Research crowd-funding

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Research crowd-funding

Post by 1eye » Sun Jan 10, 2016 4:57 am

People with no illness (i.e. doctors and specialist doctors) have been ranting about how CCSVI is bunk, for years after many people have had treatment for it and benefited, and are still benefiting. They persist in accusing anybody who doesn't agree with them of blasphemy to the effect that CCSVI cause MS.

They persist in this, and in public lamentations about some money that was spent years ago, "finding out" scientific "facts" like Lewis Carrol's ability to believe impossible things before breakfast. They don't seem to be able to come up with any rational, communicable truth or light to shed on the illness. As Tom Lehrer said, "I feel that if a person can't communicate, the very least he can do is to shut up."

If people on this forum or the faceliterati had any organized, real spending power, some things might be done differently. But to explode a myth, they don't. Scientific research is still funded the old-fashioned, fairly scientific way. Crowd-funding is not yet controlled by mobs on any side of any fence.

They preach to a devout choir, but like this forum, the choir does not directly fund anything. Thank you, marvelndc superheroes, star treknwars, Lewis Carroll characters, and other gods of current culture widely considered worth worshiping.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

ElliotB
Family Elder
Posts: 1942
Joined: Mon Feb 03, 2014 4:08 pm

Re: Research crowd-funding

Post by ElliotB » Sun Jan 10, 2016 5:25 am

"many people have had treatment for it and benefited, and are still benefiting"

This is very true, but it is also true that many people have had the CCSVI treatment and have not benefited.

And many people do well on the various diets, and many people don't. Why does one person do well on a low fat diet and another do well on an 'opposite' high fat diet?

The same holds true for just about every treatment tried, they work for some and not for others. But all appear to work (for some).

So how do we determine when a treatment is truly working? Truly a difficult task when the majority of those with MS do well without any special treatment, diet, etc. in the first place. And not all advance to the more advanced stages.

I am very pro-active with my health in every way and feeling/doing much better than I did just a few years ago yet I cannot say with certainty that anything I am doing is really helping. I guess I will have a better idea in about 10-12 years.

Unfortunately there does not seem to be a simple answer to your quest.

User avatar
cheerleader
Family Elder
Posts: 5359
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Research crowd-funding

Post by cheerleader » Sun Jan 10, 2016 8:24 am

ElliotB--To determine if your treatment is "truly working"--ask to have your gray matter measured----third ventricle and thalamus. Have MRI techs compare to prior MRIs, and write up a report.
That's how we saw documentation of disease reversal in Jeff.
His gray matter atrophy reversed after CCSVI venoplasty, and continues to decrease. His gray matter now looks normal--his third ventricle is normal, no thalamic atrophy. Something unheard of in MS progression (or in a 52 yr. old man.)
Brain atrophy is a feature of both relapsing and progressive (secondary progressive: SPMS; primary progressive: PPMS) forms of MS [8, 28, 30, 33–39]. The available evidence suggests that, once established, atrophy progresses inexorably throughout the course of the disease, at a rate that – after adjustment for baseline brain volume – is largely independent of MS subtype
In an early study, the normalised thalamic volume in MS patients was decreased by an average of 17%, compared with healthy controls, and the mean width of the third ventricle was increased two-fold; there was a significant correlation between third ventricle width and thalamic atrophy (r= –0.59; p<0.05). Furthermore, examination of post mortem specimens showed a 22% decrease in neuronal density in the median dorsal thalamic nucleus, and a similar decrease in the mean volume of this structure; overall, it was estimated that neuronal loss in MS patients could be as high as 30%–35% [73].
http://www.smw.ch/content/smw-2013-13887/
Trust me, MS neuros and MRI techs know this is the holy grail in MS disease reversal, but they won't tell you. (Almost all of BNAC's current imaging work is in seeing how DMDs affect the thalamus.) http://www.bnac.net/?page_id=359

As far as research crowd-funding, 1eye, CCSVI Alliance will be holding our matching grant program very soon, giving people a chance to double their money in a donation to the ISNVD. These researchers do not have pharma money. They get grants from NIH and public, and they need our help.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

Rogan
Family Elder
Posts: 115
Joined: Fri Dec 23, 2011 11:18 am

Re: Research crowd-funding

Post by Rogan » Sun Jan 10, 2016 10:44 am

I agree oneeye

That's why I decided join the sponsors of this coming ISNVD in New York.

