This Is MS Multiple Sclerosis Community: Knowledge & Support

I have read the article on This Is MS accusing the NMSS of lying about low-dose naltrexone. I think the NMSS article is inaccurate for at least some of the reasons This Is MS has listed, but an inaccurate statement is a "mistake" unless there it is intentional. This Is MS presented no evidence that NMSS intentionally misled anyone.

Until such evidence is produced, I think it's going too far to call the NMSS article a lie. That sort of language is inflammatory (pardon the pun) and intemperate. Without proof of intent to mislead, I think it undermines the credibility of This Is MS to publish the accusation.

Some of the inaccuracies cited are trivial, such as the NMSS's misdating of the FDA's approval of naltrexone for addiction treatment. This could easily have been an oversight. Other citations are matters of opinion, such as This Is MS's negative view of the ABCR drugs. Which brings me to another point, the following pledge by This Is MS:

We have no corporate "unrestricted" grants, no big pharma allegiances, and no ties to any medical hospital. This site is funded out of pocket, born out of a desire to combine interests in web communities, personal experiences with people living with MS, and research skills into an entity that will help people whose lives have crossed paths with MS in some way. You will never find an agenda being pushed here.

The article accusing NMSS of lies and fraud, and the attack in that article on the ABCRs, are indicative of an agenda, namely to cast doubt on currently approved treatments and those who support them, while promoting untested alternatives. It makes me wonder why those the founders of This Is MS have chosen to remain anonymous, and what other commercial or organizational affiliations they might have, if any.

Are any of the founders or operators of This Is MS members of the Church of Scientology? It has conducted aggressive campaigns against pharmaceutical companies. Are any of the founders or operators of This Is MS connected in any way to other entities that might stand to benefit from non-standard alternative therapies promoted on the website? I'm not making any accusations, I am asking the questions.

All of that said, I share This Is MS's concern about the inaccuracy of the NMSS statement. My issue is the way in which that concern has been stated. I use Avonex at the present time. I don't use LDN. I regard LDN as unproven but interesting, and I think it ought to get an independent double-blinded trial against placebo to see if it works. But that doesn't justify this site's jihad against the NMSS, which I think does outstanding work.

Sorry, time to leave the board.

-finn

Thanks for the post, willy. I agree with you in that I believe the NMSS society does good things for people. I had a 45-minute counseling session over the phone with a support person who happened to get my call a couple of months ago; he did an excellent job in helping to talk me through a stressful time when I was having an exacerbation. For that, I am greateful to him and the NMSS for making phone support, counseling, and reference services available. I think that the frustration (and anger) at the NMSS comes about partly because they just don't seem to believe us when we say that LDN works for us or be champions for a deeper look at LDN.

per NMSS (posted plainly on www.nmss.org): "The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS.", and (posted on their website as well) "The National MS Society is the largest private sponsor of MS research in the world. We support research and training projects aimed at finding the cause of MS, better treatments, and a cure. The MS Society also identifies promising areas of research and promotes activity in those areas."

My question is:

With so many MS patients believing that LDN works, WHY, regardless of its' therapeutic roots, doesn't the NMSS society support or advocate more formal research in this area? If one is to truly believe that the goal is to 'end the devastating effects of MS', then who cares how that is accomplished? Many drugs were discovered accidentally when research into a wholly different disease was being conducted...Penicillin...MAO inhibitors...Viagra!

I think the frustration among many of us who prowl this site is that through word of mouth, and personal experience, many of us have seen a potentially effective therapy that costs 1/50th of the monthly cost of an ABC drug. Because the pharmacology of LDN appears on the surface to be wholly contradictory to what the traditional neurological community believes should relieve MS symptoms, its use is dismissed as quackery and we are lead to believe that we are gulping snake oil at bedtime. We are told that NO, you should NOT be feeling better by taking this drug, which may affect the body chemistry of MS patients in ways that don't fit any of the assumptions that we've made a foundation of defining how MS works for the past 50 years.

How can it do anything but further our knowledge about the disease for a reputable MS center somewhere in the US to do some real scientific research and try a 6-month or 1-year double-blind trial and look at the results? That's really what all of what we're asking. I volunteer.

