He was right—“pretty damn near.” But I was not well, not as I’d imagined I’d be. I was in a different world than I’d been when I was unable to turn over in bed, alone, but my body still felt a bit like a toddler, to be managed and planned around, its needs coming first. I couldn’t speak of the illness in the past tense—it was still with me, and it might always be. I couldn’t know.
I tuned in to the leaden heaviness in my bones, and I stopped resisting it. I imagined it as my child-self, and I pulled it into my lap, feeling that wild, strong, frightened little being leaning into me. You’ve been working hard, body, getting ready for this wedding on top of working to heal. Thank you, thank you, thank you. And I’ve been putting pressure on you on top of that, demanding that you be all the way well. I’m sorry. I take it back. You don’t have to be any stronger or more healed than you are. Just rest, and absorb all this loving energy that surrounds you. I closed my eyes, listened to the strains of music filtering down to me, and let my mind fall blank.
Maxine’s door slid open, and John appeared with two plates of food, smiling. I sat up and kissed him, and thighs touching, we ate our food.
I rejoined the festivities in time for socializing and then toasts, sitting as much as possible to preserve my energy. When I found myself flagging, I took a moment to look at that amazing view that John so loved, following the jagged ridgeline, feeling all that space that lay between me and it, drawing in the immense capacity of the earth. It didn’t make the tiredness vanish, but it eased me back each time from its sharp edge, allowed me to stand beside it rather than jab against it.
Geoff came over and wrapped his arms around me. “I’m so happy to see you so happy,” he said, and I felt a rush of love for him and gratitude for that day 20 years earlier when I’d seen him in that MIT classroom and thought, Now there’s a good-looking man. Illness had nearly destroyed each of us, and it had destroyed our marriage, but throughout the whole thing our love had stayed intact. “Thank you,” I said, hugging him again, feeling his solidity. “Thank you.”
Later, I stood up and toasted my mother, commenting that she felt very present to me that evening even though she had died 22 years earlier. I told a story about how when I was 15, my mother and I were out shopping together, and I saw a beautiful white lace dress on the rack. I checked the price, and it was $262. My mother came over and remarked on how beautiful it was, and I said, “Yeah, but it’s way too expensive,” showing her the price tag.
My mother said with impish glee, “Oh, but you can try it on!” It looked so gorgeous that she bought it for me, even though it was far too pricey for a 15-year-old girl and even though I had no place to wear it. It was just too beautiful on me to pass up, she said.
The dress sat unworn in my closet for 25 years. It didn’t go to Berkeley, so it survived the Great Purge. And it became the wedding dress I was wearing right then. John had cut off the price tag that morning.
The crowd offered up a big “awwww” and clinked their glasses.
Then I offered a toast to my father. I described how even though I’d never known him directly, I felt like I was having a chance to get to know him through his other children, all of whom were there, along with my siblings on my mother’s side. Then all seven of them came up: Robin, the one I’d grown up with most, who had spent days at my service helping us get ready for the wedding—including by making the caramel brownies my mother baked and my father loved; Ty, who reached past terrible abuse and rejection to join me on that day and to build a loving relationship with his own son; Carol, the oldest of my father’s kids, who had been friends with my mother around the time that I was born and seen the whole drama unfold; Troy, who had inherited my father’s business drive and who had shared him with me so generously; Wes, who had initially welcomed me into the family and who pulled John aside during the wedding to say, “Julie’s father would be so proud of her”; Cindy, who had created a joyful life with her husband driving around the country in an RV with their sign-making business and who had kept reaching out to me over the years; and Patricia, who had so resembled me as a child and who told me, “Seeing how wonderful you two are together gives me hope I might find a partner I really want to be with too!”
We formed a tribe, the eight of us standing there with interlinked arms. A family. My family.
When the music started (“Let’s Stay Together” by Al Green), John wrapped his arm around my waist and we moved together with total comfort. I caught glimpses of people’s smiles and tapping feet. At the next song (“Barbie Girl,” which we’d chosen for its silliness and infectious dance beat), friends piled onto the dance floor, and I tossed all reserve aside and danced with abandon. I knew that unlike in years past, my incaution wouldn’t come back to bite me.
The sun set over the Rockies and the stars began twinkling into life above us. The pine trees surrounded us like guardians, protecting this bubble of joy and love and wholeness. The music played on, and I danced and danced.
EPILOGUE
As I finish this book, John and I have celebrated our third wedding anniversary together. The realization that this relationship is for real is seeping into my bones. Morning after morning, I feel a bit less incredulous to wake up next to him, but no less appreciative. We continue living primarily in our house (not just “my house” now) outside Santa Fe, which has come to bear John’s stamp in a thousand ways. The yard, which was mostly dirt and weeds when we met, now blooms.
My health continues to be generally good. At times, I’m close to 100 percent well—consistently feeling good, able to exercise as much as I want, and reactive only to the worst buildings—but other times are more difficult. During those difficult times, caring for my body requires significant effort and caution, but even then I’m able to live a full life, and I no longer would consider myself disabled. I continue to experiment on all levels—avoidance, detox, medications, psychological work, woo-woo experiments—to figure out what will restore me.
