Just three years after the institute opened, in 2009, Whittemore’s greatest dream seemed to come true when Judy Mikovits, the institute’s lead researcher, found the retrovirus XMRV in most ME/CFS patients and a few healthy controls. She published the finding in Science.
The result had a stunning implication: The nation’s blood supply might be at risk. Retroviruses, the best known of which is HIV, spread through blood—which means they can infect anyone, not just crazy, psychosomatic people. And because retroviruses infiltrate the DNA of their victims, scientists know of no way to cure them. Doctors can at best keep them at bay. XMRV might be an enormous threat to the health of everyone.
Many patients exulted, especially those who had suspected a virus or retrovirus for decades. Although my illness had crept up on me, many people seem to get a sudden, terrible bug they never recover from. Naturally, many patients longed to know if they themselves were infected with XMRV, and they clamored for testing. The Whittemore Peterson Institute obliged. A laboratory linked to them produced a $500 commercial test, and patients began raiding their social security checks to send in their blood.
In the meantime, the threat to the blood supply opened the taps of research funding, and scientists rushed to replicate Mikovits’s finding. But they soon got inconsistent results. Mikovits belligerently defended her work, and the laboratory continued to sell its unvalidated XMRV tests to patients.
Finally, a definitive study showed that the XMRV in the blood samples came from laboratory contamination rather than an infection in patients.Ch10-2
Then things really got messy. The Whittemore Peterson Institute fired Mikovits in a dispute over who controlled her lab samples. Soon after, Mikovits’s former research assistant, on her request, secreted critical lab notebooks out of the building to her. The institute pressed charges against her for theft and she was arrested, appearing in chains in a California courtroom. She ultimately returned the notebooks, and the charges were dropped.
Of course, this was media catnip, and as usual, most of the coverage made me groan. A Wired article that appeared shortly before mine yet again trotted out the claims that Wessely and others had received death threats and concluded that while Mikovits and ME/CFS patients had behaved badly, science had functioned beautifully. Governmental scientific institutions, journals, outside researchers—all deserved a big clap on the back. The article ended without so much as a thought for the patients still ailing, still without answers, still without serious research. A dagger of rage toward my fellow journalists regarding the PACE trial had grown inside me, and it twisted painfully as I read this.
To me, the toxic history led directly to the current mess. I pointed out in my own article that many patients felt that Mikovits wasn’t just an ordinary scientist, trying to do the extremely difficult task of wrenching answers from nature’s grasp. She was their redeemer, the sole defender of the theory that might rescue more than a million desperately ill Americans. In the context of such need and desperation, both some patients and many in the press conflated the legitimacy of the retrovirus research with public acceptance of ME/CFS as a “real” disease. Patients without deep familiarity with the scientific process had little idea how essential and uncertain replication was.
It seemed likely that being the object of such desperate adulation had an intoxicating effect on Mikovits. Patients’ fervor may well have fueled that of Mikovits, convincing her that she was the only one left standing up for patients and supercharging her initial enthusiasm for the work into self-righteous certainty. It was easy to imagine how her sense of obligation to produce results quickly for desperate patients, and the polarized atmosphere around ME/CFS research, could have greased the slide she took from cautious science into reckless overreaching.
I argued in my story that whatever the failings of Mikovits, Whittemore’s institute, or the patients who trusted them, they weren’t the point. With a disease this debilitating and marginalized, some patients are bound to make leaps of faith; some researchers might start to believe their own press; and a mother might overextend herself in her quest to save her child. But the alienation of the patient community only arose because of the mishandling of ME/CFS by the public agencies.
I ended the piece with this: “The best way to avoid this kind of fiasco would be for researchers and public health officials to follow their obligation to protect public health, be faithful to the science from the beginning, and fund and pursue ME/CFS research.”
Writing the piece nearly killed me. My editor was convinced that the disease was a “real, psychiatric illness” and didn’t understand why patients were so resistant to that idea. At one point, he threatened to hire someone to rebut my piece if I didn’t make the tone less polemical—which nearly made me despair, since I’d already asked several writer buddies to read my draft to help me excise any angry notes in it. The editor insisted that I add a mention of the death threats, and when I pointed out that these death threats were little more than a rumor since they were entirely unsubstantiated, he told me I nevertheless had to include them to make the piece appear “fair-minded and balanced.”
And naturally, I had to disclose that I was a patient, so readers could judge how that influenced my perspective. I’d never hesitated to tell people individually of my diagnosis—being open felt like a good way of counteracting the shame that attached itself to the illness—but publishing it meant I’d lose all control of that information. Still, I agreed.
I pounded out frustrated e-mails to my friends each time I got a revision back from the editor filled with absurd changes and obtuse questions, but in the end, the hard-nosed editing made the piece stronger and less vulnerable to attacks. Once the piece was out, I appreciated it, and I felt enormously proud of the end product. At that time, there was almost no reporting that reflected the full reality of this disease, and I felt like my piece could, perhaps, nudge the strand of public ignorance and scorn in the ME/CFS knot just a bit looser.
