Founder of Health Rising and Phoenix Rising
"I felt betrayed by both science and by the science journalists who reported on my disease so badly. The pain of being sick was terrible, but the pain of feeling betrayed was a whole added layer." Julie Rehmeyer
It's not often that you see the words "chronic fatigue syndrome" on the New York Times front page but there they were. The title of Julie Rehmeyer and David Tuller's op-ed piece on the PACE trial, "Getting It Wrong on Chronic Fatigue Syndrome", was highlighted there in bold for about half a day.
It's not easy to get on the editorial page of the most influential newspaper in the West. Hundreds send submissions in but only a select few get published.
So who does get on the opinion pages of the second most read newspaper in the U.S. ? A look at the recent op-eds found that authors, professors, politicians and sometimes world renowned figures populate the NY Times Opinion pages. The op-ed section of the New York Times is clearly where the elite go to communicate their thoughts.
The reason I checked is that I don't think Julie Rehmeyer and David Tuller, as good as they are, got into the NY Times opinion pages on the strength of their credentials. They got in there on the strength of a story of scientific malfeasance which is still playing out. It's important to note here that the New York Times applies the same rigorous fact-checking they do in their regular articles to the op-ed pages. Nobody gets into the op-ed pages spouting false facts. The presence of the piece in the New York Times tells the world that Rehmeyer's and Tuller's facts check out.
"The investigators had weakened their outcome measures from their trial protocol so much that participants could actually deteriorate on physical function and still qualify as “recovered.” Thirteen percent entered the trial already having met the definition of “recovered” on that measure. Rehmeyer and Tuller
The whole PACE trial saga constitutes a death of innocence for ME/CFS patients. It's not as if people with ME/CFS trusted a medical profession which often told them their disease was all in their head. Many of us, me included, believed that if a weight of overwhelming evidence was presented the powers that be would surely listen. That hasn't proven to be the case at least at The Lancet and the other journals.
CBT and GET are still listed on many major medical websites as the go-to therapies for ME/CFS; therapies which some sites still maintain many help patients recover. That's in direct contrast to the more recent Institute of Medicine report's finding that even minimal activity can lead to exhaustion, cognitive problems, muscle pain, etc. is ignored. Such is the legacy of PACE.
What happens when the English speaking world's most influential newspaper smacks up against the one of the English speaking world's most influential science journals? We'll see. Richard Horton, the editor of The Lancet, has done everything he can to delay, obfuscate or otherwise impede the progress of any independent analysis of the PACE trial.
Horton defended keeping the study because the environment on social media regarding the PACE trial is not conducive to scientific discourse. Horton, who, ironically, has called for more transparency in the academic world, has fed that fire in numerous ways. He said he would publish a letter from concerned researchers, then not only refused to publish the letter once it was provided but never responded to it. Horton actually turned to the PACE trial authors to help him decide whether to publish the letter.
It took a legal fight and a court order to get the original PACE data released. As to Horton's and the PACE author's concerns about frenzied patients, the court found that patients' concerns were real, was unable to find evidence of unbalanced ME/CFS patients, and rebuked the defendants' behavior as unprofessional.
Horton has chosen to ignore the investigator's own re-analysis of their data which revealed that far, far fewer of the ME/CFS patients in the trial "improved" using the original criteria, and that many of those would have improved without using CBT or GET. Horton apparently doesn't find it suspicious that every change the study authors made in the PACE trial increased their ability to say it was effective.
Horton is hanging in there while others are tearing his reputation to shreds. Apparently it hasn't been enough. If ME/CFS weren't such a niche topic it's hard to imagine he'd still be editor of the Lancet.
The situation isn't much better with Psychological Medicine - the journal which produced the PACE recovery findings. Recently, over 100 researchers, doctors and organizations sent an open letter to Psychological Medicine asking it to retract the study which stated that 22% of the ME/CFS patients recovered and that CBT and GET provided "the best chance for a cure".
Psychological Medicine is twisting itself into a pretzel in its attempts to have it both ways. It's said that it's unwilling to retract the original study, but that it's "open" (whatever that means) to publishing the re-analysis of the PACE trial which, of course, revealed the trial was bogus.
Given Lancet's and Psychological Medicine's intransigence, thus far, I wouldn't hold my breath waiting for that to happen. The latest New York Times piece will add a bit more fuel to the PACE fire. Meanwhile, the scientific community will probably have to find more ways to apply pressure for this this effort to succeed.
Julie Rehmeyer spoke of how much the opinion piece meant to her in a Facebook post. Rehmeyer, through her articles, has played a major role in exposing the PACE trials flaws. Since the PACE trial came out she's gone from being disabled to healthy, and a book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" describing her surprising journey to health is available for pre-order. For her, as for many others, the PACE trial has become personal:
This is a big moment for me: I have an op-ed in the New York Times, coauthored with David Tuller, about the shocking scientific flaws in the PACE trial, a study that claimed that psychotherapy and gradually increasing exercise can cure chronic fatigue syndrome.
To describe why this is just so gratifying, I need to tell you a little story. Six years ago, when the PACE trial first came out, I was at my very sickest. I'd had a sudden major deterioration a few months before, and I was lying in bed, day after day, trying to manage my terror as I waited to fly to Florida for an appointment with Nancy Klimas, a top ME/CFS specialist. I kept sending apologetic emails to my editors, trying to keep my career alive even though I didn't know if I'd ever be well enough to work again.
Then one morning, reading the New York Times on my phone—sitting up to use my computer was far too hard—I came upon a story about the PACE trial.
I was so shocked. I’d worked with my therapist for seven years during my illness, and while he’d helped me keep from losing my mind as my body had deteriorated, he couldn’t stop me from losing my health. And over and over again, I'd tried to build up my exercise. I'd learned that I had to stop the moment I thought "I'm a little tired," or I paid, big.
I couldn't understand it. The PACE trial smelled good in so many ways -- it was big, expensive, published in The Lancet. But it just couldn't be right.
It took me quite a while to get well enough to learn about all the problems with the trial, and when I did, I felt betrayed by both science and by the science journalists who reported on my disease so badly. The pain of being sick was terrible, but the pain of feeling betrayed was a whole added layer.
One of the delicious ironies of this is that the author of that New York Times story that so shocked me was David Tuller, my co-author on this piece. He listened when patients complained to him, and he became an absolute hero in this disease, blowing the lid of this trial in his huge expose of it in Virology Blog.
So I have this sensation this morning like I want to travel back in time to six years ago, so I can whisper in the ear of that sick woman lying in bed: “Six years from now, you and the guy who wrote this story you just read are going to team up, and you’re going to write an op-ed in this very newspaper describing exactly what the scientific problems with this trial are. Not only that, but you’re going to have a memoir coming out about chronic fatigue syndrome and how you’re going to find your way to vastly improved health. As powerless and frightened as you feel right now, you’ve got some serious power in you!"
Please share "Getting It Wrong on Chronic Fatigue Syndrome".