Ken Ware - Neurophysics therapy

unicorn7 said:
The same for me, it has nothing to do with nervousness. For me, it felt mostly like muscle tightness that I was hardly aware of anymore.
Say for example you lift a dumbbell of 1kg with your biceps, apparently my bodies reaction is to do that with the muscle force and recruitment of every and all muscle as if I was lifting 10kg.

I have also been treated (am still being treated) for sibo that still keeps coming back when I quit medication.
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Are there any measurable values to corroborate what you are saying? An analogy in weight lifting of 2day CPET for aerobic performance?
Do you know if KW's work has been applied to exercise intolerance conditions such as McArdle's (glycogen storage), where there is an established pathway and coping strategies but where other contributory elements may have gone unappreciated ?
 
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OrganicChilli said:
There's no doubt pwME are deconditioned by being sedentary,
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I have considerable doubt about that. If patients are more than mildly deconditioned then why can they immediately get up and do stuff when they have a good day or few hours?

Obviously I am not saying they can suddenly run a marathon or do a two hour workout in the gym, especially not the more severe and long-term patients.

But I have a strong suspicion that most patients are not as classically deconditioned as current understanding of that phenomenon might predict, and that something is going on in this disease that provides some kind and degree of protective effect against it.

If so, then that is a serious and possibly unique clue.
 
Sean said:
But I have a strong suspicion that most patients are not as classically deconditioned as current understanding of that phenomenon might predict, and that something is going on in this disease that provides some kind and degree of protective effect against it.
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I have no Research to back this up. Only my personal experience.

But my fringe theory is that we decondition less because we are continuously in exercise mode: our heart as well as our muscles.
- Continuously close - or above the threshold of anaerobic exercise

So I agree with the fact that we are not as much deconditioned as one would be that would be housebound or bedbound by another disease like MS, etc.
 
Arfmeister said:
But my fringe theory is that we decondition less because we are continuously in exercise mode: our heart as well as our muscles.
- Continuously close - or above the threshold of anaerobic exercise
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But wouldn't that be pretty easy to disprove: pwME/CFS don't have considerably higher resting lactate levels which is how those thresholds are defined? Moreover, experiments in the metabolic chamber showed that there were no big differences in pwME/CFS resting vs healthy controls in any of the measures taken. How would that idea make sense then?
 
OrganicChilli said:
Everything you mentioned is nothing but BPS and the exact same thing that has been discussed elsewhere about Whitney Dafoe and Joshua Leisk.
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First as a strong disclaimer: I have done +5 body-mind and/or BPS therapies and they harmed me more than helped me.

But I’m always fascinated by patients that benefit - more than one would expect - from a certain therapy.
Specially, if they’re severe.

As this NPT therapy is for some reason quite popular in the Netherlands, I know quite a few patients that followed the therapy.
- they had to travel to Australia and sometimes stay 12 weeks to fulfill the program
- I know one long-term very severe patient that went and had a semi remission : still cognitively, impaired a lot, but physically he is moderate/mild now

I think this is a very sophisticated form of pacing/graded exercise therapy with a very personalized one on one approach during 12 weeks.
- They throw in a bit of BPS, but I think it’s mostly 2 very good physiotherapists with some special techniques that - possibly by coincidence - work well with ME patients
- maybe because they stay under the anaerobic threshold / PEM threshold

Anyway, as I can vouch for the legitimacy of a few of these patients, I’m trying to understand better what happens.
- one thing is certain: patient that go there have been able to stabilize their PEM to a certain level
- the severe guy I was talking about above still regularly had PEM, but he knew how to minimize to a certain level
 
Sean said:
I have considerable doubt about that. If patients are more than mildly deconditioned then why can they immediately get up and do stuff when they have a good day or few hours?
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To continue the anecdotes.

For the first twenty years or so of my ME I was repeatedly surprised by my preserved fitness and lack of deconditioning. My ability to undertake physical activity when in remission returned to premorbid levels without any apparent delay. It has only been in the last ten years when I have had much more severe ME spending some years largely bedbound that I have become very unfit, walking to my neighbours across the Green, leaving me with aching muscles, breathlessness and fatigue over and above triggering PEM. This is more than I would expect from aging and cardiovascular issues, though I can’t rule them out.
 
EndME said:
pwME/CFS don't have considerably higher resting lactate levels which is how those thresholds are defined?
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Is there a research paper you can link to?

My last measured lactate level was 9 MMOL/liter (!) - measured three months ago in the morning without any exertion
- the doctor considered it like early stage sepsis

EndME said:
, experiments in the metabolic chamber showed that there were no big differences in pwME/CFS resting vs healthy controls in any of the measures taken. How would that idea make sense then?
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Again, I don’t know about this research you’re referring at.

But I do remember that Rob Wust studied Deconditioning on Long Covid patients with PEM, and one with healthy controls that had to stay in bed for 4 weeks.
- The deconditioning profile was completely different.

