Somalia and hepatitis E in South Sudan
  • New approaches to preventing malaria in Mali and Chad, cholera vaccination in an outbreak in Guinea, and preventing malnutrition in Niger by cash transfer and food supplementation
  • Challenges for MSF including the introduction of a medical error reporting system and parenteral artesunate for severe malaria
  • The role of social media and health looking at the effect of MDR-TB patients blogging about their experiences

Viewers can use the Twitter #MSFSci hashtag to participate during the event on Friday and follow @MSF_UK for more info. The video archive from last year’s event can be found here on Vimeo

Why is there a gluten-free version of everything now?

Killer homemade wheat bread   (c) Kristen Pierce

Killer homemade wheat bread, literally?

When did we all develop problems with gluten? Slate considered this question a couple of months ago. The article links to a five year old article in USA Today with a quote from the executive director of the Gluten Intolerance Group of North America, “Marketers estimate that 15% to 25% of consumers want gluten-free foods — though doctors estimate just 1% have celiac disease, the best-defined and most severe form of gluten intolerance.”  The Well blog of the New York Times also took on the issue of gluten intolerance vs. a health delusion based on a fad.

The vast majority of people who have problems with gluten are self-diagnosed. I know several people who are gluten intolerant, and I’m not impolite enough to ask to see a doctor’s note when they choose something other than my baked goods. Are these self-diagnosed people making a trendy health choice based on medical rumor and the placebo effect, or are they displaying agency and individual awareness of their symptoms that the medical system doesn’t recognize?  From the Slate article:

… a randomized, blinded trial in Italy just showed that one-third of patients with gluten intolerance clearly felt better with gluten-free diets, which confirmed “a distinct clinical condition.” (Since most people can tell wheat-containing baked goods from their gluten-free substitutes, the investigators cleverly had all patients follow gluten-free diets and then take capsules containing either gluten or a placebo.)

Personally, if someone chooses and can afford to eat a gluten-free diet, and it makes him or her feel better, I don’t care whether the condition is “really real” or not. It gets a bit challenging trying to accommodate every dietary restriction, but viva la potluck. What do you think?

Perils of quantification

New Year’s Resolution season is upon us again and with it, many of us will be setting goals that are tied to our behavior or self-improvement.  With a goal there should be a way to measure progress, and watching a number change can provide potent motivation.

That’s part of the basis for the quantified self movement, consisting of people who use self-tracking to collect data about how their bodies and minds work (we’ll debate duality another time), often for the purpose of understanding and optimization  This is introspection and self-disclosure taken to a new level.  Some use an artistic approach, like Buster Benson, who – among many other things – takes a picture of himself at the same time each day.  J. Paul Neeley, seen in this video from the Mayo Clinic Center for Innovation Transform 2012 conference, has put a lot of thought into optimizing his happiness based on observations from self-tracking.  Others take a hardcore medical approach, tracking weight, heart rate, respiration, blood pressure, sleep hours, caloric intake and balance, and other objective numbers.

Many of the methods used by quantified self practitioners could be found in a social science textbook, but they are applied to a sample size of one.  Some of the findings apply no further.  Other data, shared and aggregated, could lead to discoveries that improve the lives of many.  I’ve seen the movement described as little more than a herd of narcissists, but my opinion is that it’s a display of millennial attitudes of curiosity, openness, introspection, and embrace of technology (which are not limited to an age range, but worldview).  Perhaps it’s microanthropology or micropsychology as well.

That said, I was struck by a short essay by Jeff Wise on the last page of the November 2012 issue of Red Bulletin magazine (produced by the energy drink company yet a fun, free read; see their website).  His piece, entitled “The Measure of a Man”  begins by talking about the difference between subjective methods of self-awareness, such as “I have trouble fitting into my clothes” and objective ones like “I weigh 233 pounds.”  Seeing the number on the scale go down to 232 provides immediate external positive reinforcement and a sense of control.  It’s strong motivation to keep moving that number in the preferred direction.

However, Wise points to the danger of focusing on a particular metric.  He compares it to the use of a district-wide test to measure student performance.  “The first year… their scores offer a rough measure of the overall quality of their education.  But in subsequent years, those scores will increasingly measure something else: Teachers’ ability to prepare their pupils for that particular exam.”  Applied to tracking weight, he warns that “what you measure becomes what you do, and what you do becomes who you are,” with the potential for eating disorders, substance abuse or neglecting other aspects of good health.

In reading blogs of the quantified self crowd, I’ve frequently seen this in confessions that the trackers have changed behavior to make one particular metric “look better”, often at the expense of others.  Even in our introspective attempts to understand human nature, we display it.

