SICK AND TIRED

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ANNIE MINOFF: I’m Annie.

ELAH FEDER: And I’m Elah.

ANNIE MINOFF: And this is Undiscovered, a podcast about the backstories of science. A quick note to our listeners: In a couple places this episode, there is some language that you would not hear on the radio. Okay. On with our story.

ELAH FEDER: It’s February 2011 when Julie Rehmeyer reads something that upsets her.

JULIE REHMEYER: I am lying in bed, reading the New York Times on my cell phone ‘cause I’m too weak to sit up to use my computer, and I see this headline that says, Psychotherapy eases chronic fatigue syndrome, study says.

ELAH FEDER: A new study had just come out that found talk therapy could help people with chronic fatigue syndrome.

JULIE REHMEYER: And I thought, whoa, psychotherapy. Um. okay.

ANNIE MINOFF: Julie’d been diagnosed with chronic fatigue syndrome five years earlier, and she had this experience where people would tell her “it’s all in your head.”

ELAH FEDER: Yeah, so I have to admit that when I started working on this episode, I really didn’t know much about chronic fatigue syndrome. I thought it just meant people were really tired.

ANNIE MINOFF: Like everyone’s really tired.

ELAH FEDER: Exactly. But what Julie describes is much worse. On bad days-

JULIE REHMEYER: I couldn't get up and down the stairs. Um, I had to do it on my butt. And I didn't have a car. So, um, you know the metro was half a mile away. I couldn't get there. I couldn't get groceries. I couldn't get to work. I couldn't do anything.

ANNIE MINOFF: The CDC calls chronic fatigue syndrome a debilitating disorder, says you can get muscle pain, memory problems, swollen lymph nodes… You can rest all you want, this fatigue will not go away.

ELAH FEDER: And this was a big change for Julie. Before she got sick, she was a bit of an overachiever. She had a master’s in math from MIT—she’s actually a science writer by profession. And she loved exercising, even ran a marathon.

ANNIE MINOFF: She was actually in the middle of building her own house when she first got sick. It was a big straw bale house. So she’d spent her days chopping straw and lugging big buckets of mud around. And so for Julie, dragging herself upstairs on her butt, it just seemed clear that there was something wrong physically wrong with her.

ELAH FEDER: So when she sees this New York Times headline that says she might feel better with psychotherapy, it rubs her the wrong way.

JULIE REHMEYER: It was really confusing and shocking to me. It was- you know, I’m a science writer, so I respect and care about science, and at a quick glance this study looked really good.

ANNIE MINOFF: It was in the Lancet, for one thing.

JULIE REHMEYER: Which is this super prestigious medical journal.

ANNIE MINOFF: And the clinical trial was big: 641 patients.

ELAH FEDER: But the conclusions just didn’t make any sense to her.

JULIE REHMEYER: It seemed really, really wrong-headed, but I was also so sick at that point that my initial response was basically to just put it out of my head. <<laughing>> I was like, okay, this is crazy, and now I’m going to go on with my life and figure out how to get better.

ELAH FEDER: But Julie wasn’t the only one who thought this study seemed off. A handful of patients had actually been keeping tabs on this trial for years, and when the results finally came out-

NORMAN SWAN [ABC Australia clip]: This week, an enormous row over chronic fatigue syndrome. <<fades low>>

ELAH FEDER: -it set off a bitter battle, a battle pitting patients against scientists.

ANNIE MINOFF: So today on Undiscovered: What happens when scientists and patients face off?

ELAH FEDER: On one side, we have a group of researchers who’ve worked on chronic fatigue syndrome for decades, who’ve got peer-reviewed papers to back up their ideas.

ANNIE MINOFF: And on the other side, a group of patients who actually have this condition who set out to prove that this is bad science.

ELAH FEDER: Coming up on Undiscovered.

**********

ANNIE MINOFF: Physicians have been documenting illnesses that look vaguely like Julie’s for centuries, but the name “chronic fatigue syndrome,” it wasn’t coined until the 1980s.

