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 sound
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