A Thought Experiment on Muscles

[jnmaciuch]

Yep. Mostly the same pattern: wake up unable to move my arms and legs, which passed after 45 – 60 minutes. It left me with really heavy-feeling muscles, but I was more or less okay once my limbs had come back online.

It happened enough times that for my whole working life I set the alarm for three quarters of an hour before I needed to be out of bed, just in case. It wasn't weakness or fatigue, it was that my limb muscles (the others were unaffected) wouldn't contract at all.

I don't think it's common in ME/CFS, though, and I've never heard anyone describe that particular morning pattern.

Could it be caused by passing an exertion threshold from minute movements during sleep? Presumably if you’re awake you can better control those movements and actually give your muscles a chance to rest.

If that paralysis is caused by enough of a buildup of lactic acid to affect neural signaling, for example, that would be about the right timeframe for it to clear out through the circulatory system and fits with your description of a heavy feeling.

 

[AliceLily]

Neuronal dendrites have about 20,000 point synapses laid out along linear branches, each of which can generate an electrical potential.

Could a mod move this to the 'A thought experiment on muscle' thread. Thanks. I don't know to take a quote to another thread. Done

This has brought back a memory of my first six years of early ME when I did not know I had ME.
I was on the spiral to very severe ME.

This only happened to me in these first years, never happened again since. I do not know if this is common with non-ME.

I was having great difficulty walking up a hill. It was like my legs at the top back were paralyzing on me. My whole concentration was on trying to move each leg forward. I didn't know how I was going to get up the hill and was very conscious that someone might be noticing I was having difficulty.

Has anyone else experienced this with their ME?

I should add that the back of my leg at the top gives me the worst PEM when I try to strengthen that area.

 

[Yann04]

I don’t know where to post this. But I read this the other day and it made me think of this thread.

Apparently human manual labour (like digging a hole, brisk walking, or moving objects) is around ~100 watts on average of power. While the biochemical processes behind the human brain are more like ~20 watts on average.

 

[AliceLily]

Have you ever experienced temporary paralysation? Not «I can’t move because it causes PEM» but «I literally can’t move»?

I have on three occasions. Two were during extreme PEM and the last one just came out of nowhere many weeks into a crash. I slowly regained movement over many hours.

It felt like I wasn’t able to get my limbs to move even though I could feel them.

I missed seeing your post and following ones. I also have experienced feeling paralysed at the back of my legs at the top while walking. I am just waiting for one of my posts to be moved to this thread about this subject.

 

[hotblack]

I like the signalling idea for a few reasons. It makes sense to me in terms of my experience.

But one attraction, I think a signalling issue would massively change perceptions of ME/CFS. It wouldn’t be that ‘feeling tired’ illness anymore.

 

[JemPD]

Have you ever experienced temporary paralysation? Not «I can’t move because it causes PEM» but «I literally can’t move»?

oh yes. I get it pretty regularly when in deep PEM, no voluntary body movement whatsoever, except the eyes & breathing continues as normal. It feels like the signals between brain & body have been lost.
lasts about 3-10mins & afterwards limbs are like tree trunks, great floppy things i have difficulty aiming/controlling, for at least an hour after that.

Heart rate is usually normal during these episodes.

 

[Kitty]

Could it be caused by passing an exertion threshold from minute movements during sleep? Presumably if you’re awake you can better control those movements and actually give your muscles a chance to rest.

I don't think so. When it started I was well enough to be working full time, and the symptoms weren't like the post-exertional effects of ME/CFS. If I'd overexerted enough to cause complete muscle failure, I'd have been very unwell with PEM afterwards, yet I wasn't. The heavy feeling in my legs usually eased by the next day.

It's not as profound, but I also get reduced muscle contraction after using steroid asthma meds and eating sugary foods. The latter has been a lifelong battle! I feel much better for not eating high-carb foods, especially as these effects are additional to normal ME/CFS symptoms (which are quite bad enough), but I have a sweet tooth...

I added the story because it might be part of ME/CFS, but deep down I've never really thought it is. Infrequent but profound loss of muscle control in a mildly ill person, which disappears around age 40 even though the ME/CFS is getting worse, doesn't add up. The sharp separation between limbs (affected) and all the other muscle groups (unaffected) is also odd. Doubt I'll ever find out, as I can't be bothered to put up a fight to get it investigated as something on its own.

 

[hotblack]

But one attraction, I think a signalling issue would massively change perceptions of ME/CFS. It wouldn’t be that ‘feeling tired’ illness anymore.

