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Has anyone heard about Ken Ware?

Discussion in 'Alternative Therapies' started by unicorn7, Feb 26, 2021.

  1. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Does anyone here know Ken Ware? Apparently he’s pretty well known for his rehabilitation work with severe spinal cord injury patients.

    5 me/cfs patients (moderate/severe with pots) from the Netherlands have gone to Australia to be treated by this guy and four out five have made an amazing recovery, the fifth is better than she was.
    I have been reading up on this guy, the language seems to be the standard mind-body stuff, but the treatment definitely does not seem to be lightning process crazy nonsense. The people that were rehabilitated all had horrible PEM before, but his exercises did not give them PEM.

    A friend of mine is going next year. His waiting list is around a year or two now.

    Anyone heard of this guy?
     
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  2. Wonko

    Wonko Senior Member (Voting Rights)

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  3. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    What could go wrong?
     
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  4. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I know, I know. I normally can’t read about this stuff at all without vomiting;):laugh:

    The only reason why I kept reading, is because my friend knows one of these people personally. They live in her town and they were diagnosed with me/cfs and OI by a proper dutch me/cfs doctor (with table tilt test).

    Second, I think treating spinal cord injuries is a bit more objective than treating pain. If you are getting people out of wheelchairs, I am a bit more inclined to listen to what you have to say, than with, say, a bit more subjective illnesses.
     
  5. Trish

    Trish Moderator Staff Member

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    I had a look at the webite:
    'Ken Ware's Neurophysics Therapy Institute'
    https://www.neurophysicstherapy.global/who-we-are/

    From a quick glance the treatment seems to involve postural retraining and gentle resistance exercises using gym equipment. Although it's not aerobic exercise, they seem to run sessions lasting an hour or more, so not easy.

    It looks like a guy who was into bodybuilding and claimed he discovered a new way to health using the body in different ways or something.

    A one man band based on his own ideas that he's developed into a whole training program and business. He runs his own course to train people as practitioners.

    They have published research papers and presented at conferences:
    https://www.neurophysicstherapy.global/research/
     
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  6. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    I recall seeing him on a few tabloid TV shows in Australia (eg, 60 Minutes).

    To be polite, let's just say that the stories well and truly set off my "too good to be true" alarm bells.
     
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  7. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    There are a few people in the Netherland waiting for this rehabilitation, but in the mean time trying some things that seem a bit similar, like feldenkrais and neuromovement. One girl reported a nice effect on her severe OI, sitting up for a few hours instead of needing to lie down after a few minutes. In no way a cure of course, but still might help soms people.

    I used to feldenkrais 15 years ago and I always liked it, so I’ve started to incorporate it again slowly.

    I saw they incorporate “bouncing” in slings in the rehabilitation. That sparked my interest as I read an article that NASA found out that bouncing was superior than other exercise for OI (for astronauts coming back).
     
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  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    My OI is relatively mild.

    I have a Pilates machine (called a reformer), with an attachable trampoline thing at the end.

    So, you are lying reclined and with the head supported and, I used minimum strength resistance, you push away with your feet and the band then pulls you back down towards the trampoline bit, then you bounce away again.

    Great fun while you're doing it. Did me absolutely no favours at all. My body does not like being bounced no matter how gently.

    The problem for me isn't the resistance training per se. It's the repetitions. If you're the type who gets really vicious muscle pain that may not become apparent for up to 3 days & isn't eased by gentle movement - in fact any movement makes it worse- I would urge caution.
     
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  9. Tia

    Tia Senior Member (Voting Rights)

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    Seen this so many times and it's never ended well, definitely a red flag for me based on my experiences. Could be the exception to the rule but I personally won't invest any time or energy in investigating.
     
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  10. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Well, don’t be worried, I won’t be rushing of to Australia soon:laugh::laugh:

    If it turns out to be genuine, we will see.
     
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  11. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    No-one will! ;)

    To explain, Australia's borders have been closed to non-citizens during the pandemic. Only Australian citizens are able to enter the country at the moment after undergoing a 14 day quarantine.


    ETA: I just had a quick in a local ME/CFS group for mentions of Ken Ware. The only time his name came up was after a patient from the Netherlands asked about his program. (I wonder why he is so popular in the Netherlands when most Australians have never heard of him?)

    A representative from Emerge (one of the local patient groups) had recently looked into his program after a question from a member and pointed out that he has no medical qualifications and what little research he has done is largely published in predatory journals. He also sells training to become a practitioner of his program (much like the Lightning Process) for A$13,000-15,000.
     