Dear Willysnout,

Thank you for your message. For the most part, it was well thought out, clearly written, and asked tough, good questions. You are the type of person we would love to have participating on our site, and quite honestly, I hope you will join us on a continuing basis.

There are two sides to every story and we fully expected to have to defend our article in the face of critical scrutiny. To be clear, we unequivocally stand behind what we have said regarding the National Multiple Sclerosis Society’s article, “Update on Low Dose Naltrexone." The NMSS' article was undoubtedly meant to scare people away from a promising MS therapy that most rational people in the MS community, including yourself, admit deserves at least a small trial.

Before we go any further, let us make it clear that the local chapters of the NMSS do great work for the masses and we do not have any issue whatsoever with them. The head organization is the one that seems to need realignment with its stated mission.

When an organization with as much bulk, influence, and intellectual capital as the NMSS comes out and makes a statement on a treatment—any statement on any treatment—the effects on the MS community are tremendous. To many people, particularly general practitioners and busy neurologists, the word of the NMSS is as strong as the word of the Surgeon General. As such, every claim in an NMSS article should be carefully weighed, checked and double checked, and then checked one more time, because once it is published, people will take it at face value (what doctor is going to look up their 20 year-old reference citations?) The upshot of it is that the NMSS' opinions, for better or for worse, affect MS'ers decisions, and most disturbingly, their choices. This is particularly true when the NMSS is speaking about an experimental treatment that they a) clearly have no expertise on, and b) where people are looking to them to take a leadership role and provide soundguidance on.

Let us take a moment to understand the distinction of what we are claiming: it would have been perfectly fine, and even commendable, for the NMSS to acknowledge the interest in LDN, remind people that there are as yet no clinical studies for LDN and MS (and as such it could very well be dangerous to take), and then make a small concessionary statement, however vapid, that anecdotal responses are positive and merit further investigation. That could have been it—and that should have been it. Instead, they took it a step further and published what was essentially garbage—a propaganda piece with little attention to detail that will illegitimately affect countless thousand’s of people’s opinions. The NMSS slogan is rather revolting when considered in the context of the article: “The NMSS… one thing people with MS can count on!” If our community's only hope is an organization that publishes slanted articles with eggregious factual errors, we are in a state of despair.

To summarize to this point, we claim that the NMSS had a clear goal in mind when they set out to write this “update”—to discredit LDN as a possibly viable MS therapy, and to furthermore dampen the interest in the drug. Backing for this claim comes from the simple act of reading their article, which demonstrates:

1) Making controversial statements without checking the facts

Common sense states that when you feel strongly about a controversial topic, you better know your facts as your opposition certainly will. The incredibly sloppy nature of the NMSS article evidences that they did not really care about whether they were getting their facts right so much as they got their chosen message across-- that LDN is unproven and dangerous.

You mention that some of the errors we discussed were trivial—Willy, in an article that is exactly four short paragraphs long, yet with a mile of sweeping assertions (that LDN is both illegitimate and dangerous), a responsible organization has zero margin for error.

2) Deliberately presenting only one side of the story

A simple search for “LDN clinical trial” on any decent search engine will bring up the trial currently underway for LDN and Crohn’s disease as the very first result. Crohn’s disease, as I am sure you know, is an autoimmune disease, which is what the NMSS classifies MS as in this article. Is not this development, which directly contradicts the assertion that “no clinical trials for LDN have been undertaken,” worthy of being mentioned? If the NMSS had any intention of providing a fair evaluation of LDN, this fact certainly would be included, along with the example research citation we provided of LDN being used to treat tumors with promising results. This citation, amongst many others, took all of one minute to find on PubMed.

The point is that finding information that showed LDN had been/was being clinically evaluated was incredibly easy, and this important and relevant fact was not only ignored, but claimed not to exist! If an organization is interested in providing a fair view to their constituency, and the information to balance the negative claims are easy to find, one must wonder why it is not mentioned or, at the very least, alluded to?

