By David Tuller, DrPH
In one of past year’s more amazing developments in our domain of interest, Alem Matthees has been actively communicating again. On December 10, 2025, I received my first e-mail from him in almost ten years. He has also been expressing himself publicly with multiple posts on Blue Sky.
Quick background: Alem Matthees managed to “liberate” the key raw data from the fraudulent PACE trial by pursuing a Freedom of Information request against Queen Mary University of London, the lead sponsor. 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. (Alem and I were both among the co-authors of the paper that rebutted the PACE trial findings by analyzing the released 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 communicated largely with Helen, Alem’s mum and caretaker in Perth, the isolated outpost on Australia’s Western coast. Until this unexpected revival, Alem’s health has trended slowly downward.
Via e-mail, I recently asked Alem some questions about how he passed the time during his most severe period. How much was he aware of? How much was he able to think about things? Or was he just blanked out? He wrote a very extended response.
I knew others would be interested in Alem’s observations, so I’m sharing what he wrote—with his consent, of course. (Alem has edited it a bit for clarity and added headlines for the sections.)
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LIMITS AND THOUGHT LEVELS
I had a strange relationship with the ability to think, maybe because I always liked to think. There were multiple levels of thinking seemingly depending on energy levels or state of PEM.
Much of the time I had to keep thinking to a strict minimum, or remain floating in emptiness while being mentally quiet as much as possible, otherwise I would be rapidly thrown into a brain crash within seconds, which triggered a stress response as if I was literally harming braincells. But stillness had to be passive, little or no room for any effort or concentration.
The next step up from that horrible state was weak or subtle daydreaming and casually drifting from thought to thought, not being able to dwell on one subject longer than a moment, because doing so seemed to wear out specific neural pathways very quickly and badly to the point where starting to think about that issue later on would again within seconds start the symptoms of a brain crash and stress response much like stressing a pre-existing injury.
I therefore had to avoid certain topics, especially if they required effort or involved any excitement (positive or negative), or avoid topics I thought about too much in the past. It is difficult to describe how restrictive that was for large sections of thought to be off limits.
This also crippled my ability to make significant decisions. For example, how to end the lease on my apartment and what to do with my possessions, was delayed by years. Everything was halted.
Some subjects were absolutely off limits for months or even years. I ran my brain into the ground thinking about electrotechnics and could not revisit it for years. Some easier subjects could be revisited after a few days or weeks of avoiding them. Some subjects seemed relatively safe. If I found a safe subject, I would tend to dwell on it and risk making it unsafe.
The mind often effectively felt buried in the ground unable to move. Or the slightest thought or sensory input could trigger a brain crash, so the only choice was to stay still without effort and ride it out until a brief island of mental activity was allowed. The sheer inability and incapacity to think about anything while mostly awake with ME/CFS is a unique torture.
The primary types of thinking were visual mode and word mode. But there were other types, it just depended on which ones were dominant. Obviously thinking about daily events involves more than visual imagination but is also for example, tactile, auditory, emotional. But those were more taxing so I had to remain as stoic as possible within the confines of illness.
This limitation included any types of enjoyment, the more intense the more taxing it was. This included merely thinking about food or music, which could cause brain crashes. If I dreamt about music in particular, it would often haunt me for a while after waking up because I missed it so much but was unable to listen to it and still cannot listen to it for now.
(I gained much inspiration from music and it was a big part of my life until it was taken away. Music still sounds partly distorted and harsh like nails scraping on a chalkboard, and any sense of euphoria that filters through ends in something resembling a post-adrenaline dump and brainfog malaise hangover. Maybe my brain just needs to slowly re-adapt with time and patience.)
There was also a problem where, thinking about doing things in imagination land was one thing, but planning or rehearsing physical movements and coordination was noticeably more taxing. It felt like the brain struggled to plan or coordinate and drive muscles. The existence of multiple levels of thinking, corresponding to power levels with their own threshold and tax, stood out. There are many levels of severe ME/CFS and disability is not linear but practically exponential.
I was also functionally blind and did everything in the dark by feel and guesswork. On a good day, I could slightly open my eyes for a split second a few times a day when needed.
