A while back I made a comment about perception of symptoms, and some people got angry because they thought I was claiming that ME symptoms were psychological. I recently was reminded of a good example of perception of symptoms being misleading. I moved wrong, resulting in a herniated disc, resulting in the excruciating pain of sciatica. My brain perceived the injury as major tearing of muscles or connective tissue in my right leg. However, poking those areas didn't result in the pain expected of physical injury, and some movements didn't trigger the expected pain. It was movement of my hips and spine that made it feel like leg pain. The swollen disk put pressure on the nerve channel, changing the nerve signals. I don't know whether those nerves were generating false pulses, or amplifying the normal "everything is fine" pulses, but my brain has no way of differentiating that from genuine tissue damage signals. So, this is a communication channel malfunction, not the physical leg damage that it feels like. My point about ME symptoms is that there may be similar misperceptions involved. You might feel like you are producing only 50% of the normal amount of ATP, but a blood or tissue test might show only a few % low--or high, because it's not a precise test, and there's not a precise "normal" to compare against. Instead there might be some neurons not working quite right, resulting in a response in other neurons matching what would happen if there really was only 50% ATP production. It's not psychological, since there's a real physical malfunction in some cells, but it's also not the physical cause that it "feels like". The same applies to other ME symptoms such as pain. I'm not claiming that there aren't some real physical symptoms from ME. ME seems to mess up various neurological functions, which can directly or indirectly affect other body functions, so it's plausible that ME can cause intestinal problems, or heart problems or other such things. My point is simply that some ME symptoms might not originate where we believe they do. You might be convinced that your mitochondria aren't producing enough ATP, but all the treatments that are supposed to boost ATP production won't help if your belief is based on misperceptions. Now why can't ME mess with neurons to block my sciatica? That would be useful.
In the examples you give, the perception of symptoms is accurate, you have symptoms of pain in your leg, or you have symptoms of weakness and lack of energy. These are not false perceptions of the symptom. What I think you are describing is false interpretation of the cause of the symptoms.
I think I understand what Trish is saying better than what you're saying, even though I feel like it's roughly the same message. Nobody "feels like they are producing only 50% of the normal amount of ATP", because nobody feels any form of ATP generation. What one might feel is having little energy in the colloquial form (which is entirely different to the physical entity of energy). The ATP part is pure interpretation, it may be and most likely is something else entirely. When I break my finger, I feel the pain. I might interpret that this feels like how a broken finger would feel like or believe that it feels exactly the same to how it previously felt when I broke my finger but in both cases there is still interpretation involved. Sometimes the interpretion might be correct, other times it won't. That is why it's important to focus on describing what one experiences in ones own words and in its easiest form, not in words which one might have come to believe over time. The analogy relevant to ME/CFS would be to never go to a doctor and say "I am experiencing PEM" and rather describe what one experiences in ones own words.
True, it is not an evidence-based statement to say 'my mitochondria aren't producing enough ATP today' when someone asks how you are. But, you have done nearly the same in saying that 'ME seems to mess up various neurological functions, which can directly or indirectly affect other body functions, so it's plausible that ME can cause intestinal problems, or heart problems...' We don't know that ME/CFS is caused by 'messed up neurological functions' either. Possibly you have assumed that your sciatic pain has resulted from a herniated disc? In the absence of some imaging, it may not have. I agree that, in the absence of good evidence, we should not make claims about etiology or assume that treatments based on hypotheses must work. People do, of course, and it's an understandable reaction. But medical professionals and people writing clinical guidance absolutely should not. Pain alerted you to the structural issue in your back, and that's good, as it allows you to make decisions that might result in it healing, or at least not getting worse. I hope your pain resolves soon.
Yes, that's much better wording. My main point is that when clinical tests don't support your described symptoms, that doesn't mean that it's a psychological disorder; there are other explanations with real physical causes. Yesterday, my right foot felt like my sock was wet on the top front of the foot. I checked, and it was dry, but the sensation remained. More signal failure from squashed nerves?
