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Chronic Disease, Imaging, Immunology, Neuroscience, Research, Stanford News

Patients' reaction to ME/CFS coverage in Stanford Medicine magazine

Patients' reaction to ME/CFS coverage in Stanford Medicine magazine

me-cfs-brain-zeineh

In the last few weeks, Stanford published two articles on chronic fatigue syndrome, a.k.a. myalgic encephalomyelitis, and the outpouring of positive feedback from ME/CFS patients has been tremendous. In my long-form Stanford Medicine story and video, I describe a young woman’s seven-year battle with the disease and the groundbreaking research being done by her physician, José Montoya, MD, and immunologist Mark Davis, PhD, to identify the biomarkers and root causes of ME/CFS. My colleague Bruce Goldman followed up with an elegantly written article describing the distinct differences between the brains of ME/CFS patients with those of healthy people, in a newly released study from this same research team.

While our primary job as medical science writers is to explain new research accurately, it’s a bonus to know that we captured the patient experience in a compassionate way, and that we have in some way eased their suffering with hope.

Here is a sampling of a few of these letters from around the world:

From British Columbia, Canada:
Thank you for an article that is very well done. I will be printing it for my MD and forwarding it to family and a few close friends because it captures this devastating illness so well. I will keep a copy for myself to remind me (on those dark days) that Dr. Montoya is in my corner.

From Sweden:
I would like to thank you for your very informative and interesting article! This kind of information of what research is going on at Stanford, etc., is very important for us patients with ME all over the world! There is a lot of disinformation coming out about this disease and I therefore very much appreciate your article and especially Dr. Montoya’s passionate engagement with this disease.

From Cali, Colombia:
Here in Cali, Colombia, the city of birth of Dr. Montoya, I feel very happy reading your excellent article, and learning the marvelous and difficult investigation performed by these brilliant scientists. I was moved to tears. Thank you.

From the San Francisco Bay Area:
I want to thank you very much for the powerful piece you wrote about ME/CFS. You tell the story in a very engaging way, which is so compelling. It’s not the usual doom/gloom/dark room story which my daughter and I have encountered frequently in what people write about ME/CFS. Family and friends with whom I have shared the article are appreciative of your writing so descriptively and articulately about all aspects of ME/CFS: the science, the inequity of research funding, the personal experience of a patient, the work of Drs. Montoya/Mark Davis/Holden Maecker.

From India:
Today I have gone through your article about Erin’s story. How she recovered from CFS had given me a ray of hope as I am also suffering from such an ailment for the last 6-8 years.

From Atlanta, Georgia:
I just read your beautifully written article on Immune System Disruption. First soccer caught my eye, then “swimming in the primordial soup of creative disruption” locked me in. I read every word … and I am going to spend the rest of the night in Atlanta copying [my internal medicine doctor] on the article.

From Australia:
Just wanted to thank you for your excellent article. It could really make a difference in raising awareness and I appreciate the quality of your writing. I have suffered from CFS/ME for many years in Australia and find the research project and your understanding very encouraging.

From the blogosphere:
I just wanted to thank you for taking the time to write such an in-depth, accurate article on our oft-ignored illness. Dr. Montoya is a hero within the ME/CFS community, but I didn’t know about the others at Stanford also working on ME/CFS — that gives me some hope for a better future! I plan to share your article on my ME/CFS blog and in several Facebook groups for ME/CFS that I belong to.

Previously: Some headway on chronic fatigue syndrome: Brain abnormalities pinpointedUnbroken: A chronic-fatigue patient’s long road to recovery, Deciphering the puzzle of chronic-fatigue syndrome and Stanford Medicine magazine traverses the immune system
Image, showing white matter differences between a ME/CFS patient sample an a healthy control, by Michael Zeineh/Stanford

Autoimmune Disease, Chronic Disease, Immunology, Stanford News, Videos

Unbroken: A chronic fatigue syndrome patient’s long road to recovery

Unbroken: A chronic fatigue syndrome patient’s long road to recovery

“Fatigue is what we experience, but it is what a match is to an atomic bomb,” said Laura Hillenbrand, the author of Unbroken, about how it feels to live with chronic fatigue syndrome.