But I also had periods where my mind drifted off into wild tangents and imagination land, due to sheer desperation for distraction, due to trying to figure how to escape this mess or mitigate some pending issue, due to being on medications with a rebound effect when wearing off, and due to the effects of stimuli-deprivation causing a quasi-psychedelic experience which reanimated my childhood experiences of altered states of awareness during bedtime.
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FOOD FOR THOUGHT
At first I spent a lot of time thinking about whatever I would have normally thought about. Then I started drifting towards thinking more about my entire life from infancy and everything I remembered learning. Part of me felt like my entire life had been preparation for the abyss, leading up to the day the proverbial gates of hell opened up, because there is no way I would have survived coping with it if thrown in at the deep end when first becoming ill in the 1990s.
Part of it felt like the saying where shortly before death your whole life flashes before your eyes, except for me it was being dragged out in slow motion over years and in painstaking detail with additional commentary. Even if limited by illness, 9 years is a long time to accumulate thinking time when there is literally nothing else to do all alone in the dark 95%+ 24/7/365.
Due to lamenting over my then current predicament and past mistakes, and wondering how things could have been if only, I became obsessed with various scenarios of time travel to intervene in the past. Time travel is impossible so I also became obsessed with the possibilities of parallel universes. I created fictional pocket universes in my mind so I could pretend that if I died I would somehow escape illness and death and finish my projects and interests.
Over time it became more difficult to find something fresh to think about. If I found something new to think about, whether from a vivid dream, or a piece of news, or a random thought, or different perspective, I struggled to resist the urge to lunge into deep immersion within it.
Unless I was stopped by brainfog malaise, it was irresistible until I wore out my brain, but again there were long periods of forced stillness or incapacitation inbetween, or being unable to focus on the same issue for a moment before needing to move on or stop thinking altogether.
Living with very severe ME/CFS was a 24/7 occupation where every moment was a highly delicate balance, unrelentingly bitter struggle, scraping the bottom of the barrel, with a myriad of prolonged complications from the smallest mistakes. This meant that while I tried to think to distract myself, there was typically a sense of agitation in everything I thought about.
What I hated the most about very severe ME/CFS was the unrelenting complications or prolonged torture from the slightest mistake that would not even register as a mistake when ‘only’ severely affected, and then being stuck in a seemingly never-ending crisis mode where the activities of basic survival would perpetuate the crisis itself to the point of utter absurdity.
There were ridiculous cost-benefit comparisons, unbelievable recovery times, and a major risk where an overexerted muscle would not recover in time before deconditioning set in and function in that muscle was lost long-term and often practically impossible to reverse once lost.
As my muscles and other tissues became highly prone to strain or injury, all activities and movements became strictly procedural with minimal room for deviation before the delicate balance was broken, taking a long time to restore. For example, straining one muscle would prompt the use of other muscles to compensate but then those muscles became strained too.
There are several examples which would need their own article to explain in detail e.g. struggles with lifting food to mouth, swallowing, sitting up and lying back down, rolling over in bed, going to the toilet, changing clothes, scratching itches, rubbing eyes, basically anything.
Due to the invasiveness and pervasiveness of these absurdities, I often felt forced to explore through every corner and crevice deep inside my mind, like an ant searching through a maze to escape the rising tide that followed me wherever I went and to find any island to stand on until that island was submerged too so I had to move on again, drifting from one thought to another.
The frustrating inability to communicate often resulted in disagreements or misunderstandings that lingered for weeks but could have been resolved in 5 seconds of writing. I often spent time trying to figure out how to better convey what I wanted to communicate.
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MYSTERIES OF LIFE
At some point I tried to tackle cosmology and the great mysteries of life. What is emptiness and why is there something rather than nothing? What is the reality of chaos, inertia, particles, stability, mass, and spacetime? What is dark matter and dark energy? I spent much time trying to figure out where qualia and consciousness fit from a perspective of physicalism.
I repeatedly visualised or explored the following subjects in detail:
Creation and dissolution of the universe. Quantum fluctuations seeding the structure of the universe. Formation and death of stars. Motions of star systems and galaxies. History of human awareness expansion in relation to the universe. Past and future of life on Earth. How technology and progress often follows S-curves. Practicalities of space colonisation. Potential and limitations of artificial intelligence and synthetic lifeforms. Cyclic nature and waveforms of everything in existence. The never-ending struggles between opposing forces seeking dominance or temporarily settling in equilibrium. The intricate and/or subtle dance between determinism or cause/effect and randomness as well as the thin veneer of what we label free will. The apparent emergence of many from the one. The evolution and interactions of the hypothetical multiverse. How nature combats entropy through replication, natural selection, and recycling of components.
