Everyone should read this link...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby scoobyjude » Mon Oct 16, 2006 8:09 pm

I think that this post has definitely proved that we are all frustrated. Whichever side of the coin you are on, there is no easy answer. But I don't think anyone should quit the board. Whether some of us are overly- pessimistic or over-optimistic (I know I could be accused of this), all of our opinions matter. We all deal with this disease differently. It may drive me crazy when I read posts where people are a complete downer but sometimes I need that to bring me back to earth and make me really think about what I believe to be true. And I hope that it helps to encourage some pessimistic members when positive research information is posted- even though they probably don't want to admit it :wink: We all gain something from a healthy debate. Knowledge is power. (Oh God now I'm quoting the NMSS) I'm not saying that the drug companies are not profit-driven above all else but progress is being made. Deep down we all want the same thing and I hope that we all get it. Because sitting there saying I told you so isn't gonna help any of us. So I choose to believe. If you don't, that's fine. But I hope I'm right :lol:

p.s. Napay you've definitely got some interesting ideas :lol: But I have one question before you elect Bob to office "did he inhale?"
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Postby Lyon » Mon Oct 16, 2006 8:14 pm

oo
Last edited by Lyon on Sat May 07, 2011 10:30 am, edited 1 time in total.
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Postby scoobyjude » Mon Oct 16, 2006 8:21 pm

Bob, I'm sure you were doing it in the name of MS research right! (that's a plausable excuse)

How can we possible make one of napay's plans into a reality when this is what they give us..

Posted on glitterati-

Paula Abdul and FOX teamed up for an eBay auction to benefit Auction Cause and the Multiple Sclerosis Foundation in the hope that the VIP package up for bid (which included two first class tickets to LA, a backstage chat and a taping of American Idol as well as a Rodeo Drive shopping spree in Bev Hills) would generate buzz and at least $26,000.00 bucks, but after four days and no bids, it was a bust and the auction was pulled.

An eBay spokesperson says, "This sort of charity auction usually makes a mint. It’s kind of sad that nobody wanted to bid on Paula."

- Tina
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lol

Postby jimmylegs » Mon Oct 16, 2006 11:08 pm

lol i'm on it re: PR :D let's kick some ass. i'll start writing some tunes so we can have a famous person. :wink:
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Postby bromley » Tue Oct 17, 2006 3:20 am

Bob / Robbie,

My post was not a direct response to your posts and in no way wishes anyone to quit. I was just posting my views based on my experiences. Those who have watched loved ones suffer for decades will have a different view on research and the drugs companies. Those in the progressive phase will again have a different view. I imagine that anyone relatively new to the disease will have a more positive outlook.

There are treatments that the drugs companies will not touch because they are unlikely to be profitable - LDN and abx. But we can't blame drugs companies for this. They are commercial companies not charities. It's the responsibility of Governments to step in where there are such circumstances. And Government and charities are funding trials and basic research into drugs such as Rituximab (trial being funded by NMSS), testosterone, statins, and minocycline. The Canadian MS society is funding a trial of Bone Marrow Transplantation for progressive MS. MS Societies are funding stem cells research into stem cells to replace lost myelin (and a trial in the UK might start within the next 12 months). I think progress is being made behind the scenes and better treatments and quality of life will be seen.

But we must accept that this is a very complex disease and if it was auto-immune it would have been easier to treat effectively. The US Government did not put a man on the moon in the 1950s because the technology and knowledge was not sufficiently advanced at that stage. But we don't blame them, but rejoice when they did achieve it. And this will be the case with MS. The waiting game is the hardest with this disease.

Ian
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exactly my point!

Postby notasperfectasyou » Tue Oct 17, 2006 7:24 am

scoobyjude wrote:Bob, I'm sure you were doing it in the name of MS research right! (that's a plausable excuse)

How can we possible make one of napay's plans into a reality when this is what they give us..

Posted on glitterati-

Paula Abdul and FOX teamed up for an eBay auction to benefit Auction Cause and the Multiple Sclerosis Foundation in the hope that the VIP package up for bid (which included two first class tickets to LA, a backstage chat and a taping of American Idol as well as a Rodeo Drive shopping spree in Bev Hills) would generate buzz and at least $26,000.00 bucks, but after four days and no bids, it was a bust and the auction was pulled.

An eBay spokesperson says, "This sort of charity auction usually makes a mint. It’s kind of sad that nobody wanted to bid on Paula."

- Tina



I'm an Idol Fan. I HAD NO IDEA such a thing was going on. Lousy exposure. This get's back to my entire premise of Bob the Actor.
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Postby Chris55 » Tue Oct 17, 2006 7:53 am

I do not for an instant doubt the sincerety of researchers! That, after all, is their "jobs".

I am going to throw out a story--a true story--and I want one or all of you to put a label on it for me:

Subsequent to the first death from Tysabri, Biogen held off notifying appropriate officials for 3 weeks...giving the Big Boys the time they needed to dump their stock.
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Postby Rita » Tue Oct 17, 2006 9:36 am

I always heard that if you put enough money to investigate something you are going to have the solution, but see folks “Enough Money”, may be MS don’t have that, maybe if some pharma decides to solve the problem is just providing it with this little thing.

