Does New Parkinson's Research Help MSA?

[Guest guest]

Hi all,

The attached news story appeared in the UK press last

week. Does anyone know if it has implications for MSA

sufferers?

Stay cheerful

Mark

http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

__________________________________________________

[Guest guest]

That's very interesting Mark. Sounds like another good line of research

that has potential to help all neurodegenerative disorders. These sorts of

experimental therapies don't tend to become widely available for many years

but you might want to contact those researchers and see if they'd consider

trying it in an MSA patient. Let us know if you find out more.

Regards,

Pam

Does New Parkinson's Research Help MSA?

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

[Guest guest]

That's very interesting Mark. Sounds like another good line of research

that has potential to help all neurodegenerative disorders. These sorts of

experimental therapies don't tend to become widely available for many years

but you might want to contact those researchers and see if they'd consider

trying it in an MSA patient. Let us know if you find out more.

Regards,

Pam

Does New Parkinson's Research Help MSA?

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

[Guest guest]

That's very interesting Mark. Sounds like another good line of research

that has potential to help all neurodegenerative disorders. These sorts of

experimental therapies don't tend to become widely available for many years

but you might want to contact those researchers and see if they'd consider

trying it in an MSA patient. Let us know if you find out more.

Regards,

Pam

Does New Parkinson's Research Help MSA?

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

[Guest guest]

Mark,

All research that shows promise is hopeful and good for the long term.

However, five patients is not a good sampling. In addition, this is a news

story and news articles tend to pick up only dramatic results not mundane (to

the reporter) details. This does NOT seem to be a peer reviewed scientific

study or paper, just a few patients and their doctor. There have been

several " studies " lately which the researchers are releasing unproven " data "

to the public. Including is one about adult stem cells curing a PD patients,

releasing this type of data with no scientific backup evidence is risky at

best.

Remember that 20 years ago China released data that showed fetal tissue

transplants cured PD patients, we had to wait for many years before NIH could

run supervised studies that showed it only delayed things for a couple of

years at best. The research was still GOOD in that it lead to the discovery

of stem cells. Now we are prevented by a Presidential signature again from

finding out how good this hope is.

Good science is careful, methodical work. All peer reviews should be

followed, or money will be wasted and there is not enough money to waste. As

an earlier article today (msg 28031) (2:10 PM EDT) from Pam points out, while

NIH increased it's budget by 14% this year, President Bush has directed the

majority of that money go into Cancer, AIDS and Bio-terrorism research so

NINDS is really just holding it's own (and gets only a small portion of the

NIH pot).

Until patients of brain disorders yell foul, the President and Congress will

continue to shortchange brain research. Basically my Senator (R-VA)

has said all his calls are for a complete ban on cloning, when I pointed out

that I and my daughter and five of her friends had called to support the

Feinstein Bill over the Brownback Bill he just said well most calls. Arlen

Spector (R-PA) and other Republicans do support the Feinsein Bill over the

Brownback Bill - so this is not a Party issue. In fact Bob Dole is

supporting it from what I understand. I will know more on that soon.

Our best bet for a cure is steady methodical science. Each step building on

the last results. That is what has produced cures in the past. Blindly

pouring money into false hopes is not science, but politics - and wastes

time, energy and money.

Take care, Bill Werre

-------------------------------------------------

mark butler wrote:

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

>

> __________________________________________________

>

[Guest guest]

Mark,

All research that shows promise is hopeful and good for the long term.

However, five patients is not a good sampling. In addition, this is a news

story and news articles tend to pick up only dramatic results not mundane (to

the reporter) details. This does NOT seem to be a peer reviewed scientific

study or paper, just a few patients and their doctor. There have been

several " studies " lately which the researchers are releasing unproven " data "

to the public. Including is one about adult stem cells curing a PD patients,

releasing this type of data with no scientific backup evidence is risky at

best.

Remember that 20 years ago China released data that showed fetal tissue

transplants cured PD patients, we had to wait for many years before NIH could

run supervised studies that showed it only delayed things for a couple of

years at best. The research was still GOOD in that it lead to the discovery

of stem cells. Now we are prevented by a Presidential signature again from

finding out how good this hope is.

Good science is careful, methodical work. All peer reviews should be

followed, or money will be wasted and there is not enough money to waste. As

an earlier article today (msg 28031) (2:10 PM EDT) from Pam points out, while

NIH increased it's budget by 14% this year, President Bush has directed the

majority of that money go into Cancer, AIDS and Bio-terrorism research so

NINDS is really just holding it's own (and gets only a small portion of the

NIH pot).

