letter writing to the National MS Society

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letter writing to the National MS Society

Postby billf » Thu Sep 23, 2004 7:21 am

Given all the developments in the MS world over the last year, and the National MS Society's lack of attention to them, I felt compelled to shift my contributions sent to the National MS Society over to the Boston Cure Project and the Canadian MS Society. So when their most recent request for money came I responded with a letter about my decesion. I also thought I'd share this letter with you. I think it is high time that we all start putting pressure on the organizations that have a ton of resources to stay objective and focused on good science and efficient progress.
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To whom it may concern,

Please save your money on stamps, envelopes, publications, etc., take me off of your mailing list, and do not expect any more financial support from me until you demonstrate that you are more open-minded about new MS research and more purely dedicated to progress in understanding the disease.

All of my MS charity (not a small amount) is now being directed to the Canadian MS Society and the Boston Cure Project. I suspect you are seeing a dramatic decrease in personal contributors overall recently. If you haven't already, you soon will. I am actively involved in the MS community throughout the country and I can see this trend emerging. These contributors are redirecting their contributions for the same reasons I am.

For your sake, I hope that you have someone high up in the organization that is keeping abreast of the changing winds in the MS community. MS victims and their loved ones are starting to reach a threshold of being sick and tired of funding the large pharmaceutical companies who cannot get out of the 50 yr. old mindset that MS is purely an autoimmune disease modeled perfectly by EAE in mice. Such funding has produced nothing but the CRAB drugs whose ability to decrease lesion-load and relapses by a small amount may be unquestionable, but whose ability to affect the long-term progression of disability is totally unproven. Don’t get me wrong here – the CRAB drugs were not a waste by any means. The knowledge gained through their development and use is extremely valuable. But it is time to move on!

Due to the enormous information-sharing power of the Internet, cutting edge research results, trials results, news, personal stories, etc. are now informing the MS population such that we are rapidly changing the way we are managing the condition. It used to be that we went to the neurologists (who recently started pushing the ABC drugs) and took their word about the disease, and how to treat it, at face value. Not anymore! The information available now via the Internet is allowing people to literally embarrass their neurologists' lack of current knowledge of the disease. Granted, there is a ton of garbage on the Internet. And particularly for a relapsing illness such as MS, promising snake-oil claims can be made easily. However, an astute Internet user who has been in the MS world for more than about six months can eventually find the reputable sources of info and focus in on those.

Out of this wave of information some significant trends are emerging:
1) Recent (impendent) research in MS is calling into question the age-old theory that MS is primarily an autoimmune disorder. (I don't need any footnotes here unless you have been completely isolated from the research world for the past two years). This is a huge pill to swallow for the National MS Society and for the makers of the current MS therapies who have so much resting on this old paradigm. Meanwhile, the Canadian MS society is funding clinical trials of minocycline and finding great results. Unfortunately for the big drug companies it's already an approved drug so there's no money to be made.
2) Recent (independent) research in MS is calling into question whether MRI results and relapse rates are correlated at all to long-term disability progression from MS. Another huge pill to swallow for the CRAB makers since the "effectiveness" of their therapies is predicated entirely on relapse-rates and MRI results.
3) The process of Drug-Company-driven clinical trials in all areas of medicine is undergoing intense scrutiny due to concerns over SSRI anti-depressants. Evidence is emerging on how much company bias (thus, bad science) is able to make it all the way through the FDA approval process due to the subjective filtering of positive and negative results.

How does the National MS Society fit in to all of this? It is increasingly clear to the MS community that the MS Society is being driven heavily by the big four pharmaceutical companies (Teva, Biogen, Serono, Berlax). This can be seen by a careful review of your budget, and a less than careful review of your attention to new developments that run contrary to the interests of the big four pharms. It is wise for the Society to be resistant to shifting course on every new unexpected research finding, or each new (un-proven) claim of a potential cure. Nothing would ever get accomplished with that approach, obviously. On the other extreme, getting stuck in a rut is also detrimental to progress. If we are ever going to make real progress in understanding the disease, not just improving a few percentage points each year in decreased relapsed-rates, it is necessary to balance a stable inertia with an open mind to the growing body of reputable, independent conclusions suggesting that we may have been looking at things incorrectly all these years <sacarsm>Hey, how about funding a new 3-year trial for Avonex combined with Copaxane AND Rebif where the Avonex dosage is reduced by 1/3 and the Copaxone and Rebif dosages are reduced by ½. Or how about yet another 4 year trial for a new drug that is slightly better at reducing neutralizing antibodies in Betaseron</sarcasm>. It’s time to move on folks!

