Posted: Fri Jun 18, 2004 1:57 am
Sorry, time to leave the board.
-finn
-finn
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Very true. The NMSS is by far the largest non-profit funder of MS research - I don't have the figures to hand by it's something like NMSS at $30M, Canadian MSS at $7M and UK MSS at $2M. Every other MSS put together is less than $1M. This gives Stephen Reingold enormous international power to determine what work gets done. He is a big proponent of the autoimmune model.HarryZ wrote:I don't think so! In North America, the NMSS has a huge influence on the direction that MS research is going. Most docs don't have the time needed to look at every single MS item that surfaces and they rely on what the NMSS has to say in both press releases and in their publications. Anything of any consequence that comes up with MS...you will soon see a comment by Dr. Stephen Reingold who is one of their kingpins.
I am concerned that the NMSS controls over 75% of the world-wide non-profit research spend. This gives the autocratic, autoimmunist and drug-company puppet, Stephen Reingold, far too much power. Someone has to wrest power away from him and the best way to do that is for us, the people with MS, to raise hell.willysnout1 wrote:I am concerned about the proliferation of MS organizations. Each organization has separate fund-raising and administrative expenses that consume money that would otherwise go for programs including research.
Stephen Reingold refuses to deal with any non-MSS organisations and sees other MSS organisations as subsiduaries. He is scornful of us, his client base, and of the inclusive methods employed by other MSS organisations. Unfortunately, because of the budget inequalities, he can push people around.willysnout1 wrote:Because I favor competition in general, I am sympathetic to the idea of an alternative to NMSS when it comes to private funding of research. But I think it's time for the non-NMSS groups to collaborate with each other to minimize overhead expenses, agree on goals and fund them in the most efficient manner.
I would think that after reading the many messages in this thread about the effectives of the CRABs and the serious doubts expressed about them by some MS researchers and the fact that only about 1/3 of the users get about a 1/3 reduction in exacerbations (close to placebo effect), I doubt one could say that the CRABs can be considered to "work" in MS. Add the side effects and cost and you get what Dr. Behan is saying....the CRABs are based on bad science and a lot of wishful thinking.Willysnout1 wrote:Depends on what you call "worked." There's no cure, but there is solid evidence to indicate that the ABCRs delay the progression of MS in a significant percentage of the patients who take them. In any case, what's the alternative to the EAE model?.
You just have to read Dr. Bowling's comment on LDN done through the NMSS and the "MS adviser" to the UK MS Society to get an idea of how some of these docs respond to alternative theories. It's not a matter of saying that clinical trials haven't been done to prove these other drugs will work but they take it a step further and immediately condemn them as going against the current MS theory.(still unproven BTW)What "wrath" are you speaking of? Everywhere I look I see suggestions that MS might be more than one disease and that it might be caused or enhanced by viral infections. Seems to me that if someone has a different hypothesis they ought to get to work testing it and coming up with approaches based on their set of guesses. Proof's in the pudding.
Not at all...but perhaps what these two very reputable MS researchers uncovered might start to change the thinking patterns of the established MS medical world. I suspect that the possibility that they may be right would cost a lot of people a lot of money.What, you expect one article to change everyone's beliefs?
At least the cancer drug companies look in other directions when their drug fails on cancer or AIDS. Look at Betaseron...didn't work in cancer, didn't work in AIDS so they gave it to MS patients!!!You mean like the companies that make drugs for cancer that people keep dying of anyway, or the companies that make drugs for AIDS that people keep dying of anyway? Good God, Harry, you need to get used to the fact that at the present time MS is incurable. We'd all like it to change, but it has not changed yet. There are all kinds of incurable diseases out there that are treated with drugs that kinda sorta work. Grow up!
Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.Yup, the ABCRs have orphan status. As would any other drugs for MS. There's still lots of dough to be made, wouldn't you say, Harry?
One has to apply for orphan drug status..it doesn't come automatically and it isn't easy to get.That's ridiculous, given that a non-ABCR treatment for MS would also enjoy orphan drug status.
