This Is MS Multiple Sclerosis Knowledge & Support Community

Seems they are coming thick and fast right now!

I have completed part 2 of CCSVI Who pays for multiple sclerosis research?

You can read it here.

http://ccsvivictory.club.officelive.com ... erest.aspx

I am gathering these articles in a central location, so if you are interested in contributing, let me know!

Vonna

I realize that people here are busy, and you have enough to read already, without ever leaving this site. Sometimes, links can be annoying. However, there have been lots of discussions concerning the true intentions of certain companies and organizations. Many have been questioning whether certain actions are being taken to "slow progression" of CCSVI research and treatment.

I studied this subject in detail. The link is a portion of the result of my study. I attempted to be as factual as possible, rather than just give my opinion. There are references for each statement that is made.

I believe this study has helped me greatly to better understand how things work, and who makes the decisions about research. When it comes to CCSVI, we need to be our own advocates!

Here are the highlights:

1. The Consortium of Multiple Sclerosis Centers is a professional association.

2. A professional association represents the interest of its members.

3. It provides leadership in clinical research and education.

4. Medical personnel rely on this association to obtain their certificates.

5. Members of the CMSC include all personnel that benefit from Multiple Sclerosis patients. This includes pharmaceutical companies and MS societies.

6. Members are involved directly in shaping the future of MS care.

7. Persons with multiple sclerosis are not members.

8. NARCOMS is a patient registry project of the CMSC and is supported by grants from three of the four major pharmaceuticals for MS medications.

9. The CMSC provides its members with a journal that is supported by five pharmaceuticals, including all four major pharmaceuticals for MS medications.

10. The Foundation of the CMSC (FCMSC) has the sole purpose of raising funds for the CMSC. They get their money for scholarships and awards from long standing grant relationships. These long standing grant relationships consist of one not for profit organization, and all four major pharmaceuticals for MS medications.

11. All corporate donors to FCMSC for 2008 consisted of nine pharmaceuticals, including the four major pharmaceuticals for MS medications, two MS societies, and one MS foundation.

12. All individual contributors were doctors, except two. Well more than half of the individual donors were on the FCMSC Board of Governors and/or Board of Directors.

13. The National Multiple Sclerosis Society and NMSS of Canada donated money to this association. Money that was donated to them by pharmaceuticals, well meaning companies, citizens concerned about the individuals with MS, and individuals with MS.

14. The CMSC was organized by neurologist.

15. It has grown to 180 member centers that include the United States, Canada, South America, and Europe.

16. Corporate sponsors (pharmaceuticals) are members of the CMSC.

17. LACRIMS and RIMS are both members of the CMSC, and partners of the CMSC.

18. LACTRIMS is the Latin American counterpart of the CMSC.

19. RIMS is the European counterpart.

20. The founder and past-president of CMSC also serves on the board of the International MS Society and the National MS Society.

21. The CMSC clearly represents the interests’ of the medical personnel and the pharmaceuticals, etc. that are members.

22. We have learned that these professional MS organizations join together from all over the globe so that their voice will be louder.

23. They have annual conferences and congresses where they hold academic lectures about MS.

24. For these annual meetings they invite companies to come and promote their products. The CMSC advertises, “numerous opportunities to introduce your products and services to participants and to improve your visibility in a market that is increasingly competitive.”

25. All “exhibitors” benefit in some way from the MS patient.

26. Exhibitors can pay a fee to have their name advertised, this is called “sponsoring”.
27. The National Multiple Sclerosis Society was the organizing body for the World Congress on treatment and research in MS.

28. The CMSC conveys statements like this in its letters to “exhibitors” or businesses. “We are particularly interested in the future of chronic care.”

29. This is a great business statement, all businesses can dream of the future profits, since MS is a chronic condition.

30. Although there is talk of “research”, these meetings have little or absolutely nothing to do with finding a cure for MS.

31. The National Multiple Sclerosis Society was “proud to serve as the organizing body for the World Congress on Treatment and Research in Multiple Sclerosis.”

32. Again, all four major medications for MS medications are represented here.

33. These pharmaceutical companies are definitely “shaping the future of MS care”.

34. Professional MS organizations represent the interest of their members; which are those that benefit (make money) from MS patients.

35. The CMSC, which is a professional organization founded by seven neurologist and heavily funded by pharmaceuticals, spearheaded the establishment of the MS coalition.

36. The CMSC, MSAA, and MSF are the founders of the MS Coalition.

37. The CMSC has counterparts in many other parts of the country, working under the names of ACTRIMS, LACTRIMS, ECTRIMS, and RIMS.

38. These organizations also play a large part in education concerning MS.

39. MS societies are members, partners, and donors of professional organizations, and vice/versa.

40. “Clinical research” often refers to medication trials funded by the manufacturer of the medication.

