Ken Ware - Neurophysics therapy

[unicorn7]

Thanks, @unicorn7 for the video. I can't tell from it whether it is the person or the machine causing the shaking. Can you clarify whether a machine is needed, or whether you need to be someone who shakes like this spontaneously when you try to move, or is it something people are trained to do as a deliberate exercise?

No, it's the person that is shaking. You take the little tremor you get when something is heavy and you allow that to get bigger. Mostly by relaxing parts of your body. it takes so much tension out of all parts and muscles of your body, it's really nice. Looks a bit weird though You do it on the machines, partly because you start with the exercises, loose power or feel pain, solve that, and go on with the same exercise. It's also nice to do it in some machines, because they give you pressure in different places, so the effect of loosening your muscles with the tremor is better in some positions than others. I have elastics to do it at home.
They teach you in the 4 weeks to do it properly. I would have had no idea how to do this in the way I do it now.
I did some TRE style tremors before I went there, but it is in nothing comparable.

I did like the little tremors you do with TRE, but that's just the beginning. You specifically target all different parts of your body and target specific spots that are painful, or weak of stiff etc. And then put them to use! And I think that makes it work. Not just doing the tremors, that's just a way to gain movement or strength back momentarily.

 

[unicorn7]

This reminds me of something I got from a private physio (after I saw a private knee surgeon who suggested rehab before doing the suggested surgery) for an injury I have had to my left knee from kickboxing as a teenager. The initial physio was all about switching muscles on and off and having control, I couldn't fire my left glute muscle and a bunch of leg muscles properly and learning to just flex them and then basic strengthening them was a big improvement. The second stage was all based on range of motion, by rolling the joint through its maximum pain free range I could find repetitions and gradually rebuild up control of the muscle structures together for precise movement. Its sort of the polar opposite approach to shaking but I think they try to achieve the same goal, moving the joints and muscles through their range of motion to train the nervous system to control the muscles better. Starting initially almost entirely unloaded and moving up to doing so under some stress and going from really slow too athletic speeds. Anecdotally for me it worked well, considering the NHS in trying to fix this put me in a wheelchair for 5 months I would say it worked a lot better than the nonsense exercises the NHS had me do anyway! Its based on a particular youtuber/trainer who produces a bunch of videos on this but I am drawing an utterly blank right now on the channel name and I can't find it but I'll be back once my brain fogged brain chews it over and spits out an answer.

It sounds like the same concepts. The tremors are for getting your range of motion back and the exercises in the proper posture are for getting the right muscles to fire. Simply said. My whole body was so messed up, there was pretty much no part of my body moving normally. I can now feel my upper back doing something, that's a big patch of muscle. Instead I used the smaller muscles of neck and hands, which are not made for that. I think personally a lot of symptoms like nausea and dizziness where neck related with me.

I have used these concepts when I was still working and training horses, but this was the same concepts, but another level of tools and knowledge. Everything with an input on the muscles (massage, myofascial release etc) don't work for me as they cause PEM, plus they take a lot of work and work mostly local, while tremors are full body, you can do them yourself and they don't trigger PEM for me. Which is super weird, because it's pretty intensive. I was mild, but the people I know that are moderate or even going towards severe, could do it. I don't know why this is possible.

 

[Arfmeister]

Everything with an input on the muscles (massage, myofascial release etc) don't work for me as they cause PEM, plus they take a lot of work and work mostly local, while tremors are full body, you can do them yourself and they don't trigger PEM for me. Which is super weird, because it's pretty intensive. I was mild, but the people I know that are moderate or even going towards severe, could do it. I don't know why this is possible.

hi @unicorn7 How are you now?
Wanted to ask you some questions but I don’t know if you’re still active here

 

[unicorn7]

hi @unicorn7 How are you now?
Wanted to ask you some questions but I don’t know if you’re still active here

I have been very well! Sorry, never saw your message. It’s been a long time since I have been on this forum.

 

[Arfmeister]

I have been very well! Sorry, never saw your message. It’s been a long time since I have been on this forum.

Since you have a more medical and scientific perspective on NPT I am curious about your your insights.

1. What is your scientific medical explanation that NPT worked for you ?
- I have read some of the articles of Ken Ware, but it doesn’t make sense to me (a lot of difficult words but things like “emotions are in the muscles/lactate” for me is abracadabra)
Have you personally undergone the treatment, and if so, where?

