Why won’t the MS Society help people?

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Why won’t the MS Society help people?

Postby erinc14 » Mon Sep 06, 2010 6:21 am

.Why won’t the MS Society help people?

MIDLAND – Last night on the news, we heard that the medical profession and the MS Society turned down the “liberation” treatment that is now available to patients with multiple sclerosis.

They will not even consider trials, which tells me there is no interest in helping MS people have a better quality of life. How sick is that?
:!:
In one breath they say more testing is needed; in the next, it’s “No, we won’t try Dr. Zamboni’s findings.”

We took our granddaughter to Costa Rica and she had marvellous results. Each week, she seems to be more excited because she’s getting her life back. She’s walking now, seeing better, etc.

I would like to know if the medical community and MS Society have followed any of these patients with a new life around. Maybe they should get off their butts and do this kind of research, because what they are doing is ignoring the help that is there.

We don’t know if this is a cure, but we do know there are blockages in the veins that, when opened, all are in way better health than before.

I would think not being allowed to have this corrective surgery would be against your constitutional rights as a Canadian. If there’s something wrong, it should be fixed.

I’m asking the Canadian people to fight for our MS patients, to demand this help for our friends and relatives. I feel if the MS Society refuses to try a process that works, then we must take action and stop funding them.

Write, call, demand and scream for your rights. Do it now. Remember: people power works.

Lorna Murray, Midland

.

http://www.simcoe.com/opinion/letters/a ... elp-people
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Re: Why won’t the MS Society help people?

Postby HarryZ » Mon Sep 06, 2010 7:10 am

Lorna,

I wish there was a simple answer to your question, but there isn't!

Although I'm not exactly a fan of the MS Society, I also don't think it is fair to say that they don't want to help patients with MS. They do a lot of work on local levels to help many who suffer from this disease. But they are also caught up in the politics within the established MS world of medicine.

All of the major decisions in MS research are made by the MS docs (Neuros, researchers, scientists) and they are greatly influenced my the drug companies who produce today's approved MS medications. These companies make a ton of money from the sale of these drugs. The docs and research centres benefit from this money as does the MS Society. So you now begin to see the big picture and whether we like it or not, it exists.

Along comes Zamboni and CCSVI. Talk about turning the MS world upside down in a very short period of time. Although other MS docs have questioned the direction of MS research and the theory behind the long believed auto-immune disease principal, Zamboni has shaken these people to the very core. They are circling the wagons to protect their domain.

Also, you are seeing a backlash of anger towards everyone on opposite sides of CCSVI because of what is happening. I have heard that Zamboni's goal was to have a huge amount of research go forward with CCSVI in the hopes that we would get an answer as to the feasibility of this theory. We have also seen all kinds of innuendo, claims, counter claims etc about CCSVI, both positive and negative. And believe me, when something other than the current theory comes along and challenges it, this always happens.

Caught in the middle of all of this is the MS Society. No matter what they say or what direction they go, they are going to catch flack. Their upper echelons are more accountable to the current MS world and not to something like CCSVI. Their everyday workers are likely really getting an ear full from MS patients and their families. I've been following MS research for 45 years now and I'm afraid that it is going to get worse before it gets better.

Harry
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Re: Why won’t the MS Society help people?

Postby scorpion » Mon Sep 06, 2010 7:30 am

HarryZ wrote:Lorna,

I wish there was a simple answer to your question, but there isn't!

Although I'm not exactly a fan of the MS Society, I also don't think it is fair to say that they don't want to help patients with MS. They do a lot of work on local levels to help many who suffer from this disease. But they are also caught up in the politics within the established MS world of medicine.

All of the major decisions in MS research are made by the MS docs (Neuros, researchers, scientists) and they are greatly influenced my the drug companies who produce today's approved MS medications. These companies make a ton of money from the sale of these drugs. The docs and research centres benefit from this money as does the MS Society. So you now begin to see the big picture and whether we like it or not, it exists.

Along comes Zamboni and CCSVI. Talk about turning the MS world upside down in a very short period of time. Although other MS docs have questioned the direction of MS research and the theory behind the long believed auto-immune disease principal, Zamboni has shaken these people to the very core. They are circling the wagons to protect their domain.

Also, you are seeing a backlash of anger towards everyone on opposite sides of CCSVI because of what is happening. I have heard that Zamboni's goal was to have a huge amount of research go forward with CCSVI in the hopes that we would get an answer as to the feasibility of this theory. We have also seen all kinds of innuendo, claims, counter claims etc about CCSVI, both positive and negative. And believe me, when something other than the current theory comes along and challenges it, this always happens.

Caught in the middle of all of this is the MS Society. No matter what they say or what direction they go, they are going to catch flack. Their upper echelons are more accountable to the current MS world and not to something like CCSVI. Their everyday workers are likely really getting an ear full from MS patients and their families. I've been following MS research for 45 years now and I'm afraid that it is going to get worse before it gets better.