I recently finished a Stanford Medicine story and video (above) about another CFS patient, “Erin,” who asked that her real name not be used. After an acute illness in rural Mexico, Erin went from being an elite soccer player to one of the 17 million people worldwide who suffer from the condition.

Most people who acquire hit-and-run infections go back to their normal lives after a few days. But these patients don’t. They become virtual shut-ins, prisoners of a never-ending cycle of flu-like symptoms, many of them bedridden for years. CFS, also called myalgic encephalomyelitis or ME/CFS, has no known cause or cure, frustrating both patients and physicians.

What makes Erin’s CFS story somewhat rare is its happy ending. With the help of Stanford infectious disease expert José Montoya, MD, and cardiac electrophysiologist Karen Friday, MD, Erin is back to working fulltime and playing soccer.

“Dr. Montoya and doctors like him are heroes for taking up an unpopular disease and patients that most doctors shun,” said Lori Chapo-Kroger, a registered nurse and CEO of the patient charity, PANDORA Org. “He combines his medical expertise and a creative approach with a truly caring heart for suffering patients.”

Dr. Montoya is also collaborating with immunologist Mark Davis, PhD, on the Stanford Initiative on Infection-Associated Chronic Diseases, a research project using cutting-edge technologies to identify the biomarkers and root causes of ME/CFS. Working at the Human Immune Monitoring Center, team members are searching 600 blood samples for infectious microbes, inflammation-related molecules and genetic flaws. In addition, they’re conducting brain scans and physical exams to look for physical abnormalities among these patients.

Early results are promising — the team has discovered a number of measurable biological markers that indicate that ME/CFS patients may be suffering from out-of-control inflammation.

The team’s goal: To find out what is wrong with the immune systems of patients with infection-triggered diseases such ME/CFS and Lyme disease, then figure out how to help them get better.

Previously: Deciphering the puzzle of chronic fatigue syndrome

The HIMC is partially funded by Spectrum, Stanford’s NIH Clinical and Translational Science Award.

Applied Biotechnology, Bioengineering, Events, Medical Education, Stanford News, Technology

Stanford physicians and engineers showcase innovative health-care solutions

Stanford physicians and engineers showcase innovative health-care solutions

scholar-poster

A “breathalyzer” that noninvasively determines if patients have unsafe levels of ammonia in their blood. The discovery of a previously approved drug that also fights the Dengue virus. A smartphone-based eye-imaging system that can be used to diagnose vision problems remotely.

These are a few of the 40-plus inventions and clinical solutions presented at the first annual Spectrum Innovation Research Symposium, held last Friday at the Stanford School of Medicine. The event demonstrated the power of bringing together teams of physicians, bioinformaticists and engineers to apply new technologies and ideas to challenging medical problems. Also showcased were budding physician-scientists supported by the Spectrum KL2 and TL1 clinical research training awards. (In the photo above, Colleen Craig, MD, an endocrinology fellow, describes a novel treatment that she’s developing for gastric-bypass patients who suffer from severely low blood sugar.)

The buzz is that it’s going to be a good year for health-care breakthroughs

Spectrum, the recipient of Stanford’s NIH Clinical and Translational Science Award, annually gives up to $50,000 to investigator teams for year-long projects in the areas of drug discovery, medical technologies, predictives/diagnostics, population health sciences and community engagement. This program also provides these teams with training and mentoring to help them move their ideas rapidly from bench to bedside and into the community.

“These modest pilot awards have been immensely successful in stimulating innovative ideas across the spectrum of translational research,” said Spectrum’s director, Harry Greenberg, MD. “They have lead to new inventions that promote individual’s health, new ways of improving the health of the populations and new efforts to assist our surrounding community on health issues.”

As this year’s grantees were rolling up their poster presentations, next year’s scholars were rolling up their sleeves to finish their 2014-15 Spectrum grant proposals, which are due in a few days.