I contemplated the interconnectivity and interdependence of everything, beginning with the notion of six degrees of separation. I watched a large amount of TV between 2002 and 2016, then over time while bedbound I could link just about every single actor and production I remembered ever watching, within 6 steps or less. Some actors or productions are huge network hubs.
For example, if something can be linked to any major production such as Star Trek, Star Wars, The Matrix Trilogy, Lord of the Rings, then it could be linked to basically anything in the entire industry no matter how obscure, because every production had at least one actor that had been in something else, and it only took one to link things together. This ended in another brain crash!
I was desperate to find meaning and something beyond this world. My mind seemingly glimpsed countless scenarios and alternate universes or possibilities spanning across multiple dimensions of time and space from the smallest microcosm to the greatest macrocosm, into eternity or the eternal now beyond local time. I knew I was heading into the land of profound-sounding nonsense.
I only had my inner mind to work from, I was unable to read or watch anything to anchor it. Often I would explore a tangent for days or weeks and then realise it was fundamentally flawed. Anything that seemed profound also risked triggering an emotional response which triggered PEM.
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DREAM THEMES
I have always had vivid dreams since a toddler, and when very severely ill I still dreamt of many different scenarios living out different realities in which I was typically handicapped with ME/CFS to some extent but usually not as bad, because it pervaded everything to some degree, but I could still do things and have thoughts in dreams that I could not do while awake.
One example besides physical activity was music and emotion. Sometimes I would dream about a strong emotion or wonderful melody I remembered, but if I thought about any melody while awake the brain started crashing from the sense of emotion even if relatively mild.
So there seemed to be efficiency in the dreamscape, but that efficiency only went so far before I could feel my brain crashing in the dream. If brains can crash or brownout in real life when awake, it makes sense this can happen in dreams when very severely affected. Dreaming was often exhausting and PEM inducing, especially if more intense than usual. I have a long history of lucid dreaming, so I often observed all this and recognised it while still dreaming.
If I ate something that did not agree with my system, or physically strained something, or had an extra stressful time awake, or in PEM, the tone of dreams typically became negative. In fact, the negativity of dreams was a good approximation of relative status to the current baseline.
I had horrible nightmares of decaying flesh, being pursued by malicious forces who wanted to harm or frame me, or being crippled with illness in a hellish state. During the years I was emaciated, I often dreamt about being a living skeleton hunched over when shuffling, much like real life. I often had frustrating dreams about being unable to use a computer, either due to the brain crashing from processing words, or due to the internet not working properly.
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SENSORY INTRUSIONS
I had the common ME/CFS hypersensitivities to sounds and sensations but I also had to endure something else on top of all that: I developed extreme skin sensitivities and dryness partly due to the skin condition pellagra which you were fortunate enough to not see in person (there is a Wikipedia article on it if you feel brave, I still have to find the photographs that were taken at the time). It is easily reversed with niacin (vitamin B3) but I could not tolerate supplementation, although over time it seems I was able to increase food intake enough to help.
(Pellagra can also be treated with l-tryptophan but I was already on a high protein diet and could not tolerate l-tryptophan supplementation either because it increased sensitivities.)
An extreme sense or tone of dryness permeated all sensations, thoughts, and dreams. Two of the symptoms of pellagra are psychosensory distortions and psychomotor disturbances, which I experienced. Everything looked, felt, or sounded harsh and sharp and dry. Fabrics and tissues felt like sandpaper (silk sheets helped somewhat but fresh sheets would remove body oil).
If I scratched too much, the sensation of scratching would reverberate inside my mind for hours. Between 2020-2024, I could no longer scratch my skin without unbearable effects. Pellagre causes skin to develop a layer of rough dry skin which is scaling and flaking. I gradually developed a thick layer of dead skin covering most areas of my body, but it was not normal dead skin, it was orange to brown depending on thickness. If I stressed a local area of skin it seemed to weaken all skin, presumably due to then uncorrected nutritional deficiency.