I’m still getting through the longer posts, great discussions! But to add to my thought last night:

A signalling issue between the nervous and immune systems feels a lot more satisfying to me. Happy to expand on why if people think it’s useful. It’s not particularly scientific to say it feels right but it does.

Of course I’ve liked different ideas at different points so I reserve the right to change my mind, hate this idea and contradict myself in the future

 

[hotblack]

To me the predicable and reliable energy reservoir theory doesn’t explain a lot of my experiences. But I really like the way @jnmaciuch is thinking about things and enjoy watching the process and the discussion.

Energy seems more like a symptom than a causal thing to me these days. I’ve increasingly felt uncomfortable with the description but accepted that if energy production is broken somehow it could impact a whole load of different systems in different ways giving rise to the symptoms I experience. After all, I don’t understand biology.

But let’s assume a signalling issue somewhere. Maybe an amount of a transmitter or rate of creation or recycling is at issue and this explains the clear limits some see? Maybe not, maybe the signalling is just going wrong in another way.

I’m thinking of this perhaps more as a bandwidth or latency issue, the way the body processes information (after all that’s what the body is doing all the time, not just mentally but in so many systems, making choices or decisions, responding to changes).

Maybe the difference between milder and more severe is how bad this is or perhaps how far things have then cascaded through multiple downstream systems?

Now let’s flip things on their head and assume there is no energy deficit in any of us. Is it possible that when things are just a bit wrong, milder people in particular are simply using more energy to compensate for this underlying issue? Using more energy to make up for the noisy or error prone signalling systems? And it’s that which is the reservoir or predictable limit some see (which can be aided by stimulants or other energy production supports)?

I wonder how much that’s the case for us all. Even the ‘wired’ or other experiences of pushing when we can do stuff is simply running our systems hot to overcome this underlying deficit not in energy but in information/signal processing capacity? If you stay milder you can compensate in different ways, when crashed or more severe you cannot?

 

[V.R.T.]

I have that freezing thing. I have been experiencing it more recently. As Jem describes, freezing for 3-10 minutes then it loosening up. Sometimes its more and sometimes I freeze and then unfreeze and then freeze again for a while.

It feels like the brain cant move the muscles, rather than the muscles can't move to me. Like signals are not being sent. It can come on very suddenly without warning. It's accompanied often for me by feelings of low blood sugar/hunger but not all the time.

For me it began when I was still mild but pushing and crashing all the time. My family got used to it and my doctor minimised it when it happens. Just goes to show what we can ignore without medical 'legitimisiation'

 

[Evergreen]

I believe I’ve maybe heard of people that have gotten PEM from a physio moving their legs. But that might be because they were very severe and couldn’t tolerate the situation in the first place.

There's a study by Rowe et al. 2016 where they compared true neuromuscular strain and sham strain, both delivered by research staff, in people with Fukuda CFS and healthy controls https://pmc.ncbi.nlm.nih.gov/articles/PMC4948885/

For the 15 minute passive SLR [straight leg raise] strain maneuver, the research staff passively supported the non-dominant limb at the heel with the participant's hip flexed and knee extended at the hip angle mid-way between the onset of stretch and end range. For the 15 minute sham SLR maneuver, the research staff positioned the non-dominant limb in 5 degrees of hip flexion with rolled towels placed behind the knee and ankle to minimize the neural strain and the likelihood of associated symptom generation. Participants were instructed to not actively assist with muscle contraction to maintain the limb position. Extraneous limb movements were discouraged, and conversation between staff members and the participant was limited to essential instruction only.

Compared to individuals with CFS in the sham strain group, those with CFS in the true strain group reported significantly increased body pain (P = 0.04) and concentration difficulties (P = 0.02) as well as increased composite symptom scores (all P = 0.03) during the maneuver. After 24 hours, the symptom intensity differences were significantly greater for the CFS true strain group for the individual symptom of lightheadedness (P = 0.001) and for the composite symptom score (P = 0.005). During and 24 hours after the exposure to the true strain maneuver, those with CFS had significantly higher individual and composite symptom intensity changes compared to the healthy controls.

increased mechanical sensitivity may be a contributor to the provocation of symptoms in this disorder.

 

[Trish]

I have deliberately not started reading this thread as it grew so fast I knew I wouldn't have the capacity to keep up. If anyone involved in the discussion could tell me whether it includes new developments I should know about, can you please enlighten me, briefly?

 

[Utsikt]

I have deliberately not started reading this thread as it grew so fast I knew I wouldn't have the capacity to keep up.

I think I need to learn that skill myself!

 

[Jonathan Edwards]

I have deliberately not started reading this thread as it grew so fast I knew I wouldn't have the capacity to keep up. If anyone involved in the discussion could tell me whether it includes new developments I should know about, can you please enlighten me, briefly?

