By David Tuller, DrPH
During my week in Perth, I visited Alem Matthees twice. Alem is the patient who successfully fought Queen Mary University of London for access to raw PACE trial data; reanalyses of these data have exposed how the extensive outcome-switching led to the improved results reported by the investigators.
Alem’s health has declined dramatically since that 2016 tribunal case. He is bed-bound. He sits up every couple of hours to drink a nutrient-laden smoothie his mother, Helen, prepares from a broccoli soup base. The rest of the time, he is lying down, resting or sleeping. When he needs to, he can get himself onto the portable toilet next to the bed.
Alem no longer speaks, reads, e-mails, watches TV or listens to the radio. His mother used to read to him, often e-mail messages and articles with updates from the ME world. At one point she even read him sections of Osler’s Web. More recently, being read to became too much for Alem. But he remains aware of what goes on around him and what people say. In response to questions and comments, he offers a quick hand signal–thumbs up or down. He can write brief notes to let Helen or others know what’s on his mind.
Alem first e-mailed me in December, 2014. At that time, I was working on what turned into my 15,000-word investigation of PACE, and I had already interviewed Tom Kindlon, a patient-researcher in Ireland. Tom urged Alem to touch base with me concerning his ongoing pursuit of PACE documentation through the freedom of information law. We corresponded on and off over the next months about developments in his efforts and my writing. After the Trial By Error series appeared on Virology Blog, from October 21-23, 2015, Alem wrote me a very insightful note, with keen advice about how to parry possible responses from the PACE authors.
Not long after, the Information Commissioner’s Office released a decision in Alem’s favor, ordering Queen Mary University of London to provide the raw trial data he sought under a FOI request. (I was assured by those who know about these things that the ICO decision must have been written before my series was posted and therefore could not have been influenced by my work, had I tried to imply otherwise!) In November, QMUL surprised no one by appealing the decision to the next level, the First-Tier Tribunal. The tribunal hearing was scheduled for April, 2016.
As Alem devoted himself to preparing his comprehensive and masterful brief for the tribunal, he asked me for contacts of some of the experts I had interviewed–those who had excoriated PACE. He wanted to ask them to write letters of support for his case. At the same time, I orchestrated an open letter to The Lancet that outlined the trial’s methodological lapses and declared that “such flaws have no place in published research.” I hoped such a letter would be helpful to Alem’s case.
Some dedicated activists helped me reach out to leading scientists and clinicians. In the end, 42 experts in the field signed the letter, which was e-mailed to Lancet editor Richard Horton and posted on Virology Blog in February, 2016. *[Same-day correction—the previous sentence originally identified the year as 2018.] Alem included the open letter as part of his package of evidence for the tribunal. In denying the QMUL appeal, the tribunal decision noted the “impressive” roster of names on the Lancet letter. The letter represented a rebuttal to the argument that PACE was widely accepted in the scientific community and that opponents were limited to unstable or militant patients.
Alem’s massive effort obviously took a toll on his health. At some point last year, he stopped being able to communicate by e-mail, and I began occasionally hearing from Helen. She asked me to send her some articles to read to him; she kept me informed about how he was doing. That news was never very good.
Alem’s battle should not have been necessary. The PACE authors manipulated their data and achieved better-looking results than those they would have reported under their protocol measures; then they rejected as “vexatious” freedom-of-information requests for their raw data; then they fought and lost in the court system after Queen Mary University of London spent 250,000 pounds defending their right to withhold the data. Had they behaved as honest scientists and reported their original results, or released the data when asked, Alem could have harnessed his limited resources to other ends.
When I decided to come to Australia, I knew I could not not visit Perth, despite how far the city was from everything else. (Four or more hours, coast to coast!) Having invested the time to get to the country in the first place, I would have felt like I were dissing Alem to leave Perth off my itinerary. I wanted to make sure he knew that patients around the world were in awe of what he’d accomplished, as was I, and that his efforts had been essential in exposing the data shenanigans that had allowed the PACE authors to declare success.
I met Alem and his family on Thursday, April 12th–the day after I flew to Perth from Adelaide. Helen had invited me to dinner. Alem, who is in his late 30s, has been living with Helen and his step-dad, Jim, in their modest two-story townhouse in Como, an inner Perth suburb, since his health deteriorated. Alem’s younger sister, Mya, was visiting from Sydney during my time in Perth. Alem can be left on his own, but not for long periods; these days Helen spends most of her time at home. Occasionally her mother, who lives nearby, relieves her for a few hours. (I conducted an interview with Helen and plan to post that when I get to it, hopefully soon.)