2. Were you able to prevent PEM during the training/exercises ?
- specially in situations where you would normally have expected it?

3. Does the program require you to have a stable baseline ?
- or can you be in a rolling PEM?

Thanks

 

[unicorn7]

Since you have a more medical and scientific perspective on NPT I am curious about your your insights.

1. What is your scientific medical explanation that NPT worked for you ?
- I have read some of the articles of Ken Ware, but it doesn’t make sense to me (a lot of difficult words but things like “emotions are in the muscles/lactate” for me is abracadabra
Have you personally undergone the treatment, and if so, where?

2. Were you able to prevent PEM during the training/exercises ?
- specially in situations where you would normally have expected it?

3. Does the program require you to have a stable baseline ?
- or can you be in a rolling PEM?

Thanks

I have done 4 weeks in Australia, three years ago.

As I understand it, he had the method first, and tried to find an explanation for it. To be honest, I think there is way to much focus on the theory, it would be better to just go spread the method.

I would say it’s an advanced type of rehabilitation that is extremely focused on the nervous system, instead of movements or goals. The goal is a steady nervous system. It was never made for me/cfs, it’s just a coincidence that it seems to be pretty great for a lot me/cfs patients. They were working with other nervous system problems before: parkinson, MS, spinal cord injuries, pretty solid neurological diseases.

I was there for 4 weeks, the therapy is exercise, but you work on not triggering your nervous system with movement/activity, so I didn’t t get pem from the training.
You get a solid base there, then you go on when you get home. You move your comfort spot, so I could do way more, but then of course, if you hit the new limit, you still get pem. I call it pacing 2.0. Instead of just pacing to keep what you have, you have a method to stretch your comfort zone. Slowly of course. It took me three years to get to working 20 hours, going to the gym (now solid workout!) and working with my horse 5 days a week. All normal social stuff as well. No symptoms anymore.
I do think I have to keep doing the exercises 2-3 times a week and be very mindful of enough rest, more than completely healthy people.

I was mild before I went, but I am/was also treated by dr. De Meirleir and went from moderate to mild with that. There’s now completely bedbound people going as well, someone went with an ambulance to the plane. I thought he was mad, but he gained a little of function back. I think most people start in a pem, because of the trip.

 

[Grigor]

I thought he was mad, but he gained a little of function back.

It's important to note that some people do better in a warmer climate. Some mild cases even are close to remission. This can also partly explain why some improve a lot and that we see setback or dips in their health when the weather in the winter changes again.

 

[unicorn7]

It's important to note that some people do better in a warmer climate. Some mild cases even are close to remission. This can also partly explain why some improve a lot and that we see setback or dips in their health when the weather in the winter changes again.

I always was way better in the cold, but it could be a factor.
I am in contact with about 50 people that went there. Some people do great, some people have a lot of dips.
What I hear most is people going way to fast, most people really need to build every step extremely solid before going further. I see a lot of people go crazy or do way too much too soon.
And I see some people having setbacks from having a virus infection in winter.

I think for me the combination of being really steady in inflammation/immune system and gut before going there, was perfect for me. It was the perfect missing link for me.

 

[Verity]

I was there for 4 weeks, the therapy is exercise, but you work on not triggering your nervous system with movement/activity, so I didn’t t get pem from the training.

Can I ask what the program means by not triggering your nervous system and how that’s done?

I am glad you’re doing well and are able to work with your horse. I know that means a lot! Not being able to ride is one of the worst parts of ME for me.

 

[NelliePledge]

Given this has been promoted for several years there has been plenty of time elapsed to gather data to provide evidence to show whether it works or not.

 

[unicorn7]

Can I ask what the program means by not triggering your nervous system and how that’s done?

I am glad you’re doing well and are able to work with your horse. I know that means a lot! Not being able to ride is one of the worst parts of ME for me.