*this deconditioning is basically one of the pet theories of Paul Garner for the PEM effect (apart from trauma and fear, blah blah blah blah blah blah blah blah blah)
 
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Arfmeister said:
Is there a research paper you can link to?
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I’d think this would be a whole flurry of studies on lactate and there'll be a whole flurry of studies on heart rate or other things as well. I’d assume lactate will have been measured as part of some of the CPET studies at rest, then lactate and/or related metabolic pathways will be found in the metabolic studies (including the CPET metabolic studies) of which many exist and I recall some imaging studies looking at lactate in the brain. I'd be suprised if it wouldn't also haven't been measured in the intramural study. Admittedly there was also a study with positive results: https://www.s4me.info/threads/eleva...e-cfs-ghali-et-al-dec-2019.12791/#post-224409, both those results look different to being continously at anearobic threshold (the elevations are modest not similar to not exercise-level)? Maybe the results suggest that lactate and/or related metabolic pathways are somehow implicated (for example that there is slightly impaired clearance) and that something subtle is occurring or even that the CPET studies implicate that aerobic threshold is reached earlier than one would expect from equivalently deconditioned people, but I think if there was a difference as gross as ME/CFS patients being close or above the threshold for anaerobic exercise during rest, we wouldn’t be having these discussions in the first place and hundreds of ME/CFS would have looked quite different?
Arfmeister said:
Again, I don’t know about this research you’re referring at.
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The intramural study used a metabolic chamber.

Arfmeister said:
But I do remember that Rob dead to studies one on Long Covid patients with PEM, and one with healthy controls that have to stay in bed for 4 weeks.
- The deconditioning profile was completely different.
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But Rob didn't explain the results by saying that ME/CFS looked like they were always around their anaerobic threshold and the patients didn't have permanent tachycardia unless I misunderstood? My layman understanding is that the differences were much more subtle between the 2 groups and mainly related to smaller shifts in glycotic fibers which could be due to a number of reasons.
 
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EndME said:
Maybe the results suggest that lactate and/or related metabolic pathways are somehow implicated (for example that there is slightly impaired clearance) and that something subtle is occurring or even that the CPET studies implicate that aerobic threshold is reached earlier than one would expect from equivalently deconditioned people, but I think if there was a difference as gross as ME/CFS patients being close or above the threshold for anaerobic exercise during rest, we wouldn’t be having these discussions in the first place and hundreds of ME/CFS would have looked quite different?
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Interesting paper:
- ME/CFS patients with elevated blood lactate at rest may be at higher risk for more severe PEM
- Elevated (n = 55; 44.7%) and normal (n = 68; 55.3%) lactate groups were comparable except for PEM, which was more severe in the elevated lactate group

I think if you can stay completely within your (aerobic) threshold and don’t reach PEM, you won’t show high lactate levels
However, the opposite is : if you regularly need to surpass your anaerobic threshold in order to survive and you are regularly in PEM, you have a double risk:
1) regular high lactate levels
2) difficulty to clear them, because of your immobility because of the PEM crash

So my guess is there is a sub group suffering from regular high lactate levels - even in rest (the ‘burning muscles’ is a common thing you hear)
- it’s probably the more severe that regularly have PEM (rolling crashes)

And I definitely think all ME-researchers should start measuring markers in the *) rest phase and *) PEM phase
- because many values are probably very different

PS: I also found this paper in the thread you mentioned : The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in ME CFS

The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

In this study the muscle bioenergetic function in response to exercise in severe ME was explored to see if the underlying metabolic problem in ME, responsible for the severe
sciforschenonline.org sciforschenonline.org
 
Arfmeister said:
So my guess is there is a sub group suffering from regular high lactate levels - even in rest (the ‘burning muscles’ is a common thing you hear)
- it’s probably the more severe that regularly have PEM (rolling crashes)
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I don't see how one can explain any observations in severe ME/CFS by extremely marginal differences in lactate levels which might not even exist.
 
Adding to my initial comment on deconditioning: I have had some basic core strength testing done by doctors and physios and they could not find anything to be concerned about.

Which is one of the reasons I am not convinced about deconditioning being a significant or primary feature of ME/CFS.
 
EndME said:
I don't see how one can explain any observations in severe ME/CFS by extremely marginal differences in lactate levels which might not even exist.
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I don’t think it’s a ‘marginal difference in lactate levels’ - specifically for a subgroup.
I also think it’s worthy of more research. I know that Todd Davonport has taken an interest, in this topic
Maybe because I’m selfish , because it’s my worst symptom: as I type my arm Muscles are burning.

But as an example: In a short time I have found at least n=10 patients with high lactate levels
- If you go through these threads you can find various reports of S4ME members that have (very) high lactate levels at rest.
- Then there’s also reports of external measurements (e.g. from X Twitter).

