But one of the PACE researchers in a press conference described patients getting “back to normal.” Many news reports said that about 30 percent of participants had recovered and that 60 percent had improved. Recovered! Normal! Sixty percent improved! How could that be, when the results are so puny?
My new friends the forum geeks had the answer for me: The researchers had changed their definitions of “recovery” and “improvement” after the trial began—weakening them so dramatically that patients deemed “recovered” at the end of the trial could be both more fatigued and less functional than when they began treatment.
They could get worse and be called recovered?
Originally, patients had to assess their own physical function at 85 or higher, among other requirements, to qualify as “recovered.” That was perhaps slightly low, given that fully healthy people would ace the test with 100—but hey, I would have been thrilled to score an 85, so it was plausible enough.
After the trial began, though, the researchers lowered the threshold for recovery to 60—which, shockingly, was worse than that of 92 percent of the working population and typical of an 80-year-old. But not only that, it was worse than the threshold of 65 for entry into the trial—which the researchers characterized as “significant disability.”
Similarly, patients could say they were more fatigued than when they entered the trial and still qualify as “recovered.”
At this point, I got downright furious. The PACE team’s changes in the definition of recovery—a definition colleagues of theirs touted as “strict” in an accompanying commentary—were absurd, and I couldn’t see how anyone could have failed to recognize that. This isn’t just sloppy science. This borders on research misconduct.
The forum geeks pointed out that the researchers had strong motivation to claim a positive result: Some of them had worked as consultants for private disability insurance companies, earning money advising them that CBT and exercise would get patients back to work and that companies should deny payments to patients who hadn’t done these treatments—a fact they failed to disclose to participants in the trial. Plus, these researchers had invested their careers in this. They’d look terrible if the treatments failed.
Even though I had never had CBT or graded exercise pushed on me, I felt personally affected by the trial. No wonder this disease is so alienating! Wessely had first developed his theory nearly 25 years earlier, and his ideas had spread into US researchers’ and physicians’ ideas about the illness. These were the people who had helped turn chronic fatigue syndrome into a mark of shame.
I sometimes felt as though I were stewing helplessly in bile. I longed to expel my adrenaline-fueled fury with a rock-kicking, branch-breaking hike up a steep hill. Instead, I lifted a five-pound weight a few times, as much exercise as I could safely do. Fucking ironic, I thought as I set the weight down again, rage still pounding through my bloodstream.
I grew even more furious as I watched what happened to the forum geeks when they tried to bring these problems to light. They wrote blogs; they contacted the press; they successfully submitted carefully argued letters and commentaries to the Lancet and elsewhere. They even published papers in peer-reviewed journals. The PACE researchers dismissed all the criticisms with spurious responses, explaining, for example, that they chose their extremely broad definition of chronic fatigue syndrome—so broad that it likely captured people who were depressed and didn’t have ME/CFS at all—“to make sure our findings applied to the greatest number of patients.” I laughed when I read this. Why not include cancer patients too? Or stroke patients, or cardiac patients? Then you could apply your findings to even more people! The researchers certainly never offered any justification for their claim that patients could simultaneously be “significantly disabled” and “recovered.”
And the PACE researchers didn’t stop there. They and their defenders painted critics as unhinged crusaders who were impeding progress for the estimated 30 million ME/CFS patients around the world. The editor of the Lancet, Richard Horton, for example, went on the attack against the study’s critics, calling them “a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”
When the forum geeks filed Freedom of Information requests to obtain various portions of the raw data from the trial, the researchers denied the great majority of the requests, some on the grounds that they were “vexatious” and qualified as harassment.
And the press joined in the pile-on. They wrote credulous stories about how ME/CFS patients had sent death threats to researchers—a claim that was never substantiated.Ch8-1 Wessely led the charge with these accusations: Because of the death threats, he said, he’d had to have panic buttons installed in his home and office and have his mail x-rayed. No journalist described seeing these purported death threats or confirming the allegations with the police, but in article after article, Wessely painted his critics as lunatics who had stepped beyond the bounds of reason or legality. He said he’d quit ME/CFS research to study health in the military, and “I now go to Iraq and Afghanistan, where I feel a lot safer.” I couldn’t help but laugh when I read that, weighing the image of a desperate, enraged patient in his sick bed tapping out hateful e-mails against that of a desperate, enraged Iraqi insurgent with an IED.
Maybe Wessely did in fact fear for his safety, and if so, I was sorry for him. But those threats sure seemed like a handy way for him to smear all those who disagreed with him and deflect attention from the scientific criticisms of his work. Routinely, these articles lumped together critics of PACE with the purported crazies. An article in the BMJ about the death threats quoted one of the PACE researchers as saying: “The paradox is that the campaigners want more research into ME/CFS, but if they don’t like the science they campaign to stop it. They want more research but only research they agree with.”