Helen told me that Alem knew I was coming and was looking forward to it. She gave me several sheets of memo-sized notebook paper, on which he had laboriously written a note. On each page, he had scrawled a single sentence in frail block letters–two or three words per line. The lines dragged downward across the page on a steep diagonal. Helen had typed out the message:
For David Tuller April 2018
I can only write a few sentences at a time while blindfolded
Thank you for your visit to Australia
I wish I was well enough to meet your properly and be able to have a discussion
The difficulties of very severe ME/CFS are beyond what I imagined
I am bedbound and only sit up to eat or use the portable toilet
These activities are highly taxing
I am blindfolded and earplugged all the time
I cannot talk and can only listen to a few sentences at a time
My muscles and some other tissues have become highly prone to strain or injury
Many factors were involved in my demise not simply the PACE FOI request
But the excessive reading and writing involved no doubt contributed
Thank you for coming to visit me personally
When it was time for Alem to drink his broccoli-soup smoothie, I accompanied Helen upstairs to his bedroom. Alem was lying down in a bundle of covers. She leaned over him and spoke softly: “Alem, David’s here to see you.” He raised himself to a sitting position, legs over the bed, facing forward, eyes closed. His face looked drawn, and he’d grown out a scraggly beard, but he still resembled the soulful man I remembered seeing in photos accompanying news accounts of the tribunal case.
I sat on a chair to his left and stayed for maybe ten minutes. I’d asked Helen if I could hug him and she advised me that he couldn’t take that much physical contact. So I grazed his hand lightly a couple of times. I told him I came to Perth to meet him, that patients everywhere wanted to let him know how much they felt he’d done for them, that I’d interviewed Andrew Lloyd, that people were sending their best wishes. I told him the PACE reanalysis paper by Caroline Wilshire, on which he and I were both co-authors, had caused a stir. I told him I’d come to visit again before I left Perth.
As I spoke, Alem’s face remained still, but he flicked me a series of thumbs-up gestures. I could sense that he absorbed what I’d said. Before I left the bedroom, I hugged Helen. Her shoulders shook for a moment, then she turned to tend to her son.
The following week, I spent most of a day with Alem’s family. Helen gave me a follow-up note Alem had written after my first visit. “I know when you talk to him, he doesn’t seem responsive, but he understands everything,” she said. My visit had given him a big boost, she added.
This time I deciphered Alem’s handwriting myself:
For David Tuller April 2018 Part 2
I hope you enjoyed your stay in Perth.
I did not hug you only because it risks straining muscles (long story)
All my eye muscles are extremely affected–I cannot open or focus them long enough for eye contacting or looking properly
Doing so would cause major strain with a prolonged recovery
Overall, I had improved a little by end of 2017
Then had some setbacks in early 2018 that I am still recovering from
But I am not as bad as I was in mid 2017.
I am grateful for everything you have done to publicize problems with the PACE trial etc.
I appreciate the extra distance you travelled to be in Perth.
I appreciate the messages of support from yourself and others around the world.
I have a good family who take care of me. (especially mum)
Stay in touch–kind regards, Alem Matthees
PS–Keep up the excellent work you do, we still need it for a while longer!
That evening, I again sat with him in his room for a few minutes while he drank his smoothie. I can’t remember what I said; phrases I hoped would sound soothing, I guess. I felt helpless. I wanted to do more, I wanted Alem to be well, but I knew there was nothing I could do about that. Yet meeting him helped me remember why I had pursued this effort to debunk PACE in the first place, and why I felt it was important to continue.
To an extent, the goal of debunking PACE has been accomplished, in large part thanks to Alem. If all were well in the purportedly self-correcting world of science, the debate would be over. To those viewing the matter objectively, the case is closed. That’s why PACE is now used in doctoral epidemiology seminars at Berkeley as a terrific pedagogical tool–a prime example of how not to conduct a clinical trial. That’s why the U.S. Centers for Disease Control dropped the two treatments; presumably the agency would have defended PACE and the science behind the CBT and GET recommendations had officials felt able to do so.
But the CBT/GET ideological brigades and those who have supported them, like journal editors, remain in positions of authority in the U.K. academic and medical establishments, and elsewhere. These influential gatekeepers refuse to acknowledge reality–I suppose that is in the nature of cults and faith-based movements. People who defend studies in which participants are simultaneously “disabled” and “recovered” on key measures are obviously harboring deeply rooted dysfunctional cognitions. Unfortunately, as my time with Alem reminded me, it is patients who have borne the associated burdens and suffered the collateral damage.