The researchers are not the owners of their own work because they are working for the industry and those are the real owners, if they want they put in a desk and wait (some researchers said that they already did with some products). The labs decide what they want people know and what don’t. I’m not against pharmas but I think they don’t do what they ought to. To earn money is good but not the only thing in this world and not the best.

And, what happens about the Michael Moore’s movie? Any problem to get information to finish it?

Lyon I understand you very well, I’m not affected but am worst because I’m mother of one MS affected and maybe we are angry about them more than if we were. Our suffering is deeper.

Just my opinion.
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Broken system

Postby mormiles » Tue Oct 17, 2006 10:56 am

When a system is not serving the greater good of the supposed beneficiaries, it's broken. By and large, the captive MS patient-consumers and their doctors have been snowed and buffaloed. On another forum in response to related dilemmas, I wrote these comments that also apply here:

".....As to your evaluation of the Stratton patent as "altruistic," I have to agree. Thank God for all our sakes that Dr. Stratton did not wait for the standard slothful process of publication in peer-reviewed medical journals. It's that process and the larger oozing process of transitions in treatment that I'm calling into question right here and now. How does conventional wisdom become conventional wisdom? Is the evolution necessarily difficult and protracted? I say it's this simple: if it works and the benefits outweigh the risks, do it. Leave the understnding of all the minutiae and mechanics till later. Leave the proving to everybody and their dogs till later. There is value in exploring the minutiae and mechanics and in establishing universality of acceptance, but in the meantime, withholding knowledge of viable treatment of any illness from people who need it is criminal. We are told that the standard process exists to protect us, but I think it has much more to do with protection of reputations, careers, egos, financial interests, etc....."

".....You meet with these doctors, and they sympathize with your situation. They may be well established and respected by their peers. They might even be personable and compassionate, but the bottom line is that the vast majority of them are in a strangle-hold of accountability to their associates and liability insurance carriers, peer pressure, time constraints, fear of the unfamiliar and of changing course, and manipulated information. In the end, most of them will opt for playing it safe (safe for them anyway)....."

Friends, old adages and cliches are so frequently used because of the timeless truths they offer, so this one comes to mind: There is none so blind as those who will not see. Sadly, one of our worst enemies is the one in the mirror. If that ticks you off, you couldn't be half as ticked off as I am at myself for having fallen for the standard snow job. Yes, I also used to be a believer in "The Emperor's New Clothes."

Cypriane~caregiver and advocate for husband with SPMS who is now on the road to wellness
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Re: Broken system

Postby HarryZ » Tue Oct 17, 2006 11:04 am

I say it's this simple: if it works and the benefits outweigh the risks, do it. Leave the understnding of all the minutiae and mechanics till later. Leave the proving to everybody and their dogs till later.


This is only viable IF the information that you have about a particular drug is accurate and not tainted along the way by those who stand to gain from "bending" the information to suite their needs.

Harry
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Postby HarryZ » Tue Oct 17, 2006 11:39 am

Chris,

I am going to throw out a story--a true story--and I want one or all of you to put a label on it for me:

Subsequent to the first death from Tysabri, Biogen held off notifying appropriate officials for 3 weeks...giving the Big Boys the time they needed to dump their stock.


Yet I have read on more than one occasion from people on various websites that "Biogen was such a responsible company by voluntarily withdrawing Tysabri from the market as soon as they heard about the PML problem." Yeah...right :roll:

Harry
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Postby Nick » Tue Oct 17, 2006 12:07 pm

I have to confess being disappointed by the lot of you. With all the whining about the nefarious motives of the pharma industry no one has mentioned DIRECT-MS.

I have posted twice in the past month about our initiatives to identify the cause of MS here and to determine the levels of toxicity for the potent immunomodulator vitamin D in this post.

Not only are these potential therapies safe, of very low cost and available to everyone but our organisation is a charity with no affiliations. Do we purport a cure? Well cure is a four letter word. Suffice to say I claim that MS can effectively and easily be prevented. And we all know that is worth a pound of cure.

Where were all of you well intentioned critics when these were posted? They have a total of 7 replies and 396 views compared to the 55 replies and 1037 views of this thread. Shame on you and a pox upon your loved ones :wink:

You're not alone in your hypocrisy. This site states...

This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone.
Our only purpose is to serve YOU.


I see plenty of drug related news on the first page but there is no mention of the efforts conducted by DIRECT-MS. Maybe we need to notify Omnicom, Interpublic and WPP to get a honorable mention by ThisIsMS.

Cheers
Nick


DIRECT-MS material

Booklets

Direct-MS produces information booklets on various aspects of multiple sclerosis. These booklets are listed below and a PDF of each one can be opened and downloaded by clicking on the title.
Alternately we can mail you a hard copy of any of the booklets. Just [url="http://www.direct-ms.org/contactus.html"]write[/url]or [email="info@DIRECT-MS.org"]email[/email]us and let us know which ones you would like sent to you. Don’t forget to include your mailing address. There is no charge for this service.