With comments like that, Willy, it's quite apparent your focus of attention is to try and ridicule me. I think the other readers in this discussion see right through your shallow comments and intentions. I really don't have to add much else...you are doing that all by yourself!Hey, and I bet the drug companies are putting MS germs in the water. Poisoning our precious bodily fluids, huh Harry?
I could easily be wrong on this, but I believe they use EAE as a screening tool. They can't use humans as a screening tool at the very beginning stages for ethical reasons.In your opinion, how - and why - they use it?
Montel Williams is a talk show host on American daytime television. He has MS and talks about it a lot, and along with a couple of other celebs has become a poster child for the disease. As for Boston Cure Project, yes I'm sure the high admin expense is a function of them being small and new but it is still notable.That was in 2002. I suppose it was only the second year they were running the project. And I wouldn't say that Art Mellor equals to Montel Williams (who ever he is...)
I'm not as inclined to project sainthood onto the Canadians or hope for it from the Finns. Besides, the drug business is multinational so the ABCRs aren't "American." Rebif comes from an Italian company if I'm not mistaken.Yes, I also prefer facts instead of conspiracy theories. But it seems to me that Canadians are really trying to find better treatment options than the ABCRs. They are not that concerned about the drug's ability to make a lot of money to its manufacturer. The only thing that seems to count in Canada is gaining good results, and I would like to see more of the same attitude also here in Finland
There is a long record of clinical trials showing significant efficacy for the ABCRs.With this kind of arguments it would be always great to see at least some clinical evidence.
If you want MSers to raise hell about the NMSS, then you'll have to make your case, not just spout insults.I am concerned that the NMSS controls over 75% of the world-wide non-profit research spend. This gives the autocratic, autoimmunist and drug-company puppet, Stephen Reingold, far too much power. Someone has to wrest power away from him and the best way to do that is for us, the people with MS, to raise hell.
Please give us specific evidence to subsantiate your claims, Harry.Stephen Reingold refuses to deal with any non-MSS organisations and sees other MSS organisations as subsiduaries. He is scornful of us, his client base, and of the inclusive methods employed by other MSS organisations. Unfortunately, because of the budget inequalities, he can push people around.
Well, they are "official" in a sense, i.e., they're the 20-ton gorilla who everyone really looks to in the MS world. Harry, it would really help your case if you'd set forth a bill of particulars with evidence attached. It's going to take more than a conversation you had at a conference with someone who sounded believable to you, Harry.I hate their maxim - "The National Multiple Sclerosis Society...One thing people with MS can count on." They shouldn't be in the business of self-promotion. Frankly, with Reingold in charge, the only thing we can count on is the progression of our disease. I also hate the way AOL lists them as "The offical MS site". In what way are they official? MS is not a major sporting event, it's a disease and if anyone owns it, it's us not the NMSS!
I agree that the NMSS's statement about LDN was inacucurate. I've discussed that on the LDN board and won't repeat myself here.If you look at the overall concern about LDN users it's the fact that they want clinical trials done for the drug but when you get replies from some docs through the NMSS like the ones that have been issued, it becomes very difficult for this to happen. Reading from another message, the NMSS controls about 75% of the MS world and when they make those statements, it has a huge impact.
Yes, but they would also save a lot of people a lot of money, too. And some of those people are pretty powerful, such as insurance companies and governments that would rather not be paying out disability checks.I suspect that the possibility that they may be right would cost a lot of people a lot of money.
AZT was a cancer drug that didn't work in cancer and they gave it to AIDS patients. It kept a lot of people alive until some better drugs came along.At least the cancer drug companies look in other directions when their drug fails on cancer or AIDS. Look at Betaseron ... didn't work in cancer, didn't work in AIDS so they gave it to MS patients!
Call it karma.could I take the "grow up" comment as being a personal attack on me....something you whined about earlier?
And don't dare provide any evidence for your claims, huh Harry?Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.
Sorry to disappoint you on this one, Willy, but that wasn't my comment about Reingold. It came from another person who I guess shares some of my points of view.Please give us specific evidence to substantiate your claims, Harry.
