[Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

My limits do not closely match what my step counter says - possibly I need a new step counter?

Some days 400 steps is way, way too much, and on others 4000 seems fine, although more is possible, that's an arbitrary line based on nothing but how I feel a couple of days later.

Most days I hover between 1 and 2000, mainly used up in trips to the bathroom, or so it feels like. At this some days I am worse, others I am not, and rarely I improve a little.

As counting steps is it, this must mean that either am am using the wrong sort of steps, or that my step counter is faulty and needs replacing with one that knows what it is doing, that understands the behavioural psychology of steps.
 
livinglighter said:
This is what I was told to do. In order to avoid PEM I shouldn't do lots of things even if I felt like I could without sufficient pacing and I should use a step monitor to help understand my limits.
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Sure, but I meant that specifically in regards to the major uplift caused by anxiety/anger>adrenaline surge though, not the general better days in terms of pacing. I was meaning specifically to dispute the notion that sympathetic nervous system activation leads to symptoms. It doesnt - not for me anyway, it leads to me feeling a lot better. It's only if i 'believe' i am a lot better & do a lot more than i am normally able to (even on a good day) because the adrenaline has made me feel soooo much better... it's only then that i get worse symptoms - as a result of the activity - which would be the same regardless of whether i was full of adrenaline when i did it. ie its not the adrenaline/activation that caused the symptoms its the activity.

Murphy in the video claims that sympathetic nervous system activation (ie not related to extra activity but on its own) triggers cytokines which cause symptoms. It doesnt happen. Or at least not for me anyway.
They reckon this is part of the problem in LP as well i think 'too much adrenaline', i've always thought that was nonsense, how can it be that if adrenaline makes you feel better, & as long as you let it wear off without overdoing it, no more symptoms will ensue.
 
I agree that adrenalin can tempt one to do too much, and so get PEM.

But the emotional response to a distressing situation, even without activity, can also cause a PEM response. I’m assuming it is the extra brain exertion processing the situation, but the PEM can happen even without the physical activity.

Also it’s possible to be quietly active, ie without adrenalin, and that too produces PEM.

What a weird disease we have. :P
 
Keela Too said:
But the emotional response to a distressing situation, even without activity, can also cause a PEM response. I’m assuming it is the extra brain exertion processing the situation, but the PEM can happen even without the physical activity.
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Sure,
yes.

What i was meaning was the kind of 'chronic activation' that she's talking about - ie activation of the sympathetic nervous system without the prerequisite distressing situation.
Very upsetting situations are hugely demanding -which is extra activity.

But Murphy as i understand from her explanation, was trying to say that merely that aspect of the dysregulation - ie the SNS being activated, can bring about immune symptoms on it's own & threfore that is what is giving us swollen glands etc.

What i was saying is that i can have swollen glands after activity when very calm & relaxed before during & after it, and have no such symptoms after a massive adrenaline surge as long as i dont overdo the activity due to the surge.
So SNS activation on its own, cannot be what is causing the immune activation-like symptoms (flu-like etc)
 
Keela Too said:
I can perform much better under adrenalin’s influence.
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Me too. But the more adrenaline, it always seems the worse the PEM!

So spending about half an hour swimming 1.5k, which doesn't involve much (if any) adrenaline, can leave me in less severe PEM than spending about half an hour sitting down talking to a friend whose conversation makes me laugh a lot.

Keela Too said:
What a weird disease we have. :p
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Yup!
 
Keela Too said:
So if we are talking about “what’s going on with ME”, and throwing some ideas into a mixing pot, here are a few of mine: (There have been a few more posts as I was typing…. )

1. Adrenalin:

I can perform much better under adrenalin’s influence. As a biologist I recognise it as the “flight or fight” hormone. So basically it is about survival in the moment. Blood is diverted away from the gut, and towards the brain and muscles ready for action. Pain signals are also down-played, so the body is able to respond with less inhibition.

I won’t deny, I love a little adrenalin in my system.

However, as an ME patient, I find that once in my system, adrenalin leaves rather more slowly than I’d like.

A friend and I coined the phrase “dangerously okay” to describe the period when adrenalin fools you into believing you are better than you really are. This phase lingers even after an activity has drained the muscles of their energy. I KNOW I should be laying low, but I find it really difficult to appropriately rest in this state. It seems I don’t get PEM until after this phase passes.

