Trial By Error: My Visits with Alem Matthees (Reprise)

By David Tuller, DrPH

At this time two years ago, I was in Australia on a six-week work trip. As part of my tour, I visited Perth so I could meet and spent a little time with Alem Matthees. I also got to spend time with his lovely family–his mom Helen, his step-dad Jim, and his sister Mya, who was visiting from Sydney.

In recent weeks, the world has been forced to stay home. This unnatural state of affairs has heightened my awareness of the plight of Alem and other severely ill patients, whether with ME or some other illness, who have no choice but to stay home, and not just during a pandemic. Perhaps able-bodied people like me will remember after this experience not to take our ability to leave our homes for granted.

In light of these reflections, I decided to re-post a blog I posted on May 7, 2018, about my visits with Alem.

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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. 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
Alem Matthees

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.

 

 

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  • CT 10 April 2020, 5:43 am

    “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. ”

    And so it goes on with ‘MUS’ too, with a refusal to correct the literature that demonstrates a reckless lack of personal responsibility (deferring to so-called ‘experts’) and a disregard for the health and wellbeing of millions of patients. I’m torn between ‘self-congratulating suckers’ and ‘indoctrinated idiots’ as an adequate description for such people but, whatever they are, they don’t deserve to be in the positions that they fill.

    As Lady Shambles noted in the last blog, the coronavirus crisis has highlighted that health ‘experts’ can back high-risk strategies that appear to be economics-based rather than being in the immediate interests of public health and safety. So it is with MUS, but unfortunately we have few opposing experts to tell them that they’re wrong……(or who are brave enough, perhaps?) MUS proponents may conceivably have some wider goal of protecting healthcare funds for what they perceive to be some greater good, (e.g. more money for psychiatry or for patients who ‘really deserve it’ ) but they seem prepared, happy even, to throw millions of patients under a bus to achieve it and to destroy diagnostic medicine in the process.

  • CT 10 April 2020, 6:03 am

    Apologies – I should have written – “As Lady Shambles noted UNDER the last blog..” !

  • Wendy Boutilier 10 April 2020, 10:09 am

    Thank you for giving people a glimpse into what patients with Severe Myalgic Encephalomyelitis live with. This vulnerable patient group can’t speak up for themselves. And more importantly they do not have Chronic Fatigue Syndrome. They live devastating lives with very little understanding from the CFS/SEID community.

    As one patient with severe ME puts it;
    We are never unaware of the range of symptoms that rage through our body, and are over ridingly dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout their whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the souls of my feet, the tip of my nose, and many report that even my hair hurts. We all burn, throb, tingle, itch, and hurt in ways indescribably unbearable, along with other unusual sensations that flow and ebb, expand and contract, and irritate beyond belief. Our throat hurts, eyeballs are swollen and itch, prickle, burn, throb, unceasingly, ears hurt to touch inside and out and noise, even a whisper can be excruciatingly loud and painful. Street noise, cars revving, doorbells, telephone, dogs barking,conversations at normal sound levels are all sources of torment for severe ME patients. The screeching sound of knives and forks on plates.

    Any regular sound is intolerable such as a clock ticking, a newspaper rustling, a plastic bag being opened, or someone banging, a lawn mower, a hoover send out devastating sound vibrations that I feel not only in my ears but in my whole body as pain. I become completely alienated from the world I seemingly and supposedly exist in.

    I cannot bear to see people because they exhaust me with questions and conversation, with thudding foot steps, loud voices; they irritate me with their insensitivity and unawareness of my hypersensitivity, and hurt me physically – a hug or a pat on the back can be like a huge blow.

    Light is intolerably bright, television and computer screens hurt my eyes, reading anything causes my brain to somehow overload so that I cannot receive or process information . Written or verbal descriptions both have the same affect. Letters jump around the page or make no sense or shape at all.

