This Is MS Multiple Sclerosis Community: Knowledge & Support

Why has the MS society never publicized the fact that there are many doctors, including neurologists who believe that drugs such as the interferons do absolutely nothing to combat multiple sclerosis?. For about nine years. I was taking beta interferon, a drug, which costs approximately $1700 a month. When I first started taking it, I could walk perfectly well with a cane. Nine years later, I was in a wheelchair. My neurologist at the time, who is the head of neurology at a large Montréal hospital, said that he believed that perhaps the pharmaceutical companies producing these very expensive drugs had manipulated statistics in order to show they did anything at all to combat the disease.

http://www.msdiscuss.com/forum_posts.asp?TID=454

The simplest answer to your question is "politics".

You have to understand that the MS Society, pharmaceutical companies and the MS docs are pretty much integrated with one another and have been for several years. The drug companies advertise in and support the MS Society to a large degree. The docs use the medications that are supplied by drug companies and often are involved in the clinical trials with these very drugs. That means grant money for the trials which extends beyond the cost of conducting the trials.

So you can see that each relies on the other and have done so for a very long time. There is no way that the docs will publicly discredit the drugs and the MS Society certainly won't bight the hand that feeds them. My wife, (who had MS for 37 years and passed away almost 3 years ago) was told by her neurologist ( she was a nurse and he trusted her a lot) in 1997 that in general, the docs were very disappointed in the ABC drugs at the time. They weren't doing what the drug companies stated they would do for MS. This neruo, who was involved in the trials for all these medications, would never say something like that in public for the very reasons I mentioned above.

Critics of the CRAB drugs today have written several papers on their ineffectiveness and that the statistics have been manipulated to make them appear better than they are. Of course, that brings on a lot of debate and defensive responses from the drug companies, docs and MS Society.

There is a lot of money involved in these MS medications and to ensure that revenue continues, you will see the benefactors circle the wagons to protect themselves. Don't forget, big pharma is big business and has little if anything to do with the health of MS patients.

Unfortunately, this is how it is and it won't change any time soon.

Harry

Harry,

I think you are being way too unfair!

Neuros and MS Society execs have lots of commitments - mortgages, school fees to pay, golf club memberships, expensive wives - you name it. Whilst everyone knows MSers already have nothing. Why on earth would you want to change all this and upset people?

Phil

I can answer that. For some reason some people on this board think that by discrediting the MS Society, neuros, etc. it will make this whole CCSVI stuff more real. Glad you have it all figured out Harry.

You're spot on, Scorp - everything is linked to CCSVI......no question.

Harry's been bashing on about neuros and drug companies for years, so he obviously knew CCSVI would be coming along and he was just preparing the groundwork for a tussle between CCSVI and the MS establishment.

Phil

Simple Brainteaser. Look who posts about the evil neuros, pharmas, etc. MOST of them are the same people who have convinced themselves that the liberation procedure somehow actually liberates people.

Yeah, I guess sometimes life is unfair....somebody has to pay for those expensive memberships and good times!

Harry

Gee, never thought about that angle but hey, sounds good!

Did hear the other day, however, that the Province of Saskatchewan, which has the highest rate of MS in Canada, is going to include medical coverage for the CCSVI procedure for MS patients. This is a first in Canada. I bet that really ticked off a lot of established MS docs and the MS Society of Canada!

Harry

Yep. I bet they are losing a lot of sleep.

Harryz--
Nice to see you, sir... as someone who watched his wife deal with MS for almost four decades, and ultimately lost your life partner to this disease-- I think you deserve some props.

When Harry wrote about Dr. Hinton Jonez and histamine and corruption in pharma, a lot of us took notice and did our homework. Here's a classic Harryz post on pharma from '04...(you always did like to stir the pot

http://www.thisisms.com/ftopict-250-.html
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Some of the MSS officials seem to take hefty pay cheque. How can we expect a humane face to the society when people are there for money. Its really appalling ..

I have MS.
I have been incredibly fortunate in that my particular form of MS has responded to treatments well.
I take Rebif - it cut my relapse rate from every 6-8 weeks, to 4 in ten years.
I'm really thankful that it's done this.

But, I also force myself to take a lot of exercise, which improves my circulation, eat a Primal diet and take LDN + supplements.

I still consider myself to be fortunate as I'm still walking and haven't progressed much since 2000. That's because I've always recovered from relapses.

I hate stress. I really get ticked off by being lectured and told that what I take is worthless. I get even more ticked off when this is from people who don't have MS.
That's just my own view.
What I do believe is, that MS is an incredibly complicated disease. It took a few years to get my symptoms under control and for five of those years I rarely left my house.

It took my throwing everything I could at it. Again, I'm lucky. The other ways to get things under control worked.
I'd like to be tested for CCSVI, but I'm too poor. I live in hope that my very nice neuro here, will mention it at some point.
Where I live though, we have socialised healthcare. You get what is budgeted for.
He doesn't/isn't allowed to accept backhanders from drug companies. He had to ask for funding for me to get back onto Rebif after I moved here and then ran out of it and had a huge relapse.

I really, really get ticked off when people who don't have MS think that it's simple to fix and who like to stir things up. It makes me feel stressed and that doesn't help and it isn't fair.

I have a massive amount of respect for Cheerleader. She's my heroine and I hope that I can present some good research from the new group to my neuro and that he'll get me tested.
I can wait and I'll keep reading and reading.

But you see, for some people the drugs work.
This whole 'they don't work because so and so wrote it' is about as valid as my writing that for me, I haven't progressed because a)I'm lucky and b)Rebif has worked.

But please, please stop stirring it up just because you can - you people who don't have MS and who don't have transient symptoms caused by stress?
I know this won't work. But I had to write it.
xxx

we have CRABS which are dont seem to work on most of the people but not many pharmas report that. And most of the neuros are too happy to push these to patients.

On the other hand, its not even an year since ccsvi started and one Dr was honest enough to openly admit that ccsvi does not work on 1/3 of the patients.

It does not take a rocket scientist to figure out who is playing dirty game for more than 2 decades and which Dr community feels for the patients ...

neurologists have made a nice living pimping for drug companies . ccsvi will ruin it.