Julie Rehmeyer

Julie Rehmeyer is a freelance math and science journalist, contributing editor to Discover, and since 1999, lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). She has written for numerous publications including the New York Times, Slate,The Washington Post, Discover, Science News, Aeon, Wired, High Country News and others. She is presently writing a memoir about "navigating the science and politics of poorly understood illnesses, based on my experience with chronic fatigue syndrome." Her memoir is scheduled to be released on 23 May 2017 by the publisher, Rodale, Inc.

Education

 * Rehmeyer holds a Masters in Mathematics from Massachusetts Institute of Technology in Cambridge, Massachusetts; a Bachelor's degree from Wellesley college; and a certificate in science writing from the University of California, Santa Cruz.

Awards

 * 2015, American Statistical Association’s (ASA) Excellence in Statistical Reporting Award (ESRA)

Books

 * 2017, Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand, a memoir

Media coverage

 * May 23, 2017: The Mystery Illness That Plagued This Writer For Years Oprah.com

Articles about ME/CFS

 * 2017, Getting It Wrong on Chronic Fatigue Syndrome, in The New York Times, Sunday Review by Julie Rehmeyer and David Tuller"Excerpt: 'What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.'"


 * Letters of response
 * Letters - The New York Times

Excerpt: "But we shouldn’t take solace in the comforting notion that science is self-correcting. Many people, including many very sick people, had to invest immense effort and withstand vitriol to use science to correct these mistakes. And even that might not have been enough without Tuller’s rather heroic investigation. We do not currently have a sustainable, reliable method of overturning flawed research. And rectifying PACE will take more than exposing its flaws. The lingering doubt it has cast on the illness will only be fully dispersed when we’ve finally figured out what’s really going on with the disease. For that, we need to invest in some serious, good science. The kind I continue to love." "Excerpt: 'In February, the Institute of Medicine, a private nonprofit group that advises the government on health issues, released an authoritative report on ME/CFS, exhorting doctors to take it seriously. It also developed new diagnosis criteria and recommended a new name, contending that the name chronic fatigue syndrome is misleading and trivializing. A few weeks later, Ian Lipkin and Mady Hornig, physician-scientists at the Columbia University Mailman School of Public Health, published the largest study of the immune systems of ME/CFS patients yet, with 298 patients and 348 healthy controls. It showed immune systems of relatively newly ill patients were revved up, like they’d just detected a new infection. But the immune systems of patients who’d been sick for more than three years appeared exhausted — a distinction never seen before.'" "Excerpt: 'Just a year ago, both the public criticism of the PACE trial and the moves by the NIH were nearly unimaginable. But to me, these events feel like the fruits of change that’s been cultivated over years. When the PACE trial first came out in 2011, few journalists took serious interest in the disease, and much of the coverage was dreadful. Now, several journalists, in addition to Tuller, have been producing great work. In 2011, the cadre of dedicated researchers was tiny and isolated. Now, giants in their own fields have become fascinated by the illness. The patient community has long been divided and fractious, but now, platforms like #MEAction are supporting more united action, and patients are developing recommendations for research priorities, modeling their efforts on AIDS and breast cancer activists’ methods to earn respect and influence in the scientific community.'" "Excerpt:'The hallmark symptom of chronic fatigue syndrome isn’t fatigue at all: It’s a dramatic worsening of symptoms after exertion (which for some patients can be as little as lifting a toothbrush). On top of that, patients have cognitive problems, sometimes so extreme they can’t talk or read; within half an hour of standing, their blood pressure drops or their heart rate soars; and sleep makes them feel no better. Most have additional symptoms, too, including pain and neurological and immune problems. But many doctors, it seems, aren’t persuaded by this scientific evidence. So what would persuade them? Doctors may be a scientifically minded lot, but they are also slow to change and are focused on their daily work. “Real” for a doctor often translates to 'indicated by some objective test.''" "Excerpt:'A study published in March reported that some doctors have little understanding of the condition and are skeptical that it exists. Researchers and clinicians specializing in the illness argue that science long ago showed that the disease has a biological basis and that there are treatments that can help, though not cure, it. Because of doctors’ lack of knowledge, patients don’t get the help they need, but they often feel they get a helping of scorn.'" "Excerpt:'In 2005, the CDC broadened the definition further, requiring only low levels of symptoms other than fatigue, and the number of patients who qualified for the diagnosis increased by six to 10 times. Researchers and clinicians specializing in the disease, in the meantime, created a far more precise definition, requiring post-exertional malaise — a severe increase of symptoms after exercise — along with abnormalities in neuroendocrine and immune functioning, and in the autonomic nervous system, which controls respiration, blood pressure, digestion and perspiration. But without official endorsement, it has not become universally accepted.'" "Excerpt:'But as of mid-November, the XMRV retrovirus research had been discredited and was suspected of being fraudulent; Mikovits sat clad in a blue jumpsuit in a California jail, accused of stealing lab notebooks and computer files from her former employer; the research program at the Whittemore-Peterson Institute was in disarray; and CFS patients were as confused as ever about the source of their illness and how to treat it. Mikovits and her employer share blame for this mess, having at the very least hugely oversold the certainty of their result and allowed an intellectual property dispute to get out of control. But a large share of the responsibility goes back to the National Institutes of Health, the Centers for Disease Control, and the researchers who engaged in the weak research those agencies funded. For decades, both agencies have propagated the idea that CFS probably isn’t amenable to any physiological treatment, that psychologically healthy people aren’t likely to get it, and hence that it isn’t an important threat to the general public. Many CFS patients came to feel abandoned by the scientific establishment. This created a climate of mistrust that breeds hero-worship and conspiracy theories and that can cast a scientist simultaneously as a savior and a villain.'"
 * 2016, Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, in STAT
 * 2015, Chronic Fatigue Syndrome Gets Some Respect, in Discover
 * 2015, Hope for Chronic Fatigue Syndrome, in Slate
 * 2015, A Disease Doctors Refuse to See, in The New York times
 * 2014, What is chronic fatigue syndrome, and why aren’t we doing more to treat the illness?, in The Washington Post
 * 2014, How the definition of chronic fatigue syndrome keeps changing, in The Washington Post
 * 2012, David Tuller Untangles the Research History of Chronic Fatigue Syndrome, The Open Notebook A Question & Answer with David Tuller and how he came to write to 10,000 word article about CFS and the PACE trial
 * 2011, Stolen Notebooks and a Biochemist in Chains, Slate

