Freedman has found his own cure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Lyon » Wed May 05, 2010 5:09 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:58 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Advertisement

Postby cheerleader » Wed May 05, 2010 5:10 pm

Lyon wrote:
cheerleader wrote:Immune ablation/stem cell treatment does not work for progressive patients...it only works in the active inflammation stage of MS. hmmmm...
So can any of us invent/manipulate the facts or is that always going to be exclusively your domain?


I don't invent facts, I just quoted a paper co-authored from Dr. Mark Freedman-

Both Nash et al. and we seem to agree that HSCT might be an effective therapy for multiple sclerosis (MS) patients in the so-called inflammatory stage of the disease. These patients appear to benefit from the intense immunosuppression and the reprogramming of their immune system (Muraro et al., 2003; Martin, 2007). The benefit for these patients has been clinically shown and is documented in MRI studies. Thus the most promising MS population for a therapy study with HSCT might be patients in early disease stages with an aggressive disease course who do not respond to the approved or applied immunomodulatory or immunosuppressive treatments. Such studies are conducted in the United States (HALT MS) as stated in the comment by Nash et al. The glass may be half full for these patients.

On the other hand the glass appears to be half empty for patients with long-standing, progressive MS and a high EDSS score. The patients included in our study belong to this group. Presumably, in this so-called neurodegenerative phase of disease, attempts to affect the peripheral immune system do not hinder or prevent clinical progression nor do they reverse existing clinical deficits. This has been shown in the transplanted patients examined in our manuscript (Metz et al., 2007), but also for other therapies such as Campath-1, an antibody causing the depletion of T cells (Coles et al., 1999). The continuing cerebral atrophy in MRI studies described after HSCT (Inglese et al., 2004) may have its correlate in the ongoing axonal damage and demyelination after HSCT seen in our study or could have been due to the drugs used for immunoablation as part of the HSCT procedure (Chen et al., 2006).


http://brain.oxfordjournals.org/cgi/con ... /131/2/e90
Neurodegeneration and demyelination continue for progressive patients who were treated by Freedman. That's why he's only treating RRMS now.

Obviously, we need further studies to see if CCSVI angioplasty/intervention is effective in stopping neurodegeneration or demyelination in MS patients. So far, so good in my house. But that's just anecdotal.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Cece » Wed May 05, 2010 5:44 pm

Lyon wrote:What is your definition of "work" and are we to believe, with absolutely no documentation, that you believe CCSVI does work for progressive patients?

okay to even respond I have to look past the tone of what you've said, because it does seem harsh and personal.... Anyway: we are dealing in theories. By m.s.-is-autoimmune theory, the complete obliteration of the immune system should stop progression. When it does not, it's evidence that the m.s.-is-autoimmune theory may not be right. By m.s.-is-secondary-to-ccsvi theory, obliterating the immune system would not stop progression. So that evidence supports the ccsvi theory, at least indirectly. Still dealing in theory only, yes, CCSVI should work for progressive patients; the assault of leaked iron cells and deoxygenation is theorized to be the cause of the m.s. damage and so, once stopped, there would be no further damage or progression. Yes, theory needs to be backed up by real-world documentation or research studies, asap. But a discussion of the theories is very relevant here.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby Lyon » Wed May 05, 2010 5:54 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:58 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby cheerleader » Wed May 05, 2010 6:08 pm

This thread is on Freedman- not hicy. Dr. Freedman is in the news a lot these days. I was referring to Dr. Freedman's own studies, in which he states immune ablation and stem cell therapy were not effective in progressive MS. He got 4 million dollars to study this from the Canadian MS Society.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Lyon » Wed May 05, 2010 6:21 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:57 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Donnchadh » Wed May 05, 2010 6:29 pm

Lyon wrote:
(snip)

But the gist of my argument on this one is that it's not sure that rebooting isn't helpful in progressive MS and that there is no proof that CCSVI IS helpful in progressive MS, which is what I think you were hinting or what would have been your point?

(snip)



I beg to differ. As someone who has been diagnosed by neurologists as PPMS and has underwent the liberation procedure, I can personally attest that post-procedure there was a dramatic improvement in my symptoms.

Is that "proof" in the sense you seem to be insisting on? Obviously not; you would probably either dismiss the results on grounds it was not part of a controlled study or just a placebo effect on my part.