Until patients of brain disorders yell foul, the President and Congress will

continue to shortchange brain research. Basically my Senator (R-VA)

has said all his calls are for a complete ban on cloning, when I pointed out

that I and my daughter and five of her friends had called to support the

Feinstein Bill over the Brownback Bill he just said well most calls. Arlen

Spector (R-PA) and other Republicans do support the Feinsein Bill over the

Brownback Bill - so this is not a Party issue. In fact Bob Dole is

supporting it from what I understand. I will know more on that soon.

Our best bet for a cure is steady methodical science. Each step building on

the last results. That is what has produced cures in the past. Blindly

pouring money into false hopes is not science, but politics - and wastes

time, energy and money.

Take care, Bill Werre

-------------------------------------------------

mark butler wrote:

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

>

> __________________________________________________

>

[Guest guest]

Mark,

All research that shows promise is hopeful and good for the long term.

However, five patients is not a good sampling. In addition, this is a news

story and news articles tend to pick up only dramatic results not mundane (to

the reporter) details. This does NOT seem to be a peer reviewed scientific

study or paper, just a few patients and their doctor. There have been

several " studies " lately which the researchers are releasing unproven " data "

to the public. Including is one about adult stem cells curing a PD patients,

releasing this type of data with no scientific backup evidence is risky at

best.

Remember that 20 years ago China released data that showed fetal tissue

transplants cured PD patients, we had to wait for many years before NIH could

run supervised studies that showed it only delayed things for a couple of

years at best. The research was still GOOD in that it lead to the discovery

of stem cells. Now we are prevented by a Presidential signature again from

finding out how good this hope is.

Good science is careful, methodical work. All peer reviews should be

followed, or money will be wasted and there is not enough money to waste. As

an earlier article today (msg 28031) (2:10 PM EDT) from Pam points out, while

NIH increased it's budget by 14% this year, President Bush has directed the

majority of that money go into Cancer, AIDS and Bio-terrorism research so

NINDS is really just holding it's own (and gets only a small portion of the

NIH pot).

Until patients of brain disorders yell foul, the President and Congress will

continue to shortchange brain research. Basically my Senator (R-VA)

has said all his calls are for a complete ban on cloning, when I pointed out

that I and my daughter and five of her friends had called to support the

Feinstein Bill over the Brownback Bill he just said well most calls. Arlen

Spector (R-PA) and other Republicans do support the Feinsein Bill over the

Brownback Bill - so this is not a Party issue. In fact Bob Dole is

supporting it from what I understand. I will know more on that soon.

Our best bet for a cure is steady methodical science. Each step building on

the last results. That is what has produced cures in the past. Blindly

pouring money into false hopes is not science, but politics - and wastes

time, energy and money.

Take care, Bill Werre

-------------------------------------------------

mark butler wrote:

> Hi all,

>

> The attached news story appeared in the UK press last

> week. Does anyone know if it has implications for MSA

> sufferers?

>

> Stay cheerful

> Mark

>

> http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

>

> __________________________________________________

>

[Guest guest]

Bill

I take it this is a subject about which you feel strongly. It was

not my intention to display this as a possible miracle cure. The

report clearly states that these findings are early and inconclusive,

with several years of further study required. My only query was

whether it has implications for anyone besides Parkinsons sufferers.

Mark

>

> > Hi all,

> >

> > The attached news story appeared in the UK press last

> > week. Does anyone know if it has implications for MSA

> > sufferers?

> >

> > Stay cheerful

> > Mark

> >

> >

http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

> >

> > __________________________________________________

> >

[Guest guest]

Bill

I take it this is a subject about which you feel strongly. It was

not my intention to display this as a possible miracle cure. The

report clearly states that these findings are early and inconclusive,

with several years of further study required. My only query was

whether it has implications for anyone besides Parkinsons sufferers.

Mark

>

> > Hi all,

> >

> > The attached news story appeared in the UK press last

> > week. Does anyone know if it has implications for MSA

> > sufferers?

> >

> > Stay cheerful

> > Mark

> >

> >

http://news.bbc.co.uk/hi/english/sci/tech/newsid_1935000/1935593.stm

> >

> > __________________________________________________

> >

[Guest guest]

Mark,

Any scientific research that helps PD patients MAY help MSA patients.