Would love to have some feedback here. I refrained from giving my opinion in the study, but want to hear yours!

Vonna

Vonna-
Great work! Many thanks..
I don't have time now to go thru this thoroughly, but get the picture, and will definitely read it later with attention.

I fear this corruption is in every aspect of health--I don't have the particulars at hand, but to be a certified nutritionist, able to receive insurance funding for you consults, you are evaluated by a board, whose members consist of Monsanto and suchlike--so big business, which controls food and farming, decides the rules of nutrition.

Truly scary.

We must be our own healers, educate ourselves. Use drs etc for diagnosis, blood tests, etc, that is, for the tools we can then use to decide what WE want to do for ourselves.

Just found this:

http://blogs.healthfreedomalliance.org/ ... uilt-cars/

Might be off topic and not too serious, but then again, it sheds a light on what you're dealing with... very telling. I really liked it.

Hi Vonna,

You have definitely put a lot of time and energy into your research. It’s kind of ironic because I didn’t read your post until this morning but I went to bed last night with these thoughts running through my brain.

I was thinking about the lack of media coverage on CCSVI and the fact that most of what I read from the MS Societies warns MS’ers to take a “wait and see approach” not to go get tested and certainly not to seek any medical intervention. I have gotten the implied impression through their written and media responses that MS patients have become a “Pain in the Ass” when it comes to CCSVI. I’ve also not wanted to buy into a “Conspiracy Theory” but it’s becoming harder not to. Remember the movie "The Fugitive? With Harrison Ford. It was about corruption in the Pharmaceutical Research Field. It was all about the $$$$$. Makes me stop and think.

I was also thinking about an interview I saw with Lisa Ling on her visit into North Korea. She went in posing as an assistant to an Ophthalmologist, I believe, and she had a “fashion magazine” confiscated when she arrived because “outside Propaganda” is not allowed into the country. She said the No. Korean government controls everything they read & hear. And it got me thinking that here in our own country that could very well happen and might even be happening at this very time. We already know many of our Newspapers and TV stations have political agendas, they are blaringly obvious during election years. In a nut shell if we loose our constitutional rights, we are screwed, people fought and died for these rights!

I’ve read earlier on Tim’s how it is thought that when Dr. Putnam couldn’t cure the venous problems he found at the time through chemical treatment or intervention, his theory just died on the vine and went away. I’m sure that is what some would like to happen to CCSVI, but thank goodness for the Internet, I think there is a way to keep it alive! I think your web site & Tims will be instrumental in that movement!

There was an article I read some months back that had my hackles up. I put a link to it sometime ago on Tim’s, but got no response. I was surprised because I thought at least one or two other folks would be pissed just like me at being a “marketable” commodity!

Examine The Global Multiple Sclerosis Market 2009-2024April 2009 http://www.pr-inside.com/examine-the-gl ... 213395.htm

"The multiple sclerosis (MS) market has total global revenues of over $6bn in 2008. Those revenues will exceed $9bn during the second half of next decade, our new study shows. The World Health Organization estimates that over 2.5 million people suffer from multiple sclerosis worldwide. The prevalence and onset of MS in children and adults is expected to rise steadily. Global sales for MS therapies will rise accordingly, due to epidemiological, healthcare and commercial drivers."

The article is trying to sell their reported findings about:

“This report will provide you with the analytical information that you need to understand current trends and future directions in the MS market area, the successful drugs being introduced and where the future successful growth of the market lies.

The Global Multiple Sclerosis Market 2009-2024 commercially analyses both leading and emergent treatments, with key companies and products discussed comprehensively. In particular, we discuss prospects for the following MS drugs: - Tysabri - Avonex - Copaxone - Betaferon - Rebif.

This report answers those important questions and others, such as how the established MS products will fare competitively in the years ahead. Which will remain the most profitable and how will they be affected by new competition.

Discussion of hot pipeline developments and up-and-coming products Discussion of forces that influence and characterize the market for MS treatments worldwide: * Competitive characteristics of the market * Drivers * Restraints * Strengths, weaknesses, opportunities and threats

Visiongain predicts that total revenues in the MS market will increase steadily throughout the forecast period, 2009 to 2024, with the most substantial growth occurring during a crucial period in the future."

I felt I’d drag the article out and shake it around one more time. I know it’s just Visiongain’s slant on the world of MS, but how can they make blanket statements like these!??!

The prevalence and onset of MS in children and adults is expected to rise steadily.

MS market will increase steadily throughout the forecast period, 2009 to 2024, with the most substantial growth occurring during a crucial period in the future.

Lora

Vonna
Excellent summations of the control pharmas have upon on lives. If Michael Moore ( even 60 minutes) read this and all the Threads and Topics of this forum they would have the makings of an excellent documentary or movie. That would help make the general public aware of our difficult situation and then maybe we could get more support ???
Regards Diana

This kind of stuff makes me feel sick to my stomach. The CCSVI theory has some huge hills to climb. There are too many careers on the line. There are too many people making too much money.