The death threat meme certainly served them well. I once contacted a journalist who wrote a credulous story about PACE, and he remarked privately, “To be honest, not knowing much about the study at the time [I wrote the article], it was easy to side against the people who threatened the researchers with physical violence.”Ch8-2
For me, the press coverage was perhaps what hurt most. My colleagues were writing stories that belittled me and my fellow patients and dismissed the serious scientific errors that had allowed the PACE researchers to have such influence. And when I talked about the trial to my science-writer friends, I feared I could hear the taint of crazy in my voice. The severity of the problems I complained of sounded so unlikely. After all, it was the Lancet!
Another journalist I contacted about his uncritical story about PACE wrote back:
You, and the commenters, seem to see fatal flaws in the whole business; what has stopped it being investigated further, overturned, formally disputed, written off altogether in the annals of medicine? It’s as partisan a debate as I can fathom, but sound scientific consensus should normally weigh in here . . .
Yes, it should! I thought. But so far, it’s not. And it only will if folks like you act as watchdogs and make it happen! I wrote back to him with more information, but he had moved on to his next story and wasn’t interested in digging further.
I contemplated pitching a story about the PACE trial myself: “Dear Editor, I want to write a story about the biggest treatment trial in the history of chronic fatigue syndrome, published in the Lancet, led by some of the most reputable psychiatrists in Britain, which has influenced public health recommendations around the world and has received nearly no public criticism by the scientific establishment. But I, Julie Rehmeyer, can tell you it’s a crock of shit. Oh, and by the way, I’m a patient, I’m personally offended by this work, and I might be too sick to finish the story.” Hmm. Not a very compelling pitch.
I felt betrayed by the institutions of science and journalism both. I took breaks as I re
searched, looking out my bedroom door at the sheltering ponderosas, listening in on the stream’s eternal conversation with itself, working to remind myself that I was here, now, in this body, that this rage and powerlessness didn’t encompass the entire world.
Still, my grief built into desperation as I read about the toll the PACE trial was taking on patients. Parents of children with ME/CFS in the United Kingdom were frequently accused of keeping their children sick through their “false illness beliefs,” especially if the parents resisted CBT or exercise for their children. Authorities sometimes threatened to remove such children from their families and place them in foster homes or psychiatric wards. PACE didn’t study children, but it strongly influenced attitudes and beliefs about the illness, persuading many that the only problem ME/CFS patients faced was their own belief that they were ill.
The stories of such children broke my heart. I read about Ean Proctor, a 12-year-old British boy with severe ME who had been confined to a wheelchair and couldn’t speak. In 1988, Wessely diagnosed Proctor as having a psychiatric illness and recommended him for “wardship.” Social workers, accompanied by police, then forced Proctor into a psychiatric unit and kept his parents from visiting him. Proctor reported that he received “treatments” such as being put face down in a pool of water, in order to force him to swim. Too weak to do so, he said, he had to be rescued. After a court battle lasting five months, he went home and slowly recovered. Proctor’s parents managed to get a commission appointed to investigate their charges of professional misconduct, but the commission defended the medical personnel and instead accused Proctor’s parents of mistreating him.
This case was one of the worst I heard of, but it was far from unique. In England and elsewhere in Europe, authorities continued to threaten to take children with ME/CFS from their families. The Tymes Trust, an organization that supports families of children with ME/CFS, reported that over 10 years, more than 140 families had turned to the organization for help after their children with ME/CFS were threatened with removal. All of these families succeeded in keeping their children, but sometimes only after a major fight.
Adults weren’t free from risk either. One patient, Sophia Mirza, was so ill, according to her mother, that she couldn’t tolerate any light or sound or touch, was unable to speak, and was in severe pain. Her doctor repeatedly and forcefully recommended an ME clinic that practiced graded exercise therapy. Mirza refused, and under her mother’s care, she gradually improved a bit. In 2003, when Mirza was 29 or 30, police smashed in her door and took her to a locked mental hospital, where, she said, she received nearly no nursing care. Two weeks later, after a tribunal, Mirza was released, but she was far sicker than she had ever been. Over the next couple of years, she deteriorated further, becoming entirely unable to eat or to move. In November 2005, she died. An autopsy found extreme neuroinflammation in her spinal cord and kidney failure. Mirza became the first person officially ruled to have died from ME.Ch8-3
Reading about Mirza, I found my little trailer starting to feel like a coffin. What if I got worse? What if my paralysis episodes started lasting long enough that I wasn’t able to wait until I could use my pee bucket? What if I couldn’t get my own food? Mirza’s mother took care of her for years—I had no one to do that for me.
As it was, my house tenant sometimes helped me get up the stairs to the other trailer when he heard my groans. Another neighbor shopped for my groceries when I asked her to, and if she found my bedroom door closed, she let herself into the kitchen, put the cold stuff straight into the fridge, and disappeared silently. I hired a housekeeper to clean for me and to help me cook.
But I didn’t have any other help, and I had no idea how to get more if I needed it. What would I do if I couldn’t take care of myself? I couldn’t even think of whom I might call, what steps I might take.
