Local MS sufferes throw support behind Reformed MS group

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

Local MS sufferes throw support behind Reformed MS group

Postby erinc14 » Wed Jul 07, 2010 6:48 am

“When Jesus Christ raised the dead,” he said, “he didn’t do a double blind study :D . They’re claiming that chronic cerebrospinal venous insufficiency treatment doesn’t work, but there are thousands of people who’ve had this treatment and are walking around—a large percentage of them are significantly better.”

According to MoneySense, the Canadian MS society spends 48 per cent of their revenue on operating and administrative costs. This is something Simonyi-Gindele says is hindering the progress of offering the more effective treatment.

“They’re a trade industry,” he said. “They represent health care, not patients. If they were for patients, they would see how to make this treatment more available—where instead they are creating obstacles.”

http://www.enfieldweeklypress.com/stories.asp?id=3797
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Postby CCSVIhusband » Wed Jul 07, 2010 7:23 am

I'm not for completely vilifying the national MS society for spending 48% of their revenues on administration and fund-raising, because doing so brings in more funds.

Almost ALL non-profits do this. It helps them bring in more money, reach more people, and promote their cause.

Though, I do personally believe that non-profits (or charity if you'd rather call it that) SHOULD be done without seeking return compensation. It should be done because it's a cause you believe in and would work for for free. When it becomes a business - and therefore a way of life/means to an end for some - it loses its values and focus and drive that started it - even if just a little.


After saying that, I do think they've lost their way with looking for a potential cause of MS in many people in regards to CCSVI - and I wouldn't personally support them any more until they change their rhetoric and look at the fact that CCSVI just may "cure" some people of MS if caught early enough. People truly can't wait for 10 years for all the research to be done (and only select few will be treated in those 10 years).

That's why I'd support the CCSVI alliance. It doesn't represent MS, it represents CCSVI as a potential CAUSE of MS in some people. Let CCSVI be treated alone. If it HELPS lessen the affects of MS great ... but I still can't believe anyone can think impaired blood flow is a GOOD thing to have going on in your body.

And after saying all that, I do believe in CCSVI results as it relates to MS - because I physically see them every day! For the first time in a year - there is a DRAMATIC improvement that is able to be seen (physical things that CAN'T be ascribed to 'placebo') ...

I don't understand how that's NOT something the MS society wraps its hands around more than it has.
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Postby JCB » Wed Jul 07, 2010 9:16 am

Again, I have to agree with MS I mean CCSVIhusband. I think our National MS Society has forgotten or strayed from their "Purpose Statement". If you look on their web page it is hard to argue with what they stand for and what they want to do. I think they have lost their focus, and are not our best advocates for a cure.

That being said I think the programs they have for living and coping with the desease are good. I would support them if that is what their intent was, and that was spelled out. I think their overhead is high because of these programs. I don't have a problem with that.

I do have a problem with a non-profit saying they are an advocate for me and then not rigorously pursuing a promising nondrug related halt to the desease. $2.4MM sounds like a lot of money, but in drug trials it is nothing. I feel like a dog that has been thrown a bone to be quiet, it won't work.
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Postby sbr487 » Wed Jul 07, 2010 9:33 am

MSS has probably played the dirtiest game in this whole circus. Not once they tried to come clean & clarify, and almost every time they echoed neuros' stance.

I really have a doubt if they were honest in funding the recent studies. If they are, they should come forward and clarify the selection (and rejection) criteria for the studies.
What are the parameters they were looking for
What are the areas of research they are encouraging.

It would be very interesting to see the reason why Dr. Haacke missed out.

These guys want status quo (for obvious reasons). Never underestimate inertia ...

All the donations I have made (what ever little I can) so far has gone to charity intelligence, ms-direct, bnac, ccsvi alliance ...

Reformed MS society deserves a chance, especially in the light of how MSS has handled things ...
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Postby gothicrosie » Wed Jul 07, 2010 12:44 pm

Where did the large figure come from exactly?

For example: The American Heart Association stated they spent 16.2% on Fund Raising expenses and 7.3% on Management & General expenses.

The NMSS reported in their 2008 annual report (Home office & local offices combined charts) that they spent 15.1% on Fundraising and 7.7% on Management & General expenses.