As for our "jihad" against the NMSS, you are mistaking a single battle for a war. Truly, we have been gravely disappointed that there is an affordable, easy-to-use drug that anecdotally seems to help the vast majority of people-- and the NMSS, instead of doing all it can to get to the bottom of this, is holding a silly party line that LDN can be useless and dangerous without expressing any interest in providing resolution. Since they receive a great deal of the funding for MS research ($160M USD annually), they need to be held accountable to the people they serve, period. It is nothing short of a tragedy if even one person progresses one point on the disability scale because the NMSS, for unknown reasons, dragged their feet on a possibly potent treatment. We are thankful for what they do, and we are clamoring to make them improve.

Finally, allow me to address your questions about our site, This is MS.

First of all, there are no members of the Church of Scientology on our team, although quite frankly someone's choice of religion really has no bearing on whether they can help improve the state of multiple sclerosis research or not. You should know better than that, and we do not appreciate being put in the awkward position where we have to answer such an irrelevant question. In a strange way, we are quite pleased that this rather ridiculous assertion was the best possible "evil" association you could come up with when faced with the dedication of our site to help MS patients without regard for dollars and bias.

Second of all, there is absolutely no agenda here against the large pharmaceutical organizations. If you spent a little time on our site, which I sincerely hope you will, you would notice that EVERY legitimate treatment gets attention. Irrespective of bad press or good press, if it affects people with MS, we give it "air time." As a case in point, we have been major cheerleaders for Antegren, which is funded by pharmaceutical giants Biogen and Elan, because we think it will significantly advance the state of MS treatment (our latest story on Antegren going for early FDA acceptance was published last month, and began with the comment: "What we've all had our fingers crossed for-- it's happening!").

As for your impression that we have an agenda to "cast doubt on current treatments," I will reiterate the above paragraph, and as an example of how incorrect the statement is, show you that one of our most recent stories ran with the headline entitled "10 year Copaxone study proves it is remarkably effective." We have zero bias against any given treatment-- if it works, we are behind it, period, end-of-story.

Finally choosing to remain anonymous has been a difficult, controversial decision, but we still think it is a wise one. While it exposes us to questions such as yours, it also allows us to keep the focus on MS and the community, and not worry about our own egos. A few of us have revealed our identities to a number of people in the community who choose to interact with us personally, while the rest of our group truly enjoys volunteering "without credit." Rest assured we do not have affiliations with any other for-profit organization, and exist only to help bring this disease to its end.

I will say it again: This is MS is an unbiased site dedicated to eliminating MS, in whatever form that takes. [url=http://www.thisisms.com]This is MS[/u] ultimately wants to become useless when MS becomes an easily-treatable disease.

I hope this (rather long) message addresses your concerns. As I said above, we would very much benefit from your participation in our community. I do not know if you would have an interest in this, but we would be particularly pleased if you chose to pursue some of your personal interests in MS treatments and put together an article or two which we could publish for the community at large. If you have further questions, please feel free to get into touch with us via e-mail-- a long drawn out public war of words is a waste of everyone's time when our "enemy" is really MS, not each other.

Best of luck to you,

-AB on behalf of the the This is MS team
Please visit our community: http://www.thisisms.com

(Note: I screwed up on the registration process and had to re-register. "willysnout" and "willysnout1" are the same person.)

I don't want to be guilty of the same thing I took issue with, which is what I viewed as the tossing about of reckless accusations concerning motives, nor do I want to get into an online flamefest that spirals out of control. So I'll make a couple of comments and hopefully we can lay this to rest.

I think This Is MS was rightly concerned about the content of the NMSS article. It seems to me as if it was inaccurate. My issue was with the site's imputation of dark motives to the NMSS on the basis of a single article, however sloppy. I think words like "fraudulent" and "lie" ought to be reserved for people and institutions who have demonstrated a pattern of behavior, or for cases where there is direct knowledge of the motives, or for a very few cases in which the motive would be obvious by examining the context surrounding a statement.

I don't think the NMSS fits any of those categories. People can make mistakes, and so can institutions, without those mistakes being cause to haul out such heavy artillery. In my mind, the language of the site's attack on the NMSS article makes it less likely that I will regard you as a credible source of information. This is unfortunate, because I happen to agree with your basic point that LDN deserves a full clinical trial.

As for my query on the Church of Scientology, I made it because that organization has a well-documented history of making extreme attacks on the pharmaceutical companies, and of minimizing or disguising its participation in web sites that make extreme attacks on established phamaceutical treatments. As for the other material regarding your site's objectivity, I accept it and appreciate it.