It’s been a pivotal year in medical technology, with the launch of an unprecedented number of game-changing inventions, such as the Mini-ION, a $900 USB-powered DNA sequencer, and Apple HealthKit, a health-and-fitness dashboard and developer kit. In the coming year, these will provide Stanford scholars with amazing technology platforms from which to launch medical solutions that are better, faster and cheaper.

“We are in the middle of amazing biomedical innovation here in Silicon Valley,” said Atul Butte, MD, PhD, and faculty director of the diagnostics/predictives program. “Spectrum enables us to fund the earliest of early technologies, more risky than even the usual angel investments, but with higher potential impacts. In the end, this gets technologies to patients and families that much sooner.”

Because of this, anticipation among the grant-approval committee members at the symposium was high — the buzz is that it’s going to be a good year for health-care breakthroughs.

Previously: Spectrum awards innovation grants to 23 projects, Stanford awarded more than $45 million to spur translational research in medicine, As part of annual tradition, budding physician-scientists display their work, and New class of physician-scientists showcase research
Photo by Kris Newby

Clinical Trials, Ethics, Health Policy, Stanford News, Videos

Video explains why doctors don’t always know best

Video explains why doctors don’t always know best

“Over 85 percent of our major medical guideline recommendations are not based on high-quality evidence,” said Robert Califf, MD, director of the Duke Translational Medicine Institute, in an article I recently wrote for Inside Stanford Medicine.

This was the inconvenient truth that Stanford bioethicist David Magnus, PhD, had to explain to patients during focus groups, as he began developing policy recommendations for conducting ethical comparative-effectiveness research within physician practices.

“We had to dispel the myth that doctors always know which treatments are most effective for individual patients,” Magnus told me. “The truth is, in the absence of good evidence, these choices are often influenced by advertising, insurance coverage and local preferences.”

Gathering better treatment evidence is a key objective of the Affordable Care Act’s health-care reform mandate. It provides incentives for medical practices to continually evaluate the relative effectiveness of competing medical interventions as a way of delivering better, less costly care to more people. The widespread adoption of electronic medical records is enabling researchers to conduct these head-to-head comparisons in more automated ways, reducing the time and expense associated with the highly controlled clinical trials used to evaluate new drugs and devices.

A communications challenge with these new approaches, however, is how to explain the risks and rewards of participation to patients. In focus groups, Magnus found that no meaningful discussions could take place until his research team had educated patients on some fundamental concepts of medical research, such as standards-of-care, randomization and informed consent. To help with this process, his team produced three short, animated videos that would rapidly get everyone up to the same level of understanding. Magnus and his collaborators are making these videos available to all for educational purposes.

The first video, “Which Medication is Best?,” explores the influences and uncertainty associated with physicians’ prescribing preferences. “Research on Medical Practices” explains medical record reviews, study randomization and randomization of clinics and hospitals; and “Informing or Asking” describes ways to explain study participation to patients.

Magnus and his bioethicist collaborators from the Seattle Children’s Research Institute and University of Washington expect to publish their final ethics policy recommendations later this year.

Previously: Bioethicists say criticisms of preemie oxygen study could have “chilling effect” on clinical researchStanford biomedical ethicist discusses Choosing Wisely Initiative and Will new guidelines lead to massive statin use?
Videos by Booster Shot Media

Applied Biotechnology, Bioengineering, Global Health, In the News, Stanford News

Stanford bioengineer among Popular Science magazine’s “Brilliant 10”

Stanford bioengineer among Popular Science magazine’s “Brilliant 10”

prakash-popsci

Manu Prakash, PhD, a prolific inventor of low-cost scientific tools, has been named one of Popular Science magazine’s “Brilliant 10” for 2014 – an award that recognizes the nation’s brightest young minds in science and engineering.

In the last year Prakash has introduced two novel science tools made from everyday materials.

The first was a fully functional paper microscope, which costs less than a dollar in materials, that can be used for diagnosing blood-borne diseases such as malaria, African sleeping sickness and Chagas. It can also be used by children — our future scientists — to explore and learn from the microscopic world.

