Podcast appearances and mentions of julie rehmeyer

Julie Rehmeyer is a science writer who studied math at MIT. She also lives with Chronic Fatigue Syndrome, a disease that many doctors treat with skepticism bordering on derision. So when traditional medicine couldn’t help her, she had to try treatments science couldn’t support. Julie’s book is Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand

In part 2 of my interview with mold warrior Erik Johnson, he tells about the lengths he’s had to go to get and keep himself healthy. Erik terms his approach ‘extreme mold avoidance’ - and that involves a modified and mold-free camper vehicle, and also mapping, and then avoiding, areas and buildings with high levels of toxic black mold Stachybotrys Chartarum. Erik has been relentless in his efforts to bring awareness to the public, patients and researchers that toxic mold is an element of ‘chronic fatigue syndrome’.  Yet there is resistance by the Centre for Disease Control, by researchers, and by the medical profession, to consider or acknowledge how unseen toxic mold in our workplace, public and home environments may be making many people very sick. As you will hear Erik explain, there has been incredible pressure to hide the impact of toxic mold on human health. Erik also shares how the derogatory label of ‘chronic fatigue syndrome’ re-classified an entire illness from an ‘infectious illness’ diagnosis, to the ‘all in your head’ insult. SHOW NOTES Erik's Mold Map 0:05:15 The whole point of redefining CFS (chronic fatigue syndrome) was to put distance between CFS and the initial incident it was based on to keep it in maximum confusion - and loosened up on the psychiatric exclusion, whereas Holmes (definition) was clear that psychiatric must be excluded 0:06:00 When Erik saw strong connection between mold and CFS, he proposed to Dr Cheney that since he was focused on the viral factor, Erik would focus on the mold factor 0:07:00 The 1994 study by Chester Levine "Association of concurrence between sick building syndrome and CFS: Epidemic neurasthenia revisited" - was a study of clusters, including Truckee school - mentions other clusters including Elk Grove in California, where same exact malady emerged in teacher in a sick building 0:08:00 It took Erik several years to find out what specific mold was involved, but it was Stachybotrys Chartarum (SC), the dreaded black mold, same as the Lake Tahoe - Erik thought this should be included in the CFS criteria so that they become a putative mold reactivity patient 0:09:00 If CFS patients have mold reactivity, they can be instructed on how to avoid it and reduce symptoms - Erik tried to identify the worse place / buildings in Lake Tahoe and created a map to avoid them and started to recover 0:10:00 Erik thought he could maximize his recovery be spending more time in the nearby Nevada desert - he was eager to get back into aviation and hanging out a small airport - one day he sees a 'crazy man' out in the desert heat raking, by hand, a 700 foot landing strip 0:11:00 Nearby was a tractor with rake attached, set up to do the job - Erik asked him about it and got a strange look, as his mental wheels were turning - he said 'I've got this strange illness, I'm from Incline Village, Nevada, and doctors tell me I have CFS, and I come out to the desert because it is the only thing that helps' - he was coming to the desert for the exact same reason as Erik 0:12:00 They started telling other people - and taking them to the 'toxic' areas of town to see if they reacted and decide if they wanted to try to avoid mold - this is how the CFS Mold Tour began - he's taken many prominent people on this tour, author Julie Rehmeyer (Through the Shadow Lands) and she became a mold avoider Powerful Neurotoxin 0:13:00 Jennifer Brea, director of documentary Unrest also got Mold Tour and realized she needed to avoid mold too - what is curious to Erik, is that no researcher enquired about why Jen was avoiding mold in her documentary 0:14:00 Erik has asked researchers at screenings of Unrest why they think Jen is doing that - but he has not been able to drum up any interested researchers - because SC is one of the most powerful neurotoxins known to man, it is essentially like nerve gas, so neuroinflammatory - repeated exposures cause neurological symptoms similar to nerve agents 0:15:00 The chronic inflammation puts stress on the nerves that the electrical impulses in the nerve become inhibited, and to compensate, the nerves thicken their myelin sheath to help nerve impulses and restore function 0:16:00 For a long time, researchers assumed these neurological symptoms were close to multiple sclerosis (MS) - so with intracranial hypertension, neurological information from toxic mold exposure, where the physical damage perpetuates