    Last edited: Feb 28, 2021
  12. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I don’t know why that first person from the netherlands went to australia, but the rest went because she is now recovered and working again.

    He doesn’t advertise as an me/cfs program at all.
    From what I’ve heard from the people that went there, it doesn’t seem like a lightning proces scam thing. There are a lot of people setting up their own rehabilitation training from a sport background and a lot of people start training their own people as well. I don’t think that makes it a scam perse.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The blurb on his website makes it pretty clear it is a scam. It doesn't make any medical sense.
     
  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Someone blessed with good health ---you too could be like me --- if you pay for X. Y, Z---distasteful!
     
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  15. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I agree that the website is pure marketing, but I have never found that there is much correlation between what people say (or think) they do and what people practically do. I have had an absolute abysmal rehabilitation in an academic centre and I have had wonderfull experiences (pre-me/cfs) with a trainingssystem that was marketed like this. It is just not that black and white.

    For example, I have followed Wim Hof (the iceman) a little bit. What he practically does, is confirmed in experiments to have an effect, but I’m not sure that the explanations that he gives for that effect, are true.
    He is also now marketing his system and training people to be trainers. That is just how it works.
     
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I'm sorry to hear about your rehab experience @unicorn7. The whole rehab industry, because it sure ain't medicine the way some of it is done, needs a rethink, proper monitoring and controls in place to make sure they don't hurt people.

    Marketing of an exercise system or philosophy to people who are fit and well is fine. They can try it and, as long as they don't injure themselves, decide whether it suits them or not.

    Exercise systems & philosophies targeted at sick people are very different things. It should be as clear as black and white because any such intervention should be scientifically proved to be safe as well as effective.

    GET essentially comes across to me as something Wessely and his mates discussed over a nice case or two of expensive wine and drew up notes on the back of their wine list. Looking at how healthy people react to exercise, GET shouldn't have done much harm, really. Yet it does.

    Blind faith & bias in a product, procedure or exercise regime leads to ME patients being harmed.

    In addition if we expect psychological interventions to be held to the same research standards as drug interventions then exercise must be held to those standards too. Along with a reporting system for adverse and thorough, honest outcome monitoring.
     
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  17. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I completely agree, Invisible woman. That is the ideal way and we should definitely strive for that.

    I do find that for myself, personally, I am a bit more inclined to try some stuff, if I think it will benefit me. I am not going to wait until I am 60 to be well again. I think I now know my boundaries well enough to know when something is harmful for me.

    Maybe I should make a clear distinction when I’m interested in something purely for personal use, that is a whole world away from recommending something for the whole me/cfs community.

    On some topics, science takes a leading or innovative role, but on other topics, science takes a following role of confirming certain things. Rehab is literally in baby shoes still, probably because scientist are still working with nonsensical ideas like GET.
     
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  18. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    We all make our own choices of what to try & what not to try & take responsibility for those choices @unicorn7. I respect that.

    I also respect that you feel you know your own boundaries & respect you know yourself better than anyone else can.

    That said, as a fellow patient chatting among others, it would be remiss of me not to come forward and say that at one point I felt the same way. In hindsight I believe I was wrong and I dropped to a more severe level of illness. I say this to give others more information when making their choices.

    Let me give an example - I have experienced both immediate PEM and delayed PEM. When I was moderately ill the immediate PEM was more obvious and so I learned to stay below the threshold for that.

    Then I eventually noticed that PEM could take up to 3 days to appear and so I stayed within the limits of that. Doing less than I thought would trigger PEM and if I got to Day 4 without PEM occurring, do it again in the belief I might at least maintain some fitness and function if not actually increase fitness and raise my PEM threshold.

    That all seems quite sensible and safe but here's the problem - in using knowledge of how exercise works in a healthy person I was making an assumption which is quite possibly wrong. I was assuming PEM only occurs when I have symptoms of PEM.

    What if that's not the case? What if I was actually crossing some metabolic or other threshold that was causing damage long before symptoms appeared?

    I know that others who were as severe and didn't exercise like I did (& we're talking very gentle stuff here) aren't any worse whereas I am.

    Here's the thing, GET sounds reasonable and at least harmless. As long as you don't have ME/CFS or another condition that is exacerbated by exercise. If GET can harm, how do you know something else won't?

    If GET is nonsensical then in what way is some other exercise regime or intervention not equally nonsensical?

    I think the answer is we don't know. What we do know is that for at least some people there is a risk of possibly permanent harm. If an individual is happy to take that risk that is their choice but they should be aware of the risk they face.
     
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