The second was a $5 programmable kid’s chemistry set, inspired by hand-crank music boxes. Like a music box, users crank a wheel that feeds a strip of hole-punched paper through the mechanism. When a pin hits a hole, it activates a pump that releases a precise, time-sequenced drop of a liquid onto a surface. This low-cost device can be used to test water quality, to provide affordable medical diagnostic tests, or to design chemistry experiments in schools.

The inventions are brilliant in both their elegant simplicity and their use of emerging technologies, such as 3D printers, microfluidics, laser cutters and conductive-ink printing.

“In one part of our lab we’ve been focusing on frugal science and democratizing scientific tools to get them out to people around the world who will use them,” Prakash told Amy Adams in a recent Stanford News story. “I’d started thinking about this connection between science education and global health. The things that you make for kids to explore science are also exactly the kind of things that you need in the field because they need to be robust and they need to be highly versatile.”

Sometimes, just for the fun of it, I’ll wander over to the Prakash lab to check out the team’s new inventions. They never fail to impress.

I heartily agree with the Popular Science editors on this year’s choices for the Brilliant 10: “Remember their names: they are already changing the world as we know it.”

Previously: Manu Prakash on how growing up in India influenced his interests as a Maker and entrepreneur, Dr. Prakash goes to Washington, The pied piper of cool science tools, Music box inspires a chemistry set for kids and scientists in developing countries and Free DIY microscope kits to citizen scientists with inspiring project ideas
Illustration courtesy of Popular Science magazine

Cancer, Health Costs, In the News, Stanford News, Videos

TV spot features a more humane approach to late-stage cancer care

Updated 8-4-14: The video is no longer posted on the Al Jazzera website, but the online story is still available.

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7-30-14: Is it possible to cut the costs of late-stage cancer care by 30 percent and provide a much better experience for patients?

That’s the question that recently brought an Al Jazzera America TV news crew out to the VA Palo Alto Health Care System, to interview patients enrolled in a new Stanford-designed pilot study on cancer care. You can watch their 9-minute video on this topic here.

The guiding principle behind this cancer-care program is this: Make sure that patients are fully informed about survival odds and treatment side effects well before they’re on the brink of death, when emotions overwhelm the decision-making skills of patients, their families and clinicians.

“Eighty percent of all cancer patients express a desire to die at home, yet only 10 percent do,” says Manali Patel, MD, the VA hospital oncologist running this study. “These end-of-life conversations, which typically take two hours in the beginning and require many follow-on conversations, are too hard, time-consuming and draining for a busy oncologist to do well.”

For these life-and-death discussions, patients are assigned personal care coaches who help them understand the big picture — treatment side effects, survival odds and pain-relief options. They also have access to a 24-hour symptom-management hotline and an option for in-home chemotherapy.

Architects of this new cancer care model, working with Arnold Milstein, MD, at Stanford’s Clinical Excellence Research Center, estimate that this program will lead to fewer unwanted treatments and expensive emergency room visits, saving the overall heath-care system money, while at the same time improving patient quality of life.

Previously: Communicating with terminally ill patients: A physician’s perspective, Identifying disparities in palliative care among cancer and non-cancer patients, Uncommon hero: A young oncologist fights for more humane cancer care, The money crunch: Stanford Medicine magazine’s new special report and New Stanford center to address inefficient health care

Applied Biotechnology, Bioengineering, Science, Science Policy, Stanford News

Stanford microscope inventor invited to first White House Maker Faire

Stanford microscope inventor invited to first White House Maker Faire

Foldscope-adams-squareLast week assistant professor of bioengineering Manu Prakash, PhD, received a call he couldn’t refuse — an invitation to attend the first-ever White House Maker Faire, to show attendees how to build a 50-cent microscope out of laser-cut paper, plastic tape and a tiny glass bead.

At today’s event, Prakash will also demonstrate how he turned a toy music box into a $5 programmable microfluidic chemistry set that can be used for applications as diverse as testing water quality and science fair projects.

Maker Faires, started by Make magazine in 2006, are gatherings where do-it-yourself enthusiasts show off their homemade projects and teach others how to make things using new technologies such as 3D printers, laser cutters, and desktop machine tools.

