David Tuller Untangles the Research History of Chronic Fatigue Syndrome

David Tuller

David Tuller

David Tuller has never shied away from controversial stories. Writing for The New York Times for the last dozen years, he has covered a wide range of topics, including infectious diseases, gay men’s health, his mom’s 80th birthday, and most recently, chronic fatigue syndrome. Tuller recently wrote a long piece that painstakingly examines, in a way that few if any other journalists have, the role of the U.S. Centers for Disease Control and Prevention in the twisted history of research on this hotly debated illness. Here he tells Julie Rehmeyer about the complexities of covering a disease that is little understood and often scorned, and about how he published the story after editors turned him down. “Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale” appeared in virologist Vincent Racaniello’s blog in November 2011. (This interview has been edited for length and clarity.)

 

What made you interested in writing about chronic fatigue syndrome?

I had a friend who was diagnosed with CFS about 20 years ago. I knew him before he developed CFS and I watched him all these years. He got me interested in XMRV [the virus that for some time appeared to be a possible cause of CFS—a link that has now been discredited]. The more I looked into it, the more interesting and complicated it was as an issue.

The first time I became aware of your work was last February. I myself have had CFS for years, and it had suddenly gotten so bad that for two months, I had rarely been able to get out of bed and was sometimes too weak to even turn over.

I opened The New York Times one morning and read a story of yours on the controversial PACE study, which claimed that cognitive behavioral therapy and graded exercise therapy are effective therapies for CFS patients. Your story said, “While this may sound like good news, the findings … are certain to displease many patients and to intensify a fierce, long-running debate about what causes the illness and how to treat it… [The study] is expected to lend ammunition to those who think the disease is primarily psychological or related to stress.” But the story didn’t give much context to help readers understand the patients’ discontent or evaluate whether the illness is organic or psychological. Although the story alluded to the controversy around the definition of CFS, it didn’t cite any of the mountain of evidence for physiological abnormalities in CFS patients or quote the many clinicians and researchers who had criticized the study and even considered its recommendations dangerous.

You’ve since written more critically about that research—first in a follow-up story in the Times, and most recently in the lengthy article you wrote on the virologist Vincent Racaniello’s blog. What made you take a deeper look at CFS after that initial story?

When I wrote that first story about the PACE study, I’d been focusing primarily on XMRV, not CFS more generally. I didn’t understand the problem with case definitions [a set of criteria for what symptoms should be required for a person to be diagnosed with CFS], and there was a context of controversy that wasn’t part of my awareness at the time. I wrote that story in a couple hours on deadline. It wasn’t until afterward that I realized that this wasn’t the piece I would have written had I known more about it.

I will say, though, that my story was better than most of the others on it, which for the most part didn’t have any caveats.

What dissatisfied you about the story?

I was driving home when it appeared, and by the time I got home I had half a dozen emails about the piece. I realized that I hadn’t focused on the issue of the case definition. I’ve been a public health student and I teach reporting about public health [at the University of California-Berkeley Graduate School of Journalism and School of Public Health’s new concurrent Master of Public Health/Master of Journalism program]. In the first semester, all public health students have to take epidemiology, and one of the things they learn is that if you’re doing research, you have to have a good case definition so that you know which patients have the illness and which don’t. The PACE study’s definition of CFS is six months of unexplained fatigue—period. It’s not rocket science to figure out that that’s likely to include people who are depressed and don’t have CFS. Fatigue is a common symptom of depression, but people with CFS have some symptoms that are not typical of depression. It was really because of that that I ended up writing a second story, a month or so later, about case definition in CFS. I tried to put it in a larger context—that this issue had been fought over for years, and the PACE trial was the latest variation on it.

What made you want to write an even more in-depth piece, explaining the history of CFS research and relating that to the recent XMRV mess?

Writing the case definition story led me to start looking into the Centers for Disease Control’s role in defining the disease. I found that in 2005, the CDC created a new way of defining the illness. Using that framework, the agency calculated that the prevalence of CFS was four times what everyone else thought it was, and ten times their own previous estimate. But if four to ten times as many people now have it, obviously something is really wrong with your case definition, before or after. William Reeves was head of the CDC’s research program for CFS for two decades, and two years ago, they moved Reeves aside. They never publicly said why, as far as I could tell. Furthermore, in the 1990s, the CDC spent funds allocated for CFS research on other projects, then lied to Congress about it.

I think all of this is really important for understanding why patients can be so suspicious and paranoid. In most of the coverage, the XMRV situation was decontextualized from the experience of patients and history of the illness, although Amy Dockser Marcus did some terrific reporting in the Wall Street Journal about the back story. But no one had really focused in depth on the case definition problem and the CDC’s role in perpetuating that problem.

I didn’t want to write a rant. I wanted to write, “This is what happened with the epidemiology, and this is why the situation is so screwed up.” I wanted something that patients felt represented some of the frustration they’d experienced in the past 20 years.

Did you think of the story as an advocacy piece?

No. I’m not a patient. I didn’t want to write it as an advocate for people with CFS. I wrote it because there was an undertold story. I understood that it was something that would likely be useful to the patient community; to the extent that that’s the case, that’s great. My goal is to tell a story that’s interesting, and one that I think is important. Obviously I do think that the CDC has not done what people expected it to do in this case. I think of writing this piece as being a proper watchdog of a government agency in an area that hasn’t gotten much attention.

What dilemmas did you run into in writing the piece?

