The Concept of ME/CFS

Could a part of whatever happens in the hours to days after any kind of exertion be the trigger for the reflex?

 

This, though very dramatic and very dangerous, is an example of ideomotor dyspraxia, where the executing and sequencing complex motor activities brakes down. I think most of us experience at some point, be it pouring the hot water for a cup of tea into the sugar bowl or putting the finished tea into the fridge and raising the milk bottle to your mouth to drink. A recent experience I posted was carefully pouring a line of mouth wash onto my tooth brush and staring incredulously as it ran away, I had mixed components of brushing my teeth and rising with mouth wash, and repeated the action before I could compute what had gone wrong. This brake-down in sequences of every day motor activity could be an aspect of our brain fog.

Perhaps what is unusual about this was that you didn’t register the pain.

 

That analogy works, but backwards. We keep touching the stove. Again and again and again, no matter how many times we get burned. Even through increasingly severe burns that take longer to heal, we look longingly at the stove for the next time we get to touch it. Many times we touch the stove, it doesn't hurt, then 1-2 days later our hands are scalded even though they were fine right after.

Which is exactly the opposite of the fear-avoidance model. If anything, we are driven to touch it almost compulsively, because life demands movement and exertion. There is no reflex or conditioning involved at all, this is the entire difficulty with how PEM is often delayed. So many times we feel fine, even a bit better, until it hits. Conditioning requires certainty, to know that doing x will result in y. With PEM that feedback is completely broken, it would be like trying to train an animal through feedback conditioning with totally confusing and chaotic feedback. Which doesn't work.

Personally I have touched the very hot stove hundreds of times. Every time expecting no pain, no heat. Most of the time simply forgetting what happened before, in large part because the reaction is usually delayed and disproportional, making it even harder to reasonably attribute its cause. But also because brain fog adds a huge layer of confusion, memory loss and turns off the executive functions that do the learning.

Which really all makes a complete mockery of the expertise in clinical psychology over the models they made up for us. They actually managed to invent models that are completely backwards, that reverse causality, attributing the cause to what followed, despite the cause-and-effect relationship being madly inconsistent, disproportionate and unpredictable, and especially in completely misunderstanding our behavior and motivations, which is their actual claim to expertise, that they understand our behavior and motivations better than we do. Which is laughable given that it's fully subjective experience and that they dismiss everything we tell them about that subjective experience, but that's the problem with social sciences: there are no right answers, you never actually know when you are right, even after the fact. Which makes it all so much harder than the 'hard' sciences, where you can have not just certainty after-the-fact but accurate predictions.

 

Which is really the main problem in every illness that medicine doesn't understand: what to do while we have this lack of knowledge about how to tell illnesses apart based on observed pathophysiology? Of course when it comes to treatments, drugs and such, this is critical, but we don't have that here, all we have is clinical presentation and here they are definitely mostly identical. You rely on your own experience but I have read thousands of testimonies of LC that feature all the typical POTS and PEM presentation and resolved before hitting the magical 3-month mark, where others nearly identical did not. There is just a wild variation out there.

From the perspective of a patient facing this limbo period before the magical threshold, it's rational to apply the same approach, especially as it involves no specific treatment. We are not talking about deciding about which medication to use, each with their own problems and possible disaster scenarios, this is more about nursing, about being able to provide the best circumstances for full recovery while being aware of the potential for severe deterioration, including the long-term kind leading to a need for palliative care.

Which has been a regular discussion here, but frankly if there's one medical specialty that is most appropriate here, it's nurses. And it just happens to be cheaper than almost all other specialties, so there's an additional angle to convince those who don't see the lives, only the costs of pretending to care for us.

 

A common description of severe states is that it feels like the entire nervous system is on fire, and that the whole body is poisoned, leading to a kind of shock paralysis. I have experienced this state once, and that was enough to have it seared into my memory, and it is apt. This looks far more like a dynamic state, like being hooked on to continuous low-power electric shocks, than a passive coma-like state.