And since we're in disclosure mode here, I do not and never have had any business or other connection to a drug company or that industry. I have MS and take Avonex, but if a better solution comes along I assure you that I wouldn't miss those weekly injections. More generally, I am acutely aware that MS is a serious disease of unknown etiology and without a cure. We're all looking for information of all kinds, but in doing so it is very important to keep our heads screwed on straight.

Willy,

Unfortunately I have seen some of the "inside" operation of the NMSS in the past couple of years. The NMSS knows EXACTLY what they are saying when they make press releases and did as much when they commented on LDN. You would think that they would take the time to research some of the information that they write but they don't always do this. When they want to make inflamatory statements about something they don't like or believe in, they will do so without blinking an eye.

One only need to read their initial press release on the Prokarin double-blind study when The MS Journal released the clinical trial information to the public. The NMSS didn't even have a final copy of the trial in their hands nor did they attempt to contact the doctors that were involved in the study but they went ahead and issued their comments anyway. Some of the statements they made were simply wrong but that didn't matter to them! They wanted to "slam" Prokarin and they did. They even went so far as to talking ABC News out of doing a national news story on the trial.

I know it is difficult to think that the NMSS could operate this way but they do indeed. I've seen it first hand and am as disappointed as anyone that an organization who professes to be the "pillar of light" for MS patients is capable of operating in such a shoddy fashion.

Harry

Sorry, time to leave the board.

-finn

Please tell us what you mean by this, i.e., give us details of your "insider" status. Were you "inside" the outer lobby or were you inside the boardroom? Inquiring minds want to know.

Willy,

The inside incidents that I am referring to have to do with how some members of the NMSS board dealt with the publishing of the double blind Prokarin clinical trial in The MS Journal.

The NMSS didn't like Prokarin, didn't like Elaine Delack and didn't like the fact that The MS Journal published the trial. They issued a similar type of press release on the Prokarin trial to what they issued on LDN a few weeks ago. It was filled with incorrect assumptions and wrong statements but their sole intention was to discredit the drug and the study.

They went so far as convincing ABC news to not run a national news story
on the trial. They did this without even having a final draft of the study in their hands. They had an early draft of the study and then tried to lie to Elaine Delack that it was her company's publicist that faxed them the trial information. In fact, it was ABC news who provided the early draft to the NMSS on the day the trial was published. ABC was told not to send this incomplete trial data to anyone but to use it for their own immediate resources. When the NMSS was later pressed as to where they got this early draft they tried to pin the blame on EDMS (Elaine's company) and were caught in the lie when ABC's fax number appeared on the fax that they waved in front of Elaine's face during a meeting.

The NMSS had called EDMS on the day the trial was to be published and asked for a copy of the trial. Elaine didn't even have a copy of the trial and told them she would try and get one for them. At a later meeting, the NMSS denied ever making such a request, much to the disgust of the EDMS

Elaine met with the NMSS a number of weeks later about the trial. I am not going to reveal all of the information that took place in that meeting but can only relate it was the NMSS doing their typical "tapdancing" when caught in operating the way they were in regard to Prokarin and the trial.


It was not surprsing when I read the press release that the NMSS issued on LDN. Same pattern as what happened to Prokarin...same pattern when they don't like something or someone.


Harry

Harry, in your earlier message you stated: Unfortunately I have seen some of the "inside" operation of the NMSS in the past couple of years. You are implying a level of private knowledge not held by others. My question concerns the source of your information: What special access did you have that gives you authority to label the motives of the NMSS as you have done? Did you work for the organization or have some particular dealings with it? Did you have an interest in the outcome of the NMSS's attitude toward Prokarin?

Anyone can offer their version of reality for examination by others. I'd like to know why yours has any particular validity. At this point, all I can really do is judge by your logic and your tone, and on those metrics I'm a skeptic. What raises my doubts in particular is your sweeping characterization of the NMSS's motives, and your underlying bitter tone. That said, I'm interested in the factual side, or more to the point your version of the facts, along with any qualifications you might have that would lend credibility to an alternate version of the facts.

