This Is MS Multiple Sclerosis Knowledge & Support Community

nor is the US NMSS. What's up with that?

I'm speechless! I'm only beginning to ponder of the implications of this research.

How will this new info be used/abused by the neuro community? The MS community? The MS charitable community? Governments who fund these drugs? Etc etc etc...???

Might it be a blessing in disguise for CCSVI (no more resting on the laurels of DMD's as a reason to dismiss CCSVI)?

Can you imagine being a Neuro who has pushed these drugs and bought pharma's (or bought the pharm(a)...depending...) spin all these years, pushing, cajoling, intimidating MS patients to take them???

Us...yes US. Wow. We swallowed the %30 thing for years even tho' we knew it "little better than placebo." It was the only choice we had. Now we find out that the powers that be (not to mention pharma) knew that not only may the CRABS not be helpful, they may actually be harmful. When did they know? What did they do when they knew?

I literally feel sick to my stomach. Seriously. I think I may have done my last injection of Avonex Wednesday night. I dunno.

WOW.

take care all,
Hope

I always though these drugs were pretty worthless. I have PPMS ans so had a good excuse to never take anything. I wuldn't touch tysibri. With no drugs at all, I did pretty well, still walking without a cane after 35 years. CCSVI gave me the first real hopefulness, and now that turns out to be correct.

With the CRAB drugs now officially de-bunked, it will be ineresting if the MS societies finally, FINALLY put their full effort into vascular research.

Thank God fo Zamboni and the CCSVI discovery!!!!

BooBear wrote:What would make it really sweet would be proof that the pharmas overstated the efficacy of the drugs.

How much more proof do you need? This was a well designed study, with a huge, 5,000 plus sample, run over seven years!

The results show CRAB drugs do more harm than good.

Brian

Everyone here is demanding that CCSVI be given immediately, and upset because docs won't do it. Part of the answer is in the posts here.

"lawsuit, lawsuit, lawsuit....."

This is a HUGE reason why IRB's are reluctant and cautious. It can't be both ways. Threaten lawsuit over everything and then get mad when docs and hospitals are afraid of lawsuits.

Personally I want to know how this ONE study shows one thing when a ton of others show the opposite.

mmcc wrote:
Personally I want to know how this ONE study shows one thing when a ton of others show the opposite.

Most studies MS patients see are funded by the drug companies themselves. The ones that have been independent, like this one in the UK and the Cochrane Review, tend to show unimpressive efficacy of the CRABS. Check out the lousy results from Cochrane...
http://www2.cochrane.org/reviews/en/subtopics/79.html

It's a real problem, and this report in the BMJ states it pretty clearly. The drug companies had a conflict of interest...they were making money off the NHS, and didn't want to divulge the real results of MS progression in patients on their drugs, so they stalled...for years. Now the info is out, and it's not good.

I want to read the full report and see the breakdown of the results by drug...but believe it or not, the drug companies can actually stop that research from being published. What they couldn't stop was the purse holders at NHS from saying, "Your drugs are worth 0."

Treating CCSVI is vastly different...venous congestion and stenosis is a recognized entity. It should be repaired. We do not know what the end point is for MS patients, but leaving truncular venous malformations untreated can be a recipe for real illness. Very different than taking a drug for a disease of unknown aetiology.
cheer

mmcc wrote:Personally I want to know how this ONE study shows one thing when a ton of others show the opposite.

If you go to the original publication in BMJ, check out all the links to "references" and "relevant articles".

Interesting stuff: http://www.bmj.com/cgi/content/full/340/jun03_1/c1672

Brian

LR1234 wrote:Maybe or their own DMD's don't do much but once they are coupled with fixing the CCSVI issues (they were tested on purely immune system issues as in the EAE model) maybe they will be more efficient????

My thinking is the opposite. If CCSVI is truly a major contributor to MS, then once a patient gets Liberated, it seems to me you would want your immune system working at 100%, to help recover from previous damage, instead of having the immune system suppressed by a DMD.

Brian

From the New York Times magazine:

"This is our country on drugs. You can bash the "big pharmaceutical companies" all you want, but their products are among the most popular around. We can now treat arthritis, balding, impotence, depression, obesity, not to speak of cancer, heart disease, diabetes, in ways that were, only recently, a matter of science fiction. In the last 10 years, with the possible exception of information technology, no industry has more thoroughly transformed our lives. Calculating the economic benefits of this is impossible -- but think of the new antidepressants alone. If you know one person whose life has been overhauled by a stabler supply of serotonin, the "happy" chemical in our brain, then imagine the impact multiplied by millions. Or consider protease inhibitors. Thousands of H.I.V.-positive people are now contributing to the economy who might, without the drugs, be dead, sick or draining resources in hospital care. Perhaps it takes seeing the transformation in your own life to fully appreciate what drugs can do for the society as a whole."