NANCY SNYDERMAN (ON PRIMETIME LIVE): There were no warnings, no signs in the fall of 1984 that life would be any different in Lake Tahoe than it had been in all the months and years before <<fades low>>

ELAH FEDER: It’s 1984. In a small town on the north shore of Lake Tahoe, dozens of people start coming down with a mysterious illness. At first, it’s just flu-like symptoms with really bad fatigue, but then some people also report these strange neurological symptoms, like not being able to think clearly, even getting lost in their small town.

PAUL CHENEY: This seemed to be, like, evolving before our eyes from a flu-like illness into something else.

ELAH FEDER: That’s Dr. Paul Cheney talking to Primetime Live.

ANNIE MINOFF: In just six months, he and another Lake Tahoe doctor diagnose a couple hundred cases, and they guess it’s some kind of viral infection.

ELAH FEDER: But others are skeptical that this is even a disease. One physician accuses these two Lake Tahoe doctors of perpetrating a hoax. And in 1987, a CDC specialist tells the New York Times, almost every person in the United States has symptoms like this. The press is making too much of it.

ANNIE MINOFF: The CDC ends up naming this constellation of symptoms “chronic fatigue syndrome”—CFS.

ELAH FEDER: And by the way, some people prefer “myalgic encephalomyelitis” or ME.

ANNIE MINOFF: Or they split the difference and say ME/CFS. Anyway, back in the fall of 1984 Lake Tahoe isn’t the only place where these kinds of symptoms are showing up. Halfway across the world, people start coming to an infectious disease clinic in Oxford in the UK. They say they have terrible fatigue. And they think they have some kind of virus.

ELAH FEDER: The clinic eventually calls in a young psychiatrist to help them sort out what’s happening, Dr. Michael Sharpe.

MICHAEL SHARPE: So I went into the clinic, and I listened to a lot of the patients, and we formed an idea that we might be able to help them by encouraging them to be more active and to be a little bit less concerned about the idea they may be harming themselves by being active.

ELAH FEDER: To be clear, Michael says he didn’t know how these patients got sick, didn’t know the cause of their illness, but he and some others in the UK eventually settle on a treatment, or two treatments really. Psychotherapy and gradually increasing exercise.

MICHAEL SHARPE: And our early experience suggested that did help, and we all went on to do small randomized trials and found it helped.

ANNIE MINOFF: More than three decades after Lake Tahoe, we still don’t know exactly what causes this condition, or even if all these patients have the same illness. Some researchers have really honed in on the physical—they’re hunting for viruses that might cause ME/CFS. But Michael and his colleagues have a different approach. And they have theories that patients like Julie do not much care for. Take “fear avoidance theory.”

ELAH FEDER: Say, a person takes a walk, and after, for some reason, they get these weird symptoms. Things like muscle pain and extreme fatigue. Understandably, this person might start to believe that walking is bad for them.

MICHAEL SHARPE: So they started to do less. But as they did less, they got more sensitized to the symptoms, and they got rather trapped in a vicious circle of disability and symptoms.

ELAH FEDER: And now they’ve got a bad case of what the Lancet paper calls a “fear of engaging in activity.”

ANNIE MINOFF: And if you’re Julie and you’re scooting around on your butt because you can’t walk, you might it find it a little bit grating to hear that you have a fear of walking. But Julie says her problem isn’t that she’s offended by these ideas. It’s that she doesn’t think they’re true. She doesn’t think Michael’s treatments work for people with ME/CFS. Especially this thing about ramping up exercise. Because Julie says she’s tried that.

ELAH FEDER: So after she got sick, Julie thought maybe she was just out of shape, so she tried building back up with some exercise, and pretty quickly she learned never ever to push herself, to stop the instant that she felt even a little tired, or there’d be hell to pay.

ANNIE MINOFF: Like this time a few years ago, Julie went for a hike. Her house is outside Santa Fe, New Mexico. It’s in the foothills of the southern Rockies, so it’s great for hiking.