Sorry again, Willy, not my comment either. Please take more care in quoting the right person. It seems you are more concerned in trying to give me a hard time.Well, they are "official" in a sense, i.e., they're the 20-ton gorilla who everyone really looks to in the MS world. Harry, it would really help your case if you'd set forth a bill of particulars with evidence attached. It's going to take more than a conversation you had at a conference with someone who sounded believable to you, Harry.
That's better )) Two different groups of people we are talking about here. The people who have the money and the power now are the ones who don't want to lose it and will do whatever it takes to keep it. They are the ones who stand to lose the most.Yes, but they would also save a lot of people a lot of money, too. And some of those people are pretty powerful, such as insurance companies and governments that would rather not be paying out disability checks.
And the AIDS and cancer researchers continue to look in other avenues and different areas in their quest to find something that works. The established MS researchers have limited themselves to the same theory now for over 50 years and continue to condemn anything that suggests a different approach.AZT was a cancer drug that didn't work in cancer and they gave it to AIDS patients. It kept a lot of people alive until some better drugs came along.
I call it "the NMSS" action....change the rules when they don't suite you!Call it karma.
I know what happened and I know exactly what was said and by whom. Perhaps all the nitty gritty details of what you are wanting to see will become available in the not too distant future. In the meantime, you can believe want you want. But as you have been reading in this thread, I'm not the only one who has no respect for the NMSS. You can take up these other people's ideas with them....just try and remember who said what when you reply )))And don't dare provide any evidence for your claims, huh Harry?
I'm not called Harry. I can't give you specific evidence of the facts that I mention because it would damage the organisation I work for and other people and their organisations who I would have to quote. I'm not prepared to do that - that's why I'm posting anonymously. You'll just have to either accept or reject what I say on face value.Please give us specific evidence to subsantiate your claims, Harry.
I'm not a big LDN fan myself. I like evidence-based medicine.I agree that the NMSS's statement about LDN was inacucurate. I've discussed that on the LDN board and won't repeat myself here.
I'm still not called Harry but I think there is substantial objective evidence for the overhyping of the ABCR drugs. I think you'll have to read it for yourself, but for starters look at these articles on IFN-beta and glatiramer acetate:And don't dare provide any evidence for your claims, huh Harry?Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.
Hi Bill..All,
the purpose of my original post oin this thread was to encourage all of us to look at ways that we can change some of these frustrating issues instead of just being frustrated. So far, there has been very little discussion on that, and a lot of the same old complaining about the status quo. There'a a lot of frustration out there, obviously. So, how can we channel all of that energy into changing the status quo insead of just sitting passively, being angry?
Thanks
Bill
I think so.finn wrote:So actually we were talking about the same way to use it.
Because I use Avonex, I follow it a lot more closely than the other drugs. Here is a link to a posting on a different bulletin board that listed links to Avonex studies.finn wrote:So it would be easy to show it also to rest of us, wouldn't it?
I will have to reject it, then. Sorry.Anonymous wrote:I can't give you specific evidence of the facts that I mention because it would damage the organisation I work for and other people and their organisations who I would have to quote. I'm not prepared to do that - that's why I'm posting anonymously. You'll just have to either accept or reject what I say on face value.
I don't know anyone who knows anyone at the NMSS. I'm not involved in any way with their organization or internal politics, and I truly couldn't care less about the personalities.Anonymous wrote:I would be interested if you know anyone who has dealt with Reingold and has a positive opinion of the man.
Seems to me that the drug companies are required to tell the good, the bad and the ugly during and after the approval process. I don't think I'm under any illusions about the Avonex that I take. It might slow things down, but it's not a cure and it won't fix any damage that's already been done. To me, it's the purveyors of the alternatives that are guilty of the hype. LDN is a great example. The claims made for it are outrageous, but they unregulated because it's being used off-label.Anonymous wrote:I think there is substantial objective evidence for the overhyping of the ABCR drugs.