You have to be able to do one tiny piece of movement, without getting your heart rate up, shaking or tensing all your muscles, getting warm or flushed etc, all the normal things that happen in a sympathetic overload, only now you don’t stop when the symptoms get bigger, you try to find the tinniest bit of tension in your muscles and you try to get rid of that. They have different techniques for doing that. So it’s feels like your putting out the tinniest spark of your nervous system.
The crazy thing is: over time that hour a day of very low impact movements, translates to real life, it’s really very interesting how that happens. It’s like training a muscle, but it’s your nervous system. It takes a lot of work and repetition of course.

Being able to spend time with my horse and ride again, it’s just surreal

 

[OrganicChilli]

Are we really promoting GET and BPS nonsense about the nervous system? I don't get nervous when I go to the bathroom, my muscles don't shake and I don't get flushed - but if I do it one too many times per day, I get PEM. And whatever PEM is, it's not a sympathetic overload when I dare take a step too many.

I'm glad you got better, but it had nothing to do with this protocol especially because you were already mild.

I'm really surprised all the criticism of this nonsense programme has been buried in the first few pages of this thread.

I think for me the combination of being really steady in inflammation/immune system and gut before going there, was perfect for me. It was the perfect missing link for me.

This doesn't even mean anything.

 

[unicorn7]

Given this has been promoted for several years there has been plenty of time elapsed to gather data to provide evidence to show whether it works or not.

I have been keeping track anecdotally, but it’s too varied to really collect data.

To be honest, although it helped me, I don’t see this as a future option for pwME. It’s just a small business of two people being very good at what they do, but there is not nearly enough capacity to treat so many people and I think it would be a lot easier if there was a form of medication. It’s a pretty long and tedious process.
I do hope the basic principles could be more known, as the insight in movement and how that relates to your nervous system, has been super interesting.

 

[unicorn7]

Are we really promoting GET and BPS nonsense about the nervous system? I don't get nervous when I go to the bathroom, my muscles don't shake and I don't get flushed - but if I do it one too many times per day, I get PEM. And whatever PEM is, it's not a sympathetic overload when I dare take a step too many.

I'm glad you got better, but it had nothing to do with this protocol especially because you were already mild.

I'm really surprised all the criticism of this nonsense programme has been buried in the first few pages of this thread.



This doesn't even mean anything.

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 really mean the sympathetic reaction of, for example, your heart rate shooting up when you stand. That sympathetic reaction.
I never had any reaction to mindfulness or breathwork or anything.
The sympathetic reaction of the autonomic nervous system is well known factor in ME (pots, OI) and I think Nancy Klimas was studying it with medication, but I have to search for it.

It’s not bps (although they do use some of the soundbites), the proces is not on the mind, but for me it was completely on the body.

Although I completely understand your reaction, I am not selling anything. I am completely aware of all the get/bps bullshit and this is not it. I have been harmed by GET, this is the opposite of GET. You never ever ever ignore the signals of your body. I am just trying to explain what happened to me, feel free to ignore it completely.

I have done the program, and I know what I myself have done every day for the last three years. At this point it sounds a bit like telling someone who goes to the gym everyday and trains every day, that it could be a coincidence that they are able to lift 100kg.

I have been treated for lyme 6 years ago. That helped with the intense ill feeling. Gammanorm as well.
I have also been treated (am still being treated) for sibo that still keeps coming back when I quit medication.

 

[Liie]

This is my speculation about why some gently exercise programs might help to achieve an improvement for some people with ME/CFS, but not a recovery:

Maybe many people with ME/CFS have the capacity for a little exercise before deteriorating, but only a little. But because it's hard to find the this limit, and people have experienced that the consequences for exceeding the limit are severe, many people exercise too little or nothing at all.

But at the same time the consequences of doing too little or no exercise are the same as for healthy people: You risk physical injuries and generally feeling bad both physically and mentally.

People with ME/CFS have a hard problem balancing the potential bad consequences both of doing physical exercise and of NOT doing physical exercise.

Maybe therapies like this make some people feel better not because the content of the exercise is special, but because they are gentle enough to be tolerable for many people with ME/CFS. So they start to get the health benefits of some gentle exercise.

In this hypothesis special "neurophysical" part of this particular program is just a purple hat. The effective part is the gentle exercise.

Maybe. Just a thought.

PS: Someone wrote a really description of a similar idea in some thread a while ago. I think it might have been a hypothesis for why psychosomatic often seen some improvements in patients to start with, but when patients are discharged and continue to exercise they often deteriorate.