Spinal Cord Injury Network USA (SCINetUSA)

[Jim]

I don't think you guys read the paper and understand the results of the trial. The attached graph shows the changes that occurred in the 20 patients that participated in the Kunming/6-6-6 Trial.

Left Column, go down to Age (age at time of trial), next is Years (years after injury), HLA (match of umbilical cord blood injected), AIS (ASIA Score before and after), KLS (Kunming Locomoter stages), WISCI (Walking Index of Spinal Cord Injury), Motor (Motor Scores), Touch, PIN (pinprick), MAS (Modified Ashworth Scale for Spasticity, VAS (Visual Analog Scale (level of pain), SCIM (Spinal Cord Independence Measure), SAE (Severe Adverse Events (Codes listed on right of graph).

Look at AIS (ASIA Score) row- injured 6 years, improved from A to B. Injured 20 years, improved from A to C. Injured 14 years, improved from A to C. Injured 3 years, improved A to B.

The real story is in the improvements of the Spinal Cord Independence Measures (SCIM). Every patient except one improved pretty dramatically here, and this is where it counts. This therapy gave independence back, the ability to do things on their own. The paper is more specific and you should read the details.

The Phase IIb Trial has been refined and will likely be more effective. Of course 6-6-6 is difficult but we will find more efficient ways. We aren't going to discover a near cure in the beginning trials but we have to start somewhere. Regaining independence is where we start.

[Mitchitsu]

There was a person who got into the study who should not have. He had an incomplete injury to begin with. I do not know where he was on the Asia scale. B/C.

Being fairly incomplete myself with the ability to ambulate to a certain degree, I would love to know more about how this person progressed.

Unfortunately information on that subject does not seem to be released.

[Jim]

Wise gets updates by word of mouth from the dr's but until the patients are brought back and examined, I won't post anything.

[Mitchitsu]

Totally understood. But it was so many years ago at this point I can't imagine more information on the person coming out from follow-ups.

We did speak to Dr Wise at one of the open houses about that patient. All we were told was he was helped a lot from the study and saw even more gains. But nothing specific.

[lunasicc42]

I realize this trial isn't about just ME but from my perspective, my most concerning thing would be if arm function actually returned ...because what is walking if you have no arm function? Thats just too weird to imagine

[LethalSpoon]

I realize this trial isn't about just ME but from my perspective, my most concerning thing would be if arm function actually returned ...because what is walking if you have no arm function? Thats just too weird to imagine

Yeah, independence relies on upper trunk and hands. Walking by itself is useless. And this is why I cant understand all the focus around walking. You need more people, more complex and expensive equipment, and bigger facilities and budget. Work with arms and hands is a lot easier, cheaper, and a lot more important.

[mrTerell]

Good day everyone,
any updates from the last open house?
we need some good news !!

[Jim]

Theres a lot of new info, also an update on lumbosacral research (1:39:00).
https://rutgers.zoom.us/rec/share/jE...=1612568588000

[LethalSpoon]

This is what I understood after watching the video, correct me if Im wrong please:
- After therapy, there are fibers crossing the injury gap, but they dont have a clue about what kind of fibers. Dr. Young said literally "Is hard to imagine what else they could be, but we think this are regenerating fibers"
- This therapy appears to only be able to activate the CPGs of spinal cord and nothing more. This is why there are no real improvements outside of that, with no significant sensory or function gained. You can walk, but if you lied in bed you cant move anything by yourself, so if you are expecting some upper body action (pecs, triceps, wrist, fingers,...) or feeling again the world with your hands this is not for you.

[Mitchitsu]

This is what I understood after watching the video, correct me if Im wrong please:
- After therapy, there are fibers crossing the injury gap, but they dont have a clue about what kind of fibers. Dr. Young said literally "Is hard to imagine what else they could be, but we think this are regenerating fibers"
- This therapy appears to only be able to activate the CPGs of spinal cord and nothing more. This is why there are no real improvements outside of that, with no significant sensory or function gained. You can walk, but if you lied in bed you cant move anything by yourself, so if you are expecting some upper body action (pecs, triceps, wrist, fingers,...) or feeling again the world with your hands this is not for you.

It's definitely a little contradictory at times. Because although I agree he is mostly talking about cpg, I do believe he mentioned subjects getting sensation back including pinprick. But I would have to go back and find it.

Don't forget he's also saying subjects were able to get out of bed on their own, get to their wheelchairs on their own, and get from the wheelchair to the toilet on their own. Just doing that is a massive improvement on Independence and functionality.

