Re: stem cell research etc.

[Guest guest]

wrote:

> As Notan has commented, it may not do any good to use stem cell

> therapy to replace the missing neurons if something in the serum

> of achalasia patients is going to kill those neurons anyway.

>

I found an interesting article yesterday and thought about posting a

link to it then, but it is a mixed bag of good and bad ideas and not

really a source of solid medical information. It is about people going

to China to receive unproven treatments that are not done elsewhere.

Some of these are claimed to be stem cell treatments and some of them

actually may be stem cell treatments but this is the type of situation

that quacks and charlatans deal in and the practices are not regulated

so you have no way to know what is actually used. Some of the people

return claiming improvement in their conditions. Part of the article is

about why people would make those claims even though when tested they

often don't show any signs of improvement. (More about that latter.)

Some people do show signs of improvement tested.

They interviewed someone with one of the centers in China about this and

he made an interesting statement: " He said patients with trauma injuries

experience the most dramatic improvements; those with degenerative

diseases such as ALS, also known as Lou Gehrig's disease, tend to

improve initially but then slide back to their former condition within

months. " As I said before, it is hard to put much credit on any

information that comes out of this kind of setting, but what he said is

the kind of thing that many experts expect. Achalasia seems to be one of

those degenerative conditions. So, until they can stop the degenerative

process any regrowth of the nerves may just be attacked like the

original ones were.

Back to the topic of why people say they are better when tests don't

show improvement. One of the reasons given is that there is often a lot

of money that family, friends and communities need to raise to get these

treatments and the patients does not want to feel and have all the

supporters feel that all their sacrifices were wasted. Add to that a

need to cling on to hope and you can see that reports from patients

could be overly positive. If these reports from the patients are the

source of the claims by the centers to back their methods as effective

this is a problem.

Sometimes you will see papers published that look very scientific and

you will find other people pointing to such papers and saying look it

works there is a research paper to back up the claims. This goes beyond

stem cell treatments. I read about another type of treatment, in a

different article not related to achalasia, where skeptics had said that

there was no way it could work and there were about 19 studies that said

it didn't work, but along came one study that said it did. All the

studies were small and this brings up another problem with studies.

Often in research reports you will see numbers listed, such as good

results vs bad results and after the numbers you will see some other

funny looking numbers. Those funny looking numbers are a statistical way

of saying how likely the other number is to be correct. You can also do

these kind of statistical calculations to see how likely a type of study

is to be correct. It turned out that for those twenty studies, because

of their small size and methods, that there was a about a one in twenty

chance that a study would come to the wrong concussions. I would say

there is no evidence that the method in question works because the one

positive study is probably wrong even though the researches may have

done nothing wrong to get those results. However, if you go to sites

promoting that kind of treatment they will backup their claims by saying

that one study proves the method effective. In achalasia research

studies are often small and we need to keep that in mind.

Back to stem cells. Some of you may remember a year or two back there

was a Korean researcher that claimed to have proved something with stem

cells that others had said was impossible. In the end it was determined

that he had faked some the results and his reputation was ruined. It

turns out that he may have actually stumbled upon something just as

unlikely as what he claimed to prove but didn't believe it himself, so

he convinced himself that it was because of what he reported instead of

what was really happening. He couldn't prove it was what he thought it

was so he faked the details in a rush to be the first to show the

result. Had he been more skeptical about his own assumptions and been

more open to the other possibility, (many experts thought both were

impossible), he may have proved something just as remarkable as what he

claimed to prove. I don't know what he did but that is what some are

thinking.

There is a lot of hope, emotion and money invested in stem cells and

that gives me reason to be skeptical and wait for proven methods. I

might think differently if I was about out of time looking for help.

But, for us there are treatments that are very likely to work well.

If you want to see the China article it is here:

http://www.baltimoresun.com/news/nation/bal-te.medical06jan06,0,5951222.story?pa\

ge=1 & track=rss

notan

[Guest guest]

Hi notan…

They are doing studies on and

geneticists say that the DNA could completely replicate itself with the good

DNA so that there isn’t any more of the defective DNA left (not sure how they

do this), so there could possibly be a cure for him in the future and also for

others with mitochondrial disease. Maybe the same would hold true in the case

of stem cell therapy for achalasia and other diseases.