Harry


Thanks for writing this Harry. I agree that the anger being directed against the Joe six pack MS Society worker is misguided. However I disagree that Zamboni's research turned anything upside down. What turned things upside was the misleading information and hype disseminated over the internet by people interpreting Zamboni's results as the "miracle cure" we all hoped for. I hope you are wrong that what I consider the "misdirected anger" will get worse but at this point I do not see an end in sight.
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Postby Blaze » Mon Sep 06, 2010 7:31 am

Harry: If the MS Society wants to help people, why did they write to all Ontario MPPs a few months ago advising them to NOT fund CCSVI treatment? We don't need "advocates" like that. I and my friends are no longer contributing.

Who would have ever thought a provincial Premier (Brad Wall of Saskatchewan) would become such a strong supporter of people with MS, while the MS Society actively rejects our calls for support. In fact, Yves Savoie of the MS Society is already claiming Saskatchewan's trials will not be effective. How does he know that?!? Submissions haven't even been submitted yet!

Lorna: If you're interested in having the treatment available right here in Canada, check out www.angioplasyforall.com

Angioplasty for All has retained a lawyer and will will soon launch a legal constitutional Charter Challenge in Ontario. When they win in Ontario (They are convinced they will), they will immediately launch legal action in other provinces and territories. I'm sure College of Physicians and Surgeons, MS Society and governments will put up quite an opposition battle.

That legal challenge is going to take $. The last I heard, Angioplasty for All had about $11,000, but more is needed. If each Canadian with MS donated just a loonie, they would have $75,000. If each donated a twoonie, they would have $150,000.

I hope your granddaughter continues to improve. She is fortunate to have grandparents like you to help her.

How did you find the facilities, treatment and follow-up in Costa Rica? Others on this site have been hoping to hear from someone who was treated there.
Last edited by Blaze on Mon Sep 06, 2010 7:40 am, edited 1 time in total.
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Re: Why won’t the MS Society help people?

Postby HarryZ » Mon Sep 06, 2010 7:39 am

Thanks for writing this Harry. I agree that the anger being directed against the Joe six pack MS Society worker is misguided. However I disagree that Zamboni's research turned anything upside down. What turned things upside was the misleading information and hype disseminated over the internet by people interpreting Zamboni's results as the "miracle cure" we all hoped for. I hope you are wrong that what I consider the "misdirected anger" will get worse but at this point I do not see an end in sight.


When something like CCSVI comes along, you are always going to get the scientific explanation of what is happening along with the "miracle cure" hype that follows it as well. The hype doesn't come from the docs but from the general public and it only serves to cloud the science and fuel the anger. And believe me, it WILL get worse.

Harry
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Postby HarryZ » Mon Sep 06, 2010 7:46 am

Blaze wrote:Harry: If the MS Society wants to help people, why did they write to all Ontario MPPs a few months ago advising them to NOT fund CCSVI treatment? We don't need "advocates" like that. I and my friends are no longer contributing.


It's the top brass of the MS Society that is advocating not to fund. The foot solders within the Society do a lot of good work for MS patients. Believe me, I am as fed up as you are at what they have done in Ontario!

Who would have ever thought a provincial Premier (Brad Wall of Saskatchewan) would become such a strong supporter of people with MS, while the MS Society actively rejects our calls for support. In fact, Yves Savoie of the MS Society is already claiming Saskatchewan's trials will not be effective. How does he know that?!? Submissions haven't even been submitted yet!


Yep, a totally unprofessional comment from the guy at the top. Makes me cringe that he would say this. But we can't blame the every day workers at the MS Society for this kind of nonsense.

I saw how the US National MS Society handled the release of information on the Prokarin double-blind clinical trial a few years ago. Would make you sick how the top brass operates at times.

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Re: Why won’t the MS Society help people?

Postby sbr487 » Mon Sep 06, 2010 8:00 am

HarryZ wrote:Along comes Zamboni and CCSVI. Talk about turning the MS world upside down in a very short period of time. Although other MS docs have questioned the direction of MS research and the theory behind the long believed auto-immune disease principal, Zamboni has shaken these people to the very core. They are circling the wagons to protect their domain.


While I agree with you, Harry on certain parts, its really the MSS we are talking about. The reaction of Neuros is understandable to a certain extent (paradigm shift is not easily accepted) but MSS is supposed to go behind the best possible MS solution ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Re: Why won’t the MS Society help people?

Postby 1eye » Mon Sep 06, 2010 8:26 am

HarryZ wrote:Lorna,

Caught in the middle of all of this is the MS Society. No matter what they say or what direction they go, they are going to catch flack. Their upper echelons are more accountable to the current MS world and not to something like CCSVI. Their everyday workers are likely really getting an ear full from MS patients and their families. I've been following MS research for 45 years now and I'm afraid that it is going to get worse before it gets better.

Harry


People may think the 'MS' Society has been here for a long time. In fact, though people of this generation seem to think history begins with them, and are "condemned to repeat it" [George Santayana], the MS Society is fairly new on the earth. There is an early history of it which shows not much has changed.

http://alturl.com/snhhk

MS itself is different. Because it is so relatively recently even known about, it is not told about in Roman or Greek writings. So its historians have made its story the subject of books, papers, though not yet movies and TV that I know of. Along with the tendency to believe 'history starts here', some tend to make much of the stories of science, and use the printed page very thoroughly, to describe it.