Similar numbers, no?

What is the 48% referring to?

You could add their expenses for Public & Professional Education (16.7%) and their Services to Chapters (7.9%) and get a total of 47.4%. Does that mean they should stop servicing outside chapters? Should they stop creating educational material?

The NMSS has burned us on the CCSVI issue, but their work is very helpful. It helped me when I was diagnosed and I am sure they have helped countless others.

We can not expect this organization to just take an about turn and focus ALL of its efforts on CCSVI. No matter how much we would like them to and no matter how much we hate their hater comments about how they plan to disprove CCSVI and only give money to diagnostic studies.

Every large organization uses a lot of money to keep from falling flat on their faces and in order to help others per their original mantra.

Disagree with their methods? Find another organization to support to prove the NMSS wrong. Put your energy into the other organizations that plan to prove CCSVI.

Don't waste your energy screaming at the wall that is NMSS.

We have enough problems with fatigue. :)
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transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby nicko » Wed Jul 07, 2010 7:42 pm

The ms society is not in our general interest. First off how many members of their board have a direct link with ms? such as family members. How many are members on pharmaceutical company boards? There is a definite conflict of interest there.

They are looking for a drug that will help everyone. Not a surgery... a surgery will stop their income. They only seem to be willing to test ccsvi because of all the noise we have been making. Not to mention the seven studies they have will control the outcome of ccsvi. If they all come back showing that ccsvi is found in the same % of healthy controls as msers. Ccsvi research will be stopped in its tracks. No one will argue with the data from seven studies.
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Postby gothicrosie » Wed Jul 07, 2010 11:14 pm

Playing devil's advocate here...
nicko wrote:The ms society is not in our general interest. First off how many members of their board have a direct link with ms? such as family members.


The Chairman Weyman Johnson Jr has MS and has a family member with MS.

nicko wrote:They are looking for a drug that will help everyone. Not a surgery


They may not be funding surgeries (I was under the impression that angioplasty is not a surgical procedure but a minimally invasive technique) but they do fund alternative research such as the physical therapy studies done by Dr. Victor Mark: http://clinicaltrials.gov/ct2/show/NCT01081275 & http://clinicaltrials.gov/ct2/show/NCT00695084

Did you know they are partially funding cannabis research for MS spasticity? http://clinicaltrials.gov/ct2/show/NCT00682929

nicko wrote:If they all come back showing that ccsvi is found in the same % of healthy controls as msers. Ccsvi research will be stopped in its tracks. No one will argue with the data from seven studies.


Doubtful. Considering the current state of our awareness of CCSVI. Considering people like Dr. David Hubbard, Dr. Mark Haacke, Dr. Marion Simka, Dr. Michael Dake, and Dr. Adnan Siddiqui and his team at the University of Buffalo. I do not think these voices coupled with Dr. Zamboni and his team in Italy can be silenced with a few research studies conducted with the NMSS' money.

One of the 7 studies being funded by the NMSS is actually going to use catheter venography, which is the method we are being recommended to use to discover any venous issues since it is the interventional radiologist's "gold standard" for diagnosing vein and arterial pathology.

Look, all I am saying is that they have done significantly good work in the past and will continue to do that kind of work in the future and being angry about their choice not to fund treatment studies is a waste of your energy.

Stop funding them, stop paying attention to them, and start funding and paying attention to the people I have just mentioned. I think Dake is looking for funding and I know Haacke is in the middle of a study and so is Hubbard. All good people that probably need our support the most now.

The devil is off to bed. ;)
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby concerned » Wed Jul 07, 2010 11:24 pm

I'm sure a whole lot of people now, and most likely then, would demand a double-blinded, controlled study of "Jesus"'s miracles, it's just that he never seems to be around to give proof except in mythological accounts.
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Postby fiddler » Thu Jul 08, 2010 4:40 am

Folks, the 48% referred to in the first post is for the MS Society of CANADA (not the NMSS), and includes administration, management and fund-raising costs. This information was revealed in a magazine article comparing charities, presumably using similar criteria for all developed by the federal tax department. It found the MS Society of CANADA to be the second worst larger charitable organization in the country. Organizations like the Red Cross were under 20%.