Talks & interviews

 * Aug 2017, The Loneliness of Having an Illness Science Doesn’t Understand by Lily Carollo in nymag.com


 * May 2017, An Odyssey Through a Mysterious Illness, Part 1


 * "In her new book, "Through the Shadowlands," science journalist Julie Rehmeyer chronicles her odyssey through a mysterious illness. After encountering debilitating fatigue, Rehmeyer got no answers from medical doctors other than a diagnosis of CFS--Chronic Fatigue Syndrome. Even the slightest exertion prompted severe exacerbations. After one particularly incapacitating bout, she undertook an extreme measure--a desert retreat to Death Valley. There she discovered that one component of her illness was mold sensitivity. Rehmeyer describes how volatile gasses emitted by molds can cripple the nervous systems of susceptible individuals. She emphasizes that there's no "one-size-fits-all" solution to CFS; different patients respond to different measures like diet, supplements, hormonal support, or immunomodulators. Rehmeyer has become a vocal advocate for CFS research, and briefs us on the latest advances. She also offers a critique of a much-maligned study--PACE--which concludes that CFS patients just need exercise and cognitive behavioral therapy to recover."


 * May 2017, An Odyssey Through a Mysterious Illness, Part 2


 * "Dr. Hoffman continues his conversation with science journalist Julie Rehmeyer, author of "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand", who chronicles her odyssey through a mysterious illness".


 * 2016, Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial Slideshow given at the 2016 Joint Statistics Meetings (Notes may be be viewed by clicking the “Notes” icon just above the comments section in the slideshow link.)
 * 17 Nov 2015, "Math, Science, Intuition and Chronic Fatigue Syndrome" interview on Kendra-2K podcast
 * 2014, Video of "Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses" given at the Santa Fe Institute Transcript of talk

Online presence

 * Twitter
 * Website

Learn more

 * 2015, Julie Rehmeyer on science and ME/CFS
 * 2015, Epistemically Challenged: Julie Rehmeyer
 * 2015, The debate over this mysterious disease is suddenly shifting
 * 2014, Constant Vigilance: Julie Rehmeyer’s Chronic Fatigue Syndrome Recovery Story
 * Science News Articles by Julie Rehmeyer