Ball's in your court, Harry. And don't take any of this personally. If I really thought you were all wet, I wouldn't have bothered to take the conversation this far.

[quote="willysnout1"][quote="HarryZ"]Willy,

Willy,

OK, I have the "ball" now )))

First of all, I don't have any business or financial interest in Prokarin but I have followed the drug very closely since it got introduced over 4 years ago. I have kept in touch with the company (EDMS) that produced it and in Prokarin's early days of introduction, followed how the NMSS dealt with it and EDMS. My source of information is from the company who have had numerous dealings with the NMSS for the past 5 years. A lot of the information I have is private and I have only related that which I feel is necessary. I suppose that you can choose to either believe what I have stated or not believe me. It's up to you. But those who have read my posts in several other MS forums know that I don't tell lies and I don't spend time with any kind of nonsense. I've always used my real name, always make my private e-mail address available to those who want it and will discuss almost anything to do with MS.

I can assure you that the information that I have related on this forum about the NMSS and EDMS is all very factual and did indeed take place.
I have absolutely nothing to gain by "making up" such information should I have done that but I simply didn't.

There is other information about the NMSS's motives but I simply won't relate that info on this forum. I will, however, give you one bit of info on how they operate. About 5 years ago EDMS decided to conduct seminars about Prokarin across the US. They would have an announcement in the local paper and then have the seminar which was conducted by Elaine Delack and Dr. George Gilson, who was extremely knowledgeable about the physiology of how they thought Prokarin worked. The very next day after each seminar, the NMSS would publish an article in the same newspaper, making sarcastic and damning statements about what was said on Prokarin by Elaine and Dr. Gilson. The NMSS followed them across the country doing this.

Yes, I have a bitter tone when it comes to the NMSS. They apply their own rules differently to suite the situation. An example of this is their criticism that the Prokarin trial only had 29 participants in it and therefore could not be taken seriously. Yet, in their own publication a few years earlier, they made a statement that histamine was proven to not be effective in treating MS symptoms. They quoted a study done in California that had provided this proof....a study that involved 20 patients and when checked by EDMS, was discovered to be a horribly conducted trial with terrible guidelines!!!

And no, I'm not taking offense at all by your questioning of my sources and motives. To be honest, I would likely be doing the same if the shoe was on the other foot. I can assure you, however, that I have not made up one word of this information and when it comes to MS, I certainly don't play games.

I guess this means the ball is back in your court. )))

Take care.

Harry

I hope you'll understand my skepticism toward someone who sets forth an alternate version of reality, including pointed accusations concerning the motives of those he disagrees with, based on "private information" that he freely alludes to but does not disclose. This isn't personal on my part, Harry. For all I know, you're absolutely correct. But my instincts are flashing a red light here.


Why not? You've impugned their motives in a very direct way. You ought to be willing to back up your allegations.


Do you have some examples of this? The reason I ask is that you've used a lot of absolutist language about the NMSS and what you perceive to be its motives. Until I can judge for myself, I must say that I'm quite reluctant to believe that the NMSS made "sarcastic and damning statements" about anyone. Do you have some links?


If what you say is true, then there would certainly seem to be an inconsistency involved. But again, I must say that your approach here has made it really hard to take you all that seriously. A bit of (believe it or not) friendly advice: Back off the adjectives, and give people more nouns and verbs. While I am favorably disposed to the NMSS, I'm not ruling out the idea that they have acted as you think they have, and for the reasons you say they have. However, I'm not going to accept it on the basis of your vitriol; indeed, your bitterness makes your case harder to sell.

To put it differently, Harry: Are you trying to persuade anyone of anything, or are you just blowing off steam? If it's the latter, I would like to suggest that you reconsider. After all, you appear to have some serious points to make. Why not make them seriously? I am genuinely interested in what you have to say. After all, I have multiple sclerosis, too, and I am playing for keeps.


Time for a reality check, Harry. Your promise of pure motives plus $1.50 will get me a cup of good coffee out here in Seattle. Don't tell me how honest you are and how dishonest they are. In fact, don't tell me anything. Show me your evidence, and I'll make my decision. Here is a constructive suggestion on my part: Create a website that gives your evidence in an orderly and well-documented fashion, and then post links to it. If you did it that way, you'd be able to make a more credible case and you'd spare yourself the trouble of having to convince people like me one-by-one.