In regards to these other degenerative

diseases, such as ALS and Parkinsons (like achalasia could possibly be one of

???), they are also beginning to classify them as mitochondrial diseases as the

loss in mitochondrial dysfunction in ALS patients is thought to play a role in

neuronal death…. Perhaps in the patients who have had stem cell therapy

but have returned back to their former condition, the DNA hasn’t

completely replicated itself to the point where the DNA can completely

change….but so many different types of dysfunction and it is costly to do

all the tests to figure out what the problem is to begin with. In

’s case, his electron transport chain is dysfunctional between

the 2nd and 3rd chain of transport, but then it seems to

fix itself because the 4th chain is normal again, but this is just

his individual case.

I need to ask my daughter more about the

process of replicating the DNA in order to get rid of the defective

DNA….not sure if this is considered a type of stem cell therapy or not

but it is fascinating.

Sandi in No CA

From: achalasia [mailto:achalasia ] On Behalf Of notan ostrich

Sent: Monday, January 07, 2008

10:24 AM

achalasia

Subject: Re: stem cell

research etc.

wrote:

> As Notan has commented, it may not do any good to use stem cell

> therapy to replace the missing neurons if something in the serum

> of achalasia patients is going to kill those neurons anyway.

>

I found an interesting article yesterday and thought about posting a

link to it then, but it is a mixed bag of good and bad ideas and not

really a source of solid medical information. It is about people going

to China

to receive unproven treatments that are not done elsewhere.

Some of these are claimed to be stem cell treatments and some of them

actually may be stem cell treatments but this is the type of situation

that quacks and charlatans deal in and the practices are not regulated

so you have no way to know what is actually used. Some of the people

return claiming improvement in their conditions. Part of the article is

about why people would make those claims even though when tested they

often don't show any signs of improvement. (More about that latter.)

Some people do show signs of improvement tested.

They interviewed someone with one of the centers in China about this and

he made an interesting statement: " He said patients with trauma injuries

experience the most dramatic improvements; those with degenerative

diseases such as ALS, also known as Lou Gehrig's disease, tend to

improve initially but then slide back to their former condition within

months. " As I said before, it is hard to put much credit on any

information that comes out of this kind of setting, but what he said is

the kind of thing that many experts expect. Achalasia seems to be one of

those degenerative conditions. So, until they can stop the degenerative

process any regrowth of the nerves may just be attacked like the

original ones were.

Back to the topic of why people say they are better when tests don't

show improvement. One of the reasons given is that there is often a lot

of money that family, friends and communities need to raise to get these

treatments and the patients does not want to feel and have all the

supporters feel that all their sacrifices were wasted. Add to that a

need to cling on to hope and you can see that reports from patients

could be overly positive. If these reports from the patients are the

source of the claims by the centers to back their methods as effective

this is a problem.

Sometimes you will see papers published that look very scientific and

you will find other people pointing to such papers and saying look it

works there is a research paper to back up the claims. This goes beyond

stem cell treatments. I read about another type of treatment, in a

different article not related to achalasia, where skeptics had said that

there was no way it could work and there were about 19 studies that said

it didn't work, but along came one study that said it did. All the

studies were small and this brings up another problem with studies.

Often in research reports you will see numbers listed, such as good

results vs bad results and after the numbers you will see some other

funny looking numbers. Those funny looking numbers are a statistical way

of saying how likely the other number is to be correct. You can also do

these kind of statistical calculations to see how likely a type of study

is to be correct. It turned out that for those twenty studies, because

of their small size and methods, that there was a about a one in twenty

chance that a study would come to the wrong concussions. I would say

there is no evidence that the method in question works because the one

positive study is probably wrong even though the researches may have

done nothing wrong to get those results. However, if you go to sites

promoting that kind of treatment they will backup their claims by saying

that one study proves the method effective. In achalasia research

studies are often small and we need to keep that in mind.