JULIE REHMEYER: There’s a stream through my property and a trail that follows the stream all the way up to the ski basin. So I loved to hike.

ANNIE MINOFF: And she’d hiked this particular route many times before. She walks along the stream, and along a canyon, and eventually starts making her way home.

JULIE REHMEYER: And a mile from home, I thought, I’m a little tired.

ANNIE MINOFF: She’s in this big, open wilderness. It’s starting to get cold. She can’t just stop there. So she pushes through and she makes it home. But the next morning, she wakes up and something’s not right.

JULIE REHMEYER: It felt like- well, partly it hurt. Like, my whole body hurt. And when I tried to move my legs, it partly felt as though my feet were glued to the ground, and so I was trying to lift them, and they just weren’t going.

ANNIE MINOFF: Eventually, she’s able to make her feet move a little bit, but it takes tremendous effort.

ELAH FEDER: She hopes that with rest it’ll go away, but it doesn’t. Day after day-

JULIE REHMEYER: -could barely get out of bed, and often couldn’t turn over in bed, which is a pretty terrifying feeling.

ELAH FEDER: How long did that go on for?

JULIE REHMEYER: A year.

ELAH FEDER: So Julie takes a hike, and she’s in rough shape for a year. But she also found that as long as she was careful, stopped exercising the second she felt tired, she could actually avoid the worst crashes and live a more or less normal life.

ANNIE MINOFF: So this idea that more exercise would help, it didn’t square with Julie’s experience.

ELAH FEDER: And yet Michael had some evidence that gradually increasing exercise—that and psychotherapy—that these treatments worked, at least for some people. And whether that’s true, whether these treatments can help, that’s an empirical question. An experiment should be able to answer it. So in the early 2000s, Michael Sharpe and a few other researchers, they get funding for a large clinical trial, over 4 million pounds, which is just a huge sum for ME/CFS research. They call this trial “PACE” which is just an acronym for all the different treatments they tested.

ANNIE MINOFF: It’s a really long acronym, sticking with “PACE.”

ELAH FEDER: Right we’re just gonna go with “PACE.” They take the patients, split them up into four groups, try out a different treatment in each group. And it’s a huge undertaking. We’re talking hundreds of patients across the UK, takes years to run this whole trial.

ANNIE MINOFF: And after almost a decade of work, they unveil the findings. First up, a paper in the Lancet. It gets written up in the Guardian, the New York Times piece that Julie read, and this segment on NPR.

MICHELE NORRIS: There's news today about an illness that affects millions of Americans: chronic fatigue syndrome. Researchers in Britain compared different treatments for chronic fatigue, and they said two stood out: psychotherapy and carefully increasing daily exercise.

ANNIE MINOFF: Here’s Michael later on in the same report.

MICHAEL SHARPE: The results were quite clear. Those of the treatments where the therapist worked with the patient to help them try gradually doing more over a period of time produced not only better functioning, they actually reduced the patient’s fatigue.

ELAH FEDER: So you hear that, and you might think it's settled, that these are your best options if you’ve got ME/CFS. Well, patients cried foul. This study, they said, is not what it seems.

ANNIE MINOFF: The results in the Lancet were just the beginning. Michael and the PACE team released more and more results over the next few years in different journals. And for many patients like Julie, these results seemed to contradict everything they’d learned in the course of their illness. And they were pissed.

JANET DAFOE: The “PACE” trials are garbage and not evidence for anything.

<<applause>>

ANNIE MINOFF: That’s the mother of a patient at a protest in San Francisco.

ELAH FEDER: Patients attacked PACE on Twitter, wrote letters to the journals.

ANNIE MINOFF: And in more polite...British ways, on YouTube.

GRAHAM MCPHEE: Frankly the authors have not earned my trust in their analysis.

ANNIE MINOFF: Just to give you a visual, this guy is sitting in an armchair, petting his King Charles spaniel.

ELAH FEDER: They even wrote a song!