A little investment in this research now will lead to much greater money soon. This work is on to something so amazing it will be noticed by HHMI, Paul Allen, NIH, or some other well intentioned charity like Annette Funicello.

Thanks for posting this concern.

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Re: Research crowd-funding

Post by 1eye » Sun Jan 10, 2016 11:24 am

Well, I guess I need to rid myself of those lesion-load counters, and get my brain volume progression figured out... Goodness knows I have had enough MRIs, with and without contrast, to be able to get some idea. If atrophy inexorably increases, what is the expected rate? Have any long-term studies been done on people who have had lots of MRIs? If there is no discernible difference between the "phenotypes" why bother? Is there any treatment group which fared better in this measurement?
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

User avatar
cheerleader
Family Elder
Posts: 5359
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Research crowd-funding

Post by cheerleader » Sun Jan 10, 2016 11:53 am

1eye---we found this paper most helpful. There are differences in where gray matter atrophy occurs, and at speed of progression which differentiate the groups. Give it to your MRI techs, and ask for comparisons over the years of your thalamus and third ventricle width. http://www.smw.ch/content/smw-2013-13887/

Here are all my blog posts on the topic, w/research links
http://ccsviinms.blogspot.com/search?q=gray+matter

Rogan, GOOD for YOU! Thank you for your contribution to the ISNVD.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Re: Research crowd-funding

Post by 1eye » Mon Jan 11, 2016 6:59 pm

WHY AREN'T PEOPLE SCREAMING about this? I AM!

I have had numerous MRIs, and half a dozen neurologists and never has my brain atrophy been measured or discussed with me. In my diagnosing MRI the radiologist (the first person to tell me that they had known I had MS for a year) reported an atrophic corpus callosum.

WHY do these people have jobs? Why don't they give Joan Beals an honorary license to practice neurology?

I get more and more LIVID and APOPLECTIC when I think about it. If drug mfrs want to prove efficacy they have to first learn to measure the disease!
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

User avatar
cheerleader
Family Elder
Posts: 5359
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Research crowd-funding

Post by cheerleader » Mon Jan 11, 2016 7:16 pm

8O Ha! Sure, I'll take that honorary license, 1eye....just let me put on my white lab coat, and I'll be right with you.... :-D

but seriously, the fact that no one talks about this is truly enraging. And I don't get why MS patients aren't screaming about it, and why their neuros don't talk about it.

Today, I wrote up a blog post to explain thalamic atrophy and the growth of the width of the third ventricle, and how this is the only correlate to MS disease progression. Let me know if it's clear or not. I included pictures and links to research. I hope people will share it with their neuros, MRI techs and friends with MS. We need to educate.
http://ccsviinms.blogspot.com/2016/01/t ... ssion.html

The problem is that MS specialists built a business around the disease modifying drugs. And it's almost impossible to turn around a 20 billion dollar a year industry. But knowledge is power...at least I hope so!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Re: Research crowd-funding

Post by 1eye » Mon Jan 11, 2016 7:51 pm

to - Dr. Kirsty Duncan

Minister of Science - Ministre des Sciences (IC/IC)
sci.minister-ministre.sci@canada.ca

Dear Dr. Duncan,

You can see how upset I am from the thread referenced below.

If the major criterion for MS disease progression is brain atrophy, why can't I see data points on a graph of my atrophy measured in dozens of MRI scans since my diagnosis in 1998, and a year before that in 1997, showing the obvious, measurable atrophy? There is no such graph!

Neurologists let drug companies and the FDA tell them how to measure MS!

Please read this short thread... http://www.thisisms.com/forum/chronic-c ... 27228.html

As you may know, my handle on ThisisMS, http://www.thisisms.com, is 1eye.

Chris Sullivan
MS (im)patient
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Re: Research crowd-funding

Post by 1eye » Wed Jan 20, 2016 2:06 pm

This unit of entertainment not brought to you by FREMULON.
Not a doctor.

Cece
Family Elder
Posts: 9332
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: Research crowd-funding

Post by Cece » Fri Feb 12, 2016 10:44 am

cheerleader wrote:As far as research crowd-funding, 1eye, CCSVI Alliance will be holding our matching grant program very soon, giving people a chance to double their money in a donation to the ISNVD. These researchers do not have pharma money. They get grants from NIH and public, and they need our help.
I have been really impressed by the work CCSVI Alliance has done and the continued work despite the die-down of the initial frenzy.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post