But after working on the piece for five days, I barely got out of bed for the next week, except to go to the bathroom.
Many of the comments on the piece were dreadful—a typical one was, “People who claim they have CFS rant, accuse, judge, whine, compete for who hurts the most, and hold on for dear life to that one thing that makes them feel special and deserving of sympathy: chronic fatigue syndrome.” But informed and generally polite patients came out to rebut the haters, and I felt far less alone with the illness than I ever had before.
Despite the cost, writing the piece transformed me. I’d come out publicly about having the illness. I’d reframed my illness for myself from an individual to a collective battle. I’d spoken the truth at a time when that truth had mostly been silenced, and in the process, I’d claimed my own power.
I might be sick, I might never recover, but I could still make a difference in this world.
* * *
Ch10-1 In 2016, it was renamed the Nevada Center for Biomedical Research.
Ch10-2 On December 22, 2011, three weeks after my Slate story appeared, Mikovits’s Science article was formally retracted.
CHAPTER 11
AN UNLIKELY HYPOTHESIS
I started getting a stream of Facebook friend requests from ME/CFS patients after the Slate article came out. I accepted them all—seemed the friendly thing to do.
My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, even inspiring. I saw how they turned to one another not just for advice, as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world. They were creating meaningful lives for themselves at whatever level they could: knitting hats that they sold to one another; taking cello lessons even if it took all their energy for the day; celebrating grandchildren; strategizing about how to get research funding and improve doctor training; acting as watchdogs on the federal health agencies; even founding start-ups to help the ch
ronically ill.
One neighborhood of this teeming world consisted of folks who called themselves “moldies.” They believed that toxic mold was the source of their illness and that avoiding even tiny quantities of toxic mold had improved their health. Many of them abandoned all their possessions and lived in the desert for months or years on end. Holy cow! Yet one more whacked-out theory, I thought. May they somehow derive comfort from it.
Then I came across the blog post of a young man, Joey, who reported that after two months of doing “extreme mold avoidance” by living in a cargo trailer in the desert, he was able to exercise vigorously without ill effects. Tears stung my eyes by the time I finished reading: I missed exercise so much. I felt as if I had been forced to act like a hypochondriac old lady, obsessing on minute signs of fatigue so that I might stop in time to avoid a relapse. “Exercise” consisted of my five- or ten-minute swims to get my legs working again when I was paralyzed, or some brief strength exercises I did at home when I was feeling capable, which I hoped might keep my body from liquefying and melding with the bed. But true exercise—pushing my body against its limits with abandon—was out of the question. So I read Joey’s post over and over, feeling a crack open in the wall I’d built up against my seemingly impossible desire to exercise, to be well, to again run in the mountains.
Around the same time, I was chatting with my primary care doctor in Santa Fe, who also happened to be my next-door neighbor and a friend. I’d long ago given up going to him for my ME/CFS, but he’d kept looking for things that might help me. He mentioned that he’d heard Dr. Ritchie Shoemaker, a pioneering mold specialist, speak at a medical conference. Shoemaker’s talk had made him think of me, and he thought he might be onto something. He gave me Shoemaker’s book Surviving Mold.
I was intrigued. I was pretty sure there was some scientific respectability to the idea that mold could do bad things to you, though I had also picked up a bad smell around it, like perhaps the science had been stretched past the breaking point. The book, though, claimed it had solid scientific backing. I skimmed it in search of the obvious, basic information: How can you know if mold is making you sick? And what do you do about it if it is? Almost all I could find in the book, though, were meandering stories and self-congratulations. Many of the scientific assertions didn’t sound right to me, but I didn’t trust my knowledge of biology enough to be sure. Within minutes of picking it up, my poor swollen brain would overload, and I’d put it down again.
Still, the combination of the Facebook posts, Joey’s tantalizing story, and Shoemaker’s claims got me interested enough that I reached out to one of the patients on Facebook who was so excited about mold. I explained that I’d never had any indication that mold was a problem for me, but that I was intrigued by Joey’s improvement and wanted to know more. I got back several documents, including one that was an astonishing 900 pages, and an invitation to join an e-mail list for “moldies.”
I started with the shortest one, a 25-page biography of an ME/CFS patient named Erik Johnson, who dubbed himself “Erik the Mold Warrior.” He had been a victim of the Lake Tahoe epidemic in the late 1980s, and the CDC had chosen Erik as a model patient, or “prototype,” for the apparently new syndrome.
Erik soon suspected that mold might be contributing to his illness. Since childhood, just picking up an old book could leave him so weak he could barely stand—and then if he went into the fresh air, he’d feel fine again. Also, when Erik had been a student at Truckee High School near Lake Tahoe in the early 1970s, going through the front doors left him so headachy and confused that he ended up using a side entrance. And the epidemic had affected a huge number of teachers at the high school—plus, many of them described the teachers’ lounge making them feel ill.
