What could it mean biologically that both physical and cognitive exertion can cause PEM?

[Hutan]

To put it simply, she said that the mechanisms underlying chronic fatigue are probably comparable to the mechanisms underlying chronic pain (as in: pain that can not be explained by looking at the body part that's in pain).

Responding to your neurologist's misguided view of things:

Chronic pain is simply pain that goes on for a long time. Your neurologist is wrong to assume that all chronic pain can't be explained by looking at the body part that is in pain. Chronic back pain may in fact be due to deterioration in the spine, chronic knee pain may be due to mechanical issues in the knee.

They are also incredibly wrong to assume that all chronic fatigue is due to some sort of faulty central sensitisation. There is a whole range of reasons why someone might be chronically fatigued, many of them very treatable (and definitely not amenable to BPS treatments). If your neurologist doesn't understand that, I'd definitely be looking for a new neurologist.

 

[MinIreland]

I think you can safely disregard her entire explanation. There is a popular theory by Noakes that when the brain gets a signal that it doesn’t expect, it produces the sensation of pain. That is just wrong.

There are systems that work in a predictive manner, like coordination. That’s because the nerve signals are too slow to give an accurate representation of where a limb is. So we use visual data and predictions as well.

It’s easy to fool that system, e.g. as seen in the rubber arm experiment. But none of the participants experience any pain or fatigue from it.

Some neurologists will tell you that the phantom pain mirror treatment shows that unexpected signals can cause pain, but it has never been established that mirror therapy actually works. It’s probably just bias due to poor trial designs.

I am getting a bit desperate, as in that none of the specialists I have been working with seems to be able to admit that they just don't know.

The reason that my neurologist's explanation made sense to me initially, is that for me, my deterioration was very much sensed as a nervous system that was constantly in overdrive and on high alert (severe anxiety, brain fog, a feeling as if my brain was a brick, lots of pressure on my eyes and on my forehead, severe insomnia). I still feel that my biggest issue is that my nervous system keeps responding too sensitively to teeny tiny (or even no) triggers. Recently, the strangest experience for myself is that I feel pretty calm during the day and then at night, the 'tired and wired ' kicks in.

I think she wasn't referring to Noakes' theory, but more from a 'your nervous system is completely exhausted and is therefore malfunctioning. She didn't claim there was any evidence for this, it was more her current thinking. But now I can see that this explanation can also be harmful, because the underlying message is: "Now off you go, go calm and fix your nervous system and then your extreme fatigue and cognitive problems will be gone."

 

[Kitty]

Recently, the strangest experience for myself is that I feel pretty calm during the day and then at night, the 'tired and wired ' kicks in.

That's a very common experience, especially when in PEM. It's a fairly reliable sign you're doing too much.

 

[MinIreland]

That's a very common experience, especially when in PEM. It's a fairly reliable sign you're doing too much.

Oh, I didn't realise that! I'm going to track that. Thanks so much!

 

[Utsikt]

But now I can see that this explanation can also be harmful, because the underlying message is: "Now off you go, go calm and fix your nervous system and then your extreme fatigue and cognitive problems will be gone."

Exactly.

Any explanation of the nervous system being exhausted, stuck, whatever is complete make believe.

Being anxious is tiresome, it makes it harder to rest properly and is in general unpleasant. But if anxiety in itself caused PEM, you would see PEM in far more people. That isn’t to say that anxiety and the effects of it can’t contribute to PEM being caused, we know from the more severe that stimuli and cognitive exertion certainly can lead to PEM.

One of the issues with many of the BPS theories is that they try to explain disease with normal mechanisms. They completely forget that disease is per definition abnormal, and therefore has to be caused by something abnormal, otherwise disease would be the normal state.

It’s incredibly frustrating to be able to not really rely on the expertise of most doctors, but that’s unfortunately how it is for ME/CFS.

 

[Kitty]

I am getting a bit desperate, as in that none of the specialists I have been working with seems to be able to admit that they just don't know.

Sorry, I pressed the post button instead of the quote button when I was making the previous post, and multiquote doesn't work if you try to edit an existing post. Anyway...

Nobody knows. To be blunt, anyone who pretends they do is bullshitting. We don't have any ME/CFS specialists yet because no one knows what it is.

Unless you have (or suspect you have) another condition as well, I doubt you'll get far with specialists. It's up to you, of course, but you might be happier without the stress of important consultations that turn out to be ... well, unsatisfactory at best!

 

[Kitty]

Oh, I didn't realise that! I'm going to track that.

It might look a bit confusing at first. The wired-and-tired you get tonight may be the result of activity the day before yesterday, plus a bit of yesterday as well—PEM's not always linear, and the less severely ill you are, the more confusing the picture can get.

If I get it, I just economise on activity as much as possible until it's faded.

Luckily I rarely get PEM from cognitive activity or using a computer, so when I need to rest but am bored witless at least I can keep picking up the laptop for half an hour.