My doctor in the US had clearly read about the BPS movement, and it adversely affected my care. However, my worst 'graded exercise therapy' was what I did to myself.
I stopped work because of neurological issues: not being able to remember words, my legs giving out, my face tingling and getting numb. My job had been an active one, in which I rarely did dramatic physical labor, but also rarely ever sat down. My previous existence had been one of constant, gentle movement.
I thought to myself that exercising was the right way to go if I was to no longer be at work; but I'd already noticed that activity didn't just wind me, but seemed to make all my symptoms slightly worse. Therefore, I decided to be gentle with myself and begin slowly.
I bought a yoga CD -- constant, gentle movement -- and an exercise bike. I biked slowly and carefully for 10 minutes -- no reaction. The next day, I did 15 minutes of gentle yoga. My hands and feet tingled and felt cold, but I also felt a little energized, like exercise used to make me feel. After several days of 10 - 15 minutes of movement, I upped to 15 - 20.
It's hard to describe what happened next to someone who isn't sick, but here goes: I began to shake. Placing my hands on my abdomen, my abdomen felt icy-cold in comparison, even though my hands and feet were also suddenly freezing. I stumbled off the exercise bike; the room was spinning. I had trouble walking.
Trying to mitigate the cold, which seemed worse every minute, I placed myself in a scalding hot shower. The water chilled as it hit me. I could see that my fingernails were blue -- what on earth was happening?
Leaving the shower seemed unthinkable at a level of cold this deep. It took a surge of willpower (and the reminder that eventually the hot water would run out) to make myself do it. I threw a towel around myself and a robe over that. I threw every blanket I owned on my bed and climbed under the covers and it still felt like I was hypothermic. I shook so hard that my muscles began to hurt. That was when my muscles started to burn, painfully. All of them, but especially my legs.
I shook, hard, for hours before my body finally began to warm again. When it did, I dropped off to sleep so instantly that it was like I'd been beamed across the back of the head.
I had exercised early in the morning, but when I opened my eyes long enough to take note of my surroundings, it was dark out. I was still so exhausted that I couldn't turn over. I slept anyway.
When I fully woke up, it was the next morning. Everything hurt. Every muscle. I still felt cold, but a more normal cold. Sitting up was painful, and difficult. My leg muscles jumped a few times when I tried to move them. It took about a week to get back to 'my normal'.
You know what I did, next?
I began to exercise, of course. It was ridiculous that what I'd experienced was the result of exercising. Impossible. Therefore, it had to be a fluke.
I began to crawl back up the ladder, once I was back to what I considered to be my baseline wellness -- 5 minutes. Then 10. But when I hit sixteen minutes I stopped, because now I could feel the start of the sensations I'd experienced last time and dismissed at the time as something I had to 'push through'.
The same thing happened all over again, anyway, only less so because I'd stopped a minute or two earlier than last time. It was also a bit less scary, because I knew I'd been okay the last time, but I began to worry I was doing myself some kind of permanent damage. My neurological symptoms seemed much worse, afterwards.
You know what I did, next?
I tried a third time.
Okay, so maybe it was exercise that had caused these symptoms, twice is a pattern, sure. The symptoms were identical, albeit less bad. But, I thought, this can't be true for the rest of my life. That was impossible, so surely the trick was in going slower.
Real talk: I couldn't accept that this was happening to me. I wouldn't accept that I was this disabled, this suddenly. I found it unthinkable and unacceptable.
Of course, the same thing happened when I tried a third time. What do you do, then?
It was at that point that I accepted it. I'm not going to improve by exercising; moreover, I can't exercise. Even as my choices have given me quality-of-life gains, this has remained a constant feature of my illness, and is considered in most medical circles ME's defining feature. All medical circles but the BPS school, whose proponents claim that more exercise and talk therapy will stop a patient from having the sort of reaction I've described here.
Their research is in the UK almost exclusively, but their papers are read by researchers from all countries. Harmful treatment decisions are made after doctors read this paradoxical research.
The worst part of recommending GET is of course the physical harm that patients experience. But the second-worst part is that GET implies that patients are deconditioned and lazy, and this is why they have trouble. When I got my CPET scan, the exercise physiologist at Mayo Clinic told me directly that there was no possible way that my response to exercise was due to deconditioning. Psychologists obviously favor another theory; but then, they take no objective measurements to support this theory. When researchers do -- studies that show return to work after GET or CBT, or getting off of government assistance -- they find no change over time. How can ethical researchers and clinicians keep promoting theories that are the product of bias and not hard data?
You can't cure someone with ME by encouraging them to increase their exercise. Exercise intolerance is arguably the hallmark symptom of ME: that which defines and delimits us. The use of GET for a disease marked by such a reaction to exercise is nonsensical and harmful.
