Spoiler: I did not!
I may write a dedicated post in the future about the history of myalgic encephalomyelitis and how it has been framed as psychological.
For now, the short version is this: a faction within medicine still believes, despite overwhelming scientific evidence to the contrary, that myalgic encephalomyelitis is psychosomatic. According to this view, there is nothing wrong with the body; symptoms are triggered by the mind. Patients are seen as afraid of movement and symptoms, and as deconditioned due to inactivity. Graded exercise therapy (GET) is supposed to improve fitness, while cognitive behavioural therapy (CBT) is supposed to target “maladaptive illness beliefs.” For more detail, I refer you to https://pmc.ncbi.nlm.nih.gov/articles/PMC8394918 (1)
And even though the updated NICE guideline now says, “Do not offer people with ME/CFS any programme […] that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy,” the belief that people with myalgic encephalomyelitis can improve by increasing activity remains stubbornly embedded in the minds of many clinicians and therapists.
Sometimes it is watered down to “symptom-titrated”, “careful increases”, or “increases within the baseline”. Sometimes even the term “pacing” is misused to mean “pacing up activity”, meaning slowly increasing activity. Whatever you call it, the underlying idea remains the same: people with myalgic encephalomyelitis are afraid of movement, and if they only moved more, their functional capacity would increase.
Except, in the long history of myalgic encephalomyelitis, people have tried this over and over. Many have declined, often permanently, from such attempts. And science keeps finding abnormalities in the muscles of people with myalgic encephalomyelitis (e.g. https://pmc.ncbi.nlm.nih.gov/articles/PMC11671797/) (2), as well as evidence that the body’s recovery processes are impaired.
All this boils down to two points:
- The extremely reduced physical capacity is not due to deconditioning. (Some people have gone from running marathons to not being able to walk 500 m in just weeks. Nobody deconditions this fast.)
- The body of a person with myalgic encephalomyelitis is physiologically incapable of being trained like a healthy body.
And still people try. I am a member of the Facebook group “Long Covid Support for Endurance Athletes”, and what has every single member of that group tried after getting sick? Training their way back to health!
I tried, too. Multiple times, despite my own negative experiences, other people’s negative experiences, and the scientific evidence.
This summer, I had the chance for yet another experiment. Last summer, I found out I can swim. This summer, a close relative of mine retired, and we made it our priority to go swimming at the small outdoor pool a few towns over as often as possible. For them, that meant multiple times a week alongside other activities. For me, it was twice a week at most, with mostly bed rest on the days in between and few other activities. Three days of bed rest – 30 minutes of swimming – three days of bed rest.
A healthy, deconditioned person does not need three days of bed rest after a swim. They may question their life choices for a while because their muscles hurt, but they remain fully functional.
At the end of summer, i.e. after three months of “training”, I could swim a few percent faster and 15 percent farther than at the beginning. That is not even close to what a healthy person could achieve in three months of regular training, and it can be explained entirely by me getting my technique back. My movements became more efficient, which saved energy and allowed me to swim longer. Importantly, my overall functional capacity did not improve. If anything, my cognition became a bit worse with the increased physical strain.
Granted, my arms and back did get a bit more defined, so building muscle is not completely impossible. But it is not something I recommend anyone try deliberately unless they know their body and its limitations extremely well—and, importantly, it is something they want to do.
I miss movement. I miss my old, athletic self, and getting a glimpse of that back in the water was worth sacrificing a lot of other activities and having to spend days on bed rest. But if a person with myalgic encephalomyelitis wants to invest their extremely limited energy in, say, painting rather than targeted movement (to avoid the term “exercise”), that is entirely fair, and they should do that.
For many people with myalgic encephalomyelitis, daily living is exercise. Their bodies are already working at their limits. There is no physiological capacity to add “training” on top.
(1) Weir W. & Speight, N. 2021, Healthcare (Basel), 9(8):984
(2) Scheibenbogen, C. & Wirth, K. J., 2024, J. Cachexia Sarcopenia Muscle, 16(1):e13669