Back to stem cells. Some of you may remember a year or two back there

was a Korean researcher that claimed to have proved something with stem

cells that others had said was impossible. In the end it was determined

that he had faked some the results and his reputation was ruined. It

turns out that he may have actually stumbled upon something just as

unlikely as what he claimed to prove but didn't believe it himself, so

he convinced himself that it was because of what he reported instead of

what was really happening. He couldn't prove it was what he thought it

was so he faked the details in a rush to be the first to show the

result. Had he been more skeptical about his own assumptions and been

more open to the other possibility, (many experts thought both were

impossible), he may have proved something just as remarkable as what he

claimed to prove. I don't know what he did but that is what some are

thinking.

There is a lot of hope, emotion and money invested in stem cells and

that gives me reason to be skeptical and wait for proven methods. I

might think differently if I was about out of time looking for help.

But, for us there are treatments that are very likely to work well.

If you want to see the China

article it is here:

http://www.baltimoresun.com/news/nation/bal-te.medical06jan06,0,5951222.story?page=1 & track=rss

notan

[Guest guest]

Hi!

Sandi wrote:

They are

doing studies on and

geneticists say that the DNA could completely replicate itself with the

good

DNA

That may be gene therapy instead of stem cell treatment. They get good

genes into the cells where it is used in place of bad genes. Before

stem cells became so popular gene therapy was the big deal. They are

still researching and developing it but you don't hear as much about it

in the news. When my daughter was competing in science fairs there was

another student from this part of town that had gotten brain cancer

cells to take in a jelly fish gene to make them glow, so you could see

them and know the process was working, and a suicide gene attached to a

motility gene so when the cells began to move, which they only did when

cancerous, they would self destruct. There are some very powerful

things that can be done with gene therapy but it requires knowledge of

what all the genes produce and how they work. They are learning a lot

about this subject now but there is so much to learn.

so that

there isn’t any more of the defective DNA left (not sure how they

do this),

Cells have mechanisms to do some repair of DNA. It may be that they are

finding a way to use that mechanisms to replace the bad genes. I don't

know.

Maybe the

same would hold true in the case

of stem cell therapy for achalasia and other diseases.

Who knows what will be. It seems like more powerful things for treating

DNA problems will come but when is the question.

In

regards to these other degenerative

diseases, such as ALS and Parkinsons (like achalasia could possibly be

one of

???), they are also beginning to classify them as mitochondrial

diseases as the

loss in mitochondrial dysfunction in ALS patients is thought to play a

role in

neuronal death….

Achalasia is considered a degenerative disorder but it is not thought

that the cause is related to ALS or Parkinsons, thought there has been

some interest in such possible connections. As you know there seems to

be some connection to NO in achalasia. The nerves that are damaged

produce NO and the inflammation from the immune system response

releases more NO. Mitochondria can be damaged by too much NO. One of

the possibilities of achalasia is that it isn't caused by a problem

originating in the cells that get damaged but by something attacking

the cells. So even if something like stem cells can create perfectly

good nerve cells they could still be damaged by whatever is attacking

them.

I need to

ask my daughter more about the

process of replicating the DNA in order to get rid of the defective

DNA….not sure if this is considered a type of stem cell therapy or not

but it is fascinating.

It is interesting.

For more about NO and mitochondria see:

Nitric oxide-mediated mitochondrial damage in the brain: mechanisms and

implications for neurodegenerative diseases.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve & db=PubMed & dopt=AbstractPlus & list_uids=9166714

Nitric oxide-induced mitochondrial dysfunction: implications for

neurodegeneration.

http://www.ncbi.nlm.nih.gov/pubmed/12543245?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

or

http://tinyurl.com/23p63s

Inflammatory neurodegeneration mediated by nitric oxide from activated

glia-inhibiting neuronal respiration, causing glutamate release and

excitotoxicity.

http://www.ncbi.nlm.nih.gov/pubmed/11517237?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

or

http://tinyurl.com/ysopxl

notan