STEM CELL TRANSPLANTS may cure MS

[Allyson]

The first SCT for MS in Australia was nearly a year ago - see link - and they are now being done here for ME too


http://www.dailytelegraph.com.au/ar...rners-magic-cure/story-e6freuzr-1226004742545


any feedback and thoughts appreciated; still experimental at this stage for ME though thought to help some

they extract the cells now from you own abdominal fat by liposuction and then re- infuse the filtered cell s back into your bloodstream

Here is a link for more general info for Australia where some world- leading resarch is boing done and a newsletter to subscribe to
http://www.stemcellsaustralia.edu.au/Contact-Us/Enquiry-Form.aspx

 

[Insomniac]

If anyone hears about this for M.E please let us know.
Thanks for posting. It was fascinating and very good news. I had no idea that this existed or had been used so mcuh for M.S.

 

[adreno]

I believe there is quite a cancer risk from stem cell treatments.

 

[Little Bluestem]

The article says that the stem cells were harvested from her bone marrow. This is a more standard procedure that has been used for leukemia.

 

[Allyson]

i th

I believe there is quite a cancer risk from stem cell treatments.

thanks adreno,keeping an eye in it in any case as a hopeful line of treatment in near future

 

[Waverunner]

I believe there is quite a cancer risk from stem cell treatments.

A few weeks ago there was a very interesting article on sciencedaily. The main point was, that the creation of stem cells got a lot faster and a lot safer.They found a new way to make stem cells, which minimized the risk of cancer.

EDIT: But I can't find the link to the study

 

[Allyson]

If anyone hears about this for M.E please let us know.
Thanks for posting. It was fascinating and very good news. I had no idea that this existed or had been used so mcuh for M.S.

A woman I know in Melbourne Australia has had stem cell transplant to treat her fibromyalgia.

Fat was taken from her abdoment by liposuction then the stem cells filtered out and infused back in to her arm via IV injection (with some of her own blood).

It was done last August and when I asked her now - in December -if it helped she first replied "no", then later in the conversation said "maybe". She still has fibro pain requiring strong medication.

It was done in Carnegie if any one wants the doctors name then PM me an email or phone no and i will email or sms or phone you with further details.

Cheers,
Ally

 

[Allyson]

I believe there is quite a cancer risk from stem cell treatments.

thanks Adreno,
do you have any more details please?

keeping an eye in it in any case as a hopeful line of treatment in near future
asking myself, which would be worse ....cancer ( potentially treatable?) ....or ME
.....

 

[kurt]

Interesting article, so this is an autoimmune theory for MS then? Reminds me a bit of the Rituximab treatment, in terms of the mechanism (destroy WBCs), although perhaps Rituximab is safer as it only destroys one line.

 

[adreno]

thanks Adreno,
do you have any more details please?

keeping an eye in it in any case as a hopeful line of treatment in near future
asking myself, which would be worse ....cancer ( potentially treatable?) ....or ME
.....

The problem is when you inject stem cells, how do you control where they go, and where they act? How do you control the growth they induce? So they might end up growing somewhere you don't want them to, causing tumors. You can Google it. It is a well known concern. But maybe the therapy is getting safer, like Waverunner said, I don't know.

 

[Sushi]

thanks Adreno,
do you have any more details please?

keeping an eye in it in any case as a hopeful line of treatment in near future
asking myself, which would be worse ....cancer ( potentially treatable?) ....or ME
.....

Dr Cheney has worked with this a lot. A couple of years ago he was regularly taking groups of patient to Panama for stem cell infusions. The results were temporary though. Some members here had them and there are threads about this here. One member, who is very sick, had no benefit. I don't know of anyone for whom the effect lasted more than a year.

On the other hand some MS patients have been getting a different type of transplant--chemo to kill the bone marrow and an infusion following. Very radical, hugely expensive and very risky but most in the trial are doing better. I posted a video of a friend who had done this:

Sushi

 

[Allyson]

Dr Cheney has worked with this a lot. A couple of years ago he was regularly taking groups of patient to Panama for stem cell infusions. The results were temporary though. Some members here had them and there are threads about this here. One member, who is very sick, had no benefit. I don't know of anyone for whom the effect lasted more than a year.

Sushi

thanks for the most interesting info Sushi; would you happen to have the links to any threads discussing it please?


(A site search bought up none for me.)

 

[Sushi]

thanks for the most interesting info Sushi; would you happen to have the links to any threads discussing it please?


(A site search bought up none for me.)

Hi,

I don't have the links at hand but if you search here:

http://forums.phoenixrising.me/index.php?pages/google-search/

you should find several threads discussing stem cell transplants for ME/CFS patients. The usual "search" function on the forum doesn't work so well!

Sushi

 

[taniaaust1]

The first SCT for MS in Australia was nearly a year ago - see link - and they are now being done here for ME too

Some MS patients are going to desperate lengths to try to get access to this, I know one who illegally sold her baby for the money for this.

 

[Allyson]

Some MS patients are going to desperate lengths to try to get access to this, I know one who illegally sold her baby for the money for this.

OMG I would have thought it was available under medicare for MS patients Tania; ?
Though if I thought it would work for ME I would go to extreme lengths too.

 

[Allyson]

Hi,

I don't have the links at hand but if you search here:

http://forums.phoenixrising.me/index.php?pages/google-search/

you should find several threads discussing stem cell transplants for ME/CFS patients. The usual "search" function on the forum doesn't work so well!

Sushi

Thanks so much Sushi; brilliant idea.

 

[Allyson]

In particular I found your excellen tpost on Dr Cheneys warning on stem cell tranplants so have re-posted it here for others Sushi; hope that is OK and thanks indeed for the good work.

http://forums.phoenixrising.me/index.php?threads/from-dr-cheney-cfs-stem-cells-a-warning.107/

cheers,
Ally

 

[taniaaust1]

OMG I would have thought it was available under medicare for MS patients Tania; ?
Though if I thought it would work for ME I would go to extreme lengths too.

I dont know how things stand here now with that and MS.. it happened 2-3 years ago. She was on disability and couldnt get the stem cell treatment in Australia for MS and hence needed money to fly overseas to have it there.

I personally think she was crazy doing that (I tried to talk her out of it before she went ahead with getting pregnant).. I cant imagine doing that and having a child with such an unhealthy body and what we could be potentionally passing to any children we (MS or ME people) have but she was so desparate she wasnt thinking of that and the ones who brought the child.. didnt care about that as all they wanted was a child as the wife of the couple was infertile (and she liked the idea that she was helping another who had medical issues at the same time as helping herself).

It makes me wonder how many others are goign to this kind of desperation..never telling anyone but a few people they are close to about what they are doing etc

 

[Allyson]

On the ohter hand not to sanc

I dont know how things stand here now with that and MS.. it happened 2-3 years ago. She was on disability and couldnt get the stem cell treatment in Australia for MS and hence needed money to fly overseas to have it there.

Not to sanction that act but come to think of it it would be really hard looking after a child properly when you had ME ... as many can attest.
Tragic though, that it had to come to that in Australia.