SINGER 1: So 22 percent of all the folk who had ME

SINGER 2: allegedly recovered with a course of CBT.

SINGER 3: Well that was what was claimed by PACE last January.

SINGER 4: That was their briefing.

ANNIE MINOFF: Yeah. So the Lancet editor fires back. Here he is in an interview with Australia’s ABC soon after that first “PACE” paper came out.

RICHARD HORTON: One sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda.

ELAH FEDER: And our story might have ended there. Scientists do research. Scientists present their results. A group of patients doesn’t like the results. Well, don’t like the treatment? Just don’t do it, right?

ANNIE MINOFF: Well, it actually matters who’s right. It’s estimated a quarter million people have ME/CFS in the UK. Up to two and a half million in the US. So this affects a lot of people. And not just patients.

ELAH FEDER: If you’re a parent of a kid who’s sick, you’re expected to give them the doctor-recommended treatment. And there are families in the UK who’ve been investigated for child abuse or neglect when schools or doctors or social workers disagreed with the way they approached their kids’ ME/CFS—or didn’t even believe their kids were really sick at all. So everyone involved in this needs good science on what will actually help these kids. And for a while, there’s a stalemate. But then, another player enters the mix.

ANNIE MINOFF: A journalist who decided that he was going to get to the bottom of the controversy.

DAVID TULLER: I thought okay, I'm just gonna do this. Fuck it, I'm not getting paid for it, but I'm gonna go to England, and I'm going to blow these people out of the water.

ANNIE MINOFF: After the break.

**********

ANNIE MINOFF: So at this point, we have a group of patients who’ve decided that PACE—this study that recommends therapy and exercise—is bad science. Scientists disagree. They’re deadlocked. Enter David Tuller.

DAVID TULLER: Freelance journalist, and I’m a lecturer in public health and journalism at University of California at Berkeley.

ELAH FEDER: When the Lancet paper came out in 2011, the New York Times asked David to cover it.

ANNIE MINOFF: So David quickly writes up the story.

ELAH FEDER: And remember that article that Julie read that really pissed her off? “Psychotherapy eases chronic fatigue syndrome”? That’s the one David wrote.

DAVID TULLER: By the time I got back home, the story had been posted, and I already had a couple of emails pushing back on it and saying, David, you really messed up. This study’s terrible.

ELAH FEDER: David got these emails from patients. And he was inclined to listen to patients. One of his good friends actually had ME/CFS.

DAVID TULLER: And I had consistently watched him getting poor treatment, getting sick, uh, clearly to me, not somebody who was psychologically somehow creating his illness or suffering just from being out of shape, or any of those things. He was really sick.

ANNIE MINOFF: David decides to take another look at this study. And at first, it’s just a side project. But over time, he gets pulled in deeper and deeper as more papers come out about the PACE trial. Actually about a dozen in all. And the patients point out something that strikes David as very wrong.

ELAH FEDER: So back in 2007, the researchers put out a protocol. A protocol is basically like your game plan for the study. There, they explained what they’d count as success. So for example, patients answered questions about how hard it was for them to climb the stairs or bathe themselves. And based on those answers, they got a score. You had to get a low score to enter the trial, worse than a 65.

ANNIE MINOFF: And to count as recovered, you’d have improve. Up to an 85 or better.

ELAH FEDER: So far so good. But by the time the results come out, the authors have changed their benchmarks. In 2013, in the Journal of Psychological Medicine, they announced how many people had actually recovered in their trial.

ANNIE MINOFF: And here, the PACE team explained that they’d changed what counted as recovery.

ELAH FEDER: So before you needed a score of 85 or better. Now, just 60 was good enough. Okay and here’s the really weird part: 60, the score you needed to count as recovered— that’s actually lower than the score you needed to enter the trial.

DAVID TULLER: And I looked at it and I was like oh my god they did- how could they do that? They published a study where you could get worse and be counted as having met the outcome thresholds? I don't get that.