symptoms, like in Chiari Malformation where the brain is literally pushing itself out of the skull, opening pressure on spinal taps, and spinal fluid leaks 0:17:00 Erik thinks breakdown of ligaments and collagen contribute to neck problems in some CFS patients and is due to downstream effects of chronic inflammation over years - Erik's health did pretty good for a few years 0:18:00 Erik would also check wind direction to avoid toxic areas, and being down wind of them, in town - if he couldn't avoid these areas, he would shower and change clothes as soon as possible 0:19:00 By reducing inflammatory response and cytokine cascade, he's been able to live like a normal person - Erik had to find a home free of mold - he also built a camper out of mold resistant materials to drive around that had a shower in it 0:20:00 This allows him to decontaminate quickly - but in 1994 he slowly started getting worse - turns out it was neighbouring houses, the sewer - Erik got sicker and sicker and went to Dr Peterson 0:21:00 But Dr Peterson was too busy with his viral interests - Erik got worse, almost bed ridden again - Erik was diagnosed, again, with CFS with reactivated HHV6 - Dr Peterson said Erik's only option was the drug Ampligen, an experimental medication that pushes the immune system into high gear     Desert Living   0:22:00 Some people have a spectacular response to Ampligen - but free Ampligen in the trial was only open to very sick / bed ridden patients - since Erik could still walk, he would only be eligible for the cost recovery program, but Ampligen cost about $60k / year and Erik could not afford that and his insurance company had canceled his insurance because he had CFS 0:23:00 Erik decided to try even harder to avoid mold, extreme avoidance and see if he could max out his health - Dr Peterson didn't think it would work, but since Erik couldn't afford Ampligen, what was there to lose - Erik bought a camper and drove it to the desert and spent as much time as possible in pristine environments and once again his health improved 0:24:00 Within 6 months of extreme mold avoidance, Erik was climbing Mt Whitney, the tallest mountain in connected USA, 13,500 feet high and a 25 mile hike - takes about 20 hours to climb 0:25:00 Erik thought that climbing Mt Whitney as a CFS patient avoiding mold would be impossible for researchers to ignore - but their reaction was 'how nice for you' 0:26:00 Erik says that mold is the common factor in all these clusters - but researchers don't want to investigate the mold aspect - he hopes one day we'll know why they are not interested 0:27:00 CFS emerges after a trigger, usually a viral infection - researchers focus on the trigger as if it was the sole cause 0:28:00 From the moment the CDC (Centre for Disease Control) announced they intended to collate the results, Erik began contacting CFS researchers and explaining he was the prototype patient for CFS, but he did not get one positive response 0:29:00 By the time the 1988 Holmes definition of CFS was published, Erik realized this was more than just a scientific endeavour, and more than documenting the toxic mold aspect, it was sociological research to see how researchers would handle a situation like this, and that's how Erik approached CFS research 0:30:00 Erik created a standard phrase to see how doctors and researchers responded: "I'm an Incline Village survivor and prototype patient for the 1988 Holmes criteria, would you like to hear about it?" - never, not once over 30 years has Erik had a positive interest response, it is mind boggling     Confidentiality Agreement   0:31:00 When Osler's Web came out, Erik already realized he was getting 100% negative response from researchers and no interest in following up on the Lake Tahoe outbreak - but Erik couldn't believe that on page 25, the Truckee teacher cluster - Erik's teachers - is clearly described - when Erik makes his assertion that CFS was never investigated, it sounds unbelievable - but those teachers told Holmes there was something in that school room 0:32:00 In Osler's Web, it talks about the disdain Holmes had for these teachers - on page 49, a couple of patients ambush Dr Holmes and explained about that school room and the infrequently changed air filters in that room and asked him to examine the air filters in that room 0:33:00 Turns out the filters did have the toxic mold SC - the school realized they had toxic mold and hired remediators to clean it up and the incidence of illness decreased - the school and its teachers, remediators, towns people and local doctors know about this - but not CFS researchers 0:34:00 Erik went to CFS symposiums and said he could take them to the locations and introduce them to the remediators who cleaned up the mold - Erik ran into a problem: the school authorities did want