Not really. I am just being devil's advocate saying that maybe muscle itself is not part of the pathology in ME/CFSand that symptoms come from signals that go with muscle use but not from any defect in the muscle itself. People have been arguing either way but we haven't introduced any radical new concepts!

 

[jnmaciuch]

To me the predicable and reliable energy reservoir theory doesn’t explain a lot of my experiences. But I really like the way @jnmaciuch is thinking about things and enjoy watching the process and the discussion.

Energy seems more like a symptom than a causal thing to me these days. I’ve increasingly felt uncomfortable with the description but accepted that if energy production is broken somehow it could impact a whole load of different systems in different ways giving rise to the symptoms I experience. After all, I don’t understand biology.

But let’s assume a signalling issue somewhere. Maybe an amount of a transmitter or rate of creation or recycling is at issue and this explains the clear limits some see? Maybe not, maybe the signalling is just going wrong in another way.

I’m thinking of this perhaps more as a bandwidth or latency issue, the way the body processes information (after all that’s what the body is doing all the time, not just mentally but in so many systems, making choices or decisions, responding to changes).

Maybe the difference between milder and more severe is how bad this is or perhaps how far things have then cascaded through multiple downstream systems?

Now let’s flip things on their head and assume there is no energy deficit in any of us. Is it possible that when things are just a bit wrong, milder people in particular are simply using more energy to compensate for this underlying issue? Using more energy to make up for the noisy or error prone signalling systems? And it’s that which is the reservoir or predictable limit some see (which can be aided by stimulants or other energy production supports)?

I wonder how much that’s the case for us all. Even the ‘wired’ or other experiences of pushing when we can do stuff is simply running our systems hot to overcome this underlying deficit not in energy but in information/signal processing capacity? If you stay milder you can compensate in different ways, when crashed or more severe you cannot?

Thanks for sharing your experiences and thoughts! For what it’s worth, it think the predictable and reliable part is something that is only observable in milder pwME.

As soon as it gets more severe, I would anticipate the “predictable” part goes out the window, as there simply is no way to (consciously) keep track of the “exertion” of everything the body does. So I anticipate it would feel like the body is acting up randomly and without warning quite often.

[Edit: plus I do think a cellular metabolism explanation would likely be very closely tied into neural and immune signaling]

Off the top of my head, I don’t know of a way in which increased cellular metabolism from stimulants would be able to compensate for some kind of neural misfiring or immune activation—my sense is that the relationship is more likely to be the other way around if it exists at all. [edit: though of course stimulants are neuromodulatory first and foremost]

It’s interesting to think about though! Any theory of the disease is going to have to explain both the mild and severe experience eventually, so it’s really helpful to hear the perspective of everyone with experiences different from my own.

 

[jnmaciuch]

I have deliberately not started reading this thread as it grew so fast I knew I wouldn't have the capacity to keep up. If anyone involved in the discussion could tell me whether it includes new developments I should know about, can you please enlighten me, briefly?

My contribution to the discussion has mostly just been “there’s no need to to claim mitochondrial abnormalities or a (full stop) lack of ATP for a metabolic explanation of ME/CFS that fits most pwME’s described experiences.” Probably no new developments in that regard?

 

[Mij]

My cognitive energy deficit only started developing when I started exercising again 8-9 years into the illness which kind of indicates to me that PEM or delayed PEM isn't a muscular deficit.

 

[hotblack]

Caught up and reached the talk of afferent nerves, another new thing to learn about!

Something going on with receptors or nerve fibres responsible for carrying sensory information towards the central nervous system (including light, sound, heat, smell, taste, etc) is very appealing to me. And fits in with the information processing line of thought.

And then there’s efferent nerves carrying signals away from the CNS… hmmm. So are those involved too or are we thinking not?

So how or why would something only impact particular nerve types or nerve receptors? Is the idea that something linked to the immune system interacts with those receptors which isn’t normally expected to? Or maybe even different receptors in different people?

 

[Jonathan Edwards]

And then there’s efferent nerves carrying signals away from the CNS… hmmm. So are those involved too or are we thinking not?

That is the elephant in the room maybe. Neuroimmune communication has been talked about for decades. Cytokines making nerves feel lousy is easy but nerves making cells do cytokines has always seemed a bit of a stretch. It might be very important but I am still waiting of the 'aha' moment.

 

[Jonathan Edwards]

So how or why would something only impact particular nerve types or nerve receptors?

Selective expression of cytokine receptors would do. There is every reason to think that will be a thing. But why the variation in how it goes haywire, I don't have any specific thoughts.