This Is MS Multiple Sclerosis Knowledge & Support Community

Sorry, time to leave the board.

-finn

Sorry, time to leave the board.

-finn

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.

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.

Reingold has a reputation for being autocratic and his recent statements dismissing Barnett and Prineas' work on the grounds that the ABCRs work shows that his grasp on what constituates "good science" is poor. The NMSS spend a very great deal of money, in essence OUR money, on immunology.

The NMSS receive a lot of drug company funding - something they would be loathe to jeopardise. One can also question why the NMSS spend so much money on training immunologists and on training researchers on clinical trial methodologies. Surely, training immunologists is the job of universities and particularly inappropriate if MS is not an autoimmune disease.

The NMSS in general spend a lot of effort on promoting themselves as the official MS charity and have no intention of sharing their patch with anyone. Reingold says that he doesn't need people with MS telling him how to do his job. This contrasts starkly with the attitude of other MS societies particularly the UK MSS who adopt a very inclusive stance and have a panel of people with MS reviewing research grant applications. The NMSS needs to understand and listen to their customer base - that is us.

In view of the debate on what actually causes MS and the behaviour of Dr. Reingold, I would be far happier to donate to the research budgets of the UK or Canadian MSS than to the NMSS.

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.

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: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.

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.

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!

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

Willy,

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?.

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.

The alternative to that poor mouse is to start looking in areas that are not autoimmune related. I once read what one doctor called the definition of the word "stupid" when it comes to MS research...."doing the same thing over and over again and hoping for a different result". Sort of what the world of MS research has been stuck in for many years.

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.

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)

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.

What, you expect one article to change everyone's beliefs?

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.

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!

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!!!

Now Willy, could I take the "grow up" comment as being a personal attack on me....something you whined about earlier? Maybe I should consider reporting you to Arron!

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?

Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.

That's ridiculous, given that a non-ABCR treatment for MS would also enjoy orphan drug status.

One has to apply for orphan drug status..it doesn't come automatically and it isn't easy to get.

Hey, and I bet the drug companies are putting MS germs in the water. Poisoning our precious bodily fluids, huh Harry?

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!

Harry

In your opinion, how - and why - they use it?

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.

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...)

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.

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

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.

With this kind of arguments it would be always great to see at least some clinical evidence.

There is a long record of clinical trials showing significant efficacy for the ABCRs.

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.

If you want MSers to raise hell about the NMSS, then you'll have to make your case, not just spout insults.

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.

Please give us specific evidence to subsantiate your claims, 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!

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.

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.

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 suspect that the possibility that they may be right would cost a lot of people a lot of money.

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.

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!

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.

could I take the "grow up" comment as being a personal attack on me....something you whined about earlier?

Call it karma.

Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.

And don't dare provide any evidence for your claims, huh Harry?

Willy,

Please give us specific evidence to substantiate your claims, Harry.

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.

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.

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.

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.

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.

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.

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.

Call it karma.

I call it "the NMSS" action....change the rules when they don't suite you!

And don't dare provide any evidence for your claims, huh Harry?

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 )))

Harry

Please give us specific evidence to subsantiate your claims, 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.

I would be interested if you know anyone who has dealt with Reingold and has a positive opinion of the man.

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 not a big LDN fan myself. I like evidence-based medicine.

Just ask the NMSS and the ABCR drug companies....and don't anyone dare question or challenge their domain.

And don't dare provide any evidence for your claims, huh Harry?

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:

From http://www.medscape.com/viewarticle/477441
"Glatiramer acetate did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses."

From http://cjns.metapress.com/media/N0FDQLW ... AQJ25M.pdf
"Prevalence of lipoatrophy was much higher than expected. Possible reasons for this adverse reaction are explored and suggested treatment recommendations are reviewed. Lipoatrophy can be very disfiguring and is thought to be permanent, and the psychological impact can be significant. It is, therefore, important that patients be aware of the possibility of lipoatrophy, be able to identify it and discontinue injecting in areas where it is identified."

From http://www.medscape.com/viewarticle/476447
"The efficacy of interferon on exacerbations and disease progression in patients with relapsing remitting MS was modest after one and two years of treatment. Longer follow-up and more uniform reporting of clinical and MRI outcomes among these trials might have allowed for a more convincing conclusion."

From http://www.ncbi.nlm.nih.gov/entrez/quer ... s=15185427
"Interferon beta-1a therapy (22 microg per week) administered for 12 months during 1998/99 in Croatia showed no statistically significant VEP changes in the group of relapsing-remitting multiple sclerosis patients. However, VEP may reveal evidence for asymptomatic deterioration."

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

Hi Bill..
One way to "channel" this energy is to arm thy self with knowledge, and to do something that very few people do, when the vaste majority of people who have any type disease go to thier doctor or doctors, who treat them, they sit and listen and then take thier presciptions and say thanks and leave.

Would'nt it be interesting if when your doctor told you to do this for your illness, someone actually stated " would you mind providing me with the information that would validate exactly what this will do for me"..

Some may read this and think its silly, but if we all stop and think how many times we have been to a doctor and done just exactly what I stated, we listened, we took the script, we said thanks and opened our wallets, never once questioned what or why.