In the first version that I sent to a couple of editors, I started off with Dr. Reeves’ saying very soon after the initial XMRV finding that his research team would look for the retrovirus but that he believed they were unlikely to find anything. When he said it, I wondered, “Should he have said that?” After all, his team hadn’t even started looking for it, and there hadn’t been any evidence against the finding at that point. It suggested that he was close-minded and partial. It was particularly remarkable because individuals from all sides were already calling for his ouster, before that point.

But when I looked back on it, [I realized] that story was too in the middle of things to be a good beginning. If you weren’t immersed in the story, you didn’t know why that was something he shouldn’t have said—it took too much explaining. For editors, it must have seemed like, “What was that about?” So I reframed it as a more general piece, with that as an example of his probably poor management skills—but I put it way, way down in the hierarchy of things.

Instead, I decided to start with a patient’s experience of having this and that illness and infection. I thought it was really important to have a credible patient who was understandable, sympathetic and articulate. I thought it would be effective to juxtapose all her health problems with the CDC’s recent research concluding that CFS patients tend to have personality disorders and a history of sexual abuse. Here’s this person dealing with all this terrible medical stuff, and then they’re telling her that she’s kind of crazy. I could then use that to lead into how the CDC really screwed up. I thought that worked better than starting with the gaffe of Dr. Reeves’, which was really in the thicket of all these issues.

From there it was pretty much chronological. I segmented it to some extent by topic, but then it was just a matter of tackling each chunk. It’s complicated to figure out how much detail you need, though: this was a science-literate audience that I was writing for, so some things I didn’t have to go into in as much detail.

One thing that helped tremendously was looking through the minutes, public testimony and recommendations of the Chronic Fatigue Syndrome Advisory Committee, established to advise the Department of Health and Human Services. Those documents detailed the collapse of all support for Dr. Reeves and provided a few juicy quotes and details. Federal advisory committee minutes are great sources for all kinds of stories but used relatively infrequently.

What lessons can science journalists draw from your experience in writing this story?

Once I started to get what the story was, I was able to listen to patients more carefully. It’s very hard when you’re dealing with a patient population that’s been so mistreated: They interpret every word that’s written through such a fine magnifying glass. I’ve never written about an issue that reverberates so extensively in the blogosphere.

For science journalists writing about complex public health issues, I think it’s important not to take the CDC’s word for it, nor academic researchers, nor the press releases about the studies. Read the studies yourselves. Read the studies criticizing those studies, and the responses to the critics. I think reporters who are writing about epidemiological issues should understand basic epidemiological concepts.

What was the process of trying to sell the story like?

I think it’s hard in general with this issue, because it’s a hard thing to explain to editors as much as anyone else who hasn’t seen it up close. First you have to convince people that it’s an illness and not just a psychological thing, and then you have to explain that the CDC’s program has been really screwed up. That preamble takes so long that it’s hard to explain the story. It’s not a story that you can do in 800 or 1500 words.

I tried four or five places which seemed like they’d be good venues for it and I couldn’t get any traction. I didn’t hear back from a couple of places, and a couple said it was interesting but cited budget problems, or that it just didn’t fit in with what they were doing. I’m sure those things were the case, but I felt like it an element of it was because it was CFS and not a disease with more credibility and a better name. It’s a much harder sell because this is kind of squishy, and people don’t understand it, and there’s no identified cause. No one said, “We don’t really think this disease exists so we don’t want to spend time and money,” nor do I think anyone thought that. But I don’t think it was on anyone’s agenda as an important thing to think about.

It was very frustrating, because I knew it was a story. But then I thought, “Am I crazy? Maybe it’s not a story.” I had a colleague at the journalism school who said, “No, this is an important story.” He couldn’t quite understand why no one wanted to publish it. I felt like I got a minor secondary echo of what patients must experience when they go to doctors or talk to people about CFS.

Editors are like the rest of us: if you don’t know someone who has it, it’s hard to understand what it is. And it’s easy to ignore something that makes people homebound and invisible.

What finally led you to decide to publish the story on Vincent Racaniello’s blog?

I felt like I wanted to get this out one way or another. I was thinking that I’d just post it myself and link it to the Berkeley journalism school faculty page, and then I talked to Vince and he said, “Oh yeah, that’d be great.” He said, “Write as long as you feel like you need.” That was really great. I started off to write 2000-3000 words, but it ended up being around 10,000 words. I felt like I was able to touch on all of the issues, though not necessarily in complete depth. Even as it was, there were things I took out and things I didn’t go into enough.

Did this experience leave you wary about trying to pitch big pieces on CFS in the future?

You know, no. There are a couple of other pieces that I’d like to do. It’s made me think I may need to find an alternate way to publish them, or to find a slam-dunk way of pitching them. But the truth is, this is a piece I wanted to write, and I’m glad I wrote it. I’m glad it’s out there, and I like it. I’d love to have gotten paid, but that wasn’t my main priority. I felt like this was an important story that I wanted to tell—I was in a position to tell it and I was going to put it out there. I didn’t need the money to continue to pay my bills. Let me just be clear that I do think writers should be paid fairly for our work! I would never have been able to do this when I was freelancing full time. I’m lucky to have a job, at least for now, with a decent paycheck.

I did get $21 through contributions from the “support science writers” button at Ed Yong’s website. I let him know that would come in handy.

A glimpse behind the scenes:

 

Julie Rehmeyer

Julie Rehmeyer

Julie Rehmeyer is a math and science writer who contributes regularly to Wired and was a longtime mathematics columnist for Science News. Her work has been included in The Best Writing on Mathematics 2010. She recently wrote an article for Slate on the demise of the XMRV retrovirus theory.