Another thing to keep in mind... It seems like significant resources are being used to generate walking patterns right? 6 hours 6 days etc etc. it stands to reason very little resources and therapy are being used to develop other muscle groups. Lying down in bed and being able to move is an entirely different thing with the way gravity is bearing down on your muscles.

Perhaps if extreme exercise was dedicated to that type of movement against gravity with those newly grown fibers, improvements would be made volitionally?

Also he is talking about people that have been motor complete for many many years. Where I'm assuming there is significant atrophy. But still people going from an Asia scale of A to C. That is incredibly significant.

It's funny because I keep going back and forth with hope in this study and then feelings such as you are having in that it's not enough.

I really wish they would open these trials up to incomplete injuries first. The first reason being I am one so I'm being selfish but more so because I feel like the results would be significantly better on people who already have connections, feelings, and a certain ability to move below the injury site.
If they can significantly improve incomplete injuries, which I would think something like this can certainly do with great success... That would give them all the incentive and hopefully funding to really push for complete injuries because of the potential shown. Instead of going after the hardest targets first and when not getting the best results having the studies killed. It's like trying to send a man to Mars before putting a man on the moon.

Just my thoughts..

[Imight]

There was a person who got into the study who should not have. He had an incomplete injury to begin with. I do not know where he was on the Asia scale. B/C.

Being fairly incomplete myself with the ability to ambulate to a certain degree, I would love to know more about how this person progressed.

Unfortunately information on that subject does not seem to be released.

are you talking about me? i wasnt in the study. i just took it upon myself to visit the facility in kunming and work along side.


anyways. ive been saying for years that incompletes should be focused on a little more, as i think the hidden puzzle is there, and im not just saying that cause im incomplete. but something is up. our cord is damaged, but we have movement, why? what are the components allowing it and why? these fibers can we zero in on them? but no one listens.

[Jim]

This is what I understood after watching the video, correct me if Im wrong please:
- After therapy, there are fibers crossing the injury gap, but they don't have a clue about what kind of fibers. Dr. Young said literally "Is hard to imagine what else they could be, but we think this are regenerating fibers"
- This therapy appears to only be able to activate the CPGs of spinal cord and nothing more. This is why there are no real improvements outside of that, with no significant sensory or function gained. You can walk, but if you lied in bed you cant move anything by yourself, so if you are expecting some upper body action (pecs, triceps, wrist, fingers,...) or feeling again the world with your hands this is not for you.

The patients also regained trunk muscles due to the intensive walking. Muscles will not magically start working, every muscle must be exercised. In the upcoming trial, quads will be exercising arms, hands and fingers. We hope that this will return function.

Mitchitsu, Wise wanted to include incomplete injuries but the FDA said no. Hopefully incompletes will be included in the phase III.

Imight, Wise has said we only need a small % of our axons in order to maintain function. Those of us with incomplete injuries have axons that survived and are still functioning. I'm C5/6, have feeling and movement all the way down to my toes, but can't walk. My fingers work a little which is huge, also bladder, bowel, and sexual function.

I don't know of a study that looked at complete injuries and surviving axons.

[Mitchitsu]

are you talking about me? i wasnt in the study. i just took it upon myself to visit the facility in kunming and work along side.

Nope. Supposedly someone who was incomplete actually made it into the study. I believe even had the surgery. But unfortunately information is very limited.

[lunasicc42]

Wise gets updates by word of mouth from the dr's but until the patients are brought back and examined, I won't post anything.

when is this happening Jim?

[Imight]

The patients also regained trunk muscles due to the intensive walking. Muscles will not magically start working, every muscle must be exercised. In the upcoming trial, quads will be exercising arms, hands and fingers. We hope that this will return function.

Mitchitsu, Wise wanted to include incomplete injuries but the FDA said no. Hopefully incompletes will be included in the phase III.

Imight, Wise has said we only need a small % of our axons in order to maintain function. Those of us with incomplete injuries have axons that survived and are still functioning. I'm C5/6, have feeling and movement all the way down to my toes, but can't walk. My fingers work a little which is huge, also bladder, bowel, and sexual function.

I don't know of a study that looked at complete injuries and surviving axons.

niiiice. i didnt know you were incomplete jim.

and yea i heard about the fda. which i think is fucked up.

there is a study for incompletes in swiss. they're using electrical stimulation if memory serves me correct. i saw one guy walking with a cane. i actually contacted them, and they were willing to take me but they asked for a lot of reports and scans that i just dont have. id have had to go back to the states to get all that information, so i opt'd out. plus, im just giving up now. i dont wanna live in Switzerland for 8 months lol.