The more recent story of the 'MS' Society, like 'MS' itself, however, maybe has been caught early enough, and though it may be too late to undo some of the damage that has been done, perhaps its progression as a disease may be slowed or even halted.
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Postby welshman » Mon Sep 06, 2010 9:45 am

When we talk about the MS Society we really need to distinguish between the local volunteers who truly want to help MS sufferers and the "top brass" who are basically now only in it for their lucrative salaries.

Sadly even the local Chapters have been tainted by the H.O. mentallity - case in point is 1) our Okanagan Chapter who's Chairperson asked "Is the anger misdirected ?" and wrote an article very much like we've just seen from the Canadian Institute of Health (much more research needed for this unproven treatment, don't take your health into your own hands, wait for the results of the trials we've funded). and 2) the BC and Yukon District Chapter in their Summer / Fall paper had an article that again clouded the waters by ignoring all kinds of reports coming from overseas showing the benefits that CCSVI treatment can give, but again discouraging any sufferers seeking out the treatment.

As much as I agree there is still an unbelievable amount of research to be done, I also believe that to do nothing when we have the potential now available to improve the lives of pwMS is unconsionable. I cannot find it my heart to forgive the MS Society for the way it has let down its Members on this issue - giving lipservice to the potential as in its request to the Canadian Government for additional funding for "research" and then joining in a Panel giving advice that basically says research should not be done. As the Society should be supporting its Members, the people who actually suffer from the disease, and the people who provide the funds to keep the Society operating, then the Society should be listening to its Members and not the biased views of its Neuro advisers.

Sorry to those of you who seem to still support the MS Society, but all I can say is I beg to differ. I cannot in all honesty support a group of self appointed elitists who with no medical background are very happy to give medical advice, I cannot support a Group that will not support my Wife having the chance of getting some quality of life back.
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Postby 1eye » Mon Sep 06, 2010 10:06 am

Hear, hear.

They are being supported as the victims and families of victims have no other way. However perhaps a financial instrument, like a bond, would be better. It is certainly possible to improve one's life without funding science or research or drug manufacturers, if one has had enough information and pills. The proceeds of existing insurance policies and government subsidies could be much better spent than on the current crop of injectables, or trials of a new crop of immune-suppressing agents.

I had to take two flu shots last year. My immune system is confused enough as it it.
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Re: Why won’t the MS Society help people?

Postby HarryZ » Mon Sep 06, 2010 10:35 am

People may think the 'MS' Society has been here for a long time. In fact, though people of this generation seem to think history begins with them, and are "condemned to repeat it" [George Santayana], the MS Society is fairly new on the earth. There is an early history of it which shows not much has changed.


You are right in saying that MS Societies are relatively young in scheme of things.

I think it was about 70 or so years ago that any kind of research started on MS. Prior to that, doctors knew of the typical symptoms but did not know what they were dealing with. Back in the late 30's or early 40's, they injected a dog's brain with a foreign substance, saw the reaction and symptoms which mimicked MS, stated it was an auto-immune disease because of the reaction (what did they think would happen with a foreign substance injected into a brain?) and thus started the auto-immune research theory in motion.

I had an uncle who had MS in the 60's. If there was an MS Society that was active in Southern Ontario at that time, we certainly didn't know about it. It wasn't until the 70's that the Society's knowledge started to surface.

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Postby HarryZ » Mon Sep 06, 2010 10:44 am

Sorry to those of you who seem to still support the MS Society, but all I can say is I beg to differ. I cannot in all honesty support a group of self appointed elitists who with no medical background are very happy to give medical advice, I cannot support a Group that will not support my Wife having the chance of getting some quality of life back.


My support of the MS Society has certainly diminished in the last 10 years. The decisions and actions of their executives has left a very foul taste in my mouth. At the same time, I know some very dedicated people who work in local chapters and it's these people who provide a lot of real hands on support that I still admire. It's too bad their bosses live on a "different planet."

Harry
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Postby Cece » Mon Sep 06, 2010 11:42 am

I think the question is plaintative and to the point. Why won't the MS Society help people, when it comes to CCSVI? We expected them to help, we did not expect the choices they've been making this past year.

Now we dial our expectations down to zero, and even then we can get hurt, when they actively fight against CCSVI research by getting the Canadian government to reverse its announced funding plans.

If we feel like we've been dumped on by the MS Society, it's because we have been. I say we exit that toxic relationship. CCSVI Alliance and the Society of Interventional Radiology are on our side.
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Postby garyak » Mon Sep 06, 2010 12:07 pm

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Postby HarryZ » Mon Sep 06, 2010 1:53 pm

Cece wrote:I think the question is plaintative and to the point. Why won't the MS Society help people, when it comes to CCSVI? We expected them to help, we did not expect the choices they've been making this past year.


The MS Society does help people with MS but certainly NOT where CCSVI is involved. As I stated earlier, it's the top executives that determine the policy and direction of the branch societies. How this happens is outlined by Ashton Embry's article that another poster has posted a link.

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