President Obama is hosting the first-ever White House Maker Faire to celebrate our “Nation of Makers” and to help empower America’s students and entrepreneurs to invent the future.

Prakash, who grew up in the mega-cities of India without a refrigerator, is a leader in the frugal maker movement. At Stanford, he works with students from bioengineering, medicine, and Bio-X to reengineer expensive, complex health-related devices to make them better, faster and cheaper.

His team also focuses on developing affordable science tools to inspire global innovation. To that end, Prakash recently launched an educational initiative called the “10,000 Microscopes Project,” where build-your-own-microscope kits will be shipped to the first 10,000 people who pledge to share their microscope images and experiments in a free, online microscopy manual.

“I’m so happy that the White House is looking at ways to celebrate scientific curiosity and invention,” Prakash told me. “Many children around the world have never used a microscope, even in developed countries like the United States. A universal program providing a microscope for every child could foster deep interest in science at an early age.”

For more information on the White House Maker Faire and today’s National Day of Making, or to watch the event live, visit www.whitehouse.gov/makerfaire or follow #NationofMakers on Twitter.

Previously: The pied piper of cool science tools, Music box inspires a chemistry set for kids and scientists in developing countries, Free DIY microscope kits to citizen scientists with inspiring project ideas and Stanford bioengineer develops a 50-cent paper microscope
Photo, of Quinn Monahan trying out a paper microscope, by Amy Adams
Photo in featured entry box by Manu Prakash

Aging, Health and Fitness, Health Policy, Public Health, Stanford News

Moderate exercise program for older adults reduces mobility disability, study shows

Moderate exercise program for older adults reduces mobility disability, study shows

senior_dog_walk

A 20-minute walk each day could help older adults stay on their feet and out of wheelchairs longer, according to a multicenter study published in the Journal of the American Medical Association today and coordinated by the University of Florida.

Researchers showed that a daily program of moderate physical activity reduced the risk of mobility disability in older adults by 18 percent compared to those who did not exercise. They also found a 28-percent reduction in the permanent loss of the ability to walk unaided.

Mobility, defined in this study as the ability to walk without assistance for at least 400 meters or about a quarter mile, is critical for aging seniors to function independently. Loss of mobility can lead to higher hospitalization and institutionalization costs, and even early death.

“These results suggest the potential for structured physical activity as a feasible and effective intervention to reduce the burden of disability among vulnerable older persons, in spite of some functional decline in late life,” wrote the researchers.

“While people are aware of the benefits of physical activity, this study is the largest and longest duration randomized trial evaluating the effects of physical activity on mobility disability in older adults. It will provide the hard evidence needed to change health policy,” said Abby King, PhD, the lead investigator for the Stanford field center and a professor of health research and policy and of medicine.

For this study, 1,635 sedentary men and women, age 70 to 89, were recruited by eight field centers across the United States and followed for an average of 2.6 years. All participants were able to walk a quarter mile within 15 minutes but were at risk for losing that ability.

“These are the patients who physicians see every day. This is why this study is so important: It includes a population that is typically understudied,” said principal investigator Marco Pahor, MD, director of the University of Florida’s Institute on Aging.

During the study, participants were randomly assigned to one of two groups. The first group walked 150 minutes per week and did strength, flexibility and balance training. They were encouraged to stay on track with the program through weekly participation in two in-person exercise classes and several home-based physical activity sessions. The second group attended health education classes, including low-intensity stretching exercises.

King said one of the most important takeaways from the study was this: “It’s never too late to gain important benefits from increased physical activity.”

Study results are summarized in this JAMA Report video.

Previously: AAMC’s Health Equity Research Snapshot features Stanford project on virtual health advisers, Help from a virtual friend goes a long way in boosting older adults’ physical activity, Computer-generated phone calls shown to help inactive adults get – and keep – moving
Photo by hartcreations/iStock

Applied Biotechnology, Events, Infectious Disease, Research, Stanford News, Videos

Stanford microbiologist's secret sauce for disease detection

Stanford microbiologist's secret sauce for disease detection

Last week, John Boothroyd, PhD, kicked off Stanford’s first Disease Detective lecture series with a fascinating tale about how his lab invented a simple biochemical “secret sauce” that revolutionized the detection of viral and bacterial infections like HIV, Hepatitis C and gonorrhea.