We have to keep in mind that even in the most severe states, the patients are fully lucid and aware. That awareness is fleeting and tenuous, the same way experiencing severe pain we are fully aware of it but lose track of the passage of time, but it is there. This is not a sedated/knocked out condition, it's more like being so overwhelmed by internal senses that external reality becomes too much to endure, and every external stimulus just adds to it, like salted sandpaper on a wound that keeps being sandpapered again and again.

 

Yes, exactly that, and thanks for putting a name to it. I do that kind of thing everyday in little ways, like you say, as we all do.

The pasta incident was at my worst. Although the submerged hand and wrist were immediately bright red, absolutely no pain for at least 24 hours, boy did I feel it then and it seemed to take much longer than one would expect to heal.

 

This.

 

I’m through the document but not the thread so apologies. But a few notes I made this week:

I like this.

It starts making it clear we don’t know much. This is good.

I never got to the thread on the meed to lie down as it was quite long and daunting, but it’s very much a key symptom which showed up early in my ME and the correlation between lying down and severity for me is strong. The need is ever present, even when good it’s not long before I have to. And standing is out, even if my HR is ok. I’m on meds for my HR so some docs think/say I should be able to stand now but still can’t for long even when at my best.

The ups and downs are well described as snakes and ladders too. I’m doing a bit better at the moment. Why? Partly because there’s less making me worse (none of the big triggers of recent years) but also just because. If nothing happens to make me worse I will have ups and downs which are completely unrelated to what I do and inconsistent. Which is why a lot of the ‘tracking’ stuff some like us to do annoys me.

The distinction with PVFS is I think very important as we seem to be treated as if we have this but just an ongoing version. I think this is a mistake and leads into misconceptions. I would say we have something else and that these symptoms are clear quite early on. At least this has been the case for me, I obviously cannot speak for others.

And all the stuff about approaches from medics is great. We can’t yet make things better but they can and do make things worse. Not deliberately usually. But definitely due to a disinterest of dismissal of ME/CFS and not listening to patients.

Is there a way we can emphasise this? That patients want to work together with medics to not make things worse until we know how to make things better?

Thanks again @Jonathan Edwards and everyone else pitching in feedback now and over the years.

 

Cognition fits fine because my analogy does not include specifically suggesting that PEM is a spinal reflex. Not at all. That may not have been transparent. I am using the spinal reflex as an analogy for things that go on in the nervous system over which we have no control whatever. Even in the spinal reflex situation visual inputs and inferences about hardness of surfaces that may be conscious or unconscious all feed in from different directions.

There is a mystery as to where the pain comes from if the muscles and joints are all normal. Which is why people talk of 'central sensitisation'. But what I am suggesting might involve something better thought of as 'peripheral sensitisation' which seems to be what we have with flu. Peripheral inhibitors of neural sensitivity like ibuprofen can help in flu. They may not help in ME/CFS but they wouldn't if the sensitisation was not through prostaglandins.

 

I think we are wandering off what the original analogy was about. The idea was to explain why there appears to be no energy or ability to use muscles. That clearly comes with pain and for some people the pain is the main thing and for others it is the sense of paralysis that I was giving an account of. The hot stove analogy is just making the point that our bodies have responses that we have no control of. And yes, it is the backwards of the situation in ME/CFS, which is more like the situation in with my knees where I find myself paralysed, completely unable to undertake an action, if my body either is in pain or has been conditioned to expect pain. The latter comes with the former so it is difficult to disentangle exactly what creates the paralysis.

 

Thanks for the helpful feedback @hotblack . I am glad the snakes and ladders is not completely off target. The description of OI, regardless of heart rate, is interesting. I like these two sentences. Maybe I could include them somehow.

 

We're all a bit different, but the various kinds of pain I have aren't like "normal" pain. It's not like a bone, tendon or muscle injury, it's not like inflammatory processes in bruised soft tissue or arthritic joints, it's not the soreness and heaviness of having been on your feet too many hours.

The muscle pain is a burning I've never had from anything else, even though I managed a good range of interesting ways to knacker body parts doing contemporary dance. There are also distracting pins and needles, zaps, twitches and buzzing, and the worst pain of all feels as if it's just above the surface of your skin, so you can't even touch it.