Erik decided to apply techniques he’d learned in the army to survive chemical or biological warfare. Treating mold as if it were nerve gas seemed to work: six months later, Erik climbed Mount Whitney.
La la la, I thought. Nice story. People occasionally recovered in all kinds of weird ways: cough medicine, a device that zaps electricity through your wrist, homeopathy. Anyone who managed to get better attributed their success to something, and then they often became convinced that that something was the cure for everyone with the disease.
And this particular something didn’t sound like it would apply to me at all. I’d certainly never been suddenly sickened after picking up a moldy box or walking into a building. I’d gotten sick in very dry New Mexico, which surely didn’t have much mold. One house I’d lived in had a small patch of mold, but I’d moved there long after I’d first gotten sick. Plus, I’d lived in perhaps a dozen different houses over the course of my illness, none of which had visible mold, and moving never seemed to make me better or worse.
So I wrote to the e-mail list, introducing myself and also expressing my doubts that the theory applied to me (keeping any doubts about the theory as a whole to myself).
The patients were unfazed. If I had lived in just one moldy house along the way, they said, my belongings would have picked up mold that was sufficient to continue my exposure. One of them argued that mold sensitivity operates a bit like a peanut allergy: Just as a very few peanut molecules can set off a person who is severely allergic, so a very few mold molecules could set off a person who is severely mold sensitive. The patient argued, though, that it’s a toxic rather than an allergic response—that is, rather than causing an overreaction of the immune system, it destroys the immune system and other parts of the body. And if you’re constantly surrounded by mold, the patients claimed, your body becomes so overwhelmed that it may not have an additional reaction to a particularly moldy building.
On their request, I provided a detailed history of my illness, and one patient wrote back fingering the culprit: Berkeley. She pointed out that it was only after I moved to Berkeley that my illness got really serious—true enough. And Berkeley, she said, is an especially bad place for moldies. She was convinced that Berkeley had some toxin in the outside air that people who are sensitive to mold are also susceptible to—but since no one had studied it, she explained, no one knew just what this toxin might be. Hmmph, I thought. That sounds pretty crackpot. But hey, the Bay Area is awfully damp. Wouldn’t surprise me if there were plenty of moldy houses there. Hilariously, the moldies called this toxin “ick.” One patient made a valiant effort to make it sound more scientific and less embarrassing by renaming it IC for “idiopathic contaminant”—pronounced “ick”—but this rebranding never took.
The patients also pointed out that when my first, relatively mild symptoms appeared, I was living in my trailers while I was building my house. Almost all old trailers, they said, are moldy—they’re essentially tin cans lined with particle board, so condensation inevitably soaks into the wood, causing rot.
I patted the wall of the trailer as I read that, frowning. I liked my trailers. I’d put in hardwood floors, replaced the furnace and the refrigerator and the stove and the toilet, painted them a clean white. Surely my old friends hadn’t been making me sick!
But the patients were united in their verdict. Since I had been stewing in mold for years, they agreed, it wasn’t surprising that I hadn’t noticed changes from place to place. Only by “getting clear,” removing myself from mold completely for a long enough time for my body to adjust, would I start to notice the effects of moldy environments.
Then, to recover, I’d need three things: a location with good, clean air; a safe, mold-free home; and uncontaminated possessions. And I’d need to do an extended program of detoxification. The theory here was that we store the toxins that molds produce—called mycotoxins—in the tissues of our body, and that once we’ve become sensitized to them, we need to get rid of them to fully recover.
One patient had gotten rid of her stuff and had been living in a fiberglass RV for the previous four years, finding locations that felt good to her, and she’d gone from being sicker than I’d been, she said, to nearly recovered. While I’d heard of seve
rely ill ME/CFS patients sometimes getting a bit better, recovery was so rare for this group that I’d never heard anyone claim it before. A patient said that she’d talked to dozens of people who had recovered from moderate to severe ME/CFS, and mold avoidance played some role for almost all of them.
The patients agreed about what I needed to do to find out if mold was an issue for me: I had to go to a particularly pristine desert for two weeks with none of my own belongings. I might or might not feel better while I was there, they said, but if mold was indeed my problem, then when I came back, I very likely wouldn’t be able to tolerate my own living space. They warned me that I needed to have a plan to deal with that possibility—if I stayed in my home, I might get very ill indeed. Some people, they said, had even committed suicide when they returned to a moldy house.
This all seemed a little crazy, particularly that suicide bit. Still, I was intrigued. It was a more coherent theory than anything else I’d heard—even Klimas had offered only a thin explanation for what pushed patients into the valley of ME/CFS. Also, a bunch of these folks were smart and impressive. One was a Harvard-trained lawyer, another was an MIT computer scientist, another had been an art history professor.
But the alluring prospect of recovery came with a nasty kick. If mold was indeed my problem, I would have to get rid of everything I owned and move to a new house—if I could find one I could tolerate. Many moldies couldn’t, and some people in the group were living in tents or RVs, or even in their cars, indefinitely.
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