This Is MS Multiple Sclerosis Community: Knowledge & Support

Autologous haematopoietic stem cell transplantation fails to stop demyelination and neurodegeneration in multiple sclerosis




http://brain.oxfordjournals.org/cgi/con ... 130/5/1254
This is a study. It is science. It is not my opinion. The doctors tested the brains of five MS patients who had received this treatment. The treatment Dr. Freedman has received 4 million dollars to study. The treatment we are talking about on this thread. Upon autopsy, the treatment HAD NOT STOPPED MS(demyelination or neurodegeneration) in ONE SINGLE PATIENT tested.

There is nothing personal here. It is just fact.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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Lyon,

you still dont get it. The aim of my post was that a real scientist should defend his results, even if it is about fishing with dynamite.

BUT a real scientist must NOT attack an other theory, which only requires a few hundred ultrasound examinations and a few hundred well-tested- 1-hour-surgery to prove its effectiveness.

We are talking about money here, and not about science. That man defending his money and not his scientific results.

you see what i mean?

alex

The thing is, far more people have received benefit from the treatment of CCSVI than have from blowing away the immune system. The Italian patients who did not re-stenose report benefit 3 years out. Most Stanford stentees report benefit a year out. That is nearing 100 people, and I have not read that of a like number of stem cell therapy recipients (mind you, I have not looked for that information, and don't care to.) How is it that PPMS and SPMS are reporting some immediate benefit from treatment for CCSVI, but chemo/stem cell therapy does not have any effect on the same group? Something is missing from that equation.

Not to be too personal, but you do write of your interest in "re-booting" the immune system. Just what is your interest in that? It is not your immune system that is on the line, and it is not your brain that is on the line. Really, why ought any of us here - who are suffering - care what your interest is? This forum is populated by people seeking CCSVI information and treatment. What is your interest here? It is a public forum, and all are welcome, but it seems to be an intellectual exercise for you. It is not such for us.

Mark my words, there are going to be some very nasty results from destroying immune systems. There has already been at least one death in a cohort of 18.

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My name is not really Johnson. MSed up since 1993

I think most of these treatments will become second line of treatments once questions around CCSVI are unraveled, which I think is just a matter of time.
For example, areas that are hard or risky to operate ...

I really cannot think of anyone heading for stem cell, campath etc if liberation works out. I for one would want to fix the issue at the root then suppress the symptoms alone ...

To extrapolate, tomorrow if a gene is found to be the culprit for CCSVI then I would prefer a gene therapy and liberation would go into background ...

I think scientist community should accept that they have messed up and make way for more promising methods ...

But i don't know if parasites like Freedman/Khan would give up so easily ...

Johnson, Lyon has MS.

Lyon, remember to play nicely.
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Research---it always comes down to the research:

Here is another paper co-authored by Dr. Mark Freedman--
discussing a very nasty side-effect of his treatment...brain atrophy

Brain atrophy after immunoablation and stem cell transplantation in multiple sclerosis



http://www.neurology.org/cgi/content/ab ... 66/12/1935

Patients have the right to read the published research. Not to be shamed or mocked by some anonymous commentator on a forum. The CCSVI forum started with an intriguing research paper and we continue to link to the research as it is presented. I just posted the new genetic paper linking CNVs of venous malformation and MS last week. The stack is growing.

Freedman has published a lot of research regarding his trial--and there were many problems. Death due to liver toxicity, brain atrophy, and continuing demyelination and neurodegeneration. I would not call that a resounding success...
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Bob, I am trying to understand, why do you think the 15 articles are just rehash of the same info?
My belief is that they have been uncovering quite a bit of interesting stuff as they continue to research.



Bob, pardon me again here but what has cancer got to do with immune system?

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I'm not sure this is accurate. Approximately 40 patients were treated at Stanford. Only about 20 reported anything here at thisisms; that's only half actually reporting anything. (I realize some may have their own blogs).

In that group of 50% reporting here, many have reported improvements, like improved fatigue and less brain fog. Based on reports here, two patients were essentially cured of their MS. But many others have been vague.

Others have not or cannot report benefittng from the treatment.. There was one tragic death, and one patient had severe complications as a result of the stent procedure. At least three reported no benefit, and one person seemed to get worse. And many of that 50% group that posted here no longer report anything.

So, of the half that we have heard from, the results have been a mixed bag.

I think that drawing conclusions from results of trials/treatment thus far is problematic as it seems like PPMS people appear in trials in disproportionate numbers to the overall MS population. 40-50% in trials/treatment and 15% in the general population. I think that results would look more promising if the population of PwMS were more accurately distributed in initial trials (85%RR/15%PP). Am I off base?

PN

So, you do not have MS, Bob? I'm glad of that.

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My name is not really Johnson. MSed up since 1993

Fair enough. I never did say that my mind is clear, and my thoughts concise. (I am actually having trouble reading these days)

It is too bad that the reporting tapers off. I always wonder if they have regressed and are too depressed to write about it, or if, like the Italian fellow who 'forget(s) what it is like to have MS', they have just moved on, and resumed their interrupted lives. I hope - for them - that it is the latter.

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My name is not really Johnson. MSed up since 1993