It a hard situation considering until the doctor gives us something, in most cases we cant read the script in his office and know exactly what it is, (non referal to doctors writing skills 0_o) , or it is not till we have the medicine that we can look it up and see exactly what this stuff is and does, by then someone has paid for it..

The best thing someone can do to channel thier energy, is to arm themsleves with knowledge, take control of your specific situation and your life, read and study and listen very very closely to those who are dealing with the same illness they are..

And yes, it is a true "overload" of info on anything this multi leveled and complex, but with diligence and effort, ( and perhaps some good Kentucky Bourbon every now and then) the knowledge is there..

Philip

Sorry, time to leave the board.

-finn

finn wrote:So actually we were talking about the same way to use it.

I think so.

finn wrote:So it would be easy to show it also to rest of us, wouldn't 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.

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 will have to reject it, then. Sorry.

Anonymous wrote:I would be interested if you know anyone who has dealt with Reingold and has a positive opinion of the man.

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 think there is substantial objective evidence for the overhyping of the ABCR drugs.

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.

Somehow, these claims are embraced with open arms. Other alternatives like bee stings or yanking all the fillings out of your mouth, are never put to the sort of rigorous analysis focused on drugs like the ABCRs. My attitude is that I apply the same standard to everything.

Hi! I'm new to this Board, but I have been reading your discussions here with great interest, many of which reflect my own sentiments! Someone mentioned "advocacy", and I not only support advocacy, but am also becoming "active" myself. I respectfully hope I'm not jumping in here where I shouldn't, but I wanted to share something with you and ask for your opinions. I apologize for the length of this initial post. I will not post my actual research (unless you would like to see my supporting and substantiating evidence). I did receive an encouraging response from the Research/Funding Department at the National Headquarters of the NMSS in New York, and will be more than happy to post that, also (if these type of postings are allowed on this site.) I believe you might find that interesting, also. This research of mine began with a "challenge" from my former neurologist, and after many hours and weeks of pouring over actual laboratory results, (and combined with my drastic rapid unexplainable neurological recovery) once I found out what I did, I then couldn't just ignore it, and have been pushing for a clinical trial. My former neuro was also astounded, but could find no flaws in my findings and could not explain my rapid improvement. The drug that I am about to mention has such a probable BROAD spectrum of action (both therapeutically AND symptomatically) for at least one or SOME types of MS, that I truly believe it needs to be looked at closely. As you all mentioned, thinking outside the box is something that I, also, feel is needed at this time in MS research, and my research (all of which can be substantiated) truly reflects that idea!

Again, I would really like to (and will) post my actual research paper and/or the response from the NMSS here if you would like to see it and if it is allowed. The more "minds" and discussions that become involved, the better. Thanks for letting me jump in here.

I am posting below excerpts of my "intro" to my research that I have been sharing with researchers. For now, I am deleting the name of the drug, for a couple of reasons (in case it's not ok to post it, AND because of the fact that it has not even been LOOKED at or tried for MS before, except by me.) These individual findings have never before been compiled into one nor ever been correlated with possible efficacy theories for MS, until I stumbled on it and put it all together.

Deb

*****************
I am on a mission of sorts. I have MS, and I have stumbled onto a medication that MAY help MS - not just symptomatically, but possibly via direct disease modification. I have examined literally thousands of individual laboratory research publications. All I can say is that I sincerely hope you will take the time to read my research findings, all of which I believe can be collaborated by medical experts. To date, I have sent my findings to my own former neurologist (who comes from the Mayo Clinic and is a well-known PhD), to John Hopkins University/Hospital, to Aventis Pharmaceuticals, to the National Multiple Sclerosis Society, and have provided a copy to my primary care physician. Additionally, some MS friends in Wisconsin with medical connections are also pursuing this to get someone's attention. So far, no one can or will tell me that I'm "wrong", which in itself tells me something. And the more research I do, (even to prove myself wrong), the more I find that substantiates my suspicions.

I am attempting to get someone's attention to at least TEST [drug] for MS in an actual clinical trial. It's a fairly safe drug, and therefore, should not be too risky. This is something that “could" be taken DIRECTLY to clinical trial due to the fact that it has been on the market for so long, and so much research has already been done on it. The problem has only been that all the research has been individual research for reasons OTHER than for MS.

After performing a very extensive comparative and statistical analysis, I believe [drug] shows real promise as a possible therapy for MS and/or at least some "patterns" of MS (not only for MS symptoms or for associated depression), but it needs to be proven (or not, as the case may be). My analysis also appears to show that [drug] may be about the only currently available drug with the particular combination of effects as I will explain in the enclosed narrative. The hardship right now is to convince someone to take a close look at it, or to explain to me "why not".

My brief over-simplified information (based on many hours of research, personal experience, and plain old fashioned "gut feeling") should suffice to inform you of the reason for my interest and activism in following this path. Several other research findings (such as Dr. Moses Rodriguez's findings regarding killer T cells; Sam David's, a McGill University Health Centre neuroscientist, recent article regarding cPLA2; Dr. Fridolin Sulser's recent pharmacological findings with regard to effects on immunotherapy; and recent findings from the University Hospital Groningen, Netherlands regarding norepinephrine and the pathogenesis of MS; to name a few) appear to uncannily back up my hypotheses and findings. A common "theme" appears throughout my research on MS, which brings me back to [drug] time and again.