“It mostly started as a sketch on a piece of paper, then later became Gen-Probe’s core technology, which won them the 2004 National Medal of Technology,” explained Boothroyd, a Stanford professor of microbiology and immunology.

What Boothroyd invented, in collaboration with postdoctoral researchers James Burg and Philippe Pouletty, is called Transcription-Mediated Amplification.

Before this discovery, detecting a snippet of disease-specific DNA in a sample of cells was like finding a needle in a haystack. To increase a test’s accuracy, a lab technician would try to coax the target DNA into replicating itself through hours of tedious time-and- temperature-sensitive steps.

Boothroyd and his team’s new process consisted of a simple recipe of primers and enzymes that, after optimization by Gen-Probe, tricked a target snippet of DNA into automatically creating 10 billion copies of itself in less than an hour. This ultimately enabled the development of cheaper and faster disease tests.

In 2012 Boothroyd was ushered into the Stanford Inventor’s Hall of Fame because of this patent, which is among the top-ten revenue-generating inventions Stanford. He has six other patented inventions, including one that makes antigen production for the testing of toxoplasmosis infections far more efficient. Another detects toxoplasmosis in the amniotic fluid of pregnant women. He describes this research in the video above.

Looking back on his career choices, one thing that Boothroyd is grateful for is being able to combine his two loves at Stanford — basic research and teaching — while leaving the business of running a company to his patent licensees.

To the lecture hall filled with student researchers worried about the “postdocalypse,” the shortage of tenure-track research positions in academia, he gave this advice:

“I think the [postdocalypse] negativity is overstated. You have to have faith in yourself. You have to do what you want to do. If you’re enjoying your work and it’s a stepping stone to where you’re going, relax and see what happens.”

The next Disease Detective lecture will be held during fall quarter 2014. Watch for details on the Stanford Predictives and Diagnostics Accelerator webpage.

Previously: Patrick House discusses Toxoplasma gondii, parasitic mind control and zombies, Cat guts, car crashes, and warp-speed Toxoplasma infections, and NIH study supports screening pregnant women for toxoplasmosis

Clinical Trials, Health Policy, Research, Science Policy, Stanford News, Videos

New Stanford center aims to promote research excellence

New Stanford center aims to promote research excellence

Updated 4-24-14: The center founders discuss METRICS in this just-posted 1:2:1 podcast.

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4-23-14: Stanford has a new center, called the Meta-Research Innovation Center at Stanford, or METRICS for short, that will focus on ways to transform research practices to improve the reproducibility, efficiency and quality of scientific investigations.
When Stanford professor John Ioannidis, MD, DSc, discusses ideas on how METRICS might improve research quality, he points to the wealth of statistics within any newspaper’s sports section.

“Science needs as many ways to measure performance as sports do,” says Ioannidis. “More important, we need to find efficient approaches for enhancing this performance. There are many ideas on how to improve the efficiency of setting a research agenda, prioritizing research questions, optimizing study design, maximizing accuracy of information, minimizing biases, enhancing reporting of research, and aligning incentives and rewards so that research efforts become more successful. Possibly we can do better on all of these fronts.”

The center’s other co-director is Steven Goodman, MD, MHS, PhD, professor of medicine and of health research and policy.

METRICS’s core group of interdisciplinary scholars will be working on various aspects of meta-research, from methodologies to processes to policy. The center will also provide educational funding for students and scholars; organize collaborative working groups that include academics, policymakers, research funders and the public; and help establish similar initiatives worldwide.

You can learn more about “meta-research” and METRICS’s mission in the short interview above and in this release. Ioannidis discusses the center’s short- and long-term goals in the video clip below.

Previously: The Lancet documents waste in research, proposes solutions, “US effect” leads to publication of biased research, says Stanford’s John Ioannidis and Shaky evidence moves animal studies to humans, according to Stanford-led study
Photo in featured-entry box by Norbert Von Der Groeben

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