I also continue to dig into scientific hypotheses that may be relevant to my experiences. The most recent idea I’ve been exploring is that a type of immune cell called a “mast cell” may be overeager in me, going mad and releasing histamine in response to tiny quantities of mold. One could think of it as an especially severe type of allergy that doesn’t show up in ordinary allergy tests. It’s an exciting idea both because it gives a plausible explanation for what’s going on inside my body and it offers a possible treatment, a combination of antihistamines and drugs that calm the mast cells. As this book goes to press, I’m completely unclear whether this applies to me. We’ll see.
Frances and Lao are now buddies. Lao will crouch on a chair, paw extended in menacing invitation, and Frances will run up, biting at him with an open mouth while he whacks her with claws retracted. If Lao is outside and comes running back to the house bushy-tailed, Frances runs past him to find whatever scared him. When Lao catches a mouse, Frances steals it, and Lao accepts that with resignation. While they don’t seek one another out to cuddle, they do occasionally end up butt-to-butt when they join us for a morning snuggle in bed.
I gave up on training Frances to be a service dog after I met John. I didn’t need her help so much with John in my life, plus I was coming to realize that Frances’s exuberant personality made training her as a service dog a struggle. Also, training her required that I devote a significant portion of my attention to her whenever she was with me, and I wanted the freedom to focus all on John.
Over the years, I have finally come to claim the ME/CFS community as my own. I now feel ashamed that, early in my illness, I allowed my unrecognized fear of the severity of my fellow patients’ illness to curdle into disdain. I bought into a narrative of victim-blaming that my fellow patients didn’t deserve and that didn’t serve me. I had to myself descend into frightening levels of illness before I realized the kinship I had with my fellow sufferers.
I’ve now become deeply attached to my patient friends. They did, of course, more or less sav
e my life, and so many of them are very impressive people, carving out meaningful lives for themselves despite enormous suffering and tight limitations. The devotion and commitment of ME/CFS activists particularly inspire me, especially because they’ve persisted in spite of such enormous obstacles and in the face of so little apparent progress. I am one of the many beneficiaries of their efforts.
As my own health improved, I began to feel responsible for helping to improve the situation for ME/CFS patients as a whole. Writing, I figured, was my most powerful tool. In 2014, the Department of Health and Human Services announced that the National Academy of Medicineepi1 was going to be writing a report on chronic fatigue syndrome, and I used that as an opportunity to describe the overall situation for ME/CFS in the Washington Post. In February 2015, when the report appeared, it turned out to be a significant step forward: It summarized much of the research, decried the lack of research funding and the limited research that has resulted, pointed out the hostility of many doctors, and stated that any doubts about whether ME/CFS is a “real” illness should be laid to rest. I wrote an op-ed for the New York Times about it, arguing that the only way that would happen is if the National Institutes of Health started making serious investments into research on the disease. The article was the most popular story on the entire Web site for 24 hours.
That report is just one of several major steps of progress for the ME/CFS community in the last couple of years. In late 2015, the PACE trial empire at last began to crumble. A 14,000-word exposé by David Tuller, academic coordinator of the joint master’s program in public health and journalism at the University of California, Berkeley, finally revealed the scientific flaws of the study to the world. It was a remarkable act of public service: Tuller, who is neither a patient nor a relative of a patient, spent a year investigating the trial on his own, without institutional support, legal backing, or remuneration. He exposed the problems I learned of back in 2011 along with more, publishing his piece in Virology Blog, hosted by the influential Columbia University microbiologist Vincent Racaniello. I wrote a piece for Slate, describing his investigation in condensed form.
Tuller’s heroic effort finally got outside scientists to examine the problems in the trial. Forty-two researchers and clinicians signed an open letter to the Lancet demanding an independent investigation of the trial.
At the same time, a Freedom of Information request from a patient for a portion of the data from the trial was making its way through the British court system. The patient, Alem Matthees, asked for the anonymized data necessary to assess how the researchers’ weakening of their standards of success had impacted the outcomes of the trial. Queen Mary University of London, the institution of the lead researcher, refused Matthees’s request on the grounds that malicious patients, it asserted, would use the data to identify participants in the trial and publish their names.
In court, the university’s key security witness admitted that such identification was impossible with the given data alone, but he suggested a scenario in which “borderline sociopathic or psychopathic” patients stole records from the National Health Service and combined that information with the PACE trial data to identify participants. The researchers presented the news reports about the death threats to support this notion. During questioning in court, however, one of the researchers admitted that none of the PACE researchers nor the participants had ever received a death threat—an astonishing admission after so many public accusations.
The court rejected the university’s claims as “wild speculations,” cited the open letter to the Lancet, and ordered the data to be released to Matthees. In September 2016, the university complied.
By this point, I decided to abandon any pretense of journalistic detachment, and I got involved behind the scenes in the efforts to debunk the trial. I had the joy of watching Matthees and other patients analyze the data with the help of statisticians I linked them to. They exercised a degree of scientific care and caution that I rarely observe even among scientists.