I am not saying there is not greed involved. There is(see Vioxx). I do find it funny I have been on this board many years and before the CCSVI craze there was not a lot of posts regarding the sinister pharmas. Attacking the corruption of some of the pharmas is not going to make a stronger case for the "liberation" procedure.

Scorpion,
Maybe not conspiracies, but the pharmaceutical companies are at the forefront of MS research as donors to the MS Societies and major universities. These companies and their representatives make important decisions on where research dollars are allocated. In the UK, CCSVI will not even be considered or looked at, because Dr. Alastair Compston- chair of the recent UK drug fiasco- has said so.

Professor Alastair Compston, Head of the Department of Clinical Neurosciences at the University of Cambridge and winner of the 2007 Charcot Award for a lifetime achievement in MS research, is one of the MS Society's six medical advisors.

He said: "The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.

"People with MS are unlikely to benefit from treatments that dilate blood vessels."

link to UK MS Society press release

And there were lots of posts on pharmaceuticals lack of independent review since the beginning of TIMS, prior to CCSVI --that's how I learned about the Cochrane Review.
cheer

MMCC

I'M from Canada. Here we don't ''lawsuit'' as you do in the state. We have a different medical system than yours... When a canadian is cling for a lawsuit... it is not the same song than when it is an american.

CCSVI as nothing to do with drugs.... it is a condition. That can be tested and mechanicaly treated.

Do you seriously think that we have to be quiet like a beaten child....in front of this historical scandal?


Without any fear....

i repeatit for you...

As a very peacefull canadian, someone who trusted the medical system enought to shoot herself for eight years with a medication that worth nothing but destroyed my life......


LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT!

Barbara from Canada the contry where we usually dont sue anybody!

exept when it is the time!

AND NOW IT IS THE TIME

babiezuique wrote:MMCC
Do you seriously think that we have to be quiet like a beaten child....in front of this historical scandal?


Without any fear....

i repeatit for you...

As a very peacefull canadian, someone who trusted the medical system enought to shoot herself for eight years with a medication that worth nothing but destroyed my life......


LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT LAW SUIT!

Barbara from Canada the contry where we usually dont sue anybody!

exept when it is the time!

AND NOW IT IS THE TIME

I feel it is time to post a quote by Karl Marx but I will resist(no pun intended). I am sure history books will rank the CCSVI scandal right up there with Watergate and the Catholic Church sex abuse scandal. Be quiet like a beaten child? Wow, that is intense.

I have forwarded the link from the BMJ to the MS Society of Canada asking for their response to this news, and commenting that it would be beyond ironic that neurologists are cautioning against moving too quickly on CCSVI while simultaneously prescribing drugs that may be worsening the progression of MS.....

Is this news the tip of the iceberg or is it strictly a ploy to lower costs?...why wasn't the study on which the report was based released??...surely there must be additional studies out there that follow up on the efficacy of the interferons ??

Richard

is this information totally reliable?....is this BMJ widely read....don't know anything about it....would doctors in Canada and U.S. read this?

Four years ago I was on 0 drugs. Now the list of drugs is so long I keep a record sheet so I can keep track of them all. My antidepressant, that I take at double the recommended dose, doesn't keep me from being depressed. The vicodin and fioricet have never helped my headaches. Now I am on gabapentin for my headaches and I just took a fioricet, and guess what ?? I have a headache, LOL. Oh, and the Lunesta (talk about an expensive drug) and Xanax and doxepin for my sleep ?? Well I have to admit I do sleep now but I wake up fatigued. And then there is Copaxone... 7 days a week and I despise it. I despise every happy-face Shared Solutions mailing I get. I despise every "special event" they sponsor and the "staying committed to your therapy" ad sheet they throw into my monthly shipment. Not to say what all this costs. Someone should study quality of life (QOL) in people with MS. I just want to give it all up. Every time I do a Copaxone shot I am angry. Someone is making money from my misery and I feel powerless. Sorry for the rant but my expert of an MS neuro is a drug pusher.

ozarkcanoer