ELAH FEDER: The PACE team actually looked at four different scores, so even if you got worse on one, you still had to meet other standards to count as recovered. But those standards were also relaxed.

DAVID TULLER: And you can’t do that. You cannot just change your outcome measures and then forget about what you promised in your protocol.

ANNIE MINOFF: So technically, you can do that. No one’s gonna put you in scientist jail for changing your analysis. And they reported those changes in their paper. Explained this new definition captured recovery more accurately.

ELAH FEDER: But some patients wondered, did the researchers make these changes so that they could report more impressive results.

ANNIE MINOFF: I mean, you lower your bar for success, you are going to have more success.

ELAH FEDER: And this really matters if it changes the study’s conclusions. So if Michael and his colleagues had stuck to their original game plan, would their results look this good? Could they have claimed that any patients recovered? To answer that, patients needed to get their hands on the data.

ANNIE MINOFF: They sent dozens of information requests to Queen Mary University of London, the home of the PACE trial. And one request is particularly contentious. A patient in Australia requests the raw data. And he takes his case all the way to an information rights tribunal in the UK.

ELAH FEDER: And by this point David Tuller, the journalist, is just completely consumed by this story. He’s actually published this epic three-part, 14,000 word blog post, expounding on the study’s flaws. And he’s convinced getting the data will help prove it’s bad science once and for all. So David flies to the UK for the hearing.

DAVID TULLER: I thought okay, I'm just gonna do this. Fuck it, I'm not getting paid for it, but I'm gonna go to England, and I'm going to blow these people out of the water. Because someone has to do it, and someone has to help the patients.

ANNIE MINOFF: At the hearing, the university says the data is confidential, personal patient information. And they didn’t get permission to release it to the public.

ELAH FEDER: Okay, but they don’t stop there. They go even further. So on the first day, the university calls a witness who compares CFS activists to radical animal rights groups. If the data gets released, this witness says, these activists could track down participants and attack them.

ANNIE MINOFF: Which the tribunal is not buying. It tells the university, do it. Release the data.

ELAH FEDER: At this point, it’s been five years since the first paper was published. The university has fended off dozens of information requests, racked up 200,000 pounds in lawyers’ fees fighting this case alone. And they can still appeal, but they don’t. They finally turn the data over to the Australian patient. And it feels like a huge victory for Julie.

JULIE REHMEYER: He won. So at long last we could see what the results would have been if they had gone by their original standards for success.

ANNIE MINOFF: If the researchers had stuck to their original gameplan, could they have claimed that study participants recovered?

ELAH FEDER: So they finally have the data and five people, including the Australian patient, they get to work reanalyzing it. Three members of their team, they’re not professional scientists, but two have more traditional credentials. They’re statisticians at Columbia and Berkeley. One actually specializes in medical trials. So together they crunch the numbers.

ANNIE MINOFF: So, the findings. If the researchers had stuck to their original rules, their original protocol-

ELAH FEDER: Recovery rates plummet. In 2013, the PACE team said that those patients who got therapy or graded exercise, about one in five recovered.

ANNIE MINOFF: The reanalysis finds it’s more like one in fourteen. And this is the most important part: when they looked at recovery rates, actually compared Michael’s treatments to the control treatment, there’s no significant difference.

JULIE REHMEYER: So it was pretty amazing because if they'd gone by their original standard for success, they would have had to report a null result on recovery. They couldn't have- they couldn't have published a paper saying that patients had recovered.

ELAH FEDER: So when we talked to Michael about this, it actually sounded like he wasn’t a fan of the recovery claims, either. For Michael, it’s not about getting people 100% better.

MICHAEL SHARPE: Well, you know, this is a condition for which there is no other treatment, which is severely disabling, which renders people unable to do most of the things they do in their life. So you know, if there was a wonder treatment, this would become irrelevant. Because there is no other meaningful treatment, it's important.

ANNIE MINOFF: The real point of the trial, he said, was to figure out which treatments work best. You’ve got this buffet of imperfect options, but what is the best option. And they found with exercise and therapy, patients improved the most.