It is difficult to say if the NMSS figures quoted by a contributor above followed the same criteria. We may be comparing apples to oranges if the NMSS figures do not include fund-raising costs, for example. Of course, even if comparable figures for the NMSS are good, you still have to decide for yourself if the work that it is doing is worthwhile.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby LauraV » Thu Jul 08, 2010 3:30 pm

Whatever the actual numbers are, I think the MS Society is interested in the MS Society and their self-preservation. Look at their vague mission statement - "to rid the world of the devastating effects of MS". What the heck does that mean? It means everything and it means nothing. Many people would assume this includes looking for a cure, but that would just be an assumption. Their words suggest that but they don't say that, so we shouldn't expect that from them. Look at their brochures and magazines full of "inspiring" stories of people dutifully taking their CRAB drugs and learning to live with their MS like good boys and girls. (I mean no offense to the people with MS featured in these stories. I congratulate them on their accomplishments and I wish them well. I just think they're being used.) We should be living with our MS and be glad they're there to "help" us.

I see the MS Society as a parasite living off its host - people with MS. Parasites need the host to live. If the host is gone (or is cured or greatly improved) they will have to go too.

Cynical? Probably. Realistic? Definitely.
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Postby Jaguar » Thu Jul 08, 2010 3:49 pm

Personally, I find the constant reference to 2.4 million dollars for CCSVI research by the MS Society reprehensible and insulting.

The MS Society of Canada provided $700,000 - over 2 YEARS, yet they consistently try to convince everyone (quite successfully) that they have invest 2.4 mil.

And the MS Society in the U.S. Is no better - they ALSO claim to have invested 2.4 mil, when in fact it is 1.7. Even worse than Canada if you pro-rate the amounts to our respective populations

These organizations are not connected and they are not pooling their money, they are just pulling the wool over our eyes.
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Postby Jaguar » Thu Jul 08, 2010 4:04 pm

Just a further note on the above

In Canada the MSS put an average $9 for every MS sufferer in the country into CCSVI research, over 2 years. That's $4.50 per year. I know I gave them more than that last year!!!!!!

In the States it's just a little over $5 (I sure hope that's not over 2 years, but I fear it is)
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Postby Cece » Thu Jul 08, 2010 6:41 pm

The MS Society's response to the CCSVI movement has been slow and derisive. But they have funded a tremendous amount of research over the years and offered services and support groups. I hope that they will recognise the tremendous amount of interest that people with MS have in CCSVI and bump it up as a priority. Also as research comes in supporting CCSVI, I expect things will change for the better.
"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
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Re: Local MS sufferes throw support behind Reformed MS group

Postby scorpion » Thu Jul 08, 2010 6:45 pm

erinc14 wrote:“When Jesus Christ raised the dead,” he said, “he didn’t do a double blind study :D . They’re claiming that chronic cerebrospinal venous insufficiency treatment doesn’t work, but there are thousands of people who’ve had this treatment and are walking around—a large percentage of them are significantly better.”

According to MoneySense, the Canadian MS society spends 48 per cent of their revenue on operating and administrative costs. This is something Simonyi-Gindele says is hindering the progress of offering the more effective treatment.

“They’re a trade industry,” he said. “They represent health care, not patients. If they were for patients, they would see how to make this treatment more available—where instead they are creating obstacles.”

http://www.enfieldweeklypress.com/stories.asp?id=3797



huh?
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Postby ms2009 » Thu Jul 08, 2010 7:03 pm

Ladies and Gentlmen,
Both the Canadian and the US societies are not working on CCSVI because it attacks their basic orthodox beleif. Just forget about them and seek CCSVI liberation if it fits you or support the demand for that.

Yes the Canadian society are wasting half the money un-productively and by all means 48% is a horrible figure that they themselves could not justify.

I suggest to everybody to stop giving to them and give to institutions helping find a cure (whether CCSVI or not). I think offering CCSVI or CCSVI hope for patients is better than raising more funds to be wasted here and there.

CCSVI is coming from the vascular discipline not the neuros and this is good enough for us. We just need to see if CCSVI can help. A lot of MSers tried everything else and did not work. So let them try this one also but LOCALLY.
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