2. Gut:

I have found I do active things better on an empty stomach. This may be because “doing stuff” involves adrenalin which diverts blood away from the gut, so of course it’s better if there isn’t a load of food in there. I regularly skip breakfast, and always on the days I’m going out to work my dogs. :)

3. Compression Wear:

So it seems if I want to do something a bit more active (eg my dog agility rounds which involve about 40 - 50 seconds of high concentration and co-ordination of my muscles - I’m just walking but none-the-less this is “active” effort). Lower body compression wear helps keep me on my feet for this, and means my brain able to keep thinking. This suggests to me that my peripheral blood vessels don’t respond correctly when I up my effort levels, because without compression wear, I quickly feel un-coordinated and sort of drunk (without the happy part).

4. PEM:

PEM feels like an immune reaction to something. This seems to tie in with its delayed response (48+ hrs after the event for me) and with PEM’s incapacitation. ‘Flu leaves you feeling sore all over, sensitive to light, sensitive to noise, without an appetite, and unable to get-up and go-on. As I understand it, these symptoms are down to the immune system fighting whatever virus is causing the ‘flu. PEM for me feels like this too. Whereas in the 24 hours after activity, I can feel like I’ve escaped the PEM reaction (no doubt the adrenalin), the “day after, the day after” brings home the truth.

5. If PEM is an immune response, to what is the immune response directed?

So here I’m feeling about in the dark.

A) Might it be that the gut gets “leaky” and our immune system fights some of those larger molecules that slip into the blood stream? This might connect with my observation that I “do better” on an empty stomach. Maybe if there’s less in the gut, then less leaks out of it? Who knows.

B) Might it be that the poor response of the peripheral blood vessels causes “something” to get flushed from the tissues to the lymphatic system, where an immune response is initiated to that particular molecule?

C) Might the fact that my muscles are highly fatiguable and the consequent anaerobic respiratory processes mean some weird respiratory by-product is produced at levels that sets off an immune response??? (Not sure on this one…).

D) Maybe the lack of production of ATP (cos anaerobic respiration can’t keep up) and the eventual conversion of ADP to AMP, could not only leave use drained of physical energy but also lead to other metabolic pathways that delay our ability to recover appropriately?

6. Energy Ceiling?

None of these things seem to account for the fact that each ME individual has an energy ceiling effect.

What factor accounts for its level? Why is it relatively consistent over time? Why does it occasionally change for the better or worse? If over exertion causes it to drop what is the mechanism for that drop? If an antiretroviral drug causes it to lift (as happened for me during 2016) why is that? What was the mechanism for the change?

What is it that sets the level for each person’s energy ceiling? What can we do to nudge the ceiling up again?

All we know now is that normal rehabilitation involving exercise is counter-productive. Why is that?

It also seems that rest, although essential for maintaining a current energy threshold, doesn’t necessarily help the threshold to re-adjust upwards. Though a waiting game of rest, may eventually mean that some natural change happens to restore a better energy level…. Or of course, it may not!

7. Boom and Bust :( ?

So here’s the thing, NO-ONE ever does the same amount each day! Not one person! We all go through cycles of doing a bit more, and then doing a bit less.

So if I choose to rest today and tomorrow, so I can do something a bit special the next day, and fully plan in my rest and recovery for the few days afterwards, then why should I not do that?

I have been doing exactly this for the past six years. In truth I have found it much more difficult to come back after a period of several days doing “just a tiny bit extra” than from a single day of “quite a bit extra”.

Understanding how these activity patterns work would also be useful, but I can’t seem to suggest a mechanism right now. It “feels” like there is something critical that gets depleted, and I just need to wait (and rest) until is gets restored.

****

Ooops… long post dumping a whole load of thoughts… hope it’s not too off topic. But maybe as the first of a load of “dumb ideas” it might make someone more knowledgeable than me think “Ah ha!”…. :)
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When the adrenaline has kicked in, do you the find your energy ceiling seems to have in increased? Or does it still hit you at the same point? Just wondering if this would give any hints as to whether it is the energy availability to cells itself that is ultimately awry, or if is the perception of energy ceiling that is changing.
 
Barry said:
When the adrenaline has kicked in, do you the find your energy ceiling seems to have in increased?
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In me, the ceiling disappears altogether. For a while.