[url="http://www.direct-ms.org/booklets/TakeControlOfMS.pdf"]Booklet #1[/url] [I]Take Control of Multiple Sclerosis
This booklet discusses the main causal factors of MS and, with this information as a guide, it lays out our recommendations for nutritional strategies to help control MS.

[url="http://www.direct-ms.org/booklets/ProtectYourFamilyFromMS.pdf"]Booklet #2[/url] Protect Your Family from Multiple Sclerosis
This booklet emphasizes the high risk for contracting MS of first-degree relatives of persons with MS. It discusses the causal factors of MS with special emphasis on vitamin D deficiency as a primary cause. Finally it demonstrates that adequate vitamin D can likely prevent MS in most cases and provides a recommended supplementation regime.

[url="http://www.direct-ms.org/booklets/AlbertaDisadvantage.pdf"]Booklet # 3[/url] Multiple Sclerosis: The Alberta Disadvantage
This booklet demonstrates that the province of Alberta, the home of DIRECT-MS, has by far the highest rates of MS in the world: Prevalence 340/1000,000; Incidence 20/100,000.
Data and arguments are provided to support the argument that the main reason for the “MS Epidemic” is that all the main causal factors are present in Alberta, with low vitamin D supply being especially problematic.

Presentations

We have found that a Voiced PowerPoint presentation (‘Webcast’) is an effective way to communicate the science and the recommendations for nutritional strategies for controlling MS and preventing it in the first place.

The latest presentation is Prospects for Vitamin D Nutrition. The discussion is narrated by Reinhold Vieth of the departments of Pathology and Laboratory Medicine, Mount Sinai Hospital and Laboratory Medicine and Pathobiology, University of Toronto.

Dr. Vieth addresses the topics of:
Vitamin D and Human Evolution
Clinical relevance of higher vitamin D intakes
Toxicology of Vitamin D

The second webcast is entitled Preventing Multiple Sclerosis and is the second in a series of web casts regarding nutrition and Multiple Sclerosis. The focus of the Prevention presentation is how MS can be easily, safely and inexpensively prevented by focusing on protective factors. This is a must see for those people with MS who have children.

Our first webcast, Nutritional Strategies for Controlling Multiple Sclerosis, addresses similar issues. It presents the probable causes of MS and how to effectively control those elements. A review of the protective factors and how to incorporate them into your lifestyle is also covered.
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Postby raven » Tue Oct 17, 2006 12:20 pm

I'm probably not the only one here who finds your post incredibly insulting.

I, for one, lump you in with all the other whackjobs who believe they have the 'answer'. Perhaps the reason you didn't get all of the reads and responses that you craved are that others share my opinion of you and your 'charity'

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Done Deal

Postby mormiles » Tue Oct 17, 2006 12:54 pm

Nick, I share your frustration with inattention to what works, but remember this please---this site is peopled by those who already have MS or their loved ones already have MS. It's a done deal. Like you, I find myself in a minority position, though not the same one. In fact, as you read the posts, you realize that most of the folks on this site have leanings on causes and treatments or are in a particular "camp" with regard to causes and treatments. Opinions, opinions, opinions...everybody has one. Airing our opinions and sharing information is what this site is about, so chill out. Don't hammer people who don't see things the way you do. If it's any comfort to you, I would venture to say that most of the users here know about the MS-Direct Best Bet Diet and have taken from it what they will, as have I as well.

Cypriane~caregiver and advocate for husband with SPMS (and improving)
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Postby Chris55 » Tue Oct 17, 2006 1:09 pm

HarryZ--I started reading about Biogen/Antegren when my daugther was first diagnosed. I never saw so many red flags in my life! I try very hard NOT to give my daughter advice about "MS"--this has to be HER journey, HER decisions. However...I did BEG her NOT to go on Antegren (now Tysabri). I know just how many bubbles I just burst...but damn, why should my daughter be "first in line" when her case is so incredibly mild right now? She went to her MS-Neuro-Specialist right after I offered my (sage?) advice. Guess what he wanted her to go on--Tysabri! Guess where one of their trials was conducted--by her doctor's practice. She refused--and continues to refuse--to be first in line.

To Nick--and I quote:
"Finally it demonstrates that adequate vitamin D can likely prevent MS in most cases and provides a recommended supplementation regime."

At the expense of coming off as extremely rude and even unforgiveably selfish, my MS focus is not on "prevention"--IT IS ON CURE--OR STOPPAGE! The previous poster on this thread is correct--as a mother, this journey has been beyond agonizing! I would gladly suck up every MS problem my daughter has if I could! I've lived my life--3 kids--I've done my thing! I want HER to "live"!

Besides the obvious problems, this disease has almost destroyed her marriage (diagnosed 1 week after husband returned from Kuwait.) They were newlyweds for god's sake! It almost cost her her business (owns her own dance school--when word got out, over half her students quit, including her neuro's 2 kids!) She is (physically) and emotionally gorgeous! She exudes LIFE!

So selfish me...I want help for HER. And I must admit...ALL of you! We all have such tragic stories..you're damn right we are ready for something MEANINGFUL. I think we have all waited LONG ENOUGH!

Now--what can we do????????????? Maybe I could get on Bill O"Reilly's show--LOL!
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