So there is definitely a sub group.

https://www.s4me.info/threads/did-a-lactate-test.2925/
https://www.s4me.info/threads/lactic-acid-lactate-in-me-cfs.44969/
https://www.s4me.info/threads/hypot...s-long-covid-2023-van-der-togt-rossman.32878/
and a members only thread
 
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Sean said:
Adding to my initial comment on deconditioning: I have had some basic core strength testing done by doctors and physios and they could not find anything to be concerned about.

Which is one of the reasons I am not convinced about deconditioning being a significant or primary feature of ME/CFS.
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INdeed. I'm pretty ill and agree with @Peter T that something new seemed to happen as I got severe, albeit I was also older but not actually 'old'.

Anyway on this point on one of my last good days in recent times I remembered the test of whether you can lift one leg up and on the remaining leg do a full squat and stand without losing balance. And I can on a good day, on my one good leg (it just wouldn't be sensible in case of other injuries on the other one) probably better than I'd guess most my age who aren't properly athletic still could. And it's weird because it isn't even like on those 'better days' even brushing my teeth becomes something I know I'll get to the end of when I start it, I'm still exhausted and debilitated and needing to recline with just tiny amounts of more vs other days.

I also wouldn't keep pushing it though because of that bit re: the something special when I became severe. It seemed to change the vulnerability of my muscles. Not being able to resist trying it once was the biggest risk I could take given my current situation

Having said that there were also said changes when I wasn't severe but was stupidly in a situation where the illness was 'live' as I call it when I'm in a big decline, and had to do exertion or even more foolishly 'just tried small exercises in the gym' that I'm pretty sure caused some of the most disabling additional aspects I live with now.

I won't go into detail of it here because it isn't for someone like Ken to be given such insight. But given these things people won't realise aren't just like PEM they are used to and even though eg if you recover the acute issue at the time of fatiguability you might think it hasn't done long term harm. I didn't do much of these things that were muscle and not cardio focused to end up with what you would call permanent serious additional disability except for the keeping the door open for there being a cure type idea (because these muscle things just don't seem to really heal many years on).
 
Sean said:
Adding to my initial comment on deconditioning: I have had some basic core strength testing done by doctors and physios and they could not find anything to be concerned about.
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Forgot to say that this testing was done more than 25 years after getting sick, which included some periods of being more or less bedridden.

If deconditioning was going to show up it should have shown up by that point.
 
Sean said:
The deconditioning claim was made long before Garner got into the game. It was a central pillar of the original psycho-behavioural model put forward by Wessely, Chalder, et al, back in the early 1990s.
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...and I suspect it's always been misused in ME/CFS.

My great granddad was a postman whose walk was about nine miles over a really hilly area. He did it six days a week, 48 weeks a year, in all weathers. When he retired, he spent all day on the sofa with his feet up and his nose in a paper or book.

If he'd rested all day because he'd developed ME/CFS, his lack of activity might have been pathologised. There might have been talk of deconditioning.

But it wasn't, because he didn't. He just behaved like someone who can do very little, and nobody tried to impose their expertise or therap him out of it.
 
Arfmeister said:
I don’t think it’s a ‘marginal difference in lactate levels’ - specifically for a subgroup.
I also think it’s worthy of more research. I know that Todd Davonport has taken an interest, in this topic
Maybe because I’m selfish , because it’s my worst symptom: as I type my arm Muscles are burning.

But as an example: In a short time I have found at least n=10 patients with high lactate levels
- If you go through these threads you can find various reports of S4ME members that have (very) high lactate levels at rest.
- Then there’s also reports of external measurements (e.g. from X Twitter).
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It has been researched, we know the burning sensation and sensation of fatigue alone is not simply due to lactate. https://pubmed.ncbi.nlm.nih.gov/24142455/

Less efficient metabolism (excessive glycolysis) leading to excess lactate, can be due to multiple reasons (besides mitochondrial disease) including poor microvascular blood flow, and altered motor recruitment patterns due to central fatigue leading to increased activation of higher threshold motor units (which have less efficient oxygen usage due to lower micro-capillary density, further distance for oxygen to travel etc).

Increased sensation can also be due to peripheral sensitisation of the nerves themselves.
 
Snow Leopard said:
It has been researched, we know the burning sensation and sensation of fatigue alone is not simply due to lactate.
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Yes, but in my case (at least) high lactate corresponds / correlates with burning muscles. See my post below attached from a different thread.
Also less symptoms correlates with lower lactate.

To me this seems logical : when you are severe, you easily go above anaerobic threshold, hence glycolysis and lactate
- and muscles simultaneously get metabolic stress, and have micro damage + inflammation

Post in thread 'Lactic acid, lactate in ME/CFS'
https://www.s4me.info/threads/lactic-acid-lactate-in-me-cfs.44969/post-662910
 
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