ELAH FEDER: But of course, if you’re sick, what you’re interested in knowing is not which treatment is technically, relatively speaking, the best one. What you want to know is, is it any good, like, how much better can you expect to get? So let’s take a closer look here. One way the researchers measured improvement is with a six-minute walking test. It’s kind of what it sounds like. You walk as far as you can for six minutes.

ANNIE MINOFF: And after a year, the patients who did graded exercise, they improved. A little. From 312 meters to 379 on average.

ELAH FEDER: Right, so that’s like saying that at the beginning of the year when they’re still sick, before the treatment, they’re walking about three quarters around an athletic track. By the end of the year, they’re getting a bit closer to a full lap.

ANNIE MINOFF: So that’s an improvement, but even going a full lap, that’s not a good result.

ELAH FEDER: Okay, to put this in context, doctors actually use this test with lung and heart disease patients. Obviously, this is a different condition. But in one study they found that patients that were walking less than than 400 meters, less than that full lap around the track, they were good candidates for a lung transplants. So participants in this trial, in the exercise treatment, the ones that showed improvement, they still fell short of that cutoff. They were still walking slower than lung transplant candidates. So when I looked at this, it actually it broke my heart a little bit. Because I was just thinking about these these patients who participated in this trial, committed to their treatments-

ANNIE MINOFF: -going to the clinic regularly, doing the exercises-

ELAH FEDER: -and then after a year put through a sort of a race, a test. They have six minutes, and they have to walk as fast as they can, see how far they’ve come in a year. And most of them haven’t come far at all. And it’s not just this test. Participants in this trial, they didn’t get off welfare, they didn’t go back to work.

ANNIE MINOFF: So Michael argues none of these numbers are perfect, objective measures of health.

ELAH FEDER: Right.

ANNIE MINOFF: Like the six minute walking test—where you do the test and the kind of instructions you give, that can really affect the results.

ELAH FEDER: Which is true. Except it means that what we’re left with are patients who don’t seem to be walking very fast, haven’t gone back to work. On questionnaires, some do say they’re doing better.

ANNIE MINOFF: Mm-hmm

ELAH FEDER: but even on these self-reported measures, most are still not well enough to count as recovered. And I guess that’s my biggest problem with this study. You know, you’ve got papers saying that a fifth of people recovered, that 30% are back in “normal ranges.” Which sounds really good. But if you actually dig into this, if you look at it more closely, you know, it doesn’t seem these treatments are offering much. And yet these claims sure make it sound like they do.

ELAH FEDER: At this point, if you’re thinking this is a terrible study, you should know that the journals disagree. The Lancet declined our request for an interview, but their public statements suggest they think it is a good study, and it’s been unfairly targeted.

ANNIE MINOFF: But David Tuller, the journalist, his work has had an impact. Because of him, a group of 42 scientists have signed an open letter to the Lancet calling for an independent investigation. The flaws in this trial, they said, have, “no place in published research.”

ELAH FEDER: In March, dozens of scientists and doctors called for the Journal of Psychological Medicine to retract their paper. And another journal, PLOS ONE, has issued an expression of concern about the researchers’ refusal to share some of their data. But so far none of the papers coming out of this trial have been retracted. They stand. Even so, Julie feels vindicated. She says that the patients have won. They brought the flaws to light. And that’s good for science.

JULIE REHMEYER: In the end science is winning, you know. Like, the way this trial is getting taken down is through these very careful scientific arguments and through looking at the data and analyzing it.

ANNIE MINOFF: And that is key. These patients used science to challenge other science.

ELAH FEDER: Right. So making this story, I was worried that people would miss this point. Think that the lesson was that hunches are as good as science and data. But these patients they actually analyzed the methods and the data, they teamed up with experts, ended up publishing their re-analysis in a peer-reviewed journal. So this isn’t hunches vs. science. It’s actually, it’s science vs. science.

