Ken Ware - Neurophysics therapy

Grigor said:
Just a few days ago the fatigue clinic (Vermoeidheidkliniek) posted a video of a lady who felt their therapy helped her. The therapy looked similar to Ken Ware's stuff. To my surprise people were annoyed with the fact that they copied it and seemed to be strong Ken Ware believers. Apparently 5 patients went to Australia. 4 are fully recovered.
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I am in a facebook group with people interested in these kinds of therapies and I have to clarify. To be honest, it's a very nice and down to earth group, no strong "believers" at all.

A lot of the people in the group have appalling experiences with the vermoeidheidskliniek, so there is little trust to start with. The Vermoeidheidskliniek has advertised that they are performing the "australian therapy", without ever consulting with this Ken Ware or any of the people that actually went there. It's just one more example of deceit from this clinic for most people, I think.
Other than that, the people that went there are commenting on the technique on the video, that it is very badly executed and they are worrying about harm being done.
 
Just to let you know;)

The facebook group of dutch people got one of the certified people out of Australia to come to the UK and start the training there. You will all call me crazy off course, but I will be in the UK in two weeks:laugh::laugh:

As I am mild and no rehab program can give me any way to get back to doing anything real, I just hope this guy can give me a way of starting somewhere.
 
I know the enthusiasm for a physical therapy will not be high here and will be met with some very raised eyebrows. But I want to keep you updated anyway. If only, because a lot of people here are from the UK and maybe this could be an option.

So I followed the therapy for two weeks in Norwich. Every morning an hour. The first days seemed very well. The therapy is pretty much the anti-GET. Slow, slower, slowest, never push trough pain.

Later I got some light PEM, but the reaction was to do even less and everything even smaller.

I am just 4 weeks from the start, so it’s hard to say anything about how it’s affects the ME. But I can exercise, with no punishement! And that’s already something I love. Even though the exercises are super light, I finally feel I can do something to get my shoulders and all other pain area’s stronger and less painfull.

I feel pretty great, but it’s still early days, so I will update in a while.
This therapy is supposed to calm your nervous system, and I found that a bit non-scientific, to be honest. But I have had normal HRV (measurement for autonomic nervous system) for so many days in these 4 weeks now, and my HRV had never been higher than 30 before.
 
First sentence from the above;
We aim for this contribution to operate bi-directionally, both as a “bedside to bench” reverse-translational fractal physiological hypothesis and as a methodological innovation to inform clinical practice.
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I don't know what language that is, but it ain't English.

It also appears to say absolutely nothing, other than indicate that the person who wrote it......probably isn't a fully paid up, qualified, scientist.

In light of this I have not bothered with subsequent sentences.
 
Wonko said:
First sentence from the above;
I don't know what language that is, but it ain't English.
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Yes, I think he is trying to “blind people with science”. There is no science, just his theories and cherry-picked references that have little scientific merit. A lot of approaches in the wellness-industry is around calming the ANS, moving attention away from the body. I always found a good massage and hot soak (and anti-inflammatories) helped my ME athralgia/myalgia and therefore sleep but still had ME in the morning.
 
I have skipped that first bit, because I didn’t get a word of it. Just trying to make it more interesting I guess. Later on it got a bit more practical and there was a link to a clip with an exercise.

This is obviously not a science guy, but a practical guy. Who found something that seems to work well for him and then trying to explain it. I wouldn’t bother with the explanation too much.

The exercises are actually pretty simple, but not easy to do. I think you can do two things when you find something interesting; make it public, like the woman who discovered EMDR did.
Or market it and keep it very close to your chest, as you don’t want to dilute your method and make some money as well.
 
hibiscuswahine said:
Yes, I think he is trying to “blind people with science”. There is no science, just his theories and cherry-picked references that have little scientific merit. A lot of approaches in the wellness-industry is around calming the ANS, moving attention away from the body. I always found a good massage and hot soak (and anti-inflammatories) helped my ME athralgia/myalgia and therefore sleep but still had ME in the morning.
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Yup, that’s what I mean. The language is the same with all kinds of methods and the only thing relevant for me is, can I do it without PEM and does it help me?

Maybe not very scientific and therefore not appropriate for this forum, but still: I know a lot of people are yearning for some exercise, and I haven’t found anything yet to not make me worse.
 
unicorn7 said:
I know the enthusiasm for a physical therapy will not be high here and will be met with some very raised eyebrows. But I want to keep you updated anyway. If only, because a lot of people here are from the UK and maybe this could be an option.

So I followed the therapy for two weeks in Norwich. Every morning an hour. The first days seemed very well. The therapy is pretty much the anti-GET. Slow, slower, slowest, never push trough pain.

Later I got some light PEM, but the reaction was to do even less and everything even smaller.

I am just 4 weeks from the start, so it’s hard to say anything about how it’s affects the ME. But I can exercise, with no punishement! And that’s already something I love. Even though the exercises are super light, I finally feel I can do something to get my shoulders and all other pain area’s stronger and less painfull.