Longevity: beyond diet

There is a lot of research on longevity going on now, much of it with Kurzweil’s theory of singularity in view: he believes we’re on the cusp of having the technological advances for indefinite life extension, and that it’s now possible to slow and reverse physical aging long enough to survive until that time.  Some researchers have found that extreme caloric restriction radically extends the lifespan of mice; others have recently discovered that drugs that maintain a state of ketosis seem to have similar effect (in both cases, the body feeds off its own resources more efficiently). This comes at a time when the life expectancy for some groups and areas in the US is actually on the decline.

But, there is also research going on considers the social and cultural aspects of longevity, looking at pockets of long-lived people in various parts of the world. An article in Sunday’s New York Times Magazine focused on the Greek island of Ikaria, “The Island Where People Forget to Die“.  Not only are Ikarians two and a half times more likely to reach 90 than Americans, but they do so with dramatically lower rates of depression and dementia.

(c) Andrea Frazzetta/LUZphoto for The New York Times

While the researchers don’t overlook a diet low in processed foods and meat, high in local vegetables, legumes, olive oil, fresh herbs, and red wine, the article also considers lifestyle elements.  Older people have active social lives in public, often playing competitive games. They work in their gardens and live in their own homes, and they rest all they need.

When research like this gets wide attention, it seems to me that the result is usually a trendy diet that mimics an aspect of the subject area’s nutrition, along with a plethora of new, highly marketed supplement pills.  Taking extra antioxidants and eating more veggies probably won’t hurt anyone, but you can’t put domino games with friends and ten hours of sleep into a pill.

About twenty years ago, I lived not far from another pocket of longevity mentioned in the article, the Nuoro region of Sardinia.  We Americans rushed around as usual, but the local pace was vastly different. It could take two years to have a new home phone line installed, a situation that was met with a shrug. Local stores carried very few groceries: you bought from the twice weekly outdoor market, you grew it yourself, you set aside hours to have a restaurant dinner, or you picked up a rotisserie chicken — the only “fast food” in town. Every evening before dinner was the passagiata, a time when locals would hang out in the town square, sauntering in circles and chatting with friends, saying hello to acquaintances, and catching up on the gossip. All ages were there, from babies to great great grandmothers, and I always wondered what the heck they talked about when their lives seemed so simple.  Nothing was ever done in a rush and most things were scheduled to be done domani, which didn’t have the literal translation of “tomorrow”, but actually meant “whenever we happen to get around to it.”

Days spent like the Sardinians or island Greeks are what I relish when I take vacations nowadays, but that pace made for brutal culture shock. It’s also incongruous with modern economics, from the experience of the ongoing EU financial crises.  Still, I’d be happier if the takeaway from research like this was a reasonable critique of our rushed, striving lifestyles and the increased social isolation of the elderly rather than just another trendy supplement.

2012 Wired Health Conference, simulcast tomorrow & Tuesday

This year, the Wired Health Conference will be exploring personalized medicine, which includes the fascinating growing area of the quantified self:

The theme of the event is “Living By Numbers” — the notion that new data and analytics are enabling better healthcare delivery and research. The idea is straightforward on its face: By paying heed to our health, and taking advantage of new tools for self-monitoring, feedback, and community, we can empower our own actions and skirt the disease risks that life throws at us. But this potential is only just upon us, with the combination of new computing power, ample data storage, and having the right questions at hand. This technology is just beginning to enable the new frontier of personalized medicine: combining the insights of epidemiology with our own personal metrics to customize medical science to individuals.

You can watch the simulcast live, free.  Talks begin at 4:00pm Eastern on Monday, and run from 9:00am-5:00pm Tuesday, with an exciting roster of speakers.

Here and abroad, two articles on prevention

Two articles caught my eye today.  The first is on some of the experimental programs coming out of the Affordable Care Act to design effective community prevention.  But since we don’t see a lot of evidence that awareness-raising campaigns can work in and of themselves, new approaches are being tried out.  The article points to distrust of the government, the short-term thinking that results from living in poverty, and easy access to less healthy food as some of the reasons why preventable disease continues to be the leading cause of death in America.

It’s instructive to compare this article to a recent study on the factors leading to maternal mortality in India.  Summarized nicely here, researchers from the Public Health Foundation of India (PHFI), the London School of Hygiene and Tropical Medicine, and the University of Aberdeen looked at the success of a recent government program (JSY), a conditional cash-transfer program meant to create incentives for women to go to hospitals to give birth.  What looks like thoughtful qualitative work revealed that “good care” looks different to Indian women than it does in many other cultural contexts.  Moreover, the structural constraints women face are so great that cash incentives are not likely to change maternal mortality rates dramatically: many women don’t have the right to choose when they want to get pregnant and where they will deliver, and one in three women said they couldn’t go to hospitals because there was no one to look after other children at home.