Re: CMT treated in China?

[Guest guest]

Could we trust in this?

[Guest guest]

I would be more interested if the video actually showed Pot receiving the stem

cells. All of the physical therapy he was doing is standard stuff at my PT

center here. (with the exception of water PT) I also searched Pub Med and a few

other databases and found no published research on this. I also search for Pot.

Pot seems to have very little peroneal muscle atrophy, and apparently no problem

with stairs (notice he didn't use the handrails, as PTs here would suggest)

I'll keep an open mind, but I personally won't be hopping the next flight to

China anytime soon. This was only one man and his CMT. If the 'treatment' works

for CMT, I'd look for larger populations to treat and then read the results. I'd

also like to know what Drs Shy, Zuchner, Bird, Vance, Chance, Lupski, ,

Suter, Sung-Wook Jang, Nave, Chan, Svaren et al have to say about this.

Gretchen

[Guest guest]

I sent an email to who was in the video. The clinic in China gave me his

email address. He is now in the Netherland.

I have not got his response. To avoid be annoying, I only emailed him once.

Might he be in 's email list?

Please take care

Caroline

On Tue, Mar 23, 2010 at 2:31 AM, gfijig <gfijig@...> wrote:

>

>

> I would be more interested if the video actually showed Pot receiving the

> stem cells. All of the physical therapy he was doing is standard stuff at my

> PT center here. (with the exception of water PT) I also searched Pub Med and

> a few other databases and found no published research on this. I also search

> for Pot. Pot seems to have very little peroneal muscle atrophy, and

> apparently no problem with stairs (notice he didn't use the handrails, as

> PTs here would suggest)

>

> I'll keep an open mind, but I personally won't be hopping the next flight

> to China anytime soon. This was only one man and his CMT. If the 'treatment'

> works for CMT, I'd look for larger populations to treat and then read the

> results. I'd also like to know what Drs Shy, Zuchner, Bird, Vance, Chance,

> Lupski, , Suter, Sung-Wook Jang, Nave, Chan, Svaren et al have to say

> about this.

>

> Gretchen

>

>

>

[Guest guest]

Hi Gretchen,

I agree! Never trust any treatment where they refer to single patient

testimonies! The patients can recover because of other reasons than the

therapy.

1. They might not have any disease at all - fraud.

2. Placebo

3. Drugs given that are not reported but that can be harmful.

4. I am sure there are more reasons...

When there is a double-blind randomized clinical study available

in PubMed showing the benefit of this treatment - then it  is time to hop the

plane to China.

Beata

________________________________

From: gfijig <gfijig@...>

Sent: Mon, March 22, 2010 7:31:59 PM

Subject: Re: CMT treated in China?

 

I would be more interested if the video actually showed Pot receiving the stem

cells. All of the physical therapy he was doing is standard stuff at my PT

center here. (with the exception of water PT) I also searched Pub Med and a few

other databases and found no published research on this. I also search for Pot.

Pot seems to have very little peroneal muscle atrophy, and apparently no problem

with stairs (notice he didn't use the handrails, as PTs here would suggest)

I'll keep an open mind, but I personally won't be hopping the next flight to

China anytime soon. This was only one man and his CMT. If the 'treatment' works

for CMT, I'd look for larger populations to treat and then read the results. I'd

also like to know what Drs Shy, Zuchner, Bird, Vance, Chance, Lupski, ,

Suter, Sung-Wook Jang, Nave, Chan, Svaren et al have to say about this.

Gretchen

[Guest guest]

Hi Caroline,

Of all the " emails " in , none are from the Netherlands. Or are from

China. Although it is possible he is part of under a different name and

ID. Let's hope that if is here, he will share his experience with

us.

Gretchen