people to know about it, the teachers are fearful of repercussions so keep quiet - and the remediators said they couldn't disclose because they had a confidentiality agreement with the schools 0:35:00 So the only person who has no vested interest and willing to describe it is Erik - the remediation of the mold was in the newspapers - so clearing up CFS is simply doing some epidemiology research 0:36:00 Erik climbs Mt Whitney every year to celebrate his recovery - he posts about it online and how has helped other people recover from CFS - author Julie Rehmeyer is the most high profile person he's helped - she wrote an article for the Washington Post: What is CFS and why is more not being done to study this disease? 0:37:00 In the 2015 article Julie describes how none of the other treatments her doctor had tried had much effect - Julie heard about the extreme mold avoiders and decided to come to Incline Village and Erik took her the sick buildings - after a short period of mold avoidance her post exertional malaise symptom had disappeared and she was climbing mountains     Media Interest, But No Researcher Interest   0:38:00 So we have a direct intervention for CFS and it deserves research - but still, no researchers have looked into mold in CFS 0:40:00 SC has been studied quite a bit, but only known in the mold community, not in the CFS community - the CDC puts pressure not to research mold - they don't want this very expensive problem to come to public light 0:41:00 Because a lot of schools and public buildings will be affected - the CDC did its own toxic mold investigation in 1984 and found exactly what they didn't want to find and they buried that research through paralysis by analysis - but stated that nothing conclusive was discovered and more research is needed, but they didn't do it 0:42:00 Erik has returned to flying, a very expensive hobby, and mold avoidance is a very expensive therapy and includes avoiding sick buildings and immediately decontaminating if he is exposed - so that curtailed how much flying he could do, so he turned to mountain climbing and hiking - Erik does a ton of advocacy work around mold, and that doesn't pay, he hasn't made a dime 0:43:00 Erik goes to the ME/CFS conferences and tells his story to researchers as they take an active disinterest - like Hillary Johnson said, the politics is so compelling it draws you back in, its unique, and the sheer unbelievable, bizarre aspect that keeps sucking Erik back in - he can't believe this happened and the medical and research communities behaved in this way 0:44:00 Erik believes to fix the problem, it needs to be brought to light - the medical profession needs to realize they've committed an epic failures in their entire history - perhaps the embarrassment will force them to reconsider how they do business 0:45:00 Erik doesn't think any one will believe or understand this complex convoluted history until a movie is made about it - Erik's basic premise is that a researcher would want evidence, and so Erik developed a test 0:46:00 Back in the 1800s when Ignaz Semmelweis, a Hungarian physician in Austria, discovered that hand washing killed germs - he noted that the 2 health clinics had different mortality rates - the midwife's clinic had a very good success rate, but the doctor's clinic had an unbelievably high mortality rate from childbed fever (puerperal sepsis)     Money Can't Buy A Ride Like This   0:47:00 A pathologist doing an autopsy on a childbed fever death, nicked himself and he then died of the same illness - this suggested something, 'cadavers particles', had been transferred to the doctor through the blood - Semmelweis implemented hand washing with lyme / bleach and instantly reduced the mortality rate at the doctor's clinic - there were no autopsy's at the midwife's clinic 0:48:00 Semmelweis didn't know it was germs, but he didn't need to - he only needed to note that there was difference between the buildings and start to investigate - the history of CFS is similar: sick buildings making people sick 0:49:00 But no current researchers are investigating - in effect, there are no more Semmelweis - Erik has used the internet to get this info out and spending a lot of time in social media groups building up a following to put pressure on researchers and all this will come to light 0:50:00 Why does Erik keep doing advocacy? Hillary Johnson described Dr Cheney when he was in the middle of his fight with the CDC as saying "Money can't buy a ride like this"       Connect with Erik Johnson:   Facebook: The Erik Johnson Effect   Twitter: @ErikMoldWarrior   ______________________________________________     Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com      Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk. Remedies Counseling - Making Life Better