As in viral infections, some of the pain is difficult to separate from fatigue and overall malaise. If a usually healthy person is unwell with a bug but needs to take part in an hour-long online work thing, a dose of painkillers will often get them through it. They might manage to come across normally and make cogent contributions, but flop over afterwards. Moderate ME pain-and-fatigue can work like that. The peripheral sensitisation idea does make sense from that point of view.

 

OMG this describes my ME experience exactly, I mean things are just jumbled so completely that I do the most absurd things. And what gets me about it is the incredulity, the repeated attempts at doing something incorrectly, but not being able to work out whats wrong with the picture.... it's the pure puzzlement as to why, when I attempted to make a jelly and a cup of the this morning, why the jelly in the jug was so dark, and getting darker by the minute, and why the mug full of water was still clear.
I stirred both and looked at them for some time, thinking why isnt the tea brewing...I threw away the 'tea' and poured it again thinking in exasperation 'what the f*ck's up with it?' before i worked out that i'd put the tea bag in with the jelly and the tea wasnt brewing in the mug because there was no ruddy tea bag in it! (FIW i recommend blackcurrant & tea flavoured jelly, its an unusual but pleasant flavour!)

its the incredulity... the sheer puzzlement as to what has gone wrong, that is so very bizarre.

this

rvallee can i copy that & use it? its such a good explanation of what it's like when i'm at my absolute worst.

Yes i completely agree. If anyone else tells me that they know what it's like to have ME because they 'had ME for 6mnths after glandular fever'... ! it's very annoying

Interestingly and i think unusually, ibuprofen does help me a bit, I cant use it often because it makes me feel like i'm better than i am leading to PEM - which is then so bad that the ibuprofen doesn't touch it. But for the flu like stuff - painful glands etc it does help a little bit.

 

I am thinking you're not suggesting this 'peripheral sensitisation' is a thing in and of itself - it doesn't just happen, we don't grow into it. It is downstream. Something brings it along, and something maintains it? If so, what? Or am I misunderstanding?

I'm not clear that we know they are all normal. Moreover, there are many other body parts/tissues - even down to the cellular level. Indeed, this is why an acquired channelopathy could work in theory (I'm not in favor of that theory, but it works, too).

 

Suggestions welcome.

 

Would't peripheral sensitisation make ME/CFS an interoceptive disorder? Does this align with Baraniuk's theories at all, or was it informed by them?

Baraniuk:
"Our magnetic resonance imaging studies of exercise-induced changes in brain blood flow are a model for postexertional malaise/symptom exacerbation that is the essential feature of ME/CFS. We found dysfunction in the dorsal midbrain, periaqueductal grey matter and reticular activating nuclei of the ascending arousal network. These nuclei are critical for threat assessment and respond to pain by activating descending antinociceptive pathways that shut off pain messages. We propose that dysfunction of these systems in the midbrain and brainstem may provide a unifying pathogenic mechanism to explain the heightened experiences of interoception in ME/CFS and allied conditions."

ETA: Is something akin to this what you meant by problems with signaling in pwME?

 

The visible app might give some good data on pacing and perhaps this can be adapted to factor in "not trying too hard"

Pacing is complex and individual and we have a lot to learn from listening intently to those individuals doing it and looking at the data. There are days when Angus has to move and he may not look or feel his best but something kicks off inside him and he HAS to move, striding up and down the house mostly. Now why is that!
His been using the visible free version, we are both intrigued to find out when this happens and if there is any changes that we can see, not for any particular reason because if he could replicate or sustain he would have but it is bizarre.

 

On snakes and ladders, another way I’ve sometimes described it is this…

It’s like trying to cross a road while wearing a blindfold and ear muffs. You may make it across but you may well get hit by a car.

I think it describes both the potential impact but also the lack of reliable information we have from our senses on how to avoid that impact. And the way in which doing the same thing one day to the next may produce different results. A lot is down to external forces or at least factors outside of our control.

I think snakes and ladders may be a more useful and less brutal analogy for the purposes of this paper. But thought I’d share with people here anyway.

 

Yep. When I’m in denial and pretend PEM doesn’t exist, it still happens. There’s no reflex forcing it to happen. The only reflex is resting when you know it’s going to happen so it lasts less long. But that is separate from the PEM itself.