This Is MS Multiple Sclerosis Community: Knowledge & Support

cheerleader has posted a link to an article in a British newspaper.......is this now proof that these drugs don't work...that it was just a whole sham....I feel sick to my stomach........it's on CCSVI in Multiple Sclerosis Facebook page

Can you show the link?

LINK

Funny how when I was first DX, I felt OK until I started taking Rebif injections - at the insistence of my neuro., of course.. I can't believe I made it a whole year on that crap before I quit...

I'm

are they useless or what.....has everyone been duped?

From what I understand, the drugs were just less effective than originally predicted. The NHS had an agreement with the drug companies that if the drugs did not perform as well as predicted, then they would not pay the entire cost. Once the study came back that the drugs were less effective, NHS should have paid less, but they continued paying full price.

The article doesn't say the drugs are not effective, they are just not as effective as predicted.

another source: http://www.eurekalert.org/pub_releases/ ... 060310.php

Edit: The financial times paints a bleaker picture:

http://www.ft.com/cms/s/0/f37adede-6f2e ... abdc0.html

Which 4 drugs?

I believe the study was for patients on any of the four CRAB drugs. But not entirely sure.

Avonex, Betaseron, Rebif, and Copaxone....

Here is the full paper on the BMJ site....

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

Patients on the drugs did worse than the untreated control group---



I'm sorry, but can we just say, to quote Dr. Freedman, WHOA!!!"
I'm kinda sick to my stomach. Read the whole paper.
cheer

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

One of the articles goes on to say that the drugs treat lesion formation, but not disease progression.

read the BMJ paper I linked...it has all of the facts reported, and is not a newpaper's take on the information. Just read what doctors are telling other doctors about the efficacy of MS drugs. It is eye-opening.

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

Obviously these drugs aren't cure all medical pills. People are researching avenues that they think seem significant. It is unfortunate that people have to beef up their claims in order to get funding for things. Richard Feynman in, 'Surely you're joking, dr. feynman" tells a story about some astro-physicists studying something or other, made a bogus claim about the possible applications of their research on distant stars or something. When he asked them why they said such obvious bullshit, they said, "well then we wouldn't get any money." That's the problem with all of this and I think that problem is called Capitalism (not to say i advocate state socialism or anything like that.)

Actually, concerned, I agree--capitalism is a problem when companies make money off diseases. In this case it was a socialist medical program that uncovered the truth. Because most drug trials are funded by drug companies, the true efficacy of these drugs is often overstated.

The NIH did its own study, since it was shelling out the pounds to pay for the CRABS, and found out that the drugs were worth NOTHING, since patients on them did worse than the controls. Now the NIH is upset, because they were ripped off. But as MS patients and caregivers understand...there's more than money involved in this saga. MS patients have been really ripped off.
cheer

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

Thanks Cheer
I found this very interesting from the article.
MONEY, MONEY, MONEY

" The independence of this group is questionable. When established it had three independent members (the chair, a biostatistician, and a non-aligned industry figure) plus a representative from each of the health departments, the Multiple Sclerosis Society, the Multiple Sclerosis Trust, and the Association of British Neurologists.

The last three of these had appealed against the ( the National Institute for Health and Clinical Excellence) NICE recommendation not to use these drugs.