I feel pretty great, but it’s still early days, so I will update in a while.
This therapy is supposed to calm your nervous system, and I found that a bit non-scientific, to be honest. But I have had normal HRV (measurement for autonomic nervous system) for so many days in these 4 weeks now, and my HRV had never been higher than 30 before.
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[Note, I wrote this response a couple of hours ago, but managed not to post it though I thought I had. One benefit of the software used for S4ME is that it hangs onto drafts we leave hanging rather than such as Facebook that will delete a draft if you just look away or accidentally sneeze.

I think there are potentially interesting issues here, not to do with anything that Ken Ware says, but on the question of is some exercise within an individual’s personal activity limits of any potential value.]

Interesting as we know nothing about the possibilities of improving muscle tone and flexibility whilst remaining within current overall activity limits and below PEM thresholds.

Given most people tend to be pretty near their overall activity limits, do you feel @unicorn7 you have had to cut out other activities in order to fit this programme into your weekly schedule without too much crashing or triggering PEM?
 
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I have a fitbit since three years and I have been measuring my HRV since May, so I hope to have some data.

I am “mild” and can off course do some activity, but any exercises (yoga, pilates, feldenkrais, rehab etc etc) are always too much and I only get more pain and no benefit.

The first two weeks I was in Norwich and I had to do less overall, because I was figuring the exercises out with the therapist and sometimes we were right and sometimes weren’t. I was just resting the rest of the time.

This week I am doing more overall (6000 steps instead of 4000) and the exercises leave me feeling better than before the exercises and wanting to do more in the day.

Of course, too short of time to actually say anything about the long term, but I myself like little updates better, than some hallelujah story in a few months, so I thought I give you a little update :)
 
@unicorn7 I have just heard about the Ken Ware training from a Dutch guy in another Facebook group I'm in. I am curious about it but ofcourse a little skeptical too so am researching it. Would you mind sharing whether you are still feeling any benefit from the training and how long you have had ME/CFS and what your level of severity is please. Thank you.
 
Reading some other sources,
https://atpscience.com/podcasts/episode-42-chaos-theory-interview-ken-ware/ &

https://www.researchgate.net/profil...rolling-chaos-in-the-human-nervous-system.pdf

It is clear Ken Ware lacks a scientific understanding of proprioception. Note how he never discusses physiological aspects such as the efferent receptors (Golgi tendons, muscle spindles and joint receptors) themselves or correlates in the brain such as the efference copy and the role of the supplementary motor areas.

Which is worrisome when he is promoting a physical therapy that is supposed to be based on correcting errors in proprioception. He also has very strange ideas about motor neuron disease.
 
I very much dislike medical practitioners who think they should sue patients simply because they dared to tell the truth - namely that big promises were made, tens of thousands of dollars of money was spent with no benefit.

https://www.goldcoastbulletin.com.a...k=07ac5d79372684e85d753cc86a46074b-1647601009

Ken Ware thinks he can cure quadriplegia/paraplegia with his therapy, without ever actually demonstrating this in a randomised clinical trial.
 
Snow Leopard said:
Ken Ware thinks he can cure quadriplegia/paraplegia with his therapy, without ever actually demonstrating this in a randomised clinical trial.
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He's doing it wrong, what he needs is a church and a swinging jacket. Lots of people have been cured by Hinn's swinging jacket. At least as convincingly as any other type of psychosocial therapy. The money is way better, too. Like, private jet level of money. It's not as if it makes much difference whether the scam is for thousands or millions.

Edit: wrong Benny.
 
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JemPD said:
he of the swinging jacket... I think that's Benny Hinn isnt it? lol Benny Hill was a comedian. I dont find Hinn's shenanigans at all amusing!
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Aw crap. Yup! Although the classic Benny Hill song on footage of a swinging jacket with people throwing themselves to the floor would be hilarious.
 
Hawki77 said:
@unicorn7 I have just heard about the Ken Ware training from a Dutch guy in another Facebook group I'm in. I am curious about it but ofcourse a little skeptical too so am researching it. Would you mind sharing whether you are still feeling any benefit from the training and how long you have had ME/CFS and what your level of severity is please. Thank you.
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Come join in the facebook group if you want to read what it does, it’s a nice group. It’s maybe not something for a scientific forum, as people point out.

I went from moderate to mild from other therapies, so it was easier for me to start this. I am definitely feeling like this is a piece of the puzzle for me, as I had no idea how I could ever get back into anything physical again and these exercises are so well suited for ME, that it possible to do them. I’m feeling great at the moment, best weeks in about 6 years. Could be other stuff off course, but I’m definitely happy that I went to Norwich.
 
@unicorn7 thanks for replying. I am in the Ken Ware UK Facebook group but there doesn't seem to be much information on there about the theory of how it works. Could you explain how they teach you to do exercises differently to normal that has enabled you to do them without PEM? What makes me feel a bit suspicious is that it seems a bit vague and secretive which reminds me of the Lightning Process and that didn't help me at all and I don't want to pour more money down the drain as I'm sure you can understand. I've been ill for 10 years and I have mild fatigue anyway most of the time and can do small walks most days but feel rubbish when I'm doing it. I get PEM if I try and do anything more like gentle yoga, table tennis, walking too far. My neurological and gut symptoms are the most debilitating for me. Thank you
 
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