Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial,2021,Castro-Marrero

[arewenearlythereyet]

Ah, I see what you mean.

I have experienced that too, with things like complicated tax returns involving multiple difficult steps. I wouldn't call it a lack of will power though. I think I've heard it described as there being 'high friction' for those tasks - they are hard to start and hard to keep going. I think it's the result of a realistic understanding gained from experience that most of the time I just can't manage those sorts of things, and that if I try, I will probably end up feeling frustrated, with nothing much achieved, and will feel quite ill afterwards. It's the magnitude of the task.

With ME/CFS, the willpower is the same as it was before the illness, but the magnitude of tasks has got bigger. I mean, most people wouldn't think of themselves as lacking in willpower if they didn't run 15 km before breakfast, or read War and Peace in a day. But, for us, much simpler tasks like showering, or changing electricity providers can take the equivalent amount of determination.

Whereas with something physical like weeding, there might still be bad effects later, but I can easily stop when it gets physically difficult, it's quite pleasant and even a half done job is progress.

I find that these complicated tasks do become a challenge and I need to build myself up to do them, particularly when you have to sacrifice a larger quantity of smaller easier tasks that would make you feel more productive. In part its about feeling rewarded for the juggling that you have to do. I also wouldn’t call it will power, just a normal reaction to having more stuff to do than you can manage without crashing. It’s natural to only choose enjoyable things to do if you know they will make you crash. I don’t think this is about motivation or will power (these are psychologically contrived terms anyway) ...it’s more about practical priorities.

I guess I can be overwhelmed more frequently when all I really do is cognitive stuff and being overwhelmed with the enormity of the task ahead is different for us in terms of scale as you mention. This is something I encounter at work all the time (unrealistic deadlines etc). I need more thinking time for some tasks and often this is in part to work out how to break it up to be productive. Stopping and starting a task can be unproductive if you have to repeat steps to remember where you left off etc. (My short term memory and recall is still shocking).

I actually find physical tasks simpler to manage since heart rate is easier to track than cognitive load. Perhaps I’m kidding myself and all I a, doing is enjoying the change from work?

 

[unicorn7]

As far as I could tell, my ME didn't cause any effects on my muscles. I seemed to maintain the same level of strength and endurance. For me it's more of a limitation of willpower to make myself do physical or mental tasks. I'm just guessing that I wouldn't show the reduction in the ventilatory threshold on the 2-Day CPET. My guess is that the reduction is a common downstream effect of ME, but not core.

Why are you diagnosed with ME then? Muscle problems are literally in the name and in every definition as well.

 

[Creekside]

Why are you diagnosed with ME then? Muscle problems are literally in the name and in every definition as well.

I fit the Canadian and International criteria for ME. I did have neuropathic pains (still do when ME is worse). I definitely had PEM. My ME might be non-standard, but I've read other people's replies about not having physical limitations, so I'm not the only one. Muscle problems might be a common downstream effect of ME, but it's not the core problem.