Julie Rehmeyer, author of Through The Shadowlands, talks chronic fatigue syndrome/myalgic encephalomyelitis, mold illness, and taking your health into your own hands.  Transcript Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. I’m really excited about today’s episode, but before we get to it I have … Episode 25 – JulieRead More » The post Episode 25 – Julie appeared first on No End In Sight.

Today we have a particularly challenging topic for me, as the disease we're going to discuss hit my immediate family—twice. We're talking about a condition so complicated and confusing that it goes by different names: ME or Myalgic encephalomyelitis, and CFS or Chronic Fatigue Syndrome. But, regardless of the name, it's a chronic, complex, systemic disease, that profoundly limits the health and productivity of the 2.5 million American patients it affects, as well as those who love them and who care for them. Here to give voice to the millions of people affected by ME/CFS are two wonderful Wellesley women: Carol Head and Julie Rehmeyer. Carol Head is the president of the Solve ME/CFS Initiative, and has over 25 years of experience as an executive in both the for-profit and non-profit sectors. Also joining us is author Julie Rehmeyer. Julie is an award-winning freelance math and science journalist, and is the author of Through the Shadowlands: A Science Writer's Odyssey Into an Illness Science Doesn't Understand. Both of my guests directly experienced the affects of ME/CFS, and have gone on to share their stories and help others struggling to overcome the ME/CFS.

Can you imagine your house making you sick? Or being so susceptible to something that merely being near it can paralyze you? Julie tells us all about how she realized she was chronically ill as a result of mold exposure, leading to her having to move out of her house and ultimately get rid of most of her things. This path of discovery, along with learning to manage her chronic fatigue syndrome, lead her to write a book to share her experience with others.  Julie Rehmeyer is the author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand, about how she combined science and intuition to find her way through chronic fatigue syndrome and mold illness. She is an award-winning journalist and a contributing editor to Discover Magazine. Her work has appeared in the New York Times, the Washington Post, O Magazine, Discover, Science News, Wired, and many other publications.   Connect with Julie at:  ThroughTheShadowlands.com Facebook: https://www.facebook.com/julierehmeyerauthor/ Twitter: @julierehmeyer

Julie Rehmeyer is a math and science journalist and author of “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand.”

