The symptom signaling theory of ME/CFS involving neurons and their synapses

[Creekside]

while in the BPS theory, the infection only acts as a trigger because it causes resting behavior and unhelpful beliefs.

This makes me wonder: are there any people with severe ME who are also sleepwalkers, and do they show no signs of physical limitations while they're not awake to have beliefs?

 

[Creekside]

Maybe the ME/CFS brake doesn't normally allow us to get properly tired;

I don't have that sort of brake; I can keep pushing myself, especially now, since I don't have to worry about PEM, but getting honestly fatigued that way doesn't significantly improve my sleep, or result in less of that "unrefreshing sleep" symptom.

 

[Utsikt]

Other diseases do show less disability and impairment, but the ones mentioned all have more access to treatments, care and understanding by MDs that acknowledge their symptoms. We can't underestimate the influences that has on someone's overall health, disability and impairment. Maybe with more recognition and better care that difference would disappear.

Are there any indications that ME/CFS improves with adequate support and care (excluding direct treatments)?

I think there is a case for assuming that adequate support and care might result in a relatively higher probability of experiencing natural improvements, but I think that would mostly be mediated by the lack of «forced» long or short term worsening from far too excessive PEM.

 

[Grigor]

Are there any indications that ME/CFS improves with adequate support and care (excluding direct treatments)?

I think there is a case for assuming that adequate support and care might result in a relatively higher probability of experiencing natural improvements, but I think that would mostly be mediated by the lack of «forced» long or short term worsening from far too excessive PEM.

I don't know if there is, but I can imagine that when there is more support and recognition that it might also improve their overall QOL and experience with the disease as well.

I'm sure if the other mentioned diseases would be treated like people with ME they would score a lot worse as well.

 

[Utsikt]

I don't know if there is, but I can imagine that when there is more support and recognition that it might also improve their overall QOL and experience with the disease as well.

I'm sure if the other mentioned diseases would be treated like people with ME they would score a lot worse as well.

Improving QoL and FC, absolutely. I was more concerned about the underlying disease trajectory because that puts a hard upper limit for most pwME/CFS.

 

[poetinsf]

Is that true, though?

I guess that depends on how sick you feel in the morning. My flus usually last a week and I wouldn't feel refreshed, particularly in early stage. If you are a fast recoverer, maybe sleep will help you recover and feel better in the morning.

 

[ME/CFS Science Blog]

While I like the role of the synapses described in this theory and appreciate this write up and exercise, I personally think we know too little about ME and the importance of the findings to come to these conclusions. Some of the findings are also too much minimized that is in my opinion premature.

Thanks for the comments @Grigor!

To clarify: it was not my intention to minimize things or argue that peripheral pathology isn't possible in ME/CFS or that it is stupid to suspect or research it. Also agree that we still know very little about ME/CFS, that it hasn't been well researched in the past and numerous explanations are still on the table.

Having said that, there are places that make more sense to look for than others. The genetic studies gave some interesting clues that should probably become priority nr 1. in the field.