Sunday, February 26, 2012

David Tuller on CFS

Note: According to David Tuller, science blogger Ed Yong had a
donation button on his blog in order for readers to reimburse the
writers of science writing that was outstanding, but for which they
were not reimbursed for writing by the usual media outlets. In this
case David Tuller said, "I did get $21 through contributions from the
"support science writers" button at Ed Yong's website." A ballpark
comparison would be that most large newspapers pay up to roughly $1.50
per word freelance for a complex story by a writer with Mr. Tuller's
credentials. This would have come out to about $15,000 for this piece
has Mr. Tuller been reimbursed at a professional rate.

What does $21 say about the value patients placed on a story rarely
told by a professional journalist?


David Tuller untangles the research history of chronic fatigue syndrome
Posted by Julie Rehmeyer on January 18th, 2012/ The Open Notebook

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 TON guest
contributor 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.]

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.



Julie Rehmeyer
Guest contributor 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.

http://www.theopennotebook.com/2012/01/18/david-tuller-cfs/

1 comment:

HIV-NEGATIVE AIDS? said...

It is very important to note that Chronic Fatigue Immune Deficiency Syndrome (CFIDS/CFS) is NOT a disease.

CFS (like AIDS) is a syndrome, as its name suggests.

A syndrome is a syndrome, not a disease.

Myalgic encephalomyelitis (ME) is a disease.

www.cfsstraighttalk.blogspot.com