Occasionally I would snap from the unrelenting itchiness with an uncontrollable urge to scratch off areas of dead skin in a frenzy and the newly exposed skin underneath was highly sensitive for days or weeks which also intruded on thoughts. The physical motion required for scratching often wore out or overstretched unused muscles, and the physical pressure on the muscles and ligaments underneath the skin being scratched often became stressed and decreased in function.
Every year or so I would be able to scratch most of it off and it slowly came back again. Sometimes I dreamt about my skin falling off or eroding so my organs or muscles were exposed. My skin issues are not fully resolved yet but I am now basically out of the woods in that area.
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LATER STAGES
When you last visited in 2025 [In April of last year, I visited Alem in Perth–DT], I had just spent weeks obsessed with gravity and orbital physics and was even doing calculations, leading to another brain crash. Later I moved to imagining an ideal scenario for a home in the streets I have lived or elsewhere. A few months after your visit, I created a fantasy-science-fiction story involving reincarnation and storytelling.
I was very slowly improving my ability to create letters from silicone earplug putty so that mum could write a word on a card. I collected cards to form sentences.
I spent years creating in my mind a bullet point list of things I wanted to write about if I ever got out of that mess. I previously ran my brain into the ground very badly trying to hold onto that list. Collecting and organising the cards meant I had to glimpse them in the dim light. Once the dosage of Lyrica was low enough, I slowly graduated to reading actual articles.
It took a while to partly desensitise to the increase in input from senses and information. At first any reading or imagery would ricochet inside my mind. It took a while to handle images. Human faces looked strange (I had to partly relearn how to recognise faces properly), plus everyone including myself had now ‘suddenly’ aged 9 years, which took a while to get used to.
In the earlier years I was somewhat surprised at how much I could remember about many subjects, but when regaining the ability to use a smartphone and laptop I quickly realised just how much my knowledge and cognitive abilities had atrophied. It is not so easy to rebuild momentum.
I missed reading and writing so much, more than anything else, more than all my other hobbies. I had spent 20 years collecting notes and familiarising myself with many issues. Losing the ability to communicate was profoundly frustrating and humiliating, especially when I had helped to trigger the showdown over the PACE trial re-analysis and could not contribute further. Even just accidentally looking at text would burn into my mind and haunt it so I had to have the clock removed from my room for many years until around September 2025.
I know that some of the above sounds wild. I am just reporting what I experienced rather than what I believe. I read a significant amount about Eastern philosophy in my youth, and although I am technically agnostic and skeptic, I think sensory deprivation due to being isolated in a dark room for 95%+ of the time caused my previous tendencies and memories to express themselves. I reconnected to those parts of myself after having ignored it. They have mostly receded into the background again since now having alternate stimuli.
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TIME PERCEPTION
It was easier to lose track of time because I could not look at a clock or ask the date, but because I was fed at precise intervals around the clock, and had routine carer visits, these interactions served as time anchors. Every now and then, mum would mention the date, or mention an event I know the date of, providing another anchor in time.
The body clock relies on light to help adjust the timing of the sleep-wake cycle. I was in a dark room almost all the time so my sleep timing crept back roughly 30 minutes every day. I learnt early on in 2016 that it was pointless to fight this shift by trying to stay asleep longer after waking up or trying to stay awake longer before going to sleep.
Because of that, mum asked me everyday when I wanted to go to sleep, and by indicating the answer with showing the number of fingers, that would determine the next 22-24 hours schedule.
Mum left me meals during the night, or when she had to go out, or when she just wanted a break. So I often had to estimate the passage of time and there were consequences for being too inaccurate e.g. eating too early caused an overfull stomach which took extra time to resolve, while eating too late meant not eating enough, and I was already emaciated enough.
Mum could set the alarms on my smartphone, but the margin between too quiet and too loud was very slim, often I did not hear it or was startled awake. It also had a strange habit of not going off during the morning. As soon as I could read cards again I instructed her to buy me a clock.
My whole life revolved around a schedule which helped maintain a sense of time. I have always had a tendency to categorise many memories in my life by the year, which also helped keep track of what year it was while living in darkness and imagination land. Sometimes the perception of time would speed up or slow down. Sometimes I had dreams and visions of linear time dissolving.