Julie Rehmeyer was so sick she sometimes couldn’t turn over in bed. The top specialists in the world were powerless to help, and scientific research on her disease, Chronic Fatigue Syndrome, was at a near standstill. Having learned from a total stranger that mold may be the culprit, she took a leap of faith, drove into the desert to avoid mold completely and began her journey to wellness. An incredible story that will give us all hope in our own journey to wellness. By avoiding mold completely, Julie will be at almost 100%. But as you can imagine, it is difficult to avoid mold all the time. There seems to be genetic susceptibility to mold. But is also a culmination of things: living in old travel trailers, was pushing her body really hard in the process of building her house where there probably was exposure to mold, stress due to her husband’s illness and other factors. Yet, her genetic susceptibility made it worse. Once you get sick, your susceptibility for it goes up significantly.   Chronic Fatigue Syndrome- What Is It And How Do You Get Diagnosed? The name doesn’t capture the severity of the illness. One of the criteria is exercise intolerance. Being chronically fatigued the day after working out. Important to rest up and relax. If it doesn’t go away, there may be CFS present. If you can’t think straight, your heart rate goes up when you stand up, and high blood pressure, these could be symptoms.   What do you do if you have these symptoms? First of all, don’t overdo it. Most doctors won’t suggest that. You have to learn to stop as soon as you feel tired, and not push through. If you learn to pace yourself when you have relatively mild symptoms, you have a better chance of recovering. Go to your doctor, recognize that most doctors know almost nothing about this disease. So you have to be cautious about what most practitioners have to say about it.     Resources for ME/Chronic Fatigue Syndrome The greatest wisdom is in the patient community. You need to be careful and vet everything. What works for someone else may not necessarily work for you. Pay attention to what you read, pay attention to your body and experiment carefully. Some suggested resources: Paradigmchange.me which offers information about the role of mold toxins in chronic illness. Phoenix Rising Forum– online community for ME/Chronic Fatigue Syndrome Follow Julie Rehmeyer on Facebook– you can learn from other people’s experiences and comments. Facebook- find groups, more informal setting.   Mold- What Should We Know And What To Avoid Not all molds are dangerous. Cheese is made out of mold, and clearly not dangerous to our well-being the way CFS is. Mold is a stand in word. Mold grows on drywall and insulation. Mold produces toxins and spores that end up in the air. There’s bacterial and compounds in air and water damaged buildings. There is mold in all of that, that creates a reaction in people, but there isn’t enough information to pin point which one created her illness. We know that if there’s mold in your house, you have to get rid of it. Unfortunately, you can’t say there’s no mold in your house if you can’t see it so that’s not what’s making you sick. You’ll need to do a big experiment to get rid of mold, to see if over time that is what was affecting you. The only way you’re going to do this is if you’re really ill and nothing else makes sense. There are relatively standard tests your doctor can run to determine if mold is an issue for you.   Julie’s Book: Through The Shadowlands When she got really sick, it became urgent to her that she needed to write a book about Chronic Fatigue Syndrome with her experience and other people’s experience. In the process of eliminating mold, all her experience led to a book that became a personal memoir. It’s a book that even if you don’t have CFS will be a good read. Along the lines of Eat, Pray, Love…it’s a fun beach read. Aside from being a great story, has a lot of information and ends in a love story.   15 Day Fat Loss Kick Start Ebook Download your FREE copy here!! DOWNLOAD!   Check your email. You will receive access for instant downloading. We respect your privacy- We will not rent, spam or sell your email. About Julie Rehmeyer: Julie Rehmeyer is an award-winning math and science journalist and contributing editor at Discover magazine. Her work has appeared in  the New York Times, the Washington Post, Discover, Science News, Aeon, Wired, High Country News and many other publications. In 1999, she began to show the symptoms of chronic fatigue syndrome (ME/CFS), and by 2011, she was so sick that she sometimes couldn’t even turn over in bed. Determined to regain her health, she embarked on a journey that challenged her preconceptions about science, as she discovered shocking problems with our system of medical research. Her quest for wellness took her far from medical orthodoxy—and to a life that was more satisfying than she could have imagined. She chronicles her experience in Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. Links and Resources To learn more about Julie Rehmeyer visit her website | Facebook page  Book: Through The Shadowlands If you missed it, listen in on our last podcast episode: Is Your Thyroid Giving You the Middle Finger?, #61 Follow our 66 Day Meditation Challenge on our private FSL Modern Community on FB.