I am just pointing out that this is a "news" article and NOT a scientific

paper, so I would not count it as something like stem cell research which

is science. There are scientists who want research money and will

put out results that have not been checked in order to get research funds.

This type of news article can deflect funds from people who are doing good

research. Stem cell research HAS cured mice of Parkinson's like symptoms

AND grown glial cells whose death has been linked to MSA. Therefore

stem cell research has proven that it deserves a chance at human tests.

But without preliminary animal tests, it is not safe to proceed to human

tests. That is why I am upset over this type of "research" someone

was killed last year because the researcher put the cart before the horse

and there were all kinds on cries to stop research at the whole university

for the error of one man.

I worked in research and over 95% of the researchers I worked with followed

the rules and did good research. But there are always some who try

to grab the glory and get the funding by skirting (or even ignoring) the

rules. We need to support the ones who work by the rules and stop

listening to the "quick fix" people. Many years ago a bridge needed

repairs and someone came up with a "quick fix" - but two years later, the

bridge collapsed and killed several people. You can NOT cut corners

and still have good science.

There are no absolutes in humans.

Take care, Bill Werre

--------------------------------

m_p_butler wrote:

Bill

I take it this is a subject about which you feel strongly. It

was

not my intention to display this as a possible miracle cure.

The

report clearly states that these findings are early and inconclusive,

with several years of further study required. My only query was

whether it has implications for anyone besides Parkinsons sufferers.

Mark

[Guest guest]

Mark,

Any scientific research that helps PD patients MAY help MSA patients.

I am just pointing out that this is a "news" article and NOT a scientific

paper, so I would not count it as something like stem cell research which

is science. There are scientists who want research money and will

put out results that have not been checked in order to get research funds.

This type of news article can deflect funds from people who are doing good

research. Stem cell research HAS cured mice of Parkinson's like symptoms

AND grown glial cells whose death has been linked to MSA. Therefore

stem cell research has proven that it deserves a chance at human tests.

But without preliminary animal tests, it is not safe to proceed to human

tests. That is why I am upset over this type of "research" someone

was killed last year because the researcher put the cart before the horse

and there were all kinds on cries to stop research at the whole university

for the error of one man.

I worked in research and over 95% of the researchers I worked with followed

the rules and did good research. But there are always some who try

to grab the glory and get the funding by skirting (or even ignoring) the

rules. We need to support the ones who work by the rules and stop

listening to the "quick fix" people. Many years ago a bridge needed

repairs and someone came up with a "quick fix" - but two years later, the

bridge collapsed and killed several people. You can NOT cut corners

and still have good science.

There are no absolutes in humans.

Take care, Bill Werre

--------------------------------

m_p_butler wrote:

Bill

I take it this is a subject about which you feel strongly. It

was

not my intention to display this as a possible miracle cure.

The

report clearly states that these findings are early and inconclusive,

with several years of further study required. My only query was

whether it has implications for anyone besides Parkinsons sufferers.

Mark

[Guest guest]

Mark,

Any scientific research that helps PD patients MAY help MSA patients.

I am just pointing out that this is a "news" article and NOT a scientific

paper, so I would not count it as something like stem cell research which

is science. There are scientists who want research money and will

put out results that have not been checked in order to get research funds.

This type of news article can deflect funds from people who are doing good

research. Stem cell research HAS cured mice of Parkinson's like symptoms

AND grown glial cells whose death has been linked to MSA. Therefore

stem cell research has proven that it deserves a chance at human tests.

But without preliminary animal tests, it is not safe to proceed to human

tests. That is why I am upset over this type of "research" someone

was killed last year because the researcher put the cart before the horse

and there were all kinds on cries to stop research at the whole university

for the error of one man.

I worked in research and over 95% of the researchers I worked with followed

the rules and did good research. But there are always some who try

to grab the glory and get the funding by skirting (or even ignoring) the

rules. We need to support the ones who work by the rules and stop

listening to the "quick fix" people. Many years ago a bridge needed

repairs and someone came up with a "quick fix" - but two years later, the

bridge collapsed and killed several people. You can NOT cut corners

and still have good science.

There are no absolutes in humans.

Take care, Bill Werre

--------------------------------

m_p_butler wrote:

Bill

I take it this is a subject about which you feel strongly. It

was

not my intention to display this as a possible miracle cure.

The

report clearly states that these findings are early and inconclusive,

with several years of further study required. My only query was

whether it has implications for anyone besides Parkinsons sufferers.

Mark