Barry said:
Just wondering if this would give any hints as to whether it is the energy availability to cells itself that is ultimately awry, or if is the perception of energy ceiling that is changing.
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It's never seemed to me that our cells can't make energy; more that they're being told not to. With adrenaline that lid gets knocked off temporarily, because it's an emergency (even though it usually isn't a real emergency).
 
Kitty said:
than spending about half an hour sitting down talking to a friend whose conversation makes me laugh a lot.
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Im confused, does laughing activate your fight/flight response then? It makes me calm down. I was under the impression laughter reduced adrenaline not raised it? How to laugh away stress | Nature perhaps im wrong/confused?

Jonathan Edwards said:
I am not aware of any suggestion that sympathetic activation normally induces cytokine release.
And there isn't any cytokine release in ME as far as I know.
So it doesn't seem to have much going for it.
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Just to be clear that was Murphy saying that, not me.... i thought it sounded a bit pseudoscience. But the trouble is it sounds so plausible to a lot of people.... 'oh so the symptoms are real' but if we can just show them they're getting worked up over nothing & get them to meditate & do more, they'll get better':rolleyes:

Kitty said:
It's never seemed to me that our cells can't make energy; more that they're being told not to. With adrenaline that lid gets knocked off temporarily, because it's an emergency (even though it usually isn't a real emergency).
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yes exactly that fits for me.
 
What's interesting though is that i'm not sure how the adrenaline effect works in people who are very severe?
I know for them just the increased heart rate caused by being angry can trigger PEM on its own, so perhaps the adrenaline thing doesnt have the same effect.
 
Wonko said:
Some days 400 steps is way, way too much, and on others 4000 seems fine, although more is possible, that's an arbitrary line based on nothing but how I feel a couple of days later.
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I never bothered with it myself as an active parent I wasn’t willing to stop doing most things.

Based on what was said, if 400 steps is at times way too much then 400 steps is always too much as you need to stay under the level of activity that provokes symptoms. I’ve read a few BACME guides and I’m sure it says somewhere your baseline is how much you can do on your worst day.

So based on the model shown and the physio’s ‘dysregulation’ explanation of physiological responses, it seems to be the only way I’ve been able to receive community care support. Without that explanation I don’t think I would of got anything.

Edited: to add the dysregulation model has enabled me to access community care.
 
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Kitty said:
In me, the ceiling disappears altogether. For a while.
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yes. I mean i've done things when adrenalined up through anger & fear & i mean terror, that i would never be able to do normally. But man the abrupt & severe crash afterwards.

Its like there is a moment, a space of a few minutes when it either wears off, or just stops working, and there is such a rush of symptoms, especially all over body pain/burning, nausea etc, abrupt weakness & that is like a tsunami, its 'orrible.

I also get the sense that when i have overdone it just in a normal way (ie not after sympathetic activation, when i have overdone it so much that the body itself initiates an emergency response - like a physically mediated adrenaline surge rather than an emotionally mediated one. Sorry i know both are 'physical' i cant think of how else to describe it.
 
I find this discussion very interesting : the concept of dysregulation and its possible or devious implications, "plug in " pwme to device over a long period to accumulate as much data as possible, the importance of a wise choice for the research team, the need to take into account the pwme experience to 'turn the minds on" to give an overview of possible tracks in order to verify their veracity.

I would just like to clarify something about the adrenaline "surge" (I have POTS and I have no doubt that it is an adrenergic type): for me, it's a very unpleasant feeling. It's like being on high alert, the impression of having energy,
and at the same time very exhausted. It's an experience comprising 2 antagonistic sensations. I still feel my physical pain, although less, and the noise makes it always difficult to concentrate. I am, for example, immensely happy to see relatives at a party and to discuss with them, but at the same time the general feeling, my physical pain makes the whole thing painful. Obviously, with this kind of effort, I end up paying dearly (PEM).

In short, like many, I imagine the PEM cycle as if I were an old rechargeable battery. I have what, 40% of available energy? It is as if the cognitive and physical efforts accumulate over the day, and the days, and then boom !, something trigger PEM.

PS: I too wonder if the question of the blood supply that requires an effort would not be an interesting avenue.

* Edit: to clarify
 
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