We offer two feature interviews on today's show. Chronic Fatigue Syndrome (start time: 11:49)  Imagine spending years waking up so sore and fatigued many mornings that you can barely move. And traversing the country to find doctors who could offer a clear diagnosis, only to find out they don’t really know. And feeling your friendships and professional relationships start to fray, as people question whether you’re making up your illness. For those who have suffered from chronic fatigue syndrome (CFS, or ME), or a similar disease, Julie Rehmeyer's story may sound painfully familiar.  The science and math writer talks with host Susan Moran about her new book about the illness, called Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand. Rehmeyer will speak about her book on Thursday at 7:30 p.m. at the Boulder Book Store. Renewable Energy Debate (start time: 3:20): A bitter scientific debate, as reported in the Washington Post, has surfaced among two scientific groups that are both pushing to decarbonize U.S. electricity generation. On one side  are experts such as Boulder mathematician Christopher Clack, who contends in a new analysis that the U.S. can cut its carbon emissions by nearly 80%, using existing technologies, by  2030. On the other side of this feud is Mark Jacobson, an atmospheric scientist and engineer at Stanford University. He claims the nation can move to 100% renewable energy by 2055. This week, in a peer-reviewed analysis published in the Proceedings of the National Academies of Sciences, Clack and colleagues call Jacobson’s vision of 100% renewables unrealistic, and says his calculations and modeling are full of errors. Jacobson and his group have countered Clack et al’s analysis is full of errors. Dr. Clack, founder of Vibrant Clean Energy and with NOAA and the University of Colorado Boulder when he conducted this research, talks with host Shelley Schlender about the science, the debate, and what it means for the pursuit of clean energy. Hosts: Susan Moran, Shelley Schlender Producer: Susan Moran Engineers: Maeve Conran, Shelley Schlender Executive Producer: Susan Moran Listen here to the show:    

When researchers publish a new study on chronic fatigue syndrome, a group of patients cry foul—and decide to investigate for themselves. A landmark study on chronic fatigue syndrome sets off a multi-year battle between patients and scientists. On one side, we have a team of psychiatrists who have researched the condition for decades, and have peer-reviewed studies to back up their conclusions. On the other, a group of patients who know this condition more intimately than anyone and set out to expose what they think is bad science.     (Original art by Claire Merchlinsky)   A note to our listeners: This episode references studies that are both controversial and complex. Our interest is always to provide accurate and complete information to our listeners, and to provide context in which the science we cover can be understood. To that end, we’d like to share additional information on the efficacy of cognitive behavioral therapy and graded exercise therapy as treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Two systematic reviews (studies of studies) by The Cochrane Collaboration examine cognitive behavioral therapy and exercise as treatments for ME/CFS. These may help contextualize the findings of the PACE trial and aid our listeners in drawing their own conclusions.   GUESTS Julie Rehmeyer, author of "Through the Shadowlands" Michael Sharpe professor of psychological medicine at Oxford University David Tuller, journalist and visiting lecturer at UC Berkeley Ivan Oransky, journalist and co-founder of Retraction Watch   FOOTNOTES The PACE trial home page, includes trial materials, FAQ, and links to the papers that came out of the trial. The PACE trial data and readme file. Virology Blog including David Tuller’s original three part series criticizing PACE (“Trial by Error”), as well as responses from the authors, and more. Patients’ first reanalysis (published on the Virology Blog) of the PACE recovery paper. They later published the re-analysis in the journal Fatigue and the PACE researchers responded to the patients’ re-analysis. PLOS ONE expression of concern, including a response from the authors. Retraction Watch’s recap of the legal proceedings regarding Alem Matthees’ request for anonymized trial data.   CREDITS This episode of Undiscovered was reported and produced by Elah Feder and Annie Minoff. Editing by Christopher Intagliata. Thanks to Science Friday’s Danielle Dana, Christian Skotte, Brandon Echter, and Rachel Bouton. Fact-checking help by Michelle Harris. Original music by Daniel Peterschmidt. Our theme music is by I am Robot and Proud. Art for this episode by Claire Merchlinsky.  