Willy,

>I hope you'll understand my skepticism toward someone who sets forth an alternate version of reality, including pointed accusations concerning the motives of those he disagrees with, based on "private information" that he freely alludes to but does not disclose. This isn't personal on my part, Harry. For all I know, you're absolutely correct. But my instincts are flashing a red light here.

Like I said earlier...you can choose to either believe me or not...that's up to you.


>Why not? You've impugned their motives in a very direct way. You
ought to be willing to back up your allegations.

I know what they did and how they went about doing it. They know what they did and in this particular incident got caught trying to lie about it. Like I said earlier, I have no intention of relating all the details in respect to the the person who provided them to me.

>Do you have some examples of this? The reason I ask is that you've used a lot of absolutist language about the NMSS and what you perceive to be its motives. Until I can judge for myself, I must say that I'm quite reluctant to believe that the NMSS made "sarcastic and damning statements" about anyone. Do you have some links?

Do I have the newspaper articles from 5 years ago...nope! The information came from one of the people who was attending these seminars and he related the information to me. I could choose to either believe him or not to believe him. Looking at the circumstances at the time, I had absolutely no reason to think that he was making up this story.
I realize that you are having a difficult time thinking that someone in the NMSS could even think about conducting him/herself in such a manner....but believe me Willy, they certainly did! That is one reason that I don't particularly like this organization.

>If what you say is true, then there would certainly seem to be an inconsistency involved. But again, I must say that your approach here has made it really hard to take you all that seriously. A bit of (believe it or not) friendly advice: Back off the adjectives, and give people more nouns and verbs. While I am favorably disposed to the NMSS, I'm not ruling out the idea that they have acted as you think they have, and for the reasons you say they have. However, I'm not going to accept it on the basis of your vitriol; indeed, your bitterness makes your case harder to sell.

I don't know how many different ways I can say this Willy....you can choose to either believe me or not. If you don't want to take me seriously, then please, by all means, don't. I know what happened, how it happened and I've simply related the information. I've got nothing to gain here. But please don't continue to say that yes, I'm not doubting what took place and then in the next breath say you don't believe a word I've said because of the way I'm saying it!

>To put it differently, Harry: Are you trying to persuade anyone of anything, or are you just blowing off steam? If it's the latter, I would like to suggest that you reconsider. After all, you appear to have some serious points to make. Why not make them seriously? I am genuinely interested in what you have to say. After all, I have multiple sclerosis, too, and I am playing for keeps.

Not trying to persuade anyone to do anything...simply telling it like it is. I'm sorry that you don't like the way I am relating the info.

>Time for a reality check, Harry. Your promise of pure motives plus $1.50 will get me a cup of good coffee out here in Seattle. Don't tell me how honest you are and how dishonest they are. In fact, don't tell me anything. Show me your evidence, and I'll make my decision. Here is a constructive suggestion on my part: Create a website that gives your evidence in an orderly and well-documented fashion, and then post links to it. If you did it that way, you'd be able to make a more credible case and you'd spare yourself the trouble of having to convince people like me one-by-one.[/quote]

Your decision is already made, Willy! You have chosen not to believe anything that I have said about the NMSS. That's your perogative. You have tried to say this in a dozen different ways. If you are expecting me to treat this website like a court of law and provide you names, dates, word by word conversation...then perhaps it is you who needs the reality check. I think in the interest of what this forum is about, you should simply not believe anything that I have said about the NMSS and leave it at that. Nothing that I will say is going to change your mind. And nothing that you think is going to change what actually happened Let's give the people a break here and stop trying to convince each other who is telling the truth or who is right or wrong.

Harry

O.K., now that we've mowed down all the tall grass, it would seem that this boils down to something heard at an MS seminar from someone who seemed believable. Good for Harry, but not good enough for me and I suspect not good enough for very many others. Anyone have another rumor to pass along?

Gee Willy, you are starting to sound like some of the people at the NMSS! Their motto...if we ignore it, deny it, twist it and pretent it never happened, then everyone will believe us! I think you would make an excellent employee there...your line of thinking would fit right in.

Harry