ANNIE MINOFF: And that’s supposed to happen! Right the strength of science is in this process —of debating and testing and reevaluating—that hopefully over time gets us closer and closer to the truth.

ELAH FEDER: But Julie says this actually leaves out a really important point, which is debating and reanalyzing, that doesn’t just happen by itself.

JULIE REHMEYER: I hate the notion that science is self-correcting because it relieves us of the responsibility to go correct it. And the fact is, in this circumstance, the only reason that we're correcting this science is because a bunch of patients were willing to work for years, often at significant cost to their own health, while they were being vilified. And if we imagine that science corrects itself just naturally, we're not going to do the work that it takes.

ELAH FEDER: This whole fight took a toll on everyone. The Australian patient who fought to get the data, I contacted him for an interview, and he said he wasn’t well enough right now. Another patient told me it was actually this whole process that caused him to get a lot sicker.

ANNIE MINOFF: This whole thing’s been really hard on the researchers too.

MICHAEL SHARPE: It does take its toll. Uh, so of— of the investigators, uh, one has taken retirement for which-which was what part- one of the contributing factors, has taken early retirement. I've been working in a different area in helping cancer patients and-and some of the other colleagues have kept going, but many have not wanted to continue in this field because it's just too too hard going.

ELAH FEDER: And maybe it doesn’t need to be quite this hard. I mean one of the most painful parts of this whole saga was just the fight to get the data released.

ANNIE MINOFF: In fact Michael told us that if he were gonna do it all over again, he'd do it differently.

MICHAEL SHARPE: Because remember we planned this trial in early 2000s. You know, freedom of trial data wasn't a big thing then. I think if we did a trial again, we would probably ask the patients if they will be happy for their data to be released. So there’d still be concerns about it, but that would go some way to addressing that.

ELAH FEDER: If the researchers had planned on sharing their data from the start, it might’ve saved a lot of grief. Maybe they could’ve avoided all those information requests and thousands of dollars in lawyers’ fees.

ANNIE MINOFF: It’s also just a matter of principle. Ivan Oransky, a journalist who reports on scientific retractions, he says if you’re doing science, you have to show your work.

IVAN ORANSKY: Science is predicated on the notion that you can actually take a look at the work somebody did, you can take a look at the data, and figure out whether it holds up.

ANNIE MINOFF: And he’s emphatic on this: this is fundamental to science.

IVAN ORANSKY: If you aren't sharing your data I think it's actually maybe a little bit hyperbolic, but it's actually somewhat fair to ask whether you're really doing reproducible science. Full stop.

ELAH FEDER: Used to be you’d publish a paper, and maybe another scientist writes the journal and critiques your work. Now, with the internet, non-scientists, they can easily read up on the issues that affect them and weigh in themselves. So this isn’t the first or the last time that scientists and non-scientists are going to clash publically. And that might be uncomfortable. It might not always be civil. But if done right, this can be an opportunity for new and thoughtful voices to get involved. And showing them the data means that, at least in theory, their contributions are better informed. So of course sharing data isn’t a cure-all. It won’t resolve all scientific debates. I mean, the PACE trial data is out now, and people are still disagreeing about what it means. But at least now, the study’s critics and defenders alike are able to look at a shared set of facts. That’s a foundation for debate, and well, that’s a start.

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ELAH FEDER: Undiscovered is reported and produced by me, Elah Feder.

ANNIE MINOFF: And me, Annie Minoff. Our editor is Christopher Intagliata. Thank you to Danielle Dana, Christian Skotte, Brandon Echter and Rachel Bouton.

ELAH FEDER: Our guest, Julie Rehmeyer just published a memoir called Through the Shadowlands, where she talks about her experience with chronic fatigue syndrome.

ANNIE MINOFF: Fact-checking help by Michelle Harris. Original music by Daniel Peterschmidt. I Am Robot and Proud wrote our theme.

ELAH FEDER: Special thanks to our launch partner, the John Templeton Foundation. You can find more Undiscovered on Twitter @undiscoveredpod or on our website undiscoveredpodcast.org

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