After reading all of this, I find it funny that Dr. O'Connor and Dr. Freedman suggested in the National Post article that Dr. Ziadinov may be in "a conflict of interest" for offering CCSVI testing for a fee. What a joke!!

Thank you shye, I agree that this happens in many aspects of our lives, not just MS. It is scary.

For instance, I know a lot of people are grateful for Tysabri, but I just want them to make an informed decision, and know the risk. For those without the ability to research, it's easy to assume something is safe because it is "FDA" approved. The FDA stated about Tysabri, that people could make their own decision whether the benefits outweigh the risks. Yet, the risks are not properly disclosed.

Why can't we make our own decision whether the benefits outweigh the risks concerning angioplasty and stents? I know it's not quite this simple, but still frusterating.

People need to know the truth about how "the system" works!

Hi cah, I checked out your link, and I loved it! Everything that was stated, I found to be true in my research. The article was great, and I have already posted a link on the site. Thanks

Lora, yes, I know! They can't afford for us to get well! It would be very bad for business. Haven't got to checking out your link yet, but it looks like a good one.

"The multiple sclerosis (MS) market has total global revenues of over $6bn in 2008. Those revenues will exceed $9bn during the second half of next decade, our new study shows.

Lora hit the hammer on the nail.

The present use of DMDs is the biggest resistance to anything that will interfere with the use and growth of future new DMDs. CCSVI has a huge(9bn) headwind to navigate through.

Jim

Lara, your link is great! I am working on posting it now.

Jim, may I use your last statement with the article?
May I use your name?

Broomdancer, who wants to contact 60 minutes?

Vonna,

I finally got the time to sit and read through your entire site, it was amazing. Thank you for your time and efforts so far in pulling this all together in one place. I'll be recommending this site often.

Lora

The FDA stated about Tysabri, that people could make their own decision whether the benefits outweigh the risks. Yet, the risks are not properly disclosed.

Why can't we make our own decision whether the benefits outweigh the risks concerning angioplasty and stents? I know it's not quite this simple, but still frusterating.

Because not near enough is known about the risks of stenting or even ballooning veins at the neck level and above. And what is known is being suppressor dismissed.

Shye wrote:I fear this corruption is in every aspect of health--I don't have the particulars at hand, but to be a certified nutritionist, able to receive insurance funding for you consults, you are evaluated by a board, whose members consist of Monsanto and suchlike--so big business, which controls food and farming, decides the rules of nutrition.

Only 133,000 hits for the phrase "Monsanto is evil." See the documentary The Future of Food and you'll likely agree as well. I had no idea that they were represented in board certification of nutritionists. This is scary indeed!

NHE

PopKorn,
Yes, I agree-I felt sick to my stomach while putting this together.

Lora, You read through the entire site? Wow! Thanks for taking the time to do so, and please do recommend the site.

Let me know when you come across interesting information. Just send me the link, and a little about what you are sending. This goes for anyone who would like to contribute.

Yes patientX, there is not enough known about stenting or even ballooning veins at the neck. However, there is not enough known about the effects of Tysabri after the three year mark. In fact there is very little known about the risks of taking Tysabri for more than three years. What is clear though, is that the longer you take it, the higher your risk. So they are going to let people continue to take it as the "clinical trial". To "see what happens". More and more people are developing PML, because more and more people are hitting that mark of taking it two or more years. In the beginning they only studied it for 18 months.

If people want to take the risk, I understand. Some have to do what they feel they have to do. These people need to be informed, very straightforwardly though, that they are in a "clinical trial" and that the outcome could be death. It's not just 1 in a 1000 that you will get PML. With every infusion, your risks are higher.

NHE, Just goes to show that we have got to be our own advocates here, not wait around and hope, but stay active in this!

Vonna

Here's how we get the media's attention!

I went over to a message board about Biogen's stock, and searched CCSVI. It has only been brought up by one person, ever.

Here was his question:

Should I sell my BIIB shares? If this treatment is widely acceptable, Biogen may be in big trouble.
It is called "Liberation Treatment". According to this MS is a vascular problem.

http://watch.ctv.ca/news/w5/the-liberati...

Also look for Prof.Dr.Zamboni, CCSVI. It looks like it is getting huge interest from the people with MS.

BIIB is the stock symbol for Biogen.

Now, I know that many of you take Avonex and Tysabri. Don't worry, Biogen will be happy to sell it to you no matter what the market does!

If Biogen's stock starts falling, people will wonder why and the world will take notice.

Here is the link to the message board. It would be awesome if EVERYONE could post a comment there, and keep the topic hot! Be sure to rate the comment too, this will help it stay on top.

<shortened url>

Vonna