About the only thing I could picture was becoming so poor that I qualified for Medicaid and could go to a government-funded nursing home. Could that really happen to me?
I was also slowly losing hope that Klimas’s treatments were going to help. In a follow-up appointment that fall, six months after my first one, she made a few adjustments to my medications, but she didn’t seem to have much else to offer. She confirmed my guess that my kidneys had become more efficient at expelling electrolytes and that was why the Gatorade treatment wasn’t doing much anymore. There was one treatment, Ampligen, that worked miracles for a few patients, but it wasn’t FDA approved, cost $25,000 per year, and was only administered in a few places around the country—and even then, it didn’t always work. The lymphoma drug that had brought remissions to a few patients was highly experimental, difficult to get, and extremely expensive.
Eventually, perhaps, science would find a treatment. But PACE showed me that science could be a force for evil as well as for good. And with research being funded at $5 million a year by the National Institutes of Health—only enough to fund a handful or two of small studies—“eventually” looked like it might be a very long time away.
For years, I’d been sustained by an unshakable, ungrounded optimism that I’d recover. I’d been convinced that I’d find my way back to health using some combination of the attunement I’d cultivated to deal with my mother, the intuition and analytical skills I’d used to do mathematics, and a kind of receptivity and openness to whatever my life would bring, along with whatever medical treatments I managed to find.
But lying in my trailer with my body nearly paralyzed, my brain swollen, and my mind numb from researching PACE, that optimism was looking not just irrational but silly, even self-centered. Plenty of people spent their lives with horrible illnesses they never recovered from—why not me? What made me think I had some special quality that would magically protect me from such suffering?
This—or worse—might well be my life forever.
* * *
Ch8-1 Indeed, in a court hearing in 2016, one of the researchers admitted that neither they nor any PACE trial participants had ever received a threat of any kind, though one researcher was heckled at a talk.
Ch8-2 The death threat meme also served Wessely quite well personally. In 2012, he was awarded the John Maddox Prize, for promoting “sound science and evidence on a matter of public interest” and “the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues.” He was also knighted in 2013.
Ch8-3 At the time of publication of this book, these abuses of patients continue. In February 2013, a 24-year-old patient, Karina Hansen, was taken from her home in Denmark, forcibly admitted to a psychiatric hospital, and allowed very little contact with her family. A court-appointed guardian—the chief of police in her area at the time of her removal—made all decisions about her care. When her father visited her in the spring of 2016, she was no longer able to speak, stand, or even apparently recognize him. She was finally released in October 2016 and returned to her family’s care.
CHAPTER 9
A LIFE, LIMITED
Oddly, despite the fright and fury I felt from researching the PACE trial and my dwindling hope that coming home would help my body, life didn’t feel so bad. I felt overwhelmingly grateful to be back on my land. I also felt a sweetness in being by myself.
That sweetness astonished me. I’d found aloneness terrifying for years, ever since my mom died. I remembered not having anyone to spend Thanksgiving with one year during graduate school and feeling like eating dinner alone might erase my very existence from the earth. But now, I felt a plenitude in the silence that seemed to reach to the space between my cells. Even when I was in so much pain that I had to breathe through it moment by moment, I felt as though the great expanse of the entire Rio Grande Valley had penetrated my body and created room that had never been there before. I was still bound, but I wasn’t pinched.
Life became simple: When I couldn’t turn over in bed, I didn’t. When I could work or run errands, I did. My only choices were to worry or not to worry, and when I put it to
myself that way, the choice became easy. So I set the rage and the fear aside and sank into the immediate moment I occupied.
My connection to the world seemed to be growing more remote, as if the very ground off my property were turning to mist. I found that my mother often felt very close, as if by pulling away from the outer world, I was pulling closer to her.
I also felt much as I had back in my math days when I was stumped on a problem and had set it aside, leaving my subconscious to keep nibbling at it as I absently ordered a latte or walked down Mass Ave to class. Then I’d notice a whisper of an idea tugging at my mind, an approach or possibility I hadn’t considered, appearing as if by magic. I rarely felt like Archimedes leaping from his bathtub to run naked through the streets of Syracuse yelling “Eureka!” It was more like some subconscious part of me was trapped in a locked room in a hidden world, inspecting the cracks in the walls and prying at the doors, and it had just discovered the slight jiggle of a loose window. Then I’d return to actively working on the problem, seeing if I could use that slight looseness to break the lock.
Lying in my trailer, out of ideas about what to do, I felt as though I were waiting for that little jiggle. In the meantime, I was mostly just staying out of the way, letting my subconscious prowl around that hidden locked room as I listened to my stream and cuddled with my dog.
My experiences in mathematics were part of what reassured me then, allowing me to occupy the formless moment I was in without terror. Math had convinced me that the hidden worlds I’d occupied as a child with my mother weren’t mere insanity. As I saw it, math was the immaterial structure that underlies the world, the thing that invisibly drives the pattern and meaning in all that we experience.
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