Until the National MS Society can prove that it has the real interest of the MS community first (not second behind the large pharmaceutical companies), you will see a steady decline in your contributions from people directly affected by MS. Why now? Because we are arming ourselves more and more with information about MS from sources other than the neurologists and the National MS Society, and seeing other reputable MS organizations taking a more efficient, unbiased approach and making faster progress.

Finally, I hope this letter can be received constructively. It is not an angry tirade from a single frustrated individual. It is attempt to constructively express the growing sentiment of the entire MS community, passed to you in hopes that you will ultimately begin to acknowledge the new developments in the science of MS. We need the resources of the National MS Society. But we need them to be working with pure, objective motives in the right directions.

Thank you.
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Postby Xenova » Thu Sep 23, 2004 7:40 am

Awesome. I doubt they will respond but if they do, please post their response here.
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Postby BioDocFL » Thu Sep 23, 2004 7:52 am

I believe similar letters should be sent to some of the other big 'autoimmune' disease organizations in the US. They have become ossified.
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Postby OneEyeBlind » Thu Sep 23, 2004 11:18 am

Billf,

BRAVO!!

Very well orchestrated! I think your letter definitely touches on a lot of good points.

Please post the reply if or when you receive one.
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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Postby Daunted » Thu Sep 23, 2004 3:24 pm

Nicely done.

The Internet is a problem for all authoritarian medical professionals who see the patient-doctor relationship as hierarchical. I don't believe in this paradigm, and neither does my GP, but specialists (especially neurologists) probably see it as a way of life. They are not used to being challenged.

The Internet is going to change all of that, and they need to get used to it. If they oppose LDN or antibiotics, they need to be ready to explain why. But for the moment, you pegged the truth- they haven't even heard of this stuff yet.
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Postby marshalls » Thu Sep 23, 2004 5:14 pm

Excellent letter!! I wrote a similar letter about 8 months ago and called my local chapter to discuss their lack of action. I have not gotten any response! So doubt you will get any either!
All that I can say is hurt them where it hurts and they will have no choice but to evaluate their stance on current research.
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Postby Shayk » Thu Sep 23, 2004 5:28 pm

Bill

My comments echo the previous ones...to my letter I will also add and ask what's happening with the $1 million anonymous donation they got for gender research earlier this year. Nothing related to that immediately caught my eye on the Research Projects update NMSS issued yesterday. :roll:

Great job Bill...Thanks!

Sharon
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Re: letter writing to the National MS Society

Postby HarryZ » Fri Sep 24, 2004 5:39 am

Billf,

Very nice letter!!

If history is followed, the reaction from your letter by the NMSS will likely be "no reaction". The NMSS shys totally away from any kind of action that questions their organization and its policies or actions. They will fight anything like this behind the scenes, but not publicly. That attracts too much attention and they don't like their applecart upset in any way.

You may get a very generic response from them, totally ignoring your concerns. I hope that if you get any kind of response you share it with us.

Harry
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Postby CCmom » Fri Sep 24, 2004 11:36 am

Wonderful letter, Bill. I agree with the sentiments you expressed totally. I'm ashamed that I never thought of doing it myself. But I will. Thanks for the "nudge"!

Take care!

Kim
Kim R.
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Great letter...

Postby JoyceF » Sat Sep 25, 2004 8:04 am

Wow Bill....great letter. I couldn't have said it better. In fact, this is the way I wish I could express myself. Mind if I use parts of it in any future correspondense that I might have? I recently got a call for a donation to the MS society and I told them point blank that all of my MS donation money would be directed to LDN research.
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Postby billf » Mon Sep 27, 2004 6:57 am

Joyce and all,
feel free to use any/all content of my letter in your own letters. The more letters the better! Please do express your frustration constructively. Thanks.
Bill
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