Trial By Error: My Visits with Alem Matthees, 2025

By David Tuller, DrPH

*This is a crowdfunding month at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120

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In 2018, I spent six weeks in Australia, visiting multiple cities on a kind of “chronic fatigue” tour around the country. (In Australia, doctors and patients more often than not referred to the cluster of overlapping illnesses now generally being called ME/CFS as simply “chronic fatigue.”) Near the end, I spent five days in Perth. Local advocates arranged for me to give a talk, do some lobbying with local government, and so on.

But the main reason I flew five hours across the continent to the lonely outpost on the west coast was to meet Alem Matthees, the patient who had pursued a successful quest to liberate the raw PACE trial data from the clutches of Queen Mary University of London (QMUL). The PACE trial, whose first results were published in The Lancet in 2011, purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) were helpful and even curative treatments for ME/CFS. In reality, the trial was a fraudulent piece of crap.

Among many methodological and ethical lapses, the authors weakened their key outcome measures from what they had promised in the protocol and omitted key data from their papers. In the process, they misrepresented their findings and violated core principles of scientific research. Alem sought the missing data under a freedom of information request—a prolonged battle that ended up in a tribunal hearing in April, 2016.

In advance of the hearing, Alem prepared a massive and masterful brief and submitted it to the tribunal. That summer, the tribunal ruled in his favor and against QMUL, the institutional home of the lead author of the main PACE trial report. The subsequent data release led to the publication two years later of a definitive rebuttal of the PACE trial claims. (Alem and I were among the co-authors of this paper.) After Alem’s legal victory, it was no longer necessary to speculate about how bad the PACE results were likely to have been. The reanalysis documented that, per the measures as outlined in the protocol, the interventions did not lead to recovery, and any reported improvements were so marginal that they could easily be accounted for by bias.

The PACE authors have offered laughable explanations and excuses for their flawed decision-making. These defenses have failed to salvage the trial’s reputation. In the U.S., the Centers for Disease Control and Prevention “disappeared” mentions of PACE and its interventions in 2017. In 2021, a new set of ME/CFS guidelines from the UK’s National Institute for Health and Care Excellence (NICE), which develops influential clinical recommendations, rescinded the agency’s prior support for the GET/CBT approach.

Unfortunately, Alem’s health deteriorated in the wake of his arduous exertions. While working on the PACE case, he was living alone in a flat not far from his family. Afterwards, he began to rely more and more on support from his mother. In 2017, he moved back home. By the time I came to visit in the spring of 2018, he was mostly bedbound in a small, dimly lit room, like so many other severe patients. (I wrote about that trip here.)

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My recent trip to Australia

I recently traveled to Australia for almost a month, leaving San Francisco on March 7^th and returning on April 4^th. Two weeks ago, just before my flight (actually, three flights) back to the current dystopian reality at home, I spent three days in Perth. I wanted to see Alem again and catch up with his mum, Helen. She and I had stayed in touch since my last visit, and I was looking forward to connecting again in person.

On the morning of Monday, March 31^st, Helen met at the airport and drove me back to the family’s cozy home in a neighborhood of attached two-story houses, just south of Perth’s city center. Her husband Jim, Alem’s stepdad, greeted me from his armchair. Since my last visit, he’d been diagnosed with Parkinson’s as well as vascular dementia. He’d fallen several times, and he struggled with short-term memory loss. Helen now cares for him as well as Alem.

The airport is a 15-minute drive away. For Helen, picking me up seemed to serve as a much-needed respite–a justifiable reason for leaving her two dependents, even briefly. In case of emergency, Alem has an alarm by his bed that rings on her phone. Jim’s daughter, also named Helen, was currently visiting from England for six weeks to spend time with her father and help with the overall caregiving. Having her stepdaughter around meant Helen could get out for short periods.

Alem is 45 and Jim is 83. (He turned 84 shortly after my visit.) Helen is 70. I’m 68, so I can empathize with what it might be like to carry such a burden at this age. Moreover, Helen’s own mum, who was 95 and lived nearby, passed away in December. They were close, and Helen feels her absence keenly. Mya, Alem’s younger sister, has lived in Sydney for years but provides long-distance support and returns to Perth regularly.

I knew that Alem’s health had deteriorated further since my previous visit. Helen filled in some of the details. He was continuing to lose weight slowly, and he’d become even more sensitive to stimulus–sound, light, touch. She used to read him articles she knew would interest him, but then that became too much.

Before he could communicate by writing notes, Helen said, but no longer. “He signals with his hands. I’ve been doing this for eight years now, so I understand what he wants.” Alem knew I was coming, she said, and that it meant a lot to him. “When I told him, he gestured with his hand.” She mimicked a scribbling motion. “He remembered he’d written notes to you the last time. He can’t do that now.” But Alem still understood everything, she said.

Helen long ago accepted the reality of Alem’s situation, although she acknowledged getting burnt out. “I’m not complaining, it’s a privilege to take care of him.” She expressed concern about the future, however. “I’m worried what will happen if something happens to me. No one could take care of him like I can.”