Their findings were shocking, though hardly surprising. The PACE researchers had claimed that 60 percent of patients who received CBT or graded exercise improved and 22 percent recovered. Had they not changed their definitions of “improvement” and “recovery,” they would have had to say that only 20 percent of CBT or exercise patients improved, half of whom would have done so without the treatments. And virtually no patients recovered. Recovery rates were in the mid-single digits for all arms of the trial, with no statistically significant differences.
In other words, CBT and graded exercise are, at best, about as effective for ME/CFS as for other physical illnesses, and they do not lead to recovery.
I broke the news about the reanalysis in an essay in STAT News. It became their most-read article for a week, news stories and blog posts based on my article spread, and the patient community celebrated wildly. Scientific vindication was complete.
However, many public health organizations continue to recommend graded exercise and CBT, and patients continue to be at risk of harm from inappropriate treatments. Much work remains to be done.
And of course, what’s needed isn’t just to get rid of bad research—it’s to get much more of the good kind. There, too, things seem to be changing. In late 2015, the NIH at last promised it would make a real investment in the disease, including by significantly increasing research funding. The NIH quickly began working on an in-house study of ME/CFS. In early 2017, however, it announced that it expected its funding for research in 2017 to be only $13 million, an improvement over $7 million in 2016, but still chump change.
Even if the NIH fails to fulfill its promise to transform research in the disease, I see signs that research on the illness will burgeon. For example, Ron Davis, a giant in genetics research at Stanford University whose son has a severe case of the illness, has become determined to decode the basic physiology of the disease. Despite being rejected repeatedly for NIH funding, he’s plowing ahead by raising private funds through a private foundation, the Open Medicine Foundation. He and collaborators are analyzing bodily fluids from severely ill patients in thousands of different ways using big-data techniques. Before his work, severely ill patients had been almost entirely ignored in medical research. Davis and his colleagues have found some remarkable abnormalities in metabolism and mitochondrial function.
Other high-powered researchers have also become fascinated by the disease. Ian Lipkin, the famous “virus hunter” at Columbia University, Robert Naviaux of the University of California, San Diego, Øystein Fluge and Olav Mella of the University of Bergen in Norway, and Maureen Hanson of Cornell University have all started producing top-notch research on it. Several of these groups have independently discovered metabolic abnormalities, which increases the likelihood that these abnormalities are consistent across patients and central to the disease process.
Furthermore, the patient community has revolutionized itself. For decades, advocates have worked to expose the political problems in our medical research and clinical training systems that have hamstrung ME/CFS research and treatment, but recently, they’ve become more organized and active. A group called #MEAction, cofounded by patient and filmmaker Jennifer Brea, collaborated with other organizations to begin a series of worldwide protests called Millions Missing, highlighting the millions of people missing from their lives along with the millions of dollars missing from research and medical education. In late 2016, #MEAction persuaded 55 members of the US Congress to sign a letter to the NIH asking for increased investment in ME/CFS research. And Brea’s documentary about the disease, Unrest, premiered at Sundance days after her TED talk went up online.
All of this leaves me optimistic about the future for this disease. But until major research findings come through and doctors become far more educated about the illness, patients will continue to be substantially on their own, coming up with ad hoc solutions like mold avoidance.
My experience obviously doesn’t establish that ME/CFS as a whole is
caused by mold or related contaminants, and I strongly doubt that’s true. Accurately assessing how many ME/CFS patients are affected by mold is impossible at this point. Only a small percentage of patients have tried extreme mold avoidance, and we have no statistics about how many of them have found benefit.
Based on my personal observations and what I hear on Facebook and other patient communities, my guess is that it’s a significant component of the illness for many patients—but that’s only a guess, and I wouldn’t be shocked if it turned out to be 10 percent or 90 percent. I also recognize that having benefited from mold avoidance myself, I inevitably see the world through mold-tinted glasses and may well be inclined to overestimate its relevance.
But here are my observations, for what they’re worth. I have intensively counseled around 10 ME/CFS patients who have tried mold avoidance, and all became persuaded that mold exposures contribute to their symptoms at least somewhat. Some have experienced remarkable improvements, though none have improved as much as I have.epi2 Some have found it to be a valuable tool, but it hasn’t been transformative. Others have concluded that while mold indeed worsens their symptoms, the benefits they experience from extreme mold avoidance aren’t sufficient to justify the extreme effort and disruption it requires. One about lost her mind trying it. I also counseled two patients who didn’t have ME/CFS but had related issues that seemed plausibly related to mold, and neither found that mold avoidance had a clear effect.
Many, many more patients have experimented with mold avoidance under the influence of Erik the Mold Warrior and other moldies. Among this larger group, my improvement is far from unique. This kind of success story is quite rare in the ME/CFS community (the notable exception being those who receive treatment with the drug Ampligen, which has languished in patient-paid clinical trials for decades without FDA approval). A very active Facebook group devoted to the nuts and bolts of mold avoidance now has more than 6,000 members,epi3 and many of them are profiting—sometimes enormously—from the methods. It’s become a bit of a movement within the ME/CFS community.
Through the Shadowlands Page 34