When researchers publish a new study on chronic fatigue syndrome, a group of patients cry foul—and decide to investigate for themselves. A landmark study on chronic fatigue syndrome sets off a multi-year battle between patients and scientists. On one side, we have a team of psychiatrists who have researched the condition for decades, and have peer-reviewed studies to back up their conclusions. On the other, a group of patients who know this condition more intimately than anyone and set out to expose what they think is bad science.     (Original art by Claire Merchlinsky)   A note to our listeners: This episode references studies that are both controversial and complex. Our interest is always to provide accurate and complete information to our listeners, and to provide context in which the science we cover can be understood. To that end, we’d like to share additional information on the efficacy of cognitive behavioral therapy and graded exercise therapy as treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Two systematic reviews (studies of studies) by The Cochrane Collaboration examine cognitive behavioral therapy and exercise as treatments for ME/CFS. These may help contextualize the findings of the PACE trial and aid our listeners in drawing their own conclusions.   GUESTS Julie Rehmeyer, author of "Through the Shadowlands" Michael Sharpe professor of psychological medicine at Oxford University David Tuller, journalist and visiting lecturer at UC Berkeley Ivan Oransky, journalist and co-founder of Retraction Watch   FOOTNOTES The PACE trial home page, includes trial materials, FAQ, and links to the papers that came out of the trial. The PACE trial data and readme file. Virology Blog including David Tuller’s original three part series criticizing PACE (“Trial by Error”), as well as responses from the authors, and more. Patients’ first reanalysis (published on the Virology Blog) of the PACE recovery paper. They later published the re-analysis in the journal Fatigue and the PACE researchers responded to the patients’ re-analysis. PLOS ONE expression of concern, including a response from the authors. Retraction Watch’s recap of the legal proceedings regarding Alem Matthees’ request for anonymized trial data.   CREDITS This episode of Undiscovered was reported and produced by Elah Feder and Annie Minoff. Editing by Christopher Intagliata. Thanks to Science Friday’s Danielle Dana, Christian Skotte, Brandon Echter, and Rachel Bouton. Fact-checking help by Michelle Harris. Original music by Daniel Peterschmidt. Our theme music is by I am Robot and Proud. Art for this episode by Claire Merchlinsky.  

Julie Rehmeyer by Deep Science Radio

Julie Rehmeyer Unabridged by Deep Science Radio

Today we had a terrific show with two local guests.  First, Sarah McQuate, Post-Doc at the University of Colorado joins us to talk about CUCafe, a student run group committed to creating dialogues and safe spaces for underrepresented student on campus.  We talk about their role in the most recent Inclusion and Diversity Summit on campus along with their on-going efforts and events. cucafeseminar.wordpress.com   Next, Julie Rehmeyer, a award-winning science tells us about her experience as a math graduate student at MIT and her investigative research into Chronic Fatigue Syndrome.  These two stories form interesting connections as we discuss the meaning of intuition; a skill that is acknowledge as powerful in the mathematics community but not necessarily cultivated or nourished.  Additionally, Julie finds resilient solutions using her analytical and intuitive skills when enduring a incapacitating experience with Chronic Fatigue Syndrome, treatment for which is scarce and poorly understood in the scientific community. HERE is here latest article on the research of CFS Hosts: Susan Moran, Kendra Krueger Producer: Kendra KRueger Engineer: Kendra Krueger Executive Producer: Beth Bennett Additional Contributions: Joel Parker Listen Here:

Julie Rehmeyer writes about mathematics and science for Science News, Wired, Discover and other magazines. Julie and I discuss a bunch of things. Do you have a story of when you first realized that you really liked math? How did you get into writing about math and science? Have you always been a writer? Tell us about your math education and how that's served your writing career. You've written quite a number of articles for Science News and for Wired Magazine. Where do your ideas for articles come from? And, what's your secret for weaving mathematical ideas into interesting stories? Would you share your process of going from an idea to a completed article? What's the interaction like with the publisher? How long does it take to write an article? What's your writing process like? What's a typical day like? Is there a favorite article or two among the many you've written? I notice that there are very few women math communicators. Why is that? And, which other women should I try to interview for this series? What advice would you give to girls and young women (or really anyone) who think they might want to become math writers? The question I ask everyone: What advice would you give to a parent whose child was struggling with math in school?