    I stare a lot because it is too painful to focus. I say yes or nod when I cannot even understand the conversation because it is making no sense and my mind has become a fog of nothingness. My head has a huge pressure on top with the deepest of throbs that incapacitates me completely physically and mentally. I often feel as if people chewing even are exaggerated by my hyperacusis .

    As I lie down I feel not only my head throbbing in unstoppable pain waves , but also my hands, my feet, my calf muscles, my face, my lips, my whole body is actually throbbing in unison. As I lie down too weak to sit up any longer, my muscles spasming and seeming like jelly too insubstantial to hold my back upright, I find that
    I cease to function in even the most basic of movements. I cannot move my fingers. I cannot move my legs or my arms. I cannot reach the glass of water by my bedside despite I am gasping with thirst and my mouth is parched dry. My eyes are dry too, the tear film will not stay covering it so that moving my eyeballs is like rubbing them with sandpaper. Often it seems as if i am looking down a dark tunnel. I do not have full vision.

    As I fall into sleep or near sleep mode my whole body ceases to move completely and totally. When I sleep I am still semiconscious for a lot of the time, the pain in my body penetrating my awareness or tormenting me with lucid dreams in Technicolor. In the deepest sleep I might feel innerly peaceful but then struggle to reawaken.

    As consciousness arises I discover I cannot move my eyelids, I cannot open my mouth or speak to call out for help. My breathing is uneven and difficult with my diaphragm muscles struggling to move evenly and properly. My whole body pain has intensified to a vast degree . There is no possibility of movement of any kind. There is no response to any voluntary command to move. My whole body is an immovable throb of burning pain. My face has become palsied.

    Whole areas of my skin have become numb, particularly severe is my left side,: especially my left ear neck, face and arm, though sometimes oddly enough it switches so that my right side is worse. I have left sided head pain which is intensified greater
    on that side, for it is still present on the other side too. My lips are numb, my nose is numb, my eyeballs feel numb and grotesquely enlarged. I cannot even move my littlest finger let alone my hand. My feet are numb and my limbs are cold.

    I lie like this with my bladder bursting, desperate to go to the toilet yet unable to call for help and unable to bear being touched or moved. Any attempt to move me will cause me to spasm and go into such agony that I cannot tolerate it. And so I wait. I wait and wait until touch becomes more bearable, till speech becomes possible, till fingers can be moved and limbs manipulated and knees will lock so that I can
    hopefully sit then eventually stand with support . The wheelchair waits but motion brings new difficulties. Standing brings dizziness and black outs. Motion brings vibration and impossible irritation.

    This is just the beginning of what patients with Myalgic Encephalomyelitis as per Ramsay, Hyde or ICC live with but are forgotten and ignored because they don’t have CFS/SEID.

  • Lois Addy 10 April 2020, 5:16 pm

    I’m only moderately severe, and pretty stabilised. I’ve been finding it very strange that normal healthy people are struggling with staying home – for me nothing has changed, except the carers now have to shout through a mask and we use a lot of paper towels for drying hands. It’s not even that I’m going out significantly less because I wasn’t going out much anyway.

    I’m also finding I have no idea how long normal people have been on lockdown, because my days haven’t changed, I have my hobbies, my friends online, pootling around near the front or back door on good days, the occasional scooter trundle to the river or (weekly) groceries at a time when there’s virtually no-one around (yeah maybe I shouldn’t be doing the groceries thing, I’m thinking about that a bit more this week). My family aren’t coming on saturday anymore, but we talk on the phone more instead.

    For people who are severely severe, or very severely so, there’ll be even less change – except there is more change in some ways – carers not able to come, family at home more than usual therefore taking up space and quiet and energy, as well as worries about getting a grocery delivery slot.

    One thing I’m finding I’m dreading is that there’s been this sudden blossoming of life happening online in real time (like church services and theatre for free). I’m REALLY going to miss that when everyone else gets to leave lockdown and have normal lives again.

    Do you know how Alem is now David? I do wonder about him and Karina Hansen and others I’ve heard about in the past.