Nevertheless, inductive reasoning is based on drawing inferences on observed facts and with each new liberation procedure there is starting to be an undeniable body of evidence of the validity of the CCSVI theory.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby Lyon » Wed May 05, 2010 6:34 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:56 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Lyon » Wed May 05, 2010 6:41 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:56 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Cece » Wed May 05, 2010 6:59 pm

Lyon wrote: Do you honestly think that serious science would ever buy into it regardless of how many people are convinced that it helped them, but without real studies?

Real studies are coming. I hope. IRBs willing. In the meantime, yeah, word-of-mouth reports hold some weight. We all have to make decisions based on the information we have at the time and the anecdotal evidence is among the information we have. Later on we may find we made the wrong decision one way or the other, but all we can ever do is the best we can at the time.

Apparently I need to look at the abundance of studies on immune ablation before I speak to that again. Interesting. The impression I'd had is that doctors are pretty much setting off dynamite to take out the immune system and that m.s. has continued...this is wrong, then?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby cheerleader » Wed May 05, 2010 7:27 pm

Cece wrote:[
Apparently I need to look at the abundance of studies on immune ablation before I speak to that again. Interesting. The impression I'd had is that doctors are pretty much setting off dynamite to take out the immune system and that m.s. has continued...this is wrong, then?


No--we're right, Cece. In autologous stem cell transplant studies (the kind the Dr. Freedman got 4 million dollars to study, what this thread is dealing with), demyelination and neurodegeneration continued...


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


The present study analyses autopsy material from five multiple sclerosis patients who received autologous stem cell transplantation. A total of 53 white matter lesions were investigated using routine and immunohistochemical stainings to characterize the demyelinating activity, inflammatory infiltrates, acutely damaged axons and macrophages/microglial cells. We found evidence for ongoing active demyelination in all of the five patients. The inflammatory infiltrate within the lesions showed only very few T cells and CD8+ cytotoxic T cells dominated the T cell population. B cells and plasma cells were completely absent from the lesions. High numbers of acutely damaged axons were found in active lesion areas. Tissue injury was associated with activated macrophages/microglial cells. The present results indicate that ongoing demyelination and axonal degeneration exist despite pronounced immunosuppression. Our data parallel results from some of the clinical phase I/II studies showing continued clinical disease progression in multiple sclerosis patients with high expanded disability system scores despite autologous stem cell transplantation.


http://brain.oxfordjournals.org/cgi/con ... 130/5/1254

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Cece » Wed May 05, 2010 7:35 pm

thanks, cheer...I have been living and breathing this stuff, it's the first time I've ever been excited about my disease (because it's the first time it makes sense, not to mention there's a treatment), but it does drive me up against my limitations in understanding some of the technical medicalese/researchese...I'll read through this tomorrow, when I'm fresher. 'night all.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby Donnchadh » Wed May 05, 2010 7:42 pm

Lyon wrote:
Donnchadh wrote:I beg to differ. As someone who has been diagnosed by neurologists as PPMS and has underwent the liberation procedure, I can personally attest that post-procedure there was a dramatic improvement in my symptoms.

Is that "proof" in the sense you seem to be insisting on? Obviously not; you would probably either dismiss the results on grounds it was not part of a controlled study or just a placebo effect on my part.

Nevertheless, inductive reasoning is based on drawing inferences on observed facts and with each new liberation procedure there is starting to be an undeniable body of evidence of the validity of the CCSVI theory.
Personally, I think your personal experience is wonderful and I hope it continues forever. I really do.

Still, putting MS and CCSVI aside for a moment, is what you're referring to the kind of "science" that you want the rest of your world based on? Do you honestly think that serious science would ever buy into it regardless of how many people are convinced that it helped them, but without real studies?


The scientific method is predicated on forming a testable hypothesis; a premise that can be falsified based on experiments with controlled variables.

In order to assemble a hypothesis, a series of observations must be done first and a plausible explanation postulated. The art consists of devising an experiment which has all known variables, save the one being tested, held constant.

Narratives from "MS" patients who have been liberated, and the objective clinical evidence generated from the procedure (e.g., diagnostic tests, pre- and post- operative images, etc.) are directly relevant to forming a hypothesis. A robust theory attempts to explain the causal basis for these facts.

You cannot formulate a study without prior observed evidence; inductive reasoning is the foundation of discovery. So yes, this is a beginning and necessary step in the "serious science" of proving CCSVI.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby Lyon » Wed May 05, 2010 7:46 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:55 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Lyon » Wed May 05, 2010 8:00 pm

.
Last edited by Lyon on Mon Nov 21, 2011 4:55 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service