Every few hours, Helen brings Alem a cabbage soup-ricotta cheese smoothie, with some supplements—the only thing he wants to eat these days. Each week, Alem’s dad, Norm, and stepmother, Trish, who live near Perth, prepare and deliver a vat of pureed cabbage soup, which Helen divides into more than dozen smaller containers. Alem can still sit up and drink his meals on his own. He can also still get to the commode next to the bed when he needs to.

The first evening I was in Perth, Helen and I went upstairs together. We donned surgeon’s masks. She opened the door to Alem’s room and entered. “David’s here to see you, darling.” She spoke in a soft lilt. “He’s just going to stay for a few minutes and talk to you, ok, darling?”

As she left and I entered, the light from the hall behind me split the dark. I could make out that Alem had raised his left arm–a sign to his mom that she could let me in, or a greeting to me, or perhaps both.

Helen closed the door gently behind her. Now there was only blackness, and silence. I broke it. “I just arrived in Perth. I’m staying for a few days so I’ll come see you again. I’ll also spend time with your mum.” I wasn’t sure what else to say, or how to say it. So I started talking again. I told Alem that people kept asking if I would be seeing him during my trip to Australia. Of course, I said. “It wouldn’t have occurred to me to visit Australia and not come to see you and your mum.”

I sensed Alem’s body shifting before I registered that he had raised his torso to an upright position, his legs hanging off the side of the bed. The unexpected movement startled me. “Oh, you’re sitting up,” I said, more to myself than him.

My eyes had adjusted slightly. I could vaguely see the shape of his torso and head. I knew not to put my hand on his skin. “I don’t want to touch you because I know that can be hard. But I’m putting out my hand and if you want to touch it, you can.”

I rested my right arm on the small table next to the bed, with my hand extended forward. I felt Alem’s hand graze against mine. He wrapped his fingers around a couple of mine, or maybe I wrapped mine around his. Then I felt his other hand resting on my other fingers. The darkness held us close. We sat that way for…10 seconds? 20? Time dissolved. Then our hands separated, and his drew back.

I started talking again. “I wish more had happened in terms of medical discoveries. There’s a lot of research going on about Long Covid and more interest in ME. They are finding things and hopefully that will lead to the discovery of treatments that can help.”

I didn’t know how much, if anything, Alem knew about current events. I assumed he had no awareness of the U.S. government’s ongoing destruction of health and medical research—and what it meant for ME/CFS and Long Covid specifically. It seemed unnecessary to mention the subject. I spoke a bit more, then left the room.

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Messages for Alem from patients all over

I stayed in Perth until my flight back home left late Wednesday evening. I spent much of my time with Alem’s family and went up to his room two more times—once each day. As with the first visit, I didn’t stay too long for the second.

I again mentioned how I’d heard from many people when they learned I was coming to Australia. “I got so many messages saying, ‘I hope you’re going to see Alem’, ‘Tell Alem how much we appreciate his work,’ what a hero you are. It was really important to me that I was able to come here and tell you that myself.”

I told Alem something Helen had told me. She had no idea what exactly he was up to when he was working on the PACE case. She knew it something about some research and that it was very important to him, but not much else.

Only later on, when she had to take over more of his affairs, did she have an inkling of what he’d taken on and achieved. “She only learned after how incredible it was and what impact it’s had.” I also told him that the release of the PACE trial data helped paved the way for the 2021 revised NICE guidelines. “And that was a huge change, it has really helped change people’s attitudes.”

On Wednesday evening just before 8 pm, Helen was preparing Alem’s evening meal. After feeding him, she was going to drive me to the airport, where I would start my long journey home, via stops in Sydney and Fiji. Helen scooped some ricotta cheese into a container of soup and stirred vigorously, then popped it into the microwave. After a brief spell, she removed it and dipped in her pinky to assess the temperature. Alem liked it just so–not too hot, not too cold. She poured the mixture into a thermos, then dropped in an ice cube to cool it down a bit.

I followed Helen upstairs. She opened Alem’s door. “I’m coming in with your meal now, darling. And David is coming in with me. He’s leaving tonight and wants to see you again before he goes, all right, darling?” She put the thermos on the small table in front of the bed, and left Alem and me together in the dimness.

Alem was sitting up. At intervals, he picked up the thermos from the small table in front of him, gripped it with both hands, and gulped down some of the contents. I spoke quietly, mostly variations of what I’d already told him. I didn’t have much else to say. He knew I cared enough to visit. He also knew that patients everywhere understood what he’d done. He knew there had been some changes,and also that there were still no treatments.

Helen opened the door and stepped back in, bringing some light with her. I could see him better now. He was, as expected, pale and gaunt. His shirt hung loosely to one side. But a dark bristly set of facial hair gave him a surprising touch of gravitas and distinction. “I like the beard and moustache, looks good!” I said.

Helen smiled. “I trim it.”

Alem gestured something. Helen interpreted. He was having some trouble hearing me, she explained, and could I send a message that she could read to him? Yes, of course, I said.

I stood up and prepared myself to step away. Alem brought his hands together as if in prayer—the “thanks” gesture. I felt an urge to hug him and knew I couldn’t. I wasn’t sure when or if I’d see him again. I wanted to linger longer and tell him something more, something perfect. But it was time to go.