Trial By Error: My Unexpected E-Mail Exchange with Alem Matthees

By David Tuller, DrPH

In recent months, one of the most high-profile people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—Australian Alem Matthees—has reported significant improvement in his condition. He is still bed-bound, and is still not speaking. This is not, by any means, “recovery.” Nonetheless, the change in Alem’s ability to read, consume information and communicate is remarkable. 

As Alem’s mum, Helen Donovan, e-mailed me: “His mind is occupied again…Best Christmas present for me ever!!!”

(Another well-known ME/CFS patient and advocate, Whitney Dafoe, has also reported recent improvements. Whitney’s dad, Ron Davis, a prominent geneticist at Stanford University, dedicated himself to investigating thie illness after his son became sick. In late November, Whitney posted a video of himself speaking—a startling development. More on that at another point.)

Quick background: Alem Matthees managed to “liberate” the key raw data from the PACE trial data by pursuing a Freedom of Information request against Queen Mary University of London, the lead institution. In 2016, a tribunal ordered the university to release the data. They revealed how pathetic the trial’s reported results would have been had the investigators not dramatically weakened their main outcome measures. (He and I were both among the co-authors of the paper that rebutted the PACE trial findings by analyzing the formerly undisclosed data.) 

After all the effort Alem invested in achieving this enormous victory, he experienced a further dramatic decline in his health, which had already been quite compromised. Since shortly after the 2016 tribunal, I have only communicated with Helen, Alem’s mum and caretaker in Perth, the isolated outpost on Australia’s Western coast. She and I have been in regular touch over the years; during this time, Alem’s health has trended slowly downward. 

(I visited Alem and Helen in 2018 and again in March of last year. You can read about my visits here and here. Alem, now in his mid-40s, was clearly more debilitated last year than during my first trip.)

However, at some point after my last visit, Helen let me know that Alem was once again eagerly reading articles relevant to the field and asking questions about specific events involving PACE and related issues. Then, a few weeks ago, I received an e-mail directly from him—the first in almost ten years. He had written to let me know a reporter had contacted him and that he had referred her to me. I was flabbergasted. I e-mailed back to double-check that it was really from him, and not from his mum using a different e-mail address.

“Yes,” he wrote, “it is me (Alem), and it is good to hear from you and be able to read and write again, even if still far below what I could do before. For years, writing just a single word on paper with eyes closed triggered a brain crash.”

In our subsequent exchange, I asked Alem if I could let people know that he’d improved. Here’s the bulk of the message I received back: 

“Feel free to mention me in your blog. Given that people may be curious about what has happened or what allowed me to improve, and also the concerns in the ME/CFS community over the rise of n=1 crusaders in general, I thought it would be useful for me to include some more details taken from notes I have been working on. I doubt you need all the below, but it is easier for me to mostly copy and paste what I already have:

“Lyrica is one of several reasons why I became even more incapacitated in early 2017, and it has taken all this time to slowly ween down the dosage enough to regain a small amount of function. I became dependent on Lyrica during an insomnia crisis, and this had significant adverse effects on muscular and cognitive function. Everytime I tried to decrease the dosage of Lyrica even slightly, it would result in a surge of brain activity followed by a brain crash. The full story is too complicated to summerise here, but I have a plan to attempt to reverse other mistakes made in the earlier stages of the very severe crash in 2017. But I was already bedbound before those mistakes, and I am still bedbound now, still unable to talk, or listen to music, or watch TV. But I will do more when able to, this is a natural instinct or process and needs no intrusive input from others. It happens whenever people get over a cold or flu, I doubt there are tens of millions of people getting stuck in a vicious self-perpetuating cycle of symptoms, fear avoidance, deconditioning, and symptom focusing. It just goes against human nature, unless one has serious mental health issues, which is understandable as secondary consequences, but debunked as primary factors in most cases.

“After the middle of 2025, my ability to communicate very slowly started to improve overall despite some setbacks along the way. Cutting a long story short, now I can sit up and read for a while in blocks between rest. For a while I was only reading paper printouts in dim light, but now I can also use my smartphone with the brightness on the lowest setting. Typing is still more difficult and taxing. Hopefully I will be able to use my laptop PC soon when I get a small appropriate desk with a sliding keyboard tray so I can easily slide the laptop away, since for now I am still too weak to move the laptop around much without strain.

“Very severe ME/CFS takes us into extreme and absurd places that are difficult to believe. I skim read a small part of a few posts from Whitney Dafoe and see that he has managed to write about his own version. I wrote down notes in the first few years which I will eventually convert into text using OCR software, and I am slowly typing notes about the dark ages that occured when reading or writing even a single word triggered a prolonged brain crash. I want to eventually write articles about what I experienced. Hopefully one day I can talk again, but I am in no rush for now and am used to being silent. The last time I tried, something got strained so severely that a few weeks later I could not swallow solid food without almost unbearable pain so I had to switch to blended food. Even then it took years to settle down and there were scary times I really struggled with swallowing at all.”

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What do these developments tell us? Most clearly, they reinforce what we already know—improvement is possible. It is unpredictable and appears to be relatively uncommon, and it occurs for reasons that are